THE LIBRESSE

#PAINSTORIES AROUND THE WORLD FROM EXPERTS AND PATIENTS CONTENTS 1. Background 4

2. A note on language 6

3. Acknowledgements 8

4. Gynaecological Conditions: Statistics and Facts 10

5. Barriers to Seeking Help 14

6. Experiences of the healthcare system 21

7. The Healthcare System: Measurement of pain 27

8. Individual patient journeys 30

9. Diverse groups 36

10. Impact of pain on women’s lives 40

11. The role of good language in pain 45

12. Women’s Pain Metaphors and Descriptors 48

13. Pain Dictionary 57

14. Conclusions and Implications 59

Appendix 63

Sources 70 1. BACKGROUND The Libresse Project Report Objectives menstrual dysphoric disorder (PMDD) • Two had primary painful sex – typically less associated with conditions: dyspareunia, Essity’s #wombstories campaign has This report collects women’s stories physical pain. vulvodynia opened up representations and and their subjective, visceral • Three had other conditions conversations around the rollercoaster definitions of their pains in ways we’ve The three stages of research including polycystic ovary women go through that are still never heard before. It has three comprised: syndrome (PCOS), pelvic experienced in silence. Part of the further objectives: inflammatory disease and pre #wombstories launch invited women Stage 1: Desk research menstrual dysphoric disorder to share their experiences. Many • To identify cultural codes and (PMDD) women gave poignant testimonials of behaviours across markets on the Stage 2: Qualitative research painful experiences that needed to be subject of pain interviews with experts to Running the global project, heard. It became clear that, from • To interrogate the existing understand the cultural context and moderation in English and analysis period pain to endometriosis, medical systems put in place to codes. We interviewed 33 experts were the responsibility of Steven Lacey polycystic ovary syndrome, measure pain across the regions, including: and Zoë McQuillin of The Outsiders. vaginismus, adenomyosis, fibroids, • To help show how doctors and ovarian or cervical cancer, pain during patients could benefit from the • Seven senior gynaecologists Non-English moderation of and after birth, painful sex due to use of more honest, creative • Five gynaecologists / other interviews and additional input was vaginal dryness around menopause and empathetic language experts in endometriosis conducted by: and so many more experiences, there around pain • Six sexual health experts, are so many sources of pain for including sexologists, researchers • Tatiana Dvenadtsatova, Salt women that are under-spoken about, Background to the research and authors/advocates in the Research, Russia under-listened to, under-estimated sex-positive movement • Vanessa Vallenilla, Latin America and/or under-diagnosed, with The report is based on findings from • Five psychologists • Shaghaf Abusamra and Maha disastrous consequences for their three stages of research that were psychoanalysts Dabbour, Insighter KSA, physical and mental wellbeing. conducted across six regions of • Three physiotherapists Middle East the world: specialising in female pelvic pain • Felicia Schwartz and Rachel What’s more, when it comes to pain, • Three semioticians Wang, China Insights, China the traditional system is often limited • Latin America (Colombia, Mexico • Two experts in racial disparity and Malaysia to a numerical scale of 1 to 10, whereas and Argentina) • One neurologist pain is by essence anumerical, too • Russia • One general practitioner Recruitment of participants in the UK, complex to rate and too elusive to • China specialising in women’s health France, Sweden and Latin America was describe. There is a lack of vocabulary • Malaysia conducted by Leftfield. and a lack of culture of analogies and • Middle East (Saudi Arabia All experts interviewed were women metaphors to describe pain that and Jordan) or non-binary. means women aren’t equipped • Europe (UK, Sweden and France) with the right tools to be heard Stage 3: 24 qualitative research and supported. The focus of the research was painful interviews with women living with gynaecological conditions in the painful gynaecological conditions This Libresse Pain project exists not following order of priority: across the regions, some of whom only to give women’s pelvic pain had had taken on an advocacy visibility and create an open culture of • Main priority: endometriosis, role, including: sharing, but to try and help towards adenomyosis, fibroids better diagnosis and better support so • Second priority: dyspareunia, • Nineteen women who had a no woman ever has to experience pain vaginismus, pelvic inflammatory single or comorbid diagnosis of in silence and shame again. disease, ovarian cysts, endometriosis, adenomyosis, vulvovaginal atrophy, vulvodynia fibroids and ovarian cysts, • Third priority: polycystic ovary plus dyspareunia syndrome (PCOS) and pre-

5 2. A NOTE ON LANGUAGE Ingrained gender bias stops women getting the treatment they deserve. But painful conditions affect trans men and non-binary people, too. As does bias.

As a brand, we offer products for anyone who needs them, regardless of how they may identify. And when it comes to language, we are committed to being as inclusive as possible, but appreciate that there are many views that cannot currently be expressed by a common language and we may not get it right for everyone, all the time. We are learning every day.

We have kept the language in this report as inclusive as possible. Some of the research we have quoted did not distinguish on the basis of gender identity and the use of the term ‘women’ throughout reflects this.

7 3. ACKNOWLEDGEMENTS We would like to thank the experts who provided us with such valuable insights, and Hannah Marcus and Abigail Mlinar for their input on the findings.

In particular we would like to thank the women who took part in the interviews and shared their, often harrowing, stories of pain so candidly and courageously.

All women’s names and any identifying information have been changed throughout this report to protect their privacy

9 4. GYNAECOLOGICAL PAIN CONDITIONS: STATISTICS AND FACTS “If all the estimated 180 million It takes a long time to reach a the general public. Swedish research on their ability to live their life as women with endometriosis formed diagnosis, and misdiagnosis is rife. identified that13 : they wanted. their own country, it would be the • 80.8% said it adversely affected 8th largest nation, bigger than • According to the Global Study of • The risk of ovarian cancer is their mental health. Russia.” Shannon Cohn, Women’s Health, conducted in 37% higher • Only 16% said they felt in control TEDx Speaker ten countries, two thirds of • The risk of endocrine tumours is of their daily lives. women with endometriosis first 38% higher Gynaecological pain conditions are sought help for their symptoms • The risk of kidney cancer is Between January and October 2019, widespread and their impact before the age of 30, with many 26% higher more than 100 women in the is far-reaching. experiencing symptoms from • The risk of thyroid cancer is UK had taken their own lives due their first period. 65% of women 33% higher to endometriosis.18 Endometriosis with endometriosis presented • The risk of brain tumours is with pain.6 27% higher The economic impact of endometriosis Endometriosis affects an estimated 1 in • On average it takes 7.5 years from • The risk of malignant melanoma is huge. For example, it costs the UK 10 womb bearers during their symptom onset to get is 23% higher economy £8.2bn a year in treatment, reproductive years.1 In the UK, it affects a diagnosis.7 loss of work and healthcare costs.19 1.5 million women - a similar number of According to the American College of women affected by diabetes.2 • A UK study showed that 58% of Cardiology, a heart attack is 62% more Adenomyosis women in the UK had to visit likely.14 There is a higher risk of breast A research study across ten countries their GP over ten times, and 32% cancer in women diagnosed with “We’re in a period of time where we’re in 20133 found that, despite treatment: of women found their endometriosis after age 40, because of recognising that maybe it’s more gynaecologist either unhelpful or their increased exposure to elevated common than we thought. We’re still • 59% of women with very unhelpful.8 endogenous oestrogen.15 in the area where things are evolving in endometriosis continued to have • 68% of women with regards to diagnosis, what it causes, painful periods (dysmenorrhea). endometriosis in the UK were Aside from the physical impact, and what you should do to treat it.” Dr. • 56% continued to have painful initially misdiagnosed with endometriosis affects all areas of life, Cynthia Austin, obstetrician- sex (dyspareunia), of which 80% another condition.9 including work/career, relationships, gynaecologist, Cleveland Clinic, Ohio20 had to alter their sexual mental health and social life. According behaviour in terms of interrupting Endometriosis has a significant impact to Victoria Williams, in a study of 7,000 Adenomyosis is a poorly understood or avoiding intercourse due on fertility and child birth: women across 52 countries:16 condition - reliable data on the to pain. population-based incidence of • 60% continued to have chronic • 30-50% of women with • Over 40% had given up or adenomyosis does not exist.21 pelvic pain. endometriosis experience lost their job because Adenomyosis is often under- infertility10 , and infertile women of endometriosis. diagnosed. Until relatively recently, Endometriosis affects both adults and are 6 to 8 times more likely to • Women lose an average of 10.8 diagnosis was only possible on adolescents. A US study showed that have endometriosis than hours per week due to pain. histologic examination of a uterus 45% of adolescent females with fertile women.11 • Women lose an average of following a hysterectomy. Transvaginal chronic pelvic pain were found to have • A Scottish research study12 £5,757.72 per year due to lost ultrasound and MRI can now help to endometriosis at laparoscopy.4 There suggests the odds of an ectopic work days. diagnose it.22 is a 10-fold increased incidence pregnancy are nearly trebled to • Many women suffer in silence in in women with an affected 1.6% with endometriosis. The the workplace in order to protect • The NHS estimates that around 1 first-degree relative according to a chance of miscarriage increases their jobs and credibility. in 10 women have adenomyosis, familial association.5 by 76%, a premature birth by 26% but around one third may not and the need for a caesarean In a 2020 UK survey of 10,000 women have symptoms.23 section by 40%. living with endometriosis:17 • A UK study suggests that around 21% of symptomatic women People with endometriosis are also • 89% said it affected had a attending gynaecology clinics more at risk of several diseases versus negative or very negative impact have adenomyosis,

11 diagnosed by transvaginal recurrent pregnancy loss and to 34.7% impact on their life in the last • Endometriosis, adenomyosis ultrasound, which increases to in previous fertility treatment failure.27 12 months and fibroids 32% for 40-49 year olds.24 • 14.8% said it had a severe impact • Ovarian cysts • Adenomyosis often coexists with Fibroids • 18.9% said it had • Pelvic inflammatory disease other gynaecological conditions, a moderate impact • Vaginal infections and STIs such as endometriosis (20-80% of Fibroids are a very common condition. • Problems with the cervix women with endometriosis have Around 1 in 3 women will be affected Of these women: • Menopause adenomyosis) and uterine by fibroids at some point in • Pregnancy / post-childbirth fibroids (15-57% of women their lives.28 • 42.9% said it affected their • Lack of arousal and lubrication with adenomyosis also sexual life due to (for example), relationship have fibroids).25 A UK survey of 2,600 women29 found • 27.2% said it affected their problems, depression, tiredness that time to diagnosis can be lengthy, performance at work and previous physical or Adenomyosis has multiple symptoms and women are pushed towards • 27.2% said it affected their mental trauma and a high impact on women’s lives: accepting hysterectomy as a relationship & family • Allergies to spermicides and latex treatment option: • 24.4% said it affected their • In a US study among women attendance at work or university Despite such a long list, more interest with adenomyosis, over fifty • 12% of women surveyed with • 22.7% said it affected is paid to men’s sexual health than symptoms and thirty impacts fibroids took 1-2 years from their social activities women’s. PubMed (a search engine were reported, and all women diagnosis to get their treatment. • 16% said it affected the type of accessing primarily the MEDLINE experienced multiple symptoms. • 70% of women were told about clothes they chose to wear database of references and abstracts The most common symptoms hysterectomy, however only 38% on life sciences and biomedical topics) were heavy menstrual bleeding opted for this treatment. The impact on fibroids on the has 393 clinical trials studying (87%), cramps (84%), and blood • By contrast, the percentage of economy is huge. US studies suggest dyspareunia, 10 studying vaginismus clots during menstrual bleeding women told about other lost work productivity potentially totals and 43 studying vulvodynia. It has (84%). The most common impacts available treatments was much $17.2 billion per annum31, and on 1,954 studying erectile dysfunction.35 were burdensome self-care lower: 47% of women were told average, the work performance of hygiene (71%), and fatigue/low about myomectomy, 54% were fibroid sufferers was impaired 18% of Women experience pain during sex at energy (71%) and leisure/social told about Uterine Fibroid the time, compared to 8% for the different stages of life for different activities.26 The authors noted: Embolisation, and few were told control group.32 reasons. For this reason, the American about pharmaceutical options. Gynecological Association estimates “A literature search revealed a limited • 43% of women were not satisfied Painful Sex (dyspareunia) that up to 75% of women will understanding of the signs, symptoms, with the information about their experience it at some point.36 and impacts of the condition, with little treatment choice. “When it comes to ‘good sex’, women evidence derived directly from women • Over 20% of women sought a often mean without pain, men often • According to the Sexual Advice with adenomyosis. To improve second opinion during their mean they had orgasms.” Debby Association in the UK, sexual management of adenomyosis, it is diagnosis and treatment. Herbenick, professor, Indiana problems affect around 1 in 3 important to understand the • 34% of women were not satisfied University School of Public Health33 young and middle-aged women, experiences of women with with their treatment. and around 1 in 2 older women.37 this condition.” It is difficult to ascertain the incidence • 15% of women have chronic Fibroids have a negative impact in all of dyspareunia (pain during sex) dyspareunia that is ‘poorly Adenomyosis is linked with infertility: areas of women’s lives. A 2009 accurately, as the majority of cases are understood, infrequently cured, survey30 of 1,533 women with a unreported34. Painful sex is associated often highly problematic, A Spanish study of women having diagnosis across eight countries with many conditions, for example: and distressing’.38 fertility treatment showed identified that: • The UK National Survey of Sexual adenomyosis prevalence in 24.4% of • Vaginismus, vulvodynia, Attitudes and Lifestyles found of women aged at least 40 years old and • 53.7% of women reported that vulvovaginal atrophy, those who reported painful sex 22% in women less than 40 years old. their symptoms had a negative vulvovaginitis (7.5%), a quarter had experienced This increased to 38.2% in cases of symptoms frequently or every

12 time they had had intercourse in • Had difficulty refusing sex when the last six months or more. their partner wanted it Around a third of these • Felt inferior to their partner women said they were during sex dissatisfied with their sex life, • Regarded their partner’s compared with one tenth of the satisfaction as more important women who didn’t report than their own painful sex.39 • Felt dissatisfaction with their • The prevalence rate of sex life vaginismus has been estimated • Feigned enjoyment despite pain as 5% to 17%, and it is thought to be one of the more prevalent 42% of the young women interviewed female sexual dysfunctions.40 said they didn’t want to ruin sex for • It is estimated that half of all their partner, 41% said they felt foolish women older than 24 years will to interrupt, and 39% didn’t want to experience at least 1 episode of hurt their partner by interrupting. 22% vulvovaginitis discomfort; of women said they feigned however, some this may be an enjoyment as it was important to be underestimate.41 seen as the ‘ideal sexual partner’. The • 8.3% of women in a test study found that, for these young population experienced women, pain thus became normalised vulvodynia.42 as part of sexual intercourse. • In an American study, vaginal discomfort related to However, painful sex can mean that menopausal changes caused 58% women do interrupt, or avoid sex. In an of women to avoid sex, with 59% American study, 48% of women who finding sex painful.43 suffer from painful sex reported sexual • A cross-sectional study on the dysfunction and decreased sexual effects of childbirth on sexual frequency.48 Of the 1,708 women in the health reported that an UK National Survey of Sexual Attitudes estimated 17% to 36% of women and Lifestyles study who were not reported dyspareunia at six sexually active, 2.05% said they avoided months postpartum.44 24% of intercourse due to painful sex or a fear women reporting dyspareunia at of feeling pain. 18 months postpartum.45

Women tend not to seek help for painful sex. American research showed that only 15% of women who had postnatal dyspareunia (pain during sex) discussed it with a health provider.46

A Swedish study47 showed that a significantly higher proportion of young women who continue to have vaginal intercourse despite experiencing pain versus those who did not:

13 5. BARRIERS TO SEEKING HELP There are many barriers to “Women are always telling me, ‘Pain is pain’, I say, ‘Well, curling up for two II. Societal belief that women must women seeking help for their normal!’ I tell always say, ‘It might be days a month, lying on the floor, not endure pain gynaecological pain. common but it’s abnormal, definitely being able to go to work, that’s not abnormal, pain is never normal.”’ normal’, ‘Oh, it isn’t? Isn’t it normal!?’.” Aligned to the belief that pain is I. Society has normalised (Gynaecologist, China) (Gynaecologist, Russia) normal is the attitude that women women’s pain must endure their pain. There is a push “We believe there’s a delay because “It’s quite common knowledge that from society for women to ‘just get on From periods to childbirth, women’s women think the pain is normal, ‘My women have period pains, ‘Everybody with it’ – keep the pain to themselves pain is seen to be ‘natural’ and mother and my grandmother had the has it, everybody bleeds a lot.’ I think and not bother anyone else with it. As expected. This belief permeates same problem’ and, of course, you’re at one problem today is that many young a result, women suffer in silence. society and is reinforced. much higher risk of endometriosis if girls have very little knowledge about your female family members have it.” their bodies. Many years ago, when “Women either self-censoring, they “I was 17 years old. I developed at 13, (Person with endometriosis, Sweden) you lived closer, perhaps, to another don’t want to attract attention to and at 17 I already had very intense generation, you might have had a themselves, be considered a ‘weakling’ pain. What is seen as normal, here, to “Your mother would say it is normal to grandmother who was very etc. So, women minimise what they are this day, people continue to say that experience pain during your period, interested in you and could tell you going through.” (Person with this is normal, despite that the woman the grandmother would say the same, it wasn’t normal.” (Person with endometriosis, France) was created to menstruate, we are still the doctor too.” (Endometriosis endometriosis, Sweden) being told these pains are normal”. Specialist, France) Leftover perceptions of women being (Person with endometriosis, Argentina) “In school, if a girl comes to you to get ‘hysterical’ regarding their pain means “Often it’s quite hereditary too; for painkillers every month, it’s like, ‘Oh, those who complain run the risk of “This is something that’s really key example, if you had a mother who had well, menstrual pain is not so bad’ and being branded untrustworthy and around this type of pain, that as a lot of menstrual pain and your child in school maybe they don’t notice how irrational. There is a pain gap women, or non-binary people with has menstrual pain, it’s like, ‘Oh, I had this girl is often sick once a month, or between men and women: women wombs, we’re taught to believe that this too, don’t worry about it.’” in work places, people don’t notice. So are far more likely to have ‘pain is normal;’ ‘you get pain every (Gynaecologist, Russia) it’s kind of normal. (Person with physical pain misdiagnosed as a month’, that’s just what you expect, endometriosis, Russia) psychiatric condition.49 50 like ‘sex might be painful’, that’s how it “My mum’s answer was that when is, and I understand why people don’t I got to be a mum, pains will go away The ready availability of OTC painkillers “There is a tendency to devalue go to the doctors.” (Person with because that is what happened can exacerbate the normalisation of women’s experiences, states, and endometriosis, UK) with her.” (Person with pain – if a remedy is available without feelings. It seems to us that she is endometriosis, Argentina) prescription, women may conclude hysterical, she dramatises, she comes Women themselves believe it, and that perhaps the pain/condition is not up with, figured out for herself report that family members, friends, There is lack of education about bad enough that they need help from that she needs to endure.” (Person with partners - and even some in the female pain conditions - women have the doctor. adenomyosis & endometriosis, Russia) medical profession - believe it. not been taught that their pain is real Conditions like endometriosis are and valid. Often, excruciating pain is “If you’ve got an infection, you can’t “People have the general idea that known to affect generations within a explained away as menstrual pain, just go into Boots and buy antibiotics, female patients are more dramatic.” family, but may be undiagnosed, even within institutions that should be you have to go and see a doctor about (GP specialising in women’s which contributes to the normalisation taking care of women, for example it but pain, we can buy a whole array conditions, Malaysia) of pain, passed down from mother to school nurses who give out painkillers, of painkillers within a five-minute walk daughter. Often women internalise and play down the importance of the of the majority of houses, it’s not a III. Cultural beliefs aligning these societal perceptions and dismiss frequency they are needed. problem at all and so, therefore, it’s endurance of pain with strength their own pain, either deciding not to easy to dose yourself up and then you seek help, or delaying it and worrying “‘Oh, this is the way it’s supposed to start to become more used to what is In some countries/regions, such as they’re ‘making a fuss’. be, it’s normal to bleed this much’, ’It’s normal.” (Senior Pelvic Health France, Latin America and Russia, normal to have menstrual pain, Physiotherapist, UK) bearing pain is considered the everybody knows about menstrual woman’s role. Stoicism can be seen as

15 admirable and may be a source feels so good to chat with my friends. infected you! You don’t listen to me!’ them the confidence to seek help. The of pride. At that time, my relationship with So I didn’t tell her anything anymore.” anonymity aids disclosure. my husband was not very good.” (Person with endometriosis, “Pain or suffering still is seen as a (Person with adenomyosis & Saudi Arabia) V. Cyclical rather than continual “woman’s lot” in certain areas. Endometriosis, Mexico) nature of pain means it may Expressions like “you have to suffer to As a result, some kept their pain secret be compartmentalised be beautiful” and a number of However, others felt unable to talk to from partners and others in their lives. demeaning expressions for women anyone – or if they did, found a lack For some women, the worst pain is who are “weaklings”, i.e. complain of support from friends, family “The other day I was going out with mainly experienced for a few days a about pain (douillettes, femmelettes, and/or partners, or even that they my husband and we were in the car month, during their periods. While the chochottes).” (Person with blamed them. and it was a long drive. I felt that I pain is incapacitating during this time, adenomyosis & endometriosis, France) needed to go to the toilet and it is hard once it eases, they carry on with their “I was so shy so I didn’t tell my mum, I for me to put pressure on myself to often very busy lives, and delay seeing “I think it is customary for Russian only visited the doctor after I got prevent urination. I kept reciting Quran a doctor. women to stand pain… “It hurts. Yes, married.” (Person with endometriosis, to save me from the embarrassment all everyone has something that hurts” … Saudi Arabia) the way. He talked to me and asked “Things like endometriosis, because Who is Russian woman? “She stops a me what’s wrong with me but I did they’re cyclical, I think a lot of women galloping horse, goes into a hot bath”, “My sister felt discomfort, but neither not tell him anything. No, I did not get past that bad few days and then this image has nothing to do with of them named disabling pain, neither want to tell him. If I told him, he would it’s all gone and so they carry on their reverent attitude towards your body, of them. [Yet] I was the weak one [in say, ‘You neglected it in the beginning’ lives and then the next one hits and so, towards pain, they are not in line with the family] and she was the strong and would blame me.” (Person with especially if you’re busy, you’re it. “You are for keeping nose to the one. It was like that.” (Person with endometriosis, Saudi Arabia) preoccupied, you’ve got kids, you’re grindstone...” The Soviet and post- endometriosis, Argentina) working, it’s very easy to just keep Soviet understanding that you should Internalisation of society’s perceptions putting it off, and it’s very hard to get be a healthy woman whose duties are “My husband...when I told him (that I’m of female pain and the pressure to to a doctor as well these days.” (Senior to feed everyone, dress, get in pain), he would only say that you endure can lead to other women Pelvic Health Physiotherapist, UK) hammered, put a drunk husband to don’t need to tell me so much about it. being judgmental and unsupportive of bed, and solve all other problems.” You can see a doctor, and I am not a those who have pain. This can again VI. Anxieties regarding the clinical (Person with adenomyosis & doctor, how can I know how to help cause women to question whether consultation endometriosis, Russia) you?... I didn’t dare to annoy him with their pain is valid. my negative feelings. All I can do is Concerns about the appointment with IV. Lack of support from others in take good care of myself and get “Not all women have painful periods, the doctor are multi-faceted: their lives better as soon as possible.” so you hear women saying, “Well I (Person with Adenomyosis & have periods too, why is she making Embarrassment to discuss Some of the women we spoke to felt Endometriosis, China) such a big deal?”…so in this reproductive system pain able to open up to family, close friends misogynistic and patriarchal society, and anatomy and their partners about their pain. “My husband is not very good- women are set against each other so Some of these found them to tempered. He will get angry if I talk to you don’t even have solidarity…there Some women reason that doctors are be supportive. him too much [about my pain]. I am is always another women to professionals and they feel reasonably afraid of him.” (Person with discredit you and say ‘What she comfortable discussing their pain with “When I talked to my friends, and I feel adenomyosis, China) says is nonsense’.” (Person with them. However, others find it better.” (Person with adenomyosis & endometriosis, France) embarrassing to discuss pain in what is endometriosis, Russia) “I once told my mum and she started considered a private part of the body. shouting and was like, ‘This is because Although it should be noted that They may feel self-conscious talking “To make me happy, they [friends] you lend your clothes to your friends women in online communities, in about their anatomy (e.g. using the would also go out and sing Karaoke and you don’t listen to me! One of your particular, are increasingly a source of word ‘vagina’) with a doctor, or talking with me, go jogging, mountain friends could suffer from support for women in pain, and give explicitly about their periods. climbing, anyway. I took time off. It inflammations and she must’ve

16 “It’s not like diabetes, it’s a subject that might be hesitant.” (Person with instead. I have never had support from Elements of shame regarding sex are makes people embarrassed to speak endometriosis, Sweden) any workplace.” pervasive across all countries. about it.” (Person with PCOS, Mexico) Anxiety of receiving medical results The truth, however, is that a whole This may be regarding sexual “I’m quite a confident person, so I was host of employers are completely orientation and behaviour, and in some quite surprised that actually talking There is a fear of hearing ‘bad news’, unsympathetic to the disease, and countries, women having sex before about feminine issues, suddenly I for example finding out they have often dismiss employees because of a marriage. Sex is an area of silence and became a lot quieter, which is odd cancer. Some women prefer to remain ‘poor sick record’.” taboo. It is not publicly discussed. because I’ve had male doctors before, in ignorance. While some women in more talking about other things, and it Barriers to seeking help for painful progressive countries may discuss sex wasn’t an issue but when I started to “I think pain is quite scary to a lot of sex (dyspareunia) with close friends, dyspareunia is one talk about my cycle and things like people because people are worried topic that is largely kept secret. that, it was a little bit more that it could be anything, people Painful sex can present as a symptom uncomfortable.” (Person with expect the worst… What if they tell me of other gynaecological pain “Sometimes my friends come to ask fibroids, UK) something awful?’, it’s the ‘What if?’.” conditions such as endometriosis, me because they suspect that they (Person with endometriosis & ovarian adenomyosis, ovarian cysts and have endometriosis…so they come to “For teen patients it may be harder to cyst, UK) fibroids, as well as a standalone ask me or a friend’s sister might suffer express, the office environment is condition (e.g. vaginismus, vulvodynia). from endometriosis. I tell them about uncomfortable. For adult ones, that VII. Workplace discrimination Our research indicates that women my pain, but I never tell them have already given labour, etc. they feel who experience painful sex are reticent about my sex life.” (Person with more comfortable. For men is usually Some women describe how a to seek help, and even those who seek adenomyosis, China) more uncomfortable. For older gynaecological pain condition help for other conditions such as women, privacy is more important, so diagnosis is not viewed endometriosis, adenomyosis (etc.) find “They also know that you cannot talk there are some barriers, culturally, sympathetically within their workplace. it difficult to mention their painful about it with everyone, because they when the conversation is about the Time legitimately taken off from work sex symptoms. start criticising you and they start pelvis.” (Physiotherapist, Argentina) is viewed negatively both by managers judging you, and, even though you are and colleagues, and their sickness To understand why this is an area of super prepared, the fear of being Embarrassment and fear of record is held against them. As a silence, we need to understand the judged or the fear of being pointed at, being examined consequence, they often struggle cultural context of sex. Painful sex is still being present with the woman, through, trying not to show they are experiences are embedded within no matter how open she claims to be, Some women, especially younger and in pain. societal beliefs and expectations no matter how liberal she feels, she has those who have never given birth, feel regarding sex and sexual pleasure, fear of being judged and the ‘What will concerned about undressing and A participant in research conducted by which inform how women should they say’?” (Gynaecologist, Colombia) being examined by a doctor. Internal the UK House of Commons Digital ‘perform’ their sexuality. To greater or examinations also create fear, both in Engagement Team said:51 lesser degrees across the countries in “Women may feel okay talking about terms of a lack of dignity and the which we conducted the research, the phase after the period…but when it potential pain. “I have to force myself to work even three interconnected issues exist comes to anything like sexual desire when the pain makes me vomit. If I go which impact upon women’s they’ll avoid it, they wouldn’t dare to “There are people who especially are off sick again, I know they will sack me, propensity to seek help from doctors: talk about it, I can tell you. The majority reluctant to being examined. So this has been made very clear. I work will not be open to talk about it and in finally, some people just avoid for HMRC and I know this is a massive • There is shame regarding sex / the rural areas there’ll be zero chance seeing the doctor.” (Person with issue for other members of staff sexuality of people talking about it.” (Person endometriosis, France) as well.” • Women’s sexual pleasure is still with ovarian cyst, Malaysia) not considered as important “They’re afraid of the investigations “My last workplace bullied me and as men’s Society is also responsible for policing with the doctor, lying in the chair and mocked my illness, nothing was done • Many women are not aware that what ‘good sex’ is and how it is done, things like that, it’s not a very nice via HR and I was made to leave painful sex is not normal and what makes a woman ‘sexy’. This thing to do and very young women generates feelings of shame, and

17 women can worry about the size, for the satisfaction of the man more can be pleasurable. There is also a lack These three issues intertwine to smell and shape of their body, which than themselves.” (Gynaecologist, of knowledge regarding the create barriers to seeking help can affect levels of arousal. Women Colombia) importance of arousal, in particular, for dyspareunia: who have painful sex often feel and natural or product lubrication resultant shame about disappointing As a result, some women have never being necessary for comfortable sex. I. Assumption that painful sex a partner. experienced any pleasure from sex, nor is normal: an orgasm – and some women do not “You’d be surprised, some people don’t “There’s just so many things that we’re know they exist. In fact, all that some even know that condoms exist or that Some women are not aware that sex is led to believe about sex, what sex women feel is pain. there’s a method called the not meant to be painful. The myth that should look like, and so when you ‘withdrawal method’, there are so first-time sex is always painful also don’t feel like you measure up to that, “Still some [women] do not know what many things. Over the last 2-3 years primes women to assume sex will be or you’re not having the kind of sex an orgasm is.” (Sex-positive coach, the Ministry has been trying to make painful and it can become a vicious that you see on television…then you writer, Russia) sex education more accessible to circle. This is exacerbated by the focus feel, ‘It must be me, I’m the thing that everybody but it’s still new and on penile-vaginal sex as the norm and isn’t quite right.’ (Person with “I had a part in that book where I told everything takes time.” (GP specialising ideal, which means that women dyspareunia, UK) my story….I said “Wow! If this is in women’s conditions, Malaysia) persevere rather than seeking other pleasure, for me it is not it.”…I wrote: “Is ways of pleasure. Painful sex is also “Lots of people have painful sex this what couples like? Is this feeling “There still is a lot of suspicion, more likely to occur if women do not because they feel like they’re too hairy pleasure?” I mean for me it is not”. apprehension, regarding sex understand the importance (or or ‘it doesn’t look nice’.” (Person with (Person with endometriosis, Argentina) education. When we talk about existence) of arousal/lubrication and dyspareunia, UK) eroticism, or pleasure, when we talk the focus is on male pleasure. This In Latin America, for example, women about sexual response, when we talk assumption that painful sex is normal Although the sex-positive movement are discouraged from asking for what about sexual diversity. Schools they means that women do not seek help is working hard to counter this, and they need during sex. They are continue to give talks about preventing from the doctor. change is taking place, a gender gap expected to be passive recipients. pregnancies, preventing infections, or exists. Historically the focus has been how to wear a condom and how to “Sometimes I get the feeling that some on women upholding morality in “When women are proactive in bed use a condom. So, basically, the women do not understand that it is terms of their sexual behaviour and and take the lead and they tell their schools do not want to talk to children not supposed to be painful, you don’t men receiving sexual satisfaction. partner “I want to do this or that, or I about orgasm and pleasure.” have to have pain while you are having Women’s sexual pleasure is (still) not don’t want to do that”, it’s not well (Sexologist, Colombia) intercourse. I think some of this is considered as important as men’s. taken.” (Sexologist, Colombia) cultural.” (Physiotherapist, Jordan) “Sex education doesn’t mention “There is a gender gap in Russia now in “There are very few men that truly ask pleasure at all, I don’t think I knew “I did suffer from pains but I thought the context of sex between a man and “Do you like it? Are you ok? Are you about it really, so I don’t think it was that this was normal because I was still a woman, well, that a man should have feeling comfortable? Does it hurt?” built into my expectations of sex, new with marriage, I used to ache 100% pleasure, and a woman…they Few men actually do it. They want to people said it felt ‘nice’ but I didn’t during sexual intercourse.” (Person with don’t think too much about women.” come, they want to enjoy it, and are really understand what that meant.” endometriosis, Saudi Arabia) (Sex-positive coach, writer, Russia) not worried if the woman is enjoying it (Person with dyspareunia, UK) or not.” (Gynaecologist, Colombia) “Dominant culture will talk a lot about “Even in social media where I have “‘It isn’t something that women grow penetrative sex as being the baseline, been blocked several times by the Alongside this, sex education in up knowing that they need to be what ‘normal’ sex is…if that’s what platforms themselves… they see it as a schools (when provided) is poor. It prioritising lubrication in order to people are always taught about or it’s taboo when you speak about the focuses on the mechanics and does experience pleasure and so they framed as that’s what sex is, people are female orgasm, or female sexual desire, not broach pleasure. At most, it assume that they’re also supposed to going to assume that that’s the only female satisfaction, it is still seen as a teaches young people how to avoid be well-lubricated and if they’re not thing they should do in order to taboo - and the woman herself says harm in terms of unwanted pregnancy they think there’s something wrong experience sex and so if penetrative “No. I better not go. I will stay like this. and STIs – it is fear-led. This can leave with them.” (Sex-positive coach, sex is painful for you, which it is for a In any case he is satisfied.” They look some young women unaware that sex writer, UK) lot of women with sexual health issues,

18 they think that they can’t have sex at disappointment in them. Most men of sexual relations do you have?’... I which makes them realise they are not all.” (Sex-positive coach, writer, UK) don’t understand that vaginismus is think that it is more shame and alone. This has led to advocates actually a medical issue… they just think I think it is more taboo, definitely.” speaking out, bringing uncomfortable “Women are almost told that it’s going their partner’s being emotional, (Gynaecologist, Colombia) (‘shameful’) topics of conversation to hurt from the first time you have making a drama and all that… I’m about women’s sexual pleasure and sex, you expect losing your virginity to actually surprised because women • Unable to attend consultations bodies into the mainstream. Online be painful. It doesn’t have to be painful, don’t feel the need to fix the problem alone (especially Latin America communities are bringing women who you don’t even have to bleed…I think for themselves, it’s mostly, ‘I need to fix and Middle East) experience dyspareunia together, they then there’s this sense that if women the problem because my husband is are sharing their stories, and beginning start having sex and it’s painful, they’re unhappy with me’.” (GP specialising in In some instances, the male partner to understand they are not alone or like, ‘Oh, but it’s always going to be a women’s conditions, Malaysia) may insist on attending the to blame. bit painful’ or that’s what’s going to consultation too, and speaking for the happen or whatever’.” (Qualitative • Feel embarrassed or ashamed woman. She therefore has no way of “I am in very much a sex-positive researcher with expertise in sexual to discuss sex with the doctor: conveying her truth regarding sex / bubble; sexually I’m not crazy/wild but health/tech, UK) pain to the gynaecologist, unless the the communities that talk about sex, Many women do not broach the doctor insists on seeing her alone. there’s much more openness, so I feel • Culture’s focus on male pleasure subject with their doctor out of a very privileged to be in spaces where leads to women feeling sense of embarrassment. They baulk at “When here, in the first meeting that those conversations do happen and I self-indulgent for seeking help: the thought of speaking explicitly we are having and when the man is think it must be really hard for some about parts of the body or specific present, the majority of times it is the people.” (Person with dyspareunia, UK) Women expect doctors to be sexual activities that cause pain. There man the one that answers… The man, dismissive of their request for help as are taboos around naming the genitals always, always tells you everything is “Since women have more access to the they believe they view their pleasure and sexual terms. perfect. “No, she enjoys it very well. internet now, they read things or their to be irrelevant, and especially versus We both enjoy it. We both have partner looks for research, ‘Look other patients’ health problems. “They don’t address it as an issue, they desires. We both have satisfaction. We what you have is vaginismus’.” don’t know where to go to, because have sexual relations two or three (Sexologist, Colombia) “There is this idea that this topic is it’s not a topic that’s highlighted in times per week.” I turn to the woman futile, that women don’t really have a Malaysia, I’ll tell you that, the whole and she is serious. She does not even In the UK particularly, the idea of ‘good libido…There are these patriarchal taboo about it is that people are just nod with the head… [whereas] When sex’ is slowly being broached within clichés that men need it [sex] but very shy to talk about sex – sex is not we go in [to a private room] and we are sex education. women don’t, so it’s not a problem to something that’s spoken about, now alone, it is when she tells me “No. give up one’s sexual life or not have a especially in the Asian countries – so I do not feel anything. I do not enjoy “’Pleasure’ has started to become a fully-fledged sexual life because that’s their limitation.” (GP specialising it. It is not true, if anything we have topic that schools are open to anyway it doesn’t interest them.” in women’s conditions, Malaysia) sex once a week or once every considering, in the UK more than (Person with Endometriosis, France) fifteen days, and I do not like it. elsewhere, so that’s really cool but, “They are embarrassed to talk with More than pleasure I feel pain, I feel historically, it hasn’t been the case and Women often blame themselves for their primary care physician, they are a nuisance. I do not feel desire.” so ‘Pleasure’, in the education system, experiencing painful sex, rather than embarrassed to talk with their (Gynaecologist, Colombia) is doubly fundamental for women’s believing it is a condition worthy of gynaecologist, they don’t even know sexual pleasure because there’s more understanding, compassion and help. how to bring up the topic to their However, times are changing to be aware of.”. (Sex-positive coach, doctor, so some keep quiet for years writer, UK) Many women only approach a doctor and years”. (Sexologist, Colombia) The picture is not all negative, for help regarding painful sex when it however, as female sex-positive spaces In terms of conditions such as has become problematic for their “I believe that 1 or 2 women out of 10 are opening up, creating conversations endometriosis, women are also male partner. will tell me naturally, but for the rest about women’s sexuality and speaking out in some countries (e.g. you need to ask them intentionally. You addressing shame. The Internet allows UK, France, Sweden, Argentina). They “They come when their partner have to ask them:’ How frequently do women to find information they would are becoming involved in support expresses resentment or you have sexual relations? What type not previously have had access to, groups that fight for women’s rights in

19 the context of women’s gynaecological pain, and they are educating those around them.

“I had to train, to educate my family… my brothers…… I do not usually go alone [to doctor’s appointments] because to me is also part of the education, the education of my partner regarding what happens to me.” (Person with endometriosis, adenomyosis & fibroids, Argentina)

“In these years it has opened up very much. We started about 7 years ago with the women’s group and after us, many other groups opened up in Argentina, which is truthfully great, because almost in every province there is a women’s group in the, of three different denominations, but all that work for this, the broadcasting of endometriosis, right?” (Person with endometriosis, adenomyosis & fibroids, Argentina)

But ultimately, women do not want to fight this fight alone.

“I believe that for this to really reach to that point there has to be a political decision in each country of taking it as a real woman’s problem… In schools, in what is sex education, also to include endometriosis in it, because when you start your sexual life and if you start having pains, well one pathology could be endometriosis. So, it is like a bigger apparatus is needed.” (Person with endometriosis, adenomyosis & fibroids, Argentina)

20 6. EXPERIENCES OF THE HEALTHCARE SYSTEM Once women finally seek help, our which means they cannot explore case, a number.” (Person with and with no discussion regarding their research indicates that they often have women’s lived experiences in full. endometriosis, France) desire to have children. mixed, or wholly negative, experiences during their healthcare journey. “GPs don’t have the time, the average “They lack that empathy, it’s very “The medical establishment is not really GP consultation is 7 minutes, I think it mechanical, ‘If you do this, this will tuned into listening to women…It is a Most of the women who participated is, which is just really hard to put happen, if you don’t then prevalent culture of doctors who are in our research typically had to see somebody at their ease and get down this will happen’.” (Person with always right and do not wish to listen several doctors over a long time period to those sorts of discussions.” (Senior endometriosis, UK) to patients…they get annoyed when before finally getting a diagnosis, Pelvic Health Physiotherapist, UK) women arrive thinking they know a and longer still before receiving “It wasn’t lots of open questions, it was lot.” (Endometriosis Specialist, France) treatment that helped them. Seven For women, this creates the sense of very clinical … Devoid of empathy. I was key issues prevail: being on a conveyor belt, with patients having to ask [about] all the “Most doctors will not take the time to seen as ‘another person with x terminology that was in the report… really ask questions. If one comes for I. Time condition’, rather than an individual ‘What does that jargon actually the pill…they will not present the with a cluster of unique presentations, mean?’, it wasn’t really explained for different types to give the woman an Doctors typically have 10-15 minutes feelings and needs. the lay person… It was very detached, informed choice. The doctor will make (at best) to see each patient. Women unemotional and unempathetic.” the choices in their head…they make feel this does not provide enough time “You don’t have time to express (Person with fibroids, UK) themselves a mental idea of what for them to broach their multiple everything that you feel. I knew they would be best without discussing this symptoms, concerns and questions. had more patients waiting, they had Often women felt the appointment with the patient. They give no options. They describe the appointments as given me the treatment, they focused on the clinician’s perspective There is little discussion. The doctor is rushed, with them not being able to explained what they had to explain of the condition, rather than theirs. the one that “knows”, the patients do discuss everything they wanted. It and were ready to move on.” (Person Women did not feel ‘heard’ or able to not have access to this knowledge and does not create the optimum with PCOS, Mexico) share their experiences. The care was find themselves almost dispossessed space for women to share difficult often not collaborative. Doctors of their bodies.” (Person with information candidly. “I was following a specialist became annoyed if the woman had endometriosis, France) endometriosis doctor at a clinic for a read up about conditions and were “She didn’t have time to talk to me in day and there was a patient every 15 seen to know too much or challenge “I tell you, you realise a lot of times that detail. She just responded to me as I minutes – she told them all the same their opinion. They were chastised for gynaecologists also don’t want talked to her. She only asked a few thing and drew the same sketch. it was asking too many questions, and felt to battle anymore, they don’t want questions - how much was your like a factory production line.” like they were being a nuisance. to dedicate much time to the menstrual flow, how many days was (Endometriosis Specialist, France) patients and they go the easy the menstrual period, and how painful “During that time, I wanted to ask her way, which is to perform surgery.” it was. Then she touched my II. Lack of empathy why I had this disease. She didn’t (Gynaecologist, Colombia) abdomen…asked me whether it hurts answer and said why I had so many here or there... It’s almost impossible The women we interviewed described questions. All I need to is take the Often women’s concerns were treated to talk to the doctor more because a lack of empathy within many medication and follow her instruction.” without tact or compassion, for they are very busy.” (Person with consultations. Clinicians used (Person with adenomyosis, China) example women described being adenomyosis, China) mechanical, jargonistic language and bluntly told they would never have had a clinical, cold manner. They Women felt treatments were children, without any preparation. “There’s no space in those meetings to had their own agenda, rather than recommended without much have that kind of sharing; it’s a short empathetically listening to consideration for their needs or “He asked me, “Why are you here?” I meeting and depending on who you their patients. preferences, and discussion was told him that I did a scan and I wanted get, it wasn’t the best experience for discouraged. For example, women to know the result. He asked me, “And me.” (Person with fibroids, UK) “I saw many gynaecologists and some who had fibroids were often told only why do you want to run this scan?” I were cold, direct, not compassionate, about hysterectomies, despite the told him because I want to get Clinicians also describe feeling under not listening - you are considered a availability of other treatment options, pregnant, so he looked at me and told pressure to get to the crux of the issue, me, “You will never be able to get

22 pregnant because you suffer from doctors appeared bemused. Some role to play in educating patients first thing they do, or the majority of adhesions!” he spoke to me in a very were told the doctor could only about pain and emphasise that what we do is to prescribe her an rude and inappropriate way.” (Person guess what they might have. A few it’s never worth bearing the pain antidepressant to that woman. When with endometriosis & ovarian cysts, felt their clinician had little interest in and that it could be treated.” you are not seeing the cause that is Saudi Arabia) their condition. (Gynaecologist, China) originating that pain, or you are not really paying attention to what that III. Interfere in patient’s social space “There’s a big variation in knowledge “…they say, ‘All women have pain, so try woman is telling you. That is precisely and, perhaps, interest, which is to bear the pain’. (Person with when these diseases prolong and that Women described clinicians the most important thing, from endometriosis, Saudi Arabia) disgust or lack of trust with the transgressing boundaries and making the doctors and nurses and gynaecologist or the doctor of that inappropriate recommendations everybody around.” (Person with “…doctors say, ‘Be patient, you are a patient.” (Gynaecologist, Colombia) regarding their personal lives. For endometriosis, Sweden) woman, you have to endure, you have example, young women were told to to be strong there’… I burst into tears There is a sense that some clinicians become pregnant in order to “…doctors very often try to get rid of when I left this doctor.” (Person with don’t realise how incapacitating overcome their pain or told to find such patients, not wanting to solve adenomyosis & endometriosis, Russia) women’s pain conditions are, and they a boyfriend. their problems, because, probably, downplay their importance and because they cannot help, cannot help The stories women in our research impact. By contrast, men’s pain is “I can recall their “golden words”, how with their knowledge, their experience, shared bear out studies conducted taken far more seriously. they told me that I would remain have no idea how to treat such a over several decades: doctors disabled if I did not have a child in the patient, and what to do with sometimes psychologise women’s “Those doctors don’t think any of them next six months… I was nineteen or her.” (Person with adenomyosis & pain, suggesting referrals to [conditions] is a big problem.” (Person twenty years old then, they told me to endometriosis, Russia) psychiatrists, rather than investigating with adenomyosis, China) start planning a pregnancy. Yes, the physical cause of pain.52 planning a pregnancy and enduring Women in the UK sometimes are not “The woman is placed as “Woman - pain, because this is a woman’s plight, given access to specialist care, as GPs “They would also send you to the Pain: She is crazy.” Or “Woman - Pain: it sounded like this.” (Person with (the gatekeeper to hospital specialists) psychologist, that happened to many Depression.” Or “Woman - Pain: She is adenomyosis & endometriosis, Russia) have varying knowledge regarding of us. In fact, we do an event every calling for attention.” And “Men - Pain: female pain conditions and may not year in March and we have a t-shirt It is like more believable,” because it is “He [gynaecologist] asked what kind of refer on. that says ‘I’m not crazy, I have supposed that men complain less sport I do. I said that I go to the gym. endometriosis’. Many of us were sent from pain than women. When the He said, “Well, go, maybe you can find “The problem with all of these things to the psychologist like saying: ‘Well, man complains about pain it is because a guy there”. That is, you constantly is that most women will go and see aren’t you exaggerating?’.” (Person he is really in pain, supposedly.” here inappropriate comments related a GP first of all and the GP is a with endometriosis, Argentina) (Gynaecologist, Colombia) to your appearance, sex life and health, generalist.” (Senior Pelvic Health they are never-ending…it’s incredible.” Physiotherapist, UK) “If you hear stories from other women… Doctors often say, “Oh, endometriosis, (Person with adenomyosis & generally they went through different everyone has it.”…but not every endometriosis, Russia) V. Doctors reinforce society’s specialists, and they even got sent to woman has endometriosis-associated perceptions that female pain is the psychologist for the issue of pain, painful sensations, that is, this is IV. Perceived knowledge gaps normal and women are ‘hysterical’ and that the pain is normal and also some physiological feature that you are imagining it, and that it that does not apply to everyone.” Many women felt that clinicians did Some doctors collude and reinforce is in your head.” (Person with (Person with adenomyosis & not know enough about women’s pain society’s beliefs that women’s pain is endometriosis, adenomyosis & endometriosis, Russia) conditions. Diagnosis times were very to be expected and endured. Fibroids, Argentina) lengthy for many (up to eight years). VI. Red tape Several of the women we spoke to “Some Chinese gynaecologists have a “I think the great majority catalogues a received differing diagnoses along the similar idea about pain, ‘It’s not a big woman like: “Pain? She must be Health service red tape creates way, histology test results and their pain, don’t make a fuss, maybe just depressed. She must have family problems for women in several of the interpretations were contradictory, and bear the pain.’ I think doctors have a issues. She has too much work.” So, the countries explored.

23 In France and the UK, there can be a In the UK, women perceive different not as many of them – and especially “I know that going to the doctor is long wait to see a specialist – and in qualities of care and treatments not of endometriosis specialist.” dehumanising, which is a really strong the UK the GP is the gatekeeper to offered on the NHS depending on the (Endometriosis Specialist, France) word for it but there is this feeling of this, so solely decides whether the area/health Trust. This can also be a just like, ‘Ah, I went to you about this patient’s pain warrants further result of the need for the Trust to The Healthcare System: Painful Sex really sensitive matter and you didn’t investigation (despite, as highlighted justify using a certain test or treatment. take it seriously and I was really brave above, not always knowing much Although some of the issues are similar in coming and doing that.” (Person about women’s pain conditions), “…having moved to a different area to other female pain conditions, we with dyspareunia, UK) unless the patient pays to sees throughout this period of care, the will explore women’s experiences of someone privately. treatment that I’ve received, compared consulting clinicians regarding painful They shared anecdotes of doctors to where I originally was, has been sex separately, as the cultural context laughing at women and belittling “In this specialised endometriosis really poor…I feel like I’m doing of sex (i.e. shame plus the ‘sex is not their problem. centre in Paris there is currently a 1 year somebody else’s job, whereas my pleasurable or important for women’ waiting time for appointments.” friend, who remained in the same area myth) has a further bearing on the “I did a lot of research about women’s (Endometriosis Specialist, France) and has a similar condition, although doctor/patient consultation. experiences of going to their GPs and her endometriosis was much some were laughed at and some were In Jordan, where medical insurance more severe than mine, her care’s I. Doctors can be dismissive of female told, ‘It will get better when you have operates, referrals from the been brilliant.” (Person with sexual pain children’, I think one person got told, gynaecologist to other departments endometriosis, UK) ‘Having children will widen you out, are not automatically covered, and Women’s sexual pain is not considered so penetration will be much easier’.” interim steps are required which “When I went into one A&E visit…I said to be worthy of discussion or help for (Person with dyspareunia, UK) take time. to the doctor, ‘I need a laparoscopy, my some doctors. They are primed to help endo’s come back and it’s really painful remove pain, but not in the context of Women also report that doctors are “Insurance companies won’t pay for and I have these cysts that are improving pleasure. By contrast, more likely to take their condition physical therapy if the order comes contributing to the pain’ and he said, however, male erectile dysfunction is more seriously if it is impacting on the from a gynaecologist. Once she sees a ‘We only do them as an emergency, if taken very seriously by the medical pleasure of their male partner. This is gynaecologist and the gynaecologist your temperature’s normal, your vitals profession, in fact, there are almost five a recurring theme – women are still says “Yes, the physiotherapy would be are normal, you’re not vomiting, you times as many clinical trials on Pubmed often viewed in relational terms - helpful,” then she has to go to an don’t have any other strange about male sexual pleasure than about whether as pleasure givers or orthopaedic for a quick “what’s your symptoms, so we can’t justify that.’ female sexual pain.53 providers of children for men – rather problem?”, so they can give (Person with endometriosis & ovarian than as individuals who have a right her the referral for the insurance.” cyst, UK) “…pleasure isn’t a priority in medicine to their own pleasure. (Physiotherapist, Jordan) and it hasn’t been historically and I still VII. Cost Considerations don’t believe it is and frequently “They often became more worried if it In China, the government determines people’s desires for good sex are was affecting your partner as well, I how conditions must be diagnosed Where women are self-funding, ignored…the medical professional’s think that was a really big thing, which, and which treatments can be gynaecological care is expensive, and obligation is to give them basic care again, felt sexist…they always worried offered to patients, so clinicians have can be prohibitive. and not help them thrive and I see that about how it was affecting the man limited options. happening a lot, especially in women’s and how that then impacted on the “It costs at least 70 EUR to see a sexual health issues.” (Sex-positive relationship, not, ‘Oh, it’s affecting “Government approves the book, in gynaecologist, but only 23-27 EUR to coach, writer, UK) you, how does that impact the terms of how to make a diagnosis see a generalist. Also, a GP can relationship?’ I think I had one who and give treatment, give the medicine prescribe the pill – so some women Women reported that it took them offered couple’s therapy to talk about for the specific symptoms, so they make this shortcut.” (Person with time to muster up the courage to it but it felt so much like it was about play by the rules and play by the book.” endometriosis, France) speak to their doctor about painful sex, the other person.” (Person with (Semiotician, China) but they were dismissed. dyspareunia, UK) “Yes, not everyone goes to see a gynaecologist. It is expensive, there are

24 II. Clinicians tell women the pain is ‘in women, and even healthcare the Middle East particularly, it is a In turn this leads to an (often long) their head’ professionals like doctors and close-knit culture and women worry fight to gain a diagnosis, where they psychologists, it’s hard for them. Why? that what they say may get back to may have to self-advocate and stand Some painful sex conditions cannot be Because they still do not include in others in the community, leading to their ground. diagnosed by tests or linked to other their curriculum a section on sex.” shame for their husband or judgement pain conditions such as endometriosis. (Sexologist, Colombia) upon themselves, especially in terms “A lot of the people I’ve spoken to, Women feel doctors convey the of painful sex or conditions that when they have gone to the doctors, message that the pain therefore does Doctors may not always feel cause infertility. you need to continually fight for what not exist, they are imagining it. comfortable discussing painful sex and you believe or what you know to be change the subject as a result, or Implications for women going on with your body and that is “Patients go years talking to general dismiss the woman’s concerns. the frustrating element of it, where you doctors, and not getting a diagnosis, As a result of these experiences, actually switch doctors or you go getting tests that don’t point to “Depends on the age of the GP as to women report feeling dismissed, down certain routes which the doctor anything. Vulvodynia, for example, is what they call it and what they think belittled and not believed. It serves to deems, ‘Okay, we have to tick this box not seen in tests…Patients say what about it… And if a GP is not reinforce women’s pain as irrelevant before we move onto this box’ and they feel and are misunderstood. They comfortable in discussing sex and and women themselves as ‘hysterical’. that’s what draws out the process.” need to be listened to and understood. problems around it then often Women can even begin to question (Person with endometriosis, UK) And telling them ‘it’s in your these problems are quite dismissed… themselves and their judgement – head’, it’s terrible for patients.” the conversations are really, really hard wondering if it really is all ‘in Often, they are referred to different (Physiotherapist, Argentina) to have.” (Senior Pelvic Health their minds’. departments, hospitals or specialists Physiotherapist, UK) throughout their protracted journey to “A lot of the time they’re told it’s “I think it’s about not feeling listened to diagnosis, where they have to explain in their heads.” (Qualitative “They don’t want to talk about sex, and not being believed.” (Person with their pain yet again to clinicians who researcher with expertise in sexual that’s the whole thing, because endometriosis & ovarian cyst, UK) may have contradictory opinions to health/tech, UK) they’re embarrassed, they are, the previous doctor. This can leave they’re embarrassed!” (Sexologist, “Well, especially the doctors who tell them feeling confused, despondent III. Clinicians are often out of their Middle East) you that ‘This is all normal, do not pay and exhausted. comfort zone attention, you are all right, there is Some clinicians make inappropriate nothing wrong with you’. You are “You are sent from one office to Female sexuality is not always included comments. Some women advocates always in such a cycle of good and evil, another, you beat off the thresholds of in the training curriculum. As a result, told us anecdotes of clinicians they tell you all the time that you are hospitals, consulting rooms, and very doctors can find it hard to discuss discussing the attractiveness of the making it up and it does not really often this affects your morale, because the subject. patient’s body, when they sought help exist. And you yourself cannot get into it is really hard, very difficult to exist, regarding painful sex. your belly, and you think, ‘Well, maybe work, be in a family, and at the same “This was a presentation I did at the you really make it up?’” (Person with time live through this circle - from one last Sex Therapists Conference, I think “Some got comments about their adenomyosis & endometriosis, Russia) doctor to another doctor in different Spain with Lilly Laboratories did this pubic hair, I’ve definitely spoken to a polyclinic and hospital departments.” research. I think between 8% and 12% few women like that, one said a nurse Women feel that their pain is (Person with adenomyosis & of the doctors ask their patient, be it said she ought to shave her pubic hair.” minimised and pushed back to them endometriosis, Russia) man or woman, about their sexuality (Person with dyspareunia, UK) – that they somehow lack resilience and their sexual relationship. Urologists and need to ’toughen up’. Women’s self-advocacy often has to only ask a man about his erection; they • Some women have concerns extend to researching extensively and don’t ask him about ejaculation or regarding confidentiality “I would tell them that those were then fighting for treatments they desire or about the patient’s partner. and judgements disabling pains. Some would minimise want, as clinicians often don’t mention So, it’s a general taboo. But with it by saying ‘Well, that is common. all the treatments available and are women it’s a more marked taboo There is a concern, especially in more Maybe your degree of pain tolerance is seen to emphasise particular ones. because that veil of mystery and conservative cultures, that the doctor very low. Maybe the issue is that’.” embarrassment that has to do with may judge their sexual behaviour. In (Person with endometriosis, Argentina)

25 “Many young people, myself included, what I had, she told me “Look, here this do independent research, to be able to doctor is a specialist in endometriosis, say, ‘I’ve been researching this and I why don’t you go see him? Tell think maybe I’d like to try this’ or, ‘I’ve him you are going because of me.” read about this and I’m a bit reticent Honestly, he was excellent.” because of xy&z. Can you reassure me, (Person with endometriosis, can you explain?’ I think the reason adenomyosis & fibroids, Argentina) that I’ve got to the point now where I’m probably more vocal when I do see However, a sense remains that women GPs, and I do ask more questions, and I will unfortunately have to brace know it’s similar for friends, it’s just themselves to take on the medical we’re tired of being messed about; you profession, in order to disrupt the get to the point where you feel, ‘I’ve status quo and receive the help and been doing this for long enough and I treatment they need. just want some decent care, that’s what I want and that’s what I deserve’ “If you’re not going to advocate for – right!?” (Person with endometriosis & yourself then nothing will change. ovarian cyst, UK) I don’t want to paint the medical profession as unfeeling or uncaring However, women do not always feel because there are a lot of people who comfortable with self-advocacy or do are very highly qualified and very not know where to begin. They may responsive to patient care but in my find the power dynamic intimidating, experience and in the experience of for example, and experience anxiety at the people that I’ve spoken with, it the thought of challenging perceived feels like they’re diamonds in the rough authority, where clinicians have and you really have to search and find symbolic and cultural capital54 and are the right person who will listen to you.” resistant to ‘share power’.55 (Person with endometriosis & ovarian cyst, UK) Women are very relieved when they finally find a clinician who takes their pain seriously and wants to listen to them. Such doctors are often heard about ‘on the grapevine’ from other women, either friends or via online support groups and organisations.

“I know that a lot of friends have experienced the general dismissive attitude and belittling and when you finally find someone who listens to you, it’s kind of like, ‘Alright, I need to stick with this doctor for as long as possible’.” (Person with endometriosis & ovarian cyst, UK)

“A friend of my husband that was seeing that doctor… When I told her

26 7. THE HEALTHCARE SYSTEM: MEASUREMENT OF PAIN Communication of pain the sensation of pain is different pain in different ways. Women can that”, but it is difficult for them to from one woman to another, and struggle to select a number and worry give a number to their pain.” The International Association for the this measurement system is whether they are giving an accurate (Physiotherapist, Jordan) Study of Pain (IASP 1979) describes probably the most convenient one.” picture of their pain. pain as: (Gynaecologist, China) The scale also does not ascertain the “I would like to immediately identify type of pain, alongside the intensity, in “An unpleasant sensory and emotional Clinicians can see some benefits of the the extremes... you hit your foot, but order to understand the context. For experience associated with actual or 1-10 scale. It is generally considered you still feel your body, something example, a woman might experience potential damage, or described in easy for patients to understand squeezed, you feel some discomfort. Is agonising sharp pain on occasions, but terms of such damage. Pain is always conceptually, and can allow an this already 1 or not yet? And what an ongoing dull ache at all other times, subjective. Each individual learns the understanding of the intensity of pain. does 10 mean? You broke your leg and thus in some appointments she might application of the word through It can be used to understand the you lost consciousness from the shock describe her pain as an 8, other times a experiences relating to injury in trajectory of the condition and the or ... When are you being cut alive? ...If 4. These qualitatively different types of early life.” impact of treatment. For those also you have not experienced this pain may not be picked up by working with the mechanics of the maximum pain, conditionally, nobody clinicians, unless they specifically Aside from the impact of doctor/ body, such as physiotherapists, it can extinguished cigarettes on you when probe, and the drop in intensity might patient power imbalances and cultural be useful to determine how different you are getting acquainted with the (fallaciously) be considered positive. codes that lead to assumptions movements affect the pain sensations, pain scale, so you must somehow regarding women’s pain, pain is which indicates the impact on decide for yourself where you are on “The scale alone doesn’t necessarily difficult to communicate. It is highly daily life. this scale... This is pretty strange to me.” qualify their pain. They tell you how subjective. Inner pain is ‘invisible’ and it (Person with adenomyosis & much pain they have but it doesn’t tell can be difficult to convey how it feels “I have actually found for my patients endometriosis, Russia) you whether the type of pain is to others, or to get others to with pelvic pain that the 1 to 10 scale is changing.” (Physiotherapist, Jordan) understand one’s pain. This can lead to helpful for them on like a session-by- “Amanda Williams, who’s at UCL, has a feeling of isolation, described by session basis, you can see, ‘Oh, when I done a lot of work showing that it Even when it is the main method of Scarry (1985) as pain causing ‘an came today it was 8 and when I am doesn’t work, that people don’t tell you measurement used, clinicians can absolute split between one’s sense of leaving it is 6’. In that sense it is what you think they’re telling you. If a sometimes doubt the high score that one’s own reality and the reality of beneficial”.(Physiotherapist, Jordan) clinician asks you to score your pain patients give, not appreciating that if other person’.56 Women feel that 0-10, a) you’re assuming they have a their patient lives with a high level of doctors often do not seek to “It can be used to evaluate pain in the numerical concept … if you asked me, pain much of the time they have, out understand fully the pain they same person from time to time. If I might just say ‘3’, I don’t know, it’s of necessity, found ways to cope experience. Yet inadequate somebody says they’re in severe pain not my thing, I do words! … so first of or conceal. communication (and interpretation) and then you give an intervention then all you’re assuming that, b) you’re has been described as one of the key afterwards you can say, ‘Okay, but assuming that their pain goes up in “I think it’s used a stick by healthcare contributors to poor or inadequate where are you now?’ and you can see incremental levels that are professionals, to say, ‘They said their treatment of pain (Yates et al 200257). that it’s lower, that’s pretty good.” commensurate with the scale that pain was 8/10 but then I saw them (Gynaecologist, Russia) you’ve presented them. (expert in racial having a cigarette’, it makes healthcare Our research indicates that no one disparity, UK) professionals think it’s a nice solid technique to understand women’s However, there are also disadvantages construct, like you’re an output, when pain is used either across, or within, and limitations which have an impact “When I ask the patient, “From 1 to 10 it’s not, and then when people do countries. However, the 1-10 upon women’s ability to express their how much pain do you have? 1 is no stuff, it’s like, ‘Well, you can’t be in that quantifiable measurement of pain lived experience of pain in a way that pain and 10 is extreme pain and we much pain, can you!?’, not really is prevalent. makes sense for them. First, it is very need to take you to the emergency realising that you live with pain all the subjective – one person’s ‘6’ may be room and even then they say “Ah, I do time” (expert in racial disparity, UK) “I do use the measurement scale from another person’s ‘9’. It also assumes not really know”. Even when you 1-10 because it’s a common system. I that all patients are able to think explain the 1-10 scale to them they The scale does not take into account use it for every woman I see, just as a numerically about their pain, whereas can’t assign a number to it. They say, “It that perceptions of pain differ across basic measurement of pain, because people organise their perceptions of hurts when I do this and when I do the menstrual cycle, with pain being

28 felt less acutely during ovulation and the experience is like when you’re allows women to express their pain in mid-cycle, versus pre-menstruation going through that heavy bleeding, a way that is meaningful for them. The and during menstruation, which ‘Are there any other experiences you’re specialists we interviewed also use affects the number chosen by women. going through?’. Just having some open questions and encourage their Thus, the numbers become arbitrary. open questions would have allowed patients to use their own descriptors me to share…but none of that and language. Physiotherapists, in The scale is also a ‘cold’ and was really explored.” (Person with particular, also use emoticons and unempathetic way of measuring fibroids, UK) descriptors, plus photos of the body women’s experiences. It was and genitals to allow women to point developed by men and tested on men. Boiling pain down to a number to areas that hurt, especially if they feel It does not take women’s preferred diminishes the patient’s experiences. unable to say it or do not know the ways of expressing pain into account The scale is essentially clinician-, rather anatomical language. and shuts down their qualitative than patient-, centred. expressions of pain. “Pictures work, and we have pictures “Especially in vaginismus and of the genitals, where people can “A disadvantage is that it doesn’t endometriosis, the people who talk show you where things hurt, and reflect the entire spectrum of about it, it isn’t some casual pain, you body charts, for the pelvic pain, pain and emotions that women feel… know, the reactions are severe and that all works.” (Senior Pelvic Health it’s a bit cold, no emotion.” when you’re involved in that Physiotherapist, UK) (Gynaecologist, China) community and you’re reading these stories from the women who are “The 1 to 10 scale does not give them a experiencing it on a regular basis, it’s way to describe their pain. It just gives something that completely changes them a way to indicate the intensity of their lives and stops their lives, to ask it.” (Physiotherapist, Jordan) them to rate their pain on a scale from 1-10, it would be rude to even ask, it’s “When I think about the 1-10 scale, I so foundationally disruptive.” (Sex- think that it was just created by a man, positive coach, writer, UK) for a man, and it made sense to them and it’s not necessarily using the Implications for women with thought processes or language that pain conditions women would have used if they were creating it.” (Positive-sex coach, Sole reliance on the 1-10 scale to writer, UK) understand women’s pain reinforces the most negative aspects of the pain Although some women appreciate consultation: that it lacks empathy, and being able to convey the intensity of feels cold and clinical. It does not seek their pain using the scale, they would to understand women’s pain in a way also like to explain their pain that is meaningful for them, but forces experiences in their own terms. They them to use a male-generated can perceive it to be of more use for numerical system that does not clinicians than for them. acknowledge how pain is embedded in the lives of women. “I think it was useful... more for them than for me, to be honest, I mean, just While the 1-10 scale can have a place in terms of relaying the severity of to help understand the intensity of something... At the time it would have pain that women experience, it is vital been good to have been asked what that it is used within a ‘toolbox’ that

29 8. INDIVIDUAL PATIENT JOURNEYS The women who took part in the At the time my doctor didn’t raise the endometriosis. At that point I brought an operating room. This person did not research shared their pain stories with topic of endometriosis, she did not it up, but they never talked about doubt that I had that pathology. us, from the first time they felt pain pose anything to be abnormal, she endometriosis. To them everything He did not doubt, he told me “I really and the journey they went on to find would say that with the hormone pills, was normal… he does some other tests, will know when I open you up, but diagnosis and treatment. These those pains would calm down…she he tells me that to him everything the reality is that the diagnosis of a journeys were often long and never talked that I could have a looks good, but that if I would like we 100% reliable endometriosis is with a frustrating, leaving them in despair at pathology. To her it was normal for me could try a treatment, just like that. So I laparoscopic surgery. There is no times. These are just a selection of their to feel pain when I got my period. tell him that I would like to have a other way.” experiences, in their own words: diagnosis, that I didn’t want to try a The pain continued, and she was fertility treatment just to try. I wanted The procedure confirmed that she Sofia, has endometriosis, Argentina bedbound for at least two days to know what was going on with me. endometriosis and treated it. Almost a month: immediately she found relief from the Age she first experienced pain: So, she went to see another doctor, pain she had suffered for 18 years: 17 years old Years went by, although the pills who did fertility tests which suggested reduced the pain a bit, the pain was all was fine. Again, endometriosis was The first period I had after the surgery I Length of time to diagnosis and still there. The first two days I was in not considered, despite all the noticed a huge difference with what treatment: 18 years bed. I would not get up from the bed. symptoms/signs being present: So, I my pains were since I was 17 years old. change doctors, she does some tests I went 18 years suffering from Number of doctors seen: 5 At the age of 30, she approached on me, all the tests results turn out something that was solved with a another doctor after as she was okay, my husband’s test results are laparoscopic surgery, that you enter in Sofia started her periods at the age of struggling to conceive. The doctor okay. So up to that point the only the morning and leave by the evening, 13 years, and by the age of 17 she was conducted several tests and told her conclusion was infertility, pain when/ and it’s just three tiny holes. It experiencing intense pain during everything was well: during my period, pain during sexual is unbelievable. every period: intercourse. Which are all signs for I bring it up, and the doctor tells me endometriosis to any doctor that has Sofia still struggled to conceive after The pain was my belly and ovaries “Well, but it is too soon, generally knowledge about this disease. It is like this, so she had a second round of hurt, you don’t know how to describe people try for two years,” and I tell her these are the first basic items about laparoscopy surgery for more spots of it. Today I can say, after going through that I would like to start with tests. this illness, and not that I don’t have endometriosis. She still could not a pregnancy, that those were [like] I go through several tests, basic anything going on with me. conceive, and went through several labour contractions every 28 days. Very routine ones. That test called rounds of IVF, but sadly had a intense pains, disabling pains, because hysterosalpingography, they inject you Then she went to see a third (private) miscarriage. She finally managed to they were properly disabling. with a contrast liquid through the doctor, recommended by her friend conceive and give birth to her vagina, and in reality, what they do is who had an endometriosis diagnosis. daughter at the age of 40: She didn’t talk about it to anyone, and see if the liquid circulates and that you By now she had been trying to her mum told her pain was normal: don’t have obstructions. This was all conceive for five years. This doctor As two years had gone by after the this doctor did to me. So, as everything suspected endometriosis and first surgery, I went through the I was 17 and couldn’t talk about this is okay, and to her everything arranged for a laparoscopy to confirm. second surgery, another cleanse was with anybody. My mum would tell me, looks okay. This procedure confirmed Sofia done, and then I started with the and I think every mum would say, “No, had endometriosis: artificial inseminations with the IVF and well, this is normal, it is normal.” In fact, Sofia was not convinced by this, so she after going through three IVFs, with my mum suffered from this, but she went to see a fertility specialist. A I went to the interview with this freezing eggs in total I did six, I had her first pregnancy at 22 years old. friend had endometriosis and said her professional, I paid for the consultation achieved my pregnancy. Overall, I went symptoms sounded similar, so she because it wasn’t covered by my through 12 treatments. At first, I had a She consulted a gynaecologist, who asked the doctor if endometriosis was insurance, it was a private doctor, but failed pregnancy that lasted seven gave her the contraceptive pill, a possibility, but was dismissed: he was the one who diagnosed this weeks, I lost it, I had a natural abortion. assuming it to be severe period pain: person that had told me about this. We Then, at my 40, after ten years of At the fertility doctor, they did some had a two-hour interview and the trying, I managed to become pregnant tests, and they never talked about second time that I met with him was in

31 with [my daughter] who today is 4 point it began to happen more and and enduring pain, because this is a continued to say that this was myoma, years old. more, more and more often. That is, woman’s plight, it sounded like this. there was also an opinion that it is a the intervals between these events rudimentary cancer of the uterus, and Alyona, has nodular adenomyosis, became shorter, and at a certain Alyona tried to put up with the pain, something else, I am not sure. Well, in Russia moment I realised that I was in pain but it was impacting too much on her general, there were several almost around the clock. That is, I was quality of life, so she visited another incompatible opinions and in the end I Age she first experienced pain: under medication all the time. gynaecologist. She had read about ended up with a surgeon in St. 16 years old using the contraceptive patch to help Petersburg, and she said, “No matter She visited a gynaecologist but was the pain, and bought it herself: what is there, you feel very bad, this Length of time to diagnosis and misdiagnosed and kept returning to should be removed. And we will sort it treatment: 12 years tell them she was still in pain: “I bought a hormonal contraceptive out on the spot.” patch, the lightest of those that I had. I Number of doctors seen: 5+ I went to a gynecologist in a private think I told my parents that it was After the operation, she was told she clinic…I was told, “You have some kind prescribed for me, but in fact I read had a nodular form of adenomyosis/ Alyona’s pain started when she was a of neoplasm there.” This was identified something and decided that if I had at endometriosis, and was given teenager. She visited her GP and was as myoma by ultrasound scan. At the least some control of my cycle, it could medication. However, the pain told nothing was wrong. same time, some of the U/S specialists improve the symptoms. That is, I sold returned and she needed a second said that it was a strange sort of this idea both to the doctor and operation, but again the pain returned. I told my parents that I had some belly- myoma - with some liquid inclusion relatives, I was the initiator, and I felt aches periodically. And they said, “Well, body. But this is unusual, there can be better. For a couple of months on And she removed it, and she was the go to the doctor. If it hurts, go.“… I no liquid inside a muscular tumour. hormones, it became calmer. Well, that first to tell me that it was went, the doctor said, everything is That is, they looked bewildered, but in is, more stable, but still there were endometriosis. She said that it was a fine with you. “Well, did you go?” “Yes, addition to everything, myoma cannot shoots of pain.” chocolate-like mass in the wall of the I did.” They said, “OK.” Well, if the hurt, I was also told about this several uterus that they excised, that it was a doctor said normal, then normal. times. They, by and large, treated me However, the pain started again, and nodular form of adenomyosis, which is friendly, but I did not receive any help was more severe, leading to her collectively called endometriosis. They By the age of 18 (ten years ago), she from those visits. And I continued to collapsing in 2013: removed it and prescribed Jeanine was experiencing severe pain on a go there and said: “Listen, well, it [combined contraceptive pill] to me. regular basis, but was given hurts!” Well, like, “I’m not crazy, well, it One day I collapsed after an attack of For a while everything was normal, i.e. no diagnosis despite several hurts. It’s great that you say that in the pain right in front of my parents, after the operation I felt normal, the hospital visits: place where it hurts, there is a benign because before that they knew about things fell into place. But four months formation that shouldn’t hurt, but it this [only] in my words, that I had a later the nodules came back while I In adolescence, in my early youth, at hurts. What are we going to do belly-ache, and then we were driving was taking Jeanine. I had the the age of eighteen or nineteen I about it? in the car for several days to visit my second operation, [but] the pains regularly found myself in a hospital relatives, and they saw that I was also returned. with some pain of unknown origin, Then the gynaecologist suggested she crying, that I turned green and where they made all sorts of checks take some herbs and consider shaking, and I felt very bad. And I was So, she had a third operation to and found nothing, after which they pregnancy as a solution: all wet with cold sweat. remove further nodes, and was given discharged me. Vissane (progesterone therapy), which And then a gynecologist suggested for Her parents helped her to find other seemed to work well: She coped by taking pain killers, but the first time, it seems to me, that I doctors, but despite seeing several, began to rely on them daily: should take some medicinal herbs, she still had no diagnosis. She finally I just feel like something has changed. I Rhodiola algida and Orthília secúnda. I saw a surgeon who operated: went for an ultrasound scan at a local At night it hurt a little, I took something took thought and decided that I would outpatients’ clinic, and they told me mechanically, and in the morning it not take anything and then they told I went to a gynecologist, I went to an that, yes, I had some nodes there… and seemed as if it hadn’t happened. In the me (I was nineteen or twenty years old MRI, I had radionuclide scanning of I went to the surgeon again, we talked morning everything is perceived then), they told me to start planning a stomach and uterine tubes. I was given with her and decided to remove it, and differently. And I did not notice at what pregnancy. Yes, planning a pregnancy different diagnoses. Someone I started drinking Visanne, actually

32 Visanne is a medicine that gave me a Yanmin, has adenomyosis / enlightened me and said that I should examinations first. It’s almost helping hand over many years. I took it endometriosis / dyspareunia, China be more open-minded and not reject impossible to talk to the doctor more for a year, when on Visanne I felt fine, my husband like this. He prescribed because they are very busy. no new nodes appeared, I felt fine, and When she first experienced some lubricating oil. I applied some nothing hurt. A year later, I went off, symptoms: 6 years old ago [lubricant] before intercourse, which I remember that I asked the doctor and everything came back. makes me feel better… The doctor said about when I can recover…she didn’t Length of time to diagnosis and I shouldn’t think about that problem all answer and said why I had so many However, there was still confusion treatment: Various the time, and I should relax. The doctor questions. All I need to is take the regarding her diagnosis as the always tells me to relax, it’s okay, and medication and follow her instruction. I histology result still suggested fibroids: Number of doctors seen: 3 other people have pain too. understand her response because she is very busy; there are many people in It is important to mention that In 2014, Yanmin went to see a Chinese She also went to see a gynaecologist the gynaecology department. according to histology, the first two medicine doctor as she had heavy for tests and was diagnosed with tests, although the surgeons who cut periods with blood clots. She was adenomyosis: When she experienced pain she could me confirmed to me, according to diagnosed with endometriosis and the not speak to her husband, but histology, that I had a fibroid. The treatment was successful: “It was adenomyosis…she prescribed confided in friends: surgeons were left scratching their some medicine, including Chinese and heads, because these were the drugs After some checks, he said that I had Western medicine. I was very worried I talked to my friend about these for endometriosis that helped me, and endometriosis and possibly uterine at the beginning because I have never issues. I was in a dark mood, but I the surgeons saw with their eyes that it fibroids. Then I started to take Chinese heard of the disease before and, it is couldn’t tell my husband. When I looked like a node of adenomyosis. medicine. After half a year, I got better about the uterus…The doctor is very talked to my husband about this, he and got pregnant again. I didn’t plan to nice. She has been trying to comfort didn’t understand, and he didn’t know However, it seemed there was an error have a second child because I was old, me, saying ‘Don’t be afraid, don’t anything. He said that I should go to at the hospital, as she asked another and my health condition was not very worry… You don’t need to worry, the doctor if I had any symptoms, and hospital to check her sample, and, good. The doctor also said that I don’t because you have passed the child- he is not the doctor. I just spared the finally, it was confirmed – in 2016 - that need contraception because I certainly bearing age and you don’t have to give efforts talking to him. Instead, I told my she actually had nodular adenomyosis: won’t get pregnant. However, I still got birth any more’… After seeing the friends. When I talked to my friends, pregnant by accident. The doctor said doctor for almost a year, it has and I feel better. As I understand it, there was some that I was a miracle. improved a lot.” kind of poor laboratory in this hospital, Her relationship with her husband because when I got tired of it all and I I said, ‘I didn’t have this symptom She found that the doctor did not give suffered as a result of the conditions: took the specimens after the next before, why do I have endometriosis her much time in the consultation, nor operation to give them for analysis to now? What to do, how to solve it, will answer her questions: Our relationship was very bad at that another laboratory, the one that the it get better? The doctor said I had too time. During that time, I was sick and surgeons also recommended to me, I many questions, don’t worry, as long as She didn’t have time to talk to me in not in the mood, and he didn’t know immediately had the final conclusion, it I took medicine under her instructions, detail… She only asked a few questions how to comfort me. Anyway, it was a was already in 2016, so I call it the year I will be well soon. - how much was your menstrual flow, mess at the time…He had to take care of diagnosis, I immediately received how many days was the menstrual of our children, so he is not in the the answer that this was a node of Yanmin gave birth in 2016, and in 2017 period, and how painful it was. Then mood to care about me. He also had to adenomyosis. she had discharge, heavy periods and she touched my abdomen (just as the go grocery shopping and prepare dyspareunia. Her husband said she regular gynecological examination); she dinner, so when I told him [that I’m in should go to see the doctor for help also pressed different parts and asked pain], he would only say , ‘You don’t with the painful sex. me whether it hurts here or there. need to tell me so much about it. You After a few times, she said I can go on can see a doctor, and I am not a doctor, My husband thought I was weird. I said and pay for other examinations - how can I know how to help you?’ At it hurts. He said, ‘How come it hurts?’ I vaginal B-ultrasound, a blood test, that time, my husband had to do all said, ‘I don’t know’. He said I should go leucorrhea examination, and a urine the chores, so I felt sorry and didn’t to see a doctor…The doctor test. Anyway, you have to pay for the dare to annoy him with my negative

33 feelings. All I can do is take good care Hala then had difficulty conceiving husband divorced her and she became should wait until after marriage and of myself and get better as soon - she had painful periods, and pain and engaged to another man: then do the surgery which I did. as possible bleeding during sex. She went to hospital for a hysterosalpingography in I got engaged and I wanted to marry After her marriage she continued to Hala, has endometriosis / fibroids / 2006 and was told she would not because the doctor used to tell me have check-ups at the doctor, paid for adhesions, Saudi Arabia conceive due to adhesions, this that the AMH hormone is decreasing by her husband’s insurance. She used eventually led to her divorce three so I have to get married quickly and to go to the hospital for pain injections Year she first experienced pain: years later: have children so I just wanted to get on occasions, including at A&E: Before 2005 married so when a suitable man came The doctor told me, “You will never be to ask for my hand for marriage I got My husband used to carry me like a Length of time to diagnosis and able to get pregnant because you married immediately! young child and take me to the treatment: various suffer from adhesions! ... He spoke to hospital so the pain can go. me in a very rude and inappropriate She was also experiencing very heavy Number of doctors seen: 5+ way and I was so embarrassed so I bleeding, with clots. Feeling that her She was then transferred to a different started crying, when he saw me crying current doctor was not treating her hospital that had different equipment. Before marriage, Hala suffered from he gave me tissues and started talking with respect, she went to see a Here she was told she needed an ‘inflammation and bad smelling properly to me and telling me that I will different doctor in 2010, who advised operation to remove the adhesions on discharge’, but felt too embarrassed to be able to have children through IVF… that she had fibroids and needed an her fallopian tubes. She was reluctant tell anyone: when my husband knew that I will operation: because she feared she would not be have to go through an IVF he thought able to have IVF. I didn’t tell my mum… because I once that this would be a hard thing so he When I used to go visit the [female] told my mum and she started shouting gave up on me and got engaged to doctor I used to wait for her for hours However, the IVF was successful, and and was like, “This is because you lend another woman! I then kept on and even not meet her sometimes and she now has a son. your clothes to your friends and you suffering from bleeding until I got only meet her secretary. She was busy, don’t listen to me! One of your friends divorced. I stayed in my parents’ house performing a surgery, her secretary It was not possible to remove the could suffer from inflammations and for years. used to run the tests for me and then endometriosis during the operation, she must’ve infected you! You don’t call the doctor to prescribe a medicine however she had another operation listen to me!” so I didn’t tell her She then had a hysteroscopy and was for me! I was so annoyed by this one month ago which removed anything anymore. told she had uterine adhesions, treatment, especially that her medical fibroids and some of the fibroids and endometriosis. But she felt examination is very expensive! 400 endometriosis. She is now She experienced pain when having sex that this test was mainly for the riyals! Adding to that the fact that I experiencing early menopause and with her husband for the first time (in benefit of showing student doctors wasn’t getting any better, two years having treatment for a second IVF 2005) and visited a doctor for help as how to carry it out, and she then had have passed by and I didn’t notice any attempt. However, her ovaries have her husband was angry: to repeat everything to another doctor change which forces me to change multiple cysts. She has also followed in a different hospital: I regret this the doctor. up with a psychiatrist due to the The night I was married I wasn’t able to experience, I wasn’t benefited at all! It mental impact: complete the sexual intercourse was only to show the students my I visited her [the new doctor] and we because of the severity of pain! I visited case and the students kept on asking ran some tests and she told me that When I’m 36 years old and I always a doctor for this matter and she gave me questions and I answered them, everything I’m suffering from is hear that I will hit the menopause and me an anaesthetic, I think the sexual the doctors didn’t try to separate the because of the tumour I have, she told stop getting my period while my sister intercourse actually took place after adhesions in my tubes or cauterise me that I have to undergo a surgery is 52 years old and still gets her period being married for 1 month, and when I the endometriosis! and remove the tumour, this was it makes me so mad and sad! God completed the sexual intercourse I exactly one month before my [second] bless her for sure but I start asking started suffering from the She continued to have follow-up marriage so my mother didn’t accept myself, “Why is this happening to me?” inflammation…I was very down and my appointments with a female doctor, to do the surgery before my I honestly haven’t told my husband mind was very busy and I was mentally for endometriosis and thickening of marriage…I told my fiancé and he said about the menopause because this is tired and afraid, my husband was the endometrium. In this time, her that my mum was right and that we my second marriage and when I was also mad. honest with my first husband he went

34 and got engaged again so I won’t expect; I should expect for sex to be helped her. It even left her questioning women end up having a lot of sex that be able to bear my current husband painful and that things would get her own experience of pain at one they don’t entirely want because getting married as well, this way I easier…there’s this feeling that you’re point: It’s one of those things, I guess they’re worried that they aren’t giving would have to marry for the third time! taking up their time and that you’re it’s the same with mental health; if you their partners enough. being indulgent and there’s nothing can’t see it, if it’s not visible, then the Liz, has dyspareunia, UK actually wrong with you, and everyone treatment is so much more difficult, else in the waiting room, they’ve got and I think the doctors really shut off, Length of time she has experienced like broken legs and horrible diseases they’re like, ‘It’s all in your head.’… they pain: 15 years and all that’s wrong with you is this said those words, definitely, you just one thing, so, yeah, just very dismissive, feel like you’re taking them your Number of appointments with GP: 5 I think it was a slightly different quality experience and you leave feeling of care than when I’ve gone in for almost like, ‘Well, maybe it isn’t painful, Successful treatments: 0 other things. maybe I’m not experiencing this?’.

Liz has had painful sex from her first She went back several times to the GP She felt the doctor showed more sexual encounter at the age of 16 years: over the ensuing years and found it concern when she said it was affecting be a distressing experience: her relationship – assuming it was I was 16 and quite head-over-heels in impacting negatively on her male love with my teenage boyfriend and I’ve probably been five times in total partner’s satisfaction: we wanted to consummate our desire but the reason there around huge gaps (!) and I think because it wasn’t between is because every time I’ve left They often became more worried if it happening I was very worried that he feeling really unheard and not listened was affecting your partner as well, I was going to leave me, I thought, ‘Well, to and feeling, ‘I won’t do that again think that was a really big thing, which, if I can’t give him the thing that all the because not only was the experience again, felt sexist, it felt like they always other girls are able to give their in the room upsetting, but now I feel assumed you were in a male/female boyfriends then he’ll go find it like I’ve been wasting their time’. partnership and they always worried somewhere else’ and I think it really about how it was affecting the man can break up relationships. She says that she used her own and how that then impacted on the descriptors to explain the pain to the relationship, not, ‘Oh, it’s affecting you, She felt embarrassed and couldn’t GP. However, she felt she would have how does that impact the speak to anyone about it as she benefitted from the doctor asking her relationship?’ I think I had one who believed no one else had the problem: to point out the areas of pain on offered couple’s therapy to talk about a diagram: it but it felt so much like it was about I definitely never spoke to friends the other person. about it because you have the idea I think one certainly asked me to locate that everyone else is having amazing the pain. I would have always said, ‘At As she found little support or solution sex and so, yeah, it felt like a bit of a the entrance of my vagina, like at the in the medical system, she has instead bad secret and it was quite isolating... bottom of it, it’s probably got a specific turned to educating herself and so it was something that I lived with word, but just at the opening.’ I think it finding her own way through: very privately for a very, very long time. would have been far more useful if they’d had a diagram or something for With it has been a lot more to do with She finally mustered up the courage to me to point to. learning how my body works and speak to her GP after several months, feeling more comfortable with my but felt very ‘dismissed’, as if she was Over the years she has been offered a body and being in relationships that being frivolous: sexual counselling (at the age of 16), feel safer because there is always that transvaginal ultrasound, some fear, I think it’s very difficult to have Initially, I felt very dismissed and very anaesthetic cream, and ointment for this experience in a relationship that much told it was something I should Lichen Planus – but nothing has isn’t supportive and I think a lot of

35 9. DIVERSE GROUPS (NB Expert interviews conducted in delays in treatment for black women . Research by the All Party The ‘stereotype threat’ leaves women Europe and Latin America region) Fibroids, in contrast, are known to be Parliamentary Group (UK) indicates feeling discounted, unable to speak three times more prevalent in black that Black, Asian and mixed heritage about their pain, or at least cautious of Issues of intersectionality – race, women than in white women. As a women feel their pain is often sharing information. They turn away sexuality, gender identify and social result, some black women62 are psychologised by doctors65, for from mainstream medical care due to class – affect the way women are incorrectly diagnosed with fibroids, example written off as ‘panic attacks’. perceived mistreatment.66 treated within healthcare settings, and rather than endometriosis. In the same Medical News Today the diagnoses and treatment they are interview, one black woman was told In March 2020, the RCOG identified given. In turn, this impacts upon In terms of treatments, anecdotal by a male doctor, after a laparoscopy that: ‘Black, Asian, and mixed heritage women’s confidence regarding the evidence63 suggests black women are revealed no sign of endometriosis: women are more likely to experience a medical system, and ultimately more likely to be offered a “What you have done [supposedly lower quality of healthcare compared whether they seek help from the hysterectomy to treat fibroids, versus wasting their time] is serious, and you to white women. This often results in medical profession, or alternatively white women. need to consider if you have poorer health outcomes and reports of endure the pain, self-medicate or turn psychological problems.” In fact, the worse experiences with NHS services.” to alternative practitioners. “A lot of black women will report patient already had a diagnosis of They report continues to say that while fibroids…‘Have a hysterectomy’, ‘I don’t fibroids and had been encouraged to socioeconomics had previously been Women of colour want a hysterectomy’, whereas if you seek a laparoscopy by another considered the key reason for these speak to the very small number of female doctor. disparities, increasingly research Outdated ideas regarding women’s other women who have fibroids, indicates that this is a simplistic pain conditions and race seem likely to they’ve not been offered such a Women of colour are subject to many interpretation. In fact, ethnic influence both diagnoses and dramatic solution to their problem, stereotypes, for black women in disparities have been shown to exist treatments offered to women of they’ve been offered myomectomies particular this is around being ‘strident’ regardless of socioeconomic colour.58 For example, endometriosis or, you know, fancy things with drugs, and ‘difficult’: grouping – that is, they affect Black, was historically deemed a ‘disease of MRIs and things like that, so I think it Asian and mixed heritage women affluent, high-achieving women with does need to be looked into.” (expert “I think the label of a ‘drama queen’ from all groups. private health insurance who have in racial disparity, UK) or being ‘bossy’, etc. is applied much delayed marriage and childbearing’.59 more readily to women of colour, Alongside racial issues, there are also Buttram wrote in 1979: “Typically, our Research indicates that black women’s absolutely, hands down.” (expert in cultural issues which hinder clinicians’ patients with endometriosis appear to pain is more likely to be dismissed by racial disparity, UK) engagement with women presenting have an intense desire to excel. They doctors. In a Medical News Today with gynaecological pain. Culture are usually well-dressed and have trim interview64, black women from the UK “I was noticing this pattern so much, proscribes many aspects of the pain figures”.60 This suggested that women told their stories of being discounted we’d get called up and told, ‘We have experience, such as pain expression, not seen in private medical care rarely by doctors. For example, one woman, such a difficult woman, she’s being the type of remedies used, social roles had endometriosis, by which we might having suffered years of debilitating ridiculous, she’s really hard to nurse, and expectations, perceptions of the infer the supposed rarity among pain and vomiting due to the severity, she’s been in before, terrible’… we did a medical system, when/how/where to women from lower socioeconomic and being continually dismissed by her reflective piece of work as part of the seek help, healthcare practices, illness groupings, including women of colour. doctor, finally queried whether she team… about that issue of this beliefs and behaviours, and receptivity However, research in 1976 had already might have endometriosis or fibroids. perception of the ‘strong black woman’ to medical care interventions. indicated the lack of difference Only then did the doctor consider it, and the need to hold themselves up to between black and white women, and and replied: ‘Hmmm, maybe, as it’s expectations that are not articulated, The Endocul project67 conducted asserted that pelvic pain in black common in ‘BAME’ people’. However, nobody knows they’re there, they’re research with women of African women was misdiagnosed.61 the woman’s pain was still not not surfaced, I think it’s a trope and it’s Caribbean, Chinese, Indian, Pakistani investigated, she was given the pill, culturally embedded here in this and Greek ethnic origin in the UK. The Royal College of Obstetricians and and only much later discovered country. I’d imagine it’s embedded in a They found that women from these Gynaecologist (RCOG) in the UK has she had both severe endometriosis lot of places where there’s been a minorities had experienced cultural shown that this misguided assumption and fibroids. colonial or a history of slavery.” (expert insensitivity or misunderstandings in of endometriosis as a ‘white woman’s in racial disparity, UK) consultations – and often they were disease’, can lead to misdiagnosis and dismissed. Examples included having

37 to ask to be covered when having a In Latin America, nineteenth century certain treatments regardless of their lot, there is a lot of malpractice because bed bath (Muslim women) and doctors racist scientific discourse still heavily needs, and given no choice. there is little supervision.” (expert in dismissing women who do not want influences beliefs. racial disparity, Latam) to take the pill as they believe it is “The consequences of a bias like this in ‘against nature’ (Greek women). “The medical profession in general has a position of power as the medical Doctors have more respect for white Cultural stereotyping is heightened a bias, almost always because in the profession, is that you think that it is in women – they ask them (relatively when women do not speak English 19th century there was sort of like a your hands to sterilise a person without more) questions and give them very well, for example, believing Asian scientific racism, where the racism that their consent, because you know more (relatively) greater choice of treatment. women are subservient and not taking existed before begins to legitimise than they do, and that is a big Social inequalities and the structural their concerns as seriously. through the scientific discourse, which problem.” (expert in racial disparity, power relationship mean that women is seen as an objective discourse but in Latam) of colour do not have the tools or The study also showed that, while reality, it is not.” (expert in racial confidence to ask doctors questions or health professionals are committed to disparity, Latam) Fear is prevalent among patients: self-advocate. They are given no providing care for the individual, they Historical medical experimentation on choice of treatment. do not understand, or incorporate, “The causes come because we all grew bodies of people of colour and the women’s cultural values. For example, up in the same society, like we all heard economically disadvantaged has left “There’s a thing that has come up in for South Asian women in particular, granny saying, “You have to improve many frightened to visit doctors. recent studies or academic works that investigations and treatments can the race,” and things like that, which is the confidence, in the fact that there cause potential problems within their are much more structural aspects…they “There are a lot of women of a low are social inequalities and that the family and community: Virginity is point towards a scientific racism etc.” social class, or Afro-descendant, or doctor is going to answer more the thought to be potentially (expert in racial disparity, Latam) indigenous that because they know questions from the straight white compromised by internal examinations that they have been experimented woman, and the treatment is always (Muslim women); and oral Certain groups, especially indigenous with their bodies historically, their going to be different, or that the same contraception treatment can lead to people, within society are ‘othered’: fathers or their grandmother or person, indigenous or black, doesn’t suspicion of sexual activity (Indian and whatever, they are afraid to go to a have the tools to ask questions about Pakistani women) - pre-marital sex is “Idea of miscegenation, which is this doctor to say “I have this type of this or that procedure, what is this or frowned upon. national precept, there exists a very problem,” because there is a history that problem, and well, the doctor, as specific idea of what miscegenation is/ and they are scared… so, besides they already have this stereotype bias In France, ethnic minority women – should be, I mean the mix between inequalities that come from the system they say “I know what’s best for you, especially black women – face even someone white and someone to the person, the person in itself is trust me. Take this, do that.” (expert in greater bias, especially around the indigenous, almost always the white afraid to access, and is afraid to go to racial disparity, Latam) sexist myths of women exaggerating person had to be man, and the certain doctors due to the history that their pain and being ‘hysterical’, and indigenous person a woman, and their family, their ancestors have gone Women of colour’s lack of knowledge the racist tropes of ‘black skin everything that is outside of that is through, because they think they can and resultant power within the being thicker’: pathologised, or relegated to the be victims of something like that, medical system means they can be margins of society. And that is still a right?” (expert in racial disparity, Latam) given the cheapest (and often less “When talking about pain relevant configuration and organisation desirable or effective) treatments management, the amount of to what we see in Latin America. So Those from rural areas, typically by doctors. painkillers you have to administer, or the indigenous bodies, we do indigenous and poor, can be ‘practice anaesthesia you have to administer to celebrate our indigenous past, but we patients’ for doctors in training, with “This also refers to more capitalist someone, and they consider black do not want the indigenous people errors rife. systems in which if there is a medicine people, or immigrants, as exaggerating alive.” (expert in racial disparity, Latam) that is cheaper and this person doesn’t their pain.” (Semiotician, France) “The majority of doctors that are in the know that there is a medicine that is This discourse and marginalisation, rural areas are young doctors. Doctors more expensive than the other one, “Doctors and nurses think that black along with the symbolic power that that are doing training there and well I’m going to give them the skin is tougher than Caucasian skin, so clinicians hold, means that minority afterwards… they go to the city. So, cheapest one, and generally worse, you have to go deeper, their pain is ethnic patients are in a powerless basically it is how the indigenous body because I’m responding to a medical okay.” (Semiotician, France) position. They are pushed towards is used as a guinea pig. That happens a structural system here. It is cheaper for

38 me to put her the cheapest IUD.” because language is so important, to women that they coerce them into not being subjected to aggression (expert in racial disparity, Latam) make it feel open and inclusive.” taking contraceptive pills.” (expert in and bad treatment.” (Person with (Person with dyspareunia, racial disparity, Latam) endometriosis, France) They are routinely dismissed and advocate, UK) experience disproportionate levels of Other areas of diversity Implications: intersectionality malpractice. As a result, they lose faith “I’m 50 now, but we’re very much in the medical system. trained in heterosexual sex as being Other women we interviewed who Intersectionality increases the the thing and it’s actually surprisingly had taken on informal advocacy roles difficulties women face when seeking “They lose faith in the medical hard to get your head around anything shared their experiences and medical help for their pain. Structures community, that happens a lot. When else, even though my best friend is anecdotal evidence of other types of power mean that women of colour there is really a problem or something lesbian and I’ve got two friends who of discrimination. and those who do not fit into the like that, well, accessibility is a big issue are transgender and have had gender template of able-bodied or because, let’s suppose, you start reassignment surgery, so it’s not as if In France, in particular, disabled heterosexual normativity find bleeding, you have thrombosis, or I’m not familiar with it from a personal women, transgender men and women themselves either having to hunt something like that, if you take long to context but somehow, when you get with larger bodies suffer discrimination down ‘safe gynaecologists’, learn the arrive, I don’t know, like 3 to 5 hours, into the workplace, and because I see a when presenting with pain. Doctors cultural language of the medical well there is a big possibility that the lot of obstetric patients when I do my make assumptions about the desire to profession in order to self-advocate, or bleeding may be strong enough for clinical work, they do tend to be more have children, and women with larger - if they lack the confidence or means you not to arrive on time to the clinic or the male/female classic couple. So, yes, bodies are lectured about their weight to do so – they may fall by the wayside hospital, whatever is the closest to you, I think that’s something that does need being a barrier to conceiving, despite and receive a lower standard of care and that is a big problem. Or, that there challenging.” (Senior Pelvic Health not having raised the subject or for their needs. is a lot of malpractice, that you go to Physiotherapist UK) wanting children. the doctor and they say: “Oh no, that is nothing.” Like, “Go away,” and when Women in female-female relationships “For example, if someone is fat, they you get home well there the bleeding in the UK described doctors discussing will get a lot of remarks from the starts to be very strong, and when you the implications of their conditions on doctor that have nothing to do with try to go back well now you can’t”. fertility, assuming that they were in the specific issue, but will target their (expert in racial disparity, Latam) male-female relationships. In France, weight – as in, “You should really lose they report lesbians being told that weight if you want to have children”. Lesbians and Bisexual women fertility issues are not relevant to them, But maybe this woman does not want and that they are ‘not having real sex’. to have children. There are all these The women in our research reported assumptions. So, these people avoid that doctors usually assume In Latam, there is more overt seeing gynaecologists.” (Person with heterosexuality and it can be (even discrimination against lesbians and endometriosis, France) more) difficult to broach other types of bisexual women. Non-heterosexuality sexual activity and associated pain. is seen as a phase, it is not legitimate. People from these differing areas of Experts echoed this. This impacts upon the types of diversity in France therefore fear treatments offered. seeing gynaecologists, and a ‘safe list’ “Within the medical world, language is has been created by women to enable very binary and so it is very male/ “If you have endometriosis, a lot of them to have access. female, which is a shame and it makes doctors refuse to give you it quite hard to talk about it in inclusive contraceptive pills if you are from a “For transgender people, or very fat space, we’re in an arena where you’re different sexuality to the norm. That is people, or people with disability – talking about your genitals, to feel that the case with lesbian for example that [they] don’t have access. They it’s a communal experience, again, it costs them a lot of work because definitely are discriminated, so now they are for all of the effects, single there is a website with a list of “safe” women in a reproductive age. So, gynaecologists to see for those there are a lot of cases of lesbian marginal populations, to avoid

39 10. IMPACT OF PAIN ON WOMEN’S LIVES Pain conditions have significant researching other options and Plans can only be tentatively made “They feel that they’ve been cheated, impacts on many areas of women’s self-medicating. and are often cancelled. like their life has been taken away, they lives, from work, to social life, to have dreams and a lot of passions to relationships and family. “All the time I have some package of “You stop attending events, stop going fulfil and they just don’t have the painkillers at my fingertips, and at to school, stop going to physical energy to be able to do those things.” The pain itself is often incapacitating, some point in time they stop working, activities. It is a strong impact, because (Person with fibroids, UK) especially for conditions such as and I start buying other pills, and if I when you feel the lack of endometriosis and adenomyosis. don’t have them, then I start to panic, I understanding from the environment, “Crushed dreams.” (Person with Women we interviewed described can start to get nervous, I can’t what you have to say is “I am not endometriosis, UK) needing to curl up in a ball, in agony, concentrate on what I need to do if I feeling well,” because what am I going unable to do anything. suddenly realise that I left home to explain to a person? What should I “Life is limited. Life is unfair, why me?” forgetting my pills.” (Person with do, minimise my pain? They are going (Person with endometriosis, Sweden) “Often curled in a ball begging for it to adenomyosis & endometriosis, Russia) to think, “She is not coming because end.” (Person with endometriosis, UK) she has her period.” It deprives you Impact on school and work “I decided to try self-therapy. I bought from a lot of things and you do not “My husband used to ask me what are a hormonal contraceptive patch…I think express it due to the lack of Women living with pain are sometimes you feeling and I used to tell him that I told my parents that it was prescribed comprehension on the other side.” unable to work or have to take regular I’m dying and that I’m in pain while for me, but in fact I read something (Person with endometriosis, Argentina) days off. This leads to concerns that crying, he used to warm me up by and decided that if I had at least some colleagues may feel resentful and that heavy clothes and the heater.” (Person control of my cycle, it could improve “You cannot normally focus on the they may ultimately lose their jobs. with endometriosis, Saudi Arabia) the symptoms.” (Person with movie you’re watching. Your gaze Adolescents can struggle to attend adenomyosis & endometriosis, Russia) narrows, you seem to fall out of it all school and miss vital lessons – one For many women, the pain is so severe the time in this pain. And when advocate with endometriosis told us that it is a disability: The physical hangover from the pain is suddenly you have no pain for several she had even heard of doctors enduring, overwhelming fatigue and days, you seem to be unable to recommending girls leave school. The “This pain affects directly, a person difficulty concentrating. breathe, trying to catch everything impact on concentration levels is also becomes to some extent disabled, I around you, and at the same time you debilitating and contributes to daily cannot say otherwise, because pain “At the end it becomes a permanent are very scared, and you do all this work challenges. does not allow you to live a full life in fatigue... It cancels out everything, it under a monstrous fear that you general (Person with adenomyosis & saps any energy out of you.” (Person absolutely do not control your life, you “It’s also impacted things like work as endometriosis, Jordan) with endometriosis, France) do not control your body and you well, whereas before I’d just be able to don’t know at what point you will be pop a few painkillers and just get on “I need to be in bed, in a foetal “I have to rest, get sleep, that’s the first drawn in again. And you do not know with life. In the last few months I position, with ice and cannot go out, thing, no matter what other urgent how many hours, days without pain wouldn’t have been able to work, with cannot do a physical activity, I do not things I need to do, I have to put it you have ahead. Now you have a day the pain that I felt.” (Person with feel like seeing anybody. For me that is aside, just to get the rest, that has a to do something and see your friends, adenomyosis & endometriosis) a disabling pain.” (Person with very big impact on me.” (Person with and maybe two, or maybe in an hour endometriosis, Argentina) fibroids, UK) it’s all over.” (Person with adenomyosis “I couldn’t focus on my work, I need a & endometriosis, Russia) lot of brain power to do my work, so On a day-to-day level, they have to Lack of fulfilment when I had this pain I couldn’t think, so carefully manage their pain, which Women feel cheated: they had dreams at the office I had to do simpler chores, means always ensuring they have a Pain limits women’s lives. Everything and aspirations that they feel they nothing that required a lot of thinking, supply of painkillers with them. This in has to be planned around it. Women won’t be able to fulfil. They feel that analysis, brain power.” (Person with itself can create worries, as struggle to take part in the everyday their lives have no semblance of ovarian cyst, Malaysia) preparations such as codeine are life activities one takes for granted - normality - instead it revolves around addictive. In the absence of help from attending school, going to work, their pain and lack of energy. “When you can even get together with doctors this can lead to some women exercising, socialising. They feel that friends or sit somewhere in a lecture they have no control over their lives. hall at the university, but at the same

41 time you seem to be in a fog and not bad about myself because nobody public, where others sometimes made Women feel a high level of guilt. They in focus. I just remember I could sit cares or nobody is sympathising with unsolicited comments about their believe they disappoint their partners swaying from side to side to remain me.” (Person with adenomyosis, appearance, such as asking if they when unable to socialise or do conscious, in human consciousness, Jordan) were pregnant, or gave them weight activities together. In heterosexual but you cannot get involved in what is loss advice. They felt unattractive households that subscribe to a happening outside, because you are “One does not speak, and in reality, as a result. traditional gender division of work, sucked back inside, like into a black what should be done is the complete women can struggle to carry out hole.” (Person with adenomyosis & opposite. Express it, speak about it.” “When people say, ‘Ooh, when’s your childcare and the housework. They endometriosis, Russia) (Person with endometriosis, Russia) baby due?’ and I say, ‘Oh, no, I’ve got often feel guilty, and their partners this thing, it’s called endometriosis’ and may also resent taking over what they Psychological impact For some women, the impact can be then they say, ‘Oh, what’s that?’….it just perceive to be women’s work, even severe, leading to utter despair and makes you feel disgusting as well, believing her to just be lazy. “Psychologically it is even harder thoughts of taking their own lives. when I look at my body I just feel, like, than physically.” (Person with Experts say that this is a serious and disgusting.” (Person with adenomyosis “[They say] We can’t go out when he endometriosis, France) under-acknowledged outcome that & endometriosis, UK) wants – I have to disappoint him.” needs urgent attention. (Gynaecologist, Sweden) Multiple factors of living with chronic Impact on relationships pain conditions create psychological “Feel heart-pounded together, “There is guilt because the husband distress. Enduring the pain itself can desperate, rushing to the sky, The impact of women’s pain takes over all the family responsibilities leave women feeling helpless and complaining to the sky and the earth, conditions on relationships is from cooking and baby caring with her despairing. The impact on life and feeling that I don’t want to live significant. lying in the bed doing nothing.” dreams can lead to depression. anymore, I want to die, and I feel very (Person with adenomyosis & heavy/down, I ask God why torturing For conditions such as endometriosis endometriosis, Russia) “You get depressed, you cry, get me, I don’t know why this is especially, some women feel that their anguished. It disables you even more happening, I don’t know what to do; I partner does not understand the Impact of pain on women’s lives: than the disablement that you already feel so weak that I am about to die; intense or ongoing nature of the pain painful sex have due to the pain. (Person with how can there be such pain in the and may have little sympathy. They endometriosis, Argentina) world?” (Person with adenomyosis, may minimise or dismiss their pain, not Alongside the physical pain China) wanting to hear about. A few women experienced, societal pressure – in Living with these pain conditions can we interviewed gave anecdotal particular to provide sexual satisfaction be a lonely experience. Women feel “Yes, there are many cases of evidence of other women they knew, for others - can lead to secondary pain: that others often do not understand depression. This is not discussed whose partners became angry or the emotional pain that women their pain and minimise it. The enough but there are certainly links to violent, leading to the women being experience as a result of dyspareunia continual battle with doctors for suicide impulses, and some who have careful to hide their pain so as not to and the profound impact this can have diagnosis and treatment grinds them committed it.” (Endometriosis ‘provoke’ him. on their self-esteem and relationships. down. This can lead to them self- Specialist, France) censoring – they do not speak about “Wanting my husband to comfort me Impact on self-esteem their pain, but try to endure. Impact on body image or saying something kind. But instead, he has a strong temper and would yell For those who have it as a primary “It’s the normalisation, people just Women who suffered from abdominal at me and no empathy for my pain at condition, painful sex can make them don’t believe you, they think it’s all in bloating as a symptom of their pain all, just ask me to see the doctor.” question themselves as sexual beings. your head, that it’s a psychological condition also reported feeling less (Person with adenomyosis, China) They wonder if there is something problem.” (Person with endometriosis, confident in terms of body image. wrong with them, that they may be Sweden) They described the bloating as being “The husband is…too busy and tired. unable to feel pleasure, or whether very visible, to the point that they had The wife is very careful with words and they might be asexual. This can easily “Nobody knows what I have been to buy larger sized, or maternity, action, trying not to provoke him.” turn into a vicious circle of anxiety, through. The woman is really patient clothes. This led many to feel anxious (Person with adenomyosis, China) where they approach each encounter and she bears all kinds of pain…I feel or self-conscious about going out into with trepidation, unsure whether they

42 can trust their bodies. When their When communication about sex is one really, really common result is that unfortunately he goes to his mistress body doesn’t work in the perceived difficult between partners, women they avoid it, which is just such a or… Well, usually he abandons the ‘normal’ way, they feel like failures. may be unaware that their partner shame, if you think that they could be family.” (Person with Endometriosis, may be happy not to have penetrative feeling so much joy.” (Sex-positive France) “There’s an anxiety about whether you sex, and would be happy to find coach, writer, UK) are wet enough and feeling like a pleasure in other ways that would not Those not currently in relationships failure.” (Person with dyspareunia, UK) cause her pain. Thus, she may spend Some women worry that their partner experience anxiety that they will never many years feeling guilty and ‘a failure’. will leave the relationship to find sexual be able to have a long-term Impact on self-trust satisfaction elsewhere, which increases relationship, as they believe men will “Thinking that their partner expects the pressure and anxiety they reject them once they know about Again, for those with dyspareunia as a just one certain thing and that they’re experience. their condition. This has a detrimental primary condition, if they do not find a not able to deliver that, or they want to effect on their self-confidence, leading cause (and thus solution) for the deliver that even if it hurts them, it’s so, “There’s this idea that men have this to depression and despair for some. condition it can leave them so common… women thinking that insatiable sexual appetite and if they’re Some may hesitate to date new questioning their experiences and their partner wanted one thing from not fed regularly they’ll go elsewhere.” people to avoid the perceived shame. wondering whether it is real. This is them, been with them for 10 years and (Person with dyspareunia, UK) exacerbated if doctors say or imply it is doing that one thing over and over “There’s also mental problems ‘all it their head’. This leads to women again and finally that partner was “Women have been taught, “You have associated with it; ‘Will I ever meet a blaming themselves and feeling actually like, ‘I don’t want this, what’s to please your men, and he can man that can live with me and my ashamed. been happening this whole time!’ (Sex- switch you for another one if he is not pains, because I’m not very easy to live positive coach, writer, UK) happy with you, and he won’t stay with?’.” (Person with Endometriosis, “Patients go years talking to general with you if you don’t respond Sweden) doctors, and not getting a diagnosis, Some women, who have either found the way he wants you to respond”.” getting studies that don’t point to no solution or who find it too (Sexologist, Colombia) “I hesitate to date men because it’s anything. Vulvodynia, for example, is embarrassing to seek help, see no already possible to feel my myoma. not seen in a study. In a neuropathy, choice but to avoid sex completely, “Women are afraid that their partners When I lay, the myoma feels like a you can’t always see it, very specific thus missing out on pleasure and will leave them.” (Person with hillock. A big hillock! And how can I tests and doctors do. Patients say connection with their partners. Endometriosis, Sweden) have sex? I’m ashamed to have sex what they feel and are misunderstood. with a man. It’s the end of my life. I They need to be listened to and “In terms of the impact of pain on “For Muslims, yes, it would definitely can’t imagine my life without men, I understood.” (Physiotherapist, women’s lives, a big one actually is impact their relationships because in would rather die. I see no future, only Argentina) avoidance; feeling like you don’t have a their culture they have polygamy, so darkness… My life is ending. Only solution, you don’t think that it’s men can marry more than one woman, darkness and despair.” (Person with Impact on relationships possible to solve it, so you just avoid it so they feel very threatened and dyspareunia, Russia) completely and take away that source vulnerable when they can’t perform A feeling of guilt is hugely prevalent of pleasure and self-expression from for their husband - in my University Some women feel utterly hopeless for women with dyspareunia due to your life. One woman said, ‘I just didn’t Hospital days I saw more of that; they and decide to give up seeking a any cause. They worry about have sex and I didn’t really miss it didn’t feel stable in their relationships.” partner altogether – they feel ‘faulty’ disappointing and letting down because it was never fun for me (Physiotherapist, Malaysia) and abnormal, and beyond help. They partners. anyway’ and all of her self-fulfilment of decide it is safer to be single and sex was from fantasy because she just While some women do have an celibate, than risk the rejection, shame “I try to escape from it and he does the didn’t even think it was possible to understanding partner, others find and ensuing sadness. same. It is a problem and I feel bad enjoy sex with other people, so she that their partner is not so inside. What is the solution? What shall didn’t want it. Really, only 1% of the understanding and has affairs or leaves “Around avoidance and it’s that giving I do? I want a solution to solve this world’s population is asexual, so most the relationship. up, thinking that they’re different, that issue for us.” (Person with people are sexual beings and want to they’re not the same as they’re seen in Endometriosis, Saudi Arabia) have sex and sexual fulfilment but “Women, well, they refuse having sex. culture and assuming that there isn’t a when so many people experience pain, As a result, they lose their husbands; solution for them, or perhaps they’ve

43 tried solutions themselves but they haven’t found any success from them and that there’s so much shame involved in pursuing a better solution and they don’t believe it will work anyway, so why go through the bother?” (Sex-positive coach, writer, UK)

Impact of pain on lives: Implications

Women’s pain has a far-reaching impact on their lives. The lack of compassion that women often experience, and the resultant shame they feel is embedded within the taboos regarding women’s pain conditions. There is a lack of education, and hence understanding, regarding women’s pain. Sexism means that female employees with pain conditions still do not receive equal treatment, and may be driven out of the workforce. Young women, encouraged to drop out of school, are seemingly dispensable.

Understanding can lead to empathy. Although work is starting to be done to bring women’s pain into the spotlight (in some countries), our research indicates there is still some way to go. Women’s pain conditions, including painful sex, need to be perceptually brought under the umbrella of other pain conditions that are afforded respect and compassion. Healthcare providers, schools, the media and brands all have a role to play in educating, challenging perceptions, and enabling women’s voices to be heard and respected. Training is needed for employers so they understand the validity of women’s pain conditions and ensure that fair policies are created and adhered to.

44 11. THE ROLE OF GOOD LANGUAGE IN PAIN The importance of empathy in gynaecologists…never inquired about to be taken by me.” (Person with ‘expressibility’ of pain, suggests that consultations what I felt or suffered every 28 days.” adenomyosis & endometriosis, Russia) there is no literal language for pain and (Person with endometriosis, Argentina) it can only be described through While all of the women we Freedom of expression was also metaphor: “Pain is an all-consuming interviewed had had at least one “If the mother is with her. I would tell implicit to a positive consultation. internal experience that threatens to (usually more) negative healthcare the mother, “Please wait outside. I have Women felt ‘heard’ when allowed to destroy everything except itself and experience, most eventually an issue and I would like to talk to your describe their experiences and pain can only be described experienced a consultation that felt daughter and you do not have the using their own words, rather than metaphorically.”70 Shinebourne & Smith more positive. right to know it”. So, from that point of being solely directed by the clinician. (2010) suggest patients’ metaphors are view, my patients used to come and a ‘safe bridge’ which allows them to Crucially, positive experiences involved say the most secret issue and they are “She listened a lot more attentively and express emotions they find too clinicians conveying empathy. Women free to say that. There is a bond asked me more about how I was difficult to communicate literally.71 consistently described doctors that between me and my patients feeling, why I’d come back for a seemed to understand that the especially the young ones.” second consultation, so I did share my A key barrier in the consultation consultation might be anxiety- (Gynaecologist, Saudi Arabia) distress.” (Person with fibroids, UK) process can be women feeling that the provoking and embarrassing, and clinician does not empathise or behaved with consideration. They did “Gynecologists are a little like Our research suggests that women understand their pain. The field of not rush their patient, but allowed her psychologists. If we do not listen to the feel more respected when asked to narrative medicine suggests that story to unfold as she saw fit and at woman, and if we don’t understand describe their pain, and when ‘heard’ clinicians actually become more her pace, while they listened with her, she is not coming back.” empathically. However, a history of not empathic towards their patient when intent. They asked open questions (Gynaecologist, Colombia) being asked, and a lack of confidence, they engage with the patient’s when needed – which some women can mean some women may find it narrative, including metaphors. Jack had never experienced before. Tonally, Empathy was also conveyed through challenging. There is, therefore, a need Coulehan (2003) writes: they conveyed a relaxed and open being open and speaking to the for tools to enable them to unlock manner. They offered reassurance and patient on their level. This involved and express it. “Medicine is largely about storytelling women felt at ease. They also acted as using jargon-free language, explaining and interpretation, and narrative, guardians of their patient’s in a clear, but non-patronising manner, Communication of pain: the role of metaphor and symbol are fundamental confidentiality, ensuring patients and answering questions with respect. metaphors tools of the trade…patients understand attending with relatives could speak to Treatment choices were given, and the their narratives in a narrative way them alone if preferred. treatment plan decided together, As highlighted earlier, the whether physicians understand it or taking into account the women’s communication of pain is difficult – not. If this is so, and if physicians ignore “The doctor is very nice. She has been preferences and concerns. The care both for the speaker to express, and or devalue narrative, then health care is trying to comfort me, saying, ‘Don’t be was patient-centred – the women felt for the listener to understand. bound to suffer.”72 afraid, don’t worry. You don’t need to that they were respected throughout worry.’” (Person with adenomyosis, as actors with capacity to explain their Metaphors play an important role in The McGill Pain Questionnaire goes China) pain and understand clinician’s personal narratives, as they ‘enable the some way towards enabling patients explanations and implications, and reflection and communication of to express their pain through “She didn’t appear rushed, even agency to make decisions about their complex topics’ (Moser, 200068). They metaphor. It was developed to help though I had the same amount of time, treatment options. are not just figures of speech, but are patients describe their pain and her body language didn’t appear the way humans structure their comprises a list of 78 descriptive rushed.” (Person with fibroids, UK) “Now I like the doctor, because she thoughts: “We actually understand the adjectives, including metaphors, explains to me everything that world with metaphors and do not just grouped together that patients can “So, when I went to the endometriosis happens and the risks in a balanced speak with them” (Kövecses, 2005).69 choose – e.g. ‘flickering/beating’, specialist consultation…he started and understandable way...There is a ‘jumping/shooting’, ‘pricking/ inquiring: “When you have sexual feeling that we are a team, and we Metaphors have long been lancinating’, ‘sharp/lacerating’. The intercourse, does it hurt?” “Your solve some problems together…. We understood as tools people use to adjectives and metaphors were period?” I mean, the other doctors, spoke openly, but the final decision is express pain. Physician David Biro gathered from both medical literature neither the fertility doctor, nor the (2011), who writes about the and patients. Deborah Padfield (2013)73

46 comments on the potential limitations of this, saying these are “patients from a distinct community with a distinct vocabulary not necessarily reflecting the language the majority of patients might actually use, e.g. ‘lacerating’ and ‘lancinating’.” The questionnaire may therefore reflect the language of certain types of patients, for example, white, middle class who were more likely to vocalise their pain in appointments. (Despite being a well- known questionnaire, none of the participants in our research mentioned it.)

Other research suggests there is a communication gap between health professionals and patients regarding metaphors and pain experiences. Skelton, Wearn & Hobbs (2002) analysed the differences between metaphors used by general practitioners and patients to describe symptoms in the UK. They show that doctors tend to use ‘body as a machine’ metaphors (e.g. ’wear and tear’), whereas patients prefer more evocative metaphoric expressions.74 Clinicians also view the language they use as having universal meaning, but patients may not understand it in the same way. Kirmayer (1992) writes: “‘Blood’ for the patient is not ‘blood’ for the physician. The inability to see the metaphoric and contextual basis of discourse limits the physician’s comprehension of the patient’s life-world”.75

This highlights the vital importance of clinicians understanding patient- generated metaphors – from myriad groups - learning the language of their lived-experience.

47 12. WOMEN’S PAIN METAPHORS AND DESCRIPTORS The women living with pain conditions [instead of] ‘My arm feels In Sweden, metaphors regarding • Intense stabbing in my side. that we interviewed shared with us uncomfortable’ or, ‘My skin feels blood in the context animals were (Gynaecologist, Russia) the language they use to describe their uncomfortable’, so one would say, more prevalent versus other European • It’s like a knife in the back, dagger pain. Clinicians working directly with ‘Cold in the arm’, it is of course physical, countries. pain. (Neurologist, Russia) women also shared the descriptors you feel the body temperature, but • Feel as if someone is hitting you they commonly hear in practice. sometimes it’s a feeling; you feel that When thinking about descriptive with knives. (Gynaecologist, you are cold.” (Semiotician, China) language, it is also important to Russia) There were a large number of universal remember that individual • Having Ninjas with swords pain metaphors – that is, descriptors “The underlying belief in Chinese characteristics and personality impact cutting them inside. we heard across cultures. Some medicine is that you feel pain because upon expression. Some of the women (Gynaecologist, Russia) linguists believe these arise from this part of your body is blocked – for we interviewed were involved in the • Cutting pain and it’s typical universal bodily experiences76. example, if you have muscle pain it creative fields, and felt more at ease before the period. feels like stone, it’s very hard, because speaking in evocative language. (Gynaecologist, Russia) However, metaphors for pain are not you’ve put too much tension on it, so • Like having a knife and then a big immutable, they change over time and you need to loosen it up, or your The following are the metaphors and hammer is taken and smashes it are affected by cultural paradigms e.g. stomach feels pain because you’ve descriptive language that women deep. (Person with medical philosophy, science, religion, inhaled too much cold air that day, so shared with us per condition, endometriosis, Sweden) symbols and myths. For example, in your cold and heat doesn’t balance.” grouped into themes where possible: • It feels like a knife turning around Western culture, the twentieth century (Semiotician, China) in my organs. (Person with saw the emergence of pain metaphors Endometriosis: endometriosis, Sweden) revolving around germs and military The ‘heart’ is sometimes used in • Pain associated with ovulation is warfare. metaphors. In China, the heart is (NB pain levels and experiences varied like knife stabbing. (Person with considered to co-ordinate holistic between women) endometriosis, Sweden) We identified a number of themes of bodily functions, as well as directing • Stabbing pain in crotch. (Person metaphors used by women in other organs to ensure the balance of Stabbing: with endometriosis, UK) different countries: physiological functions. • Stabbing pain in the ovaries like • Like scissors stabbing my tubes. being stabbed by a knife that can In China, pain metaphors often reflect Generally, Chinese metaphors tend to (Person with endometriosis, radiate up to the buttock and to the concepts of traditional Chinese be less ‘expressive’, as this can be seen adenomyosis & fibroids, the vagina. (Person with medical philosophy regarding as an exaggeration or manipulation to Argentina) endometriosis, France) imbalance and harmony. ‘Warmth’ seek attention. • I used to feel like someone is • Like someone cut my meat with versus ‘coldness’ and ‘blockages’ stabbing me with a knife. (Person a sharp knife. (Person with emerge frequently. TCM concepts “If you use a more emotional or a more with endometriosis, Jordan) adenomyosis & endometriosis, include: maintaining Yin and Yang, by colourful way to describe the pain, • It’s like knives cutting. (Person China) balancing ‘warmth’ versus ‘coolness’ others would feel you were with endometriosis, Saudi Arabia) • The pain is like being cut, and my within the body; keeping the Five exaggerating a little bit and feel that • Stabbing with a jagged knife heart is strangled when it hurts. Elements - the heart (fire), kidney you’re using it to ask a lot from others (Person with endometriosis, (Person with adenomyosis & (water), liver (wood), spleen (earth), and because pain is related with not being Russia) endometriosis, China) lung (metal) - in harmony; and Chi [Qi] loved, so you are pressing others to • It feels like a hot, searing knife which moves the energy of the vital show that they care about you.” stabbing you. (Gynaecologist, Cutting: substance of life throughout the whole (Semiotician, China) Russia) body. Chi blockages are thought to • It’s like knitting needles stabbing Pins / needles lead to illness. In Russia, agricultural and machinery me. (Physiotherapist, Russia) metaphors were more prevalent • Constant stabbing in the • I knit, and I knitted a uterus with “In the West they might say, ‘My arm (linked to soviet themes around stomach. (Gynaecologist, Russia) the ovaries and I filled it with feels uncomfortable’ but in Chinese workers and technological utopianism). • Knife in the back. (Gynaecologist, pins, with hooks…that is how I we’ll tell you, ‘I feel hot’, ‘I feel cold’ and Generally, the Russian metaphors we Russia) feel sometimes, right? It is as if I use the specific area of the body, heard were also more evocative. am nailed all over. (Person with

49 endometriosis, adenomyosis & Violence metaphors: smashing, • Two cats fighting/scratching Burning fibroids, Argentina) battering, punched, pulled, ripped inside my belly. (Person with • It’s like pins and needles in my endometriosis, adenomyosis & • The lower back is like a little pit of lower parts. (Person with • Hammer smashing in the pelvis fibroids, Argentina) fire, where it can increase or endometriosis, Russia) (Person with endometriosis, decrease, depending on how • In my thighs it is like needles… Russia) Construction machinery (Russia) everything’s going. (Person with this feeling of sharp pain. (Person • Bashed in the sides with Thor’s endometriosis & ovarian cyst, UK) with endometriosis, Russia) hammer. (Person with • This pain reminds of a drill • Burning, smouldering, blistering, • It feels like I have a thousand endometriosis, Russia) rotating in different modes. It all that language around ‘heat’, needles in there. (Person with • Sometimes pain is like a rubber feels like it drills down my and sometimes that feeling of endometriosis, Jordan) hammer which beats me. (Person abdomen and the lower back heat, or burning almost makes • Thousands of pins and needles with endometriosis, Russia) (Person with endometriosis, you cold as well, it’s a strange stabbing me. (Person with • Domestic abuser inside me Russia) kind of feeling. (Person with endometriosis, UK) smashing my insides apart • It feels like I have a mixer in there endometriosis & ovarian cyst UK) • Feel like a human Voodoo doll (Person with endometriosis, which cuts me. (Person with • It feels like my hips are on fire. (Person with endometriosis, UK) Russia) endometriosis & ovarian cyst, (Person with endometriosis & • A sharp pain from time to time • Body is being ripped apart Russia) ovarian cyst, UK) as if someone planted pins in my (Gynaecologist, Russia) • It feels like my womb is on fire lower back. (Person with • Pulled apart with a jack hammer Heat: (Person with endometriosis & endometriosis, France) (Gynaecologist, Russia) ovarian cyst, UK) • I feel like needles are placed into • They feel their ovaries are Poker, lava, fireball, burning, on fire • It feels like I’m being burned the sides of my thighs with impaled. (Gynaecologist, Russia) (Person with endometriosis & strings threaded through them, • Ball and chain smashing into the • It feels like a fireball in the right ovarian cyst UK) and someone pulls on the pelvis. (Person with side, I can even feel the • It’s so intense, it’s making me strings. It really hurts a lot. endometriosis, UK) intestines. I have a burning pain, shiver. (Person with (Person with endometriosis, • It’s breaking me from the inside it burns in the right side, and it’s endometriosis & ovarian cyst UK) France) (Person with endometriosis, UK) very close to the abdomen • Like a bonfire, when it’s so bad, • Like pins and needles • Battered with a large (Person with endometriosis, that bonfire spreads all around (Gynaecologist, Sweden) sledgehammer. (Person with Russia) the hips, the lower back, the tops endometriosis, UK) • It feels like this fireball would of the legs. (Person with Barbed wire in uterus • Punched in the stomach by blow out, I want to physically endometriosis & ovarian cyst, UK) heavyweight champion of the remove it from my belly. • Uterine contractions are like a world. (Person with It feels like a fire inside my belly Delivery pain / contractions: barbed wire hoop that presses endometriosis, UK) (Person with endometriosis, and squeezes my entire uterus, • During menstruation in the lower Russia) • It is exactly like delivery labour the pain is constant without back it is as if I had received • Hot, poker type shooting pains in (Person with endometriosis, respite, it is exhausting. (Person millions of punches and had your lady bits; your vagina and Saudi Arabia) with endometriosis, UK) millions of bruises. (Person with your bottom. (Person with • It is very tiring. The woman endometriosis, France) adenomyosis & endometriosis, cannot withstand the delivery Crushed glass • They tell me that it’s like Russia) labour for 2-3 hours, somebody’s ‘punched’ them, • In my stomach - lava- like a we stand these pains for months • It feels like I have ground glass somebody’s ‘kicked’ them in the volcano eruption. (Person with (Person with endometriosis, everywhere and when I move, it lower abdomen and it’s cyclic, so endometriosis & ovarian cyst, Saudi Arabia) moves around and just cuts me it’s like receiving multiple kicks or Russia) • I feel that I am giving birth and inside. (Person with punches (Gynaecologist, my labour takes a long time endometriosis, Sweden) Malaysia) (Person with endometriosis, • Ripping me out from the inside Saudi Arabia) (Physiotherapist, Jordan)

50 • I feel that the baby is stuck inside. • A kind of aching but it is a dull Twisting Heaviness (Person with endometriosis, pain, as aching dull pain Saudi Arabia) (Physiotherapist, Jordan) • It’s twisting inside me, twisting • They say it’s like being really • It’s labour contractions every 28 • Aching legs, aching bones my uterus. (Physiotherapist, constipated, when you’re days. (Person with endometriosis, (Person with endometriosis, UK) Russia) straining you feel a heaviness Argentina) • Cutting pain is not as common as (Senior Pelvic Health • I suffered from harsh dull pain. (Person with Throbbing Physiotherapist, UK) contractions, it’s like something endometriosis, UK) being ripped inside me. (Person • It’s a throbbing pain, it comes Shooting pain with endometriosis, Argentina) Other sensations: and goes and the throbbing • Contraction type pain, so that’s becomes worse and worse, until I • It’s like it starts in my stomach like somebody squeezing and Pressure can’t bear it. (Person with and it goes down, it shoots down then letting go repeatedly endometriosis, UK) into my lady region. (Person with (Person with endometriosis & • My pain was the feeling of • It starts from my lower back, endometriosis & adenomyosis, adenomyosis, UK) having a finger in the vagina then it goes to the belly, to the UK) pressing very hard on the upper right side… It’s like a toothache, Radiation of pain: wall of the uterus (and therefore it’s also tuning and shooting pain Split in half on my bladder) all the time. but very, very intense. (Person • It radiates to my thighs, so that I (Person with endometriosis, with endometriosis & ovarian • I felt like my back is detaching can’t feel them. (Person with France) cyst, Russia) and that I’m divided into two endometriosis, Russia) • The pain is in the right side which (Person with endometriosis, • Irradiating pain because the pain goes to the lower back and to Twitch (China) Saudi Arabia) impacts on other organs. (Person the anal orifice, you know, and it with endometriosis, Russia) presses down, presses down. It • ‘It feels like a twitch’, that’s Tightness • Radiates up your back and down feels like I have dumbbells inside commonly said. (Gynaecologist, your legs. (Person with (Person with endometriosis & China) • Like someone has placed a corset endometriosis, Russia) ovarian cyst, Russia) on you and tightened it so tight • Starts in vagina and radiates up • If we talk about images, I see Swelling can’t breathe. (Person with through my chest. (Person with everything in a black light. It feels endometriosis, UK) endometriosis, Sweden) like I’m small and chained up, and • Something swelling inside, inside • Tightness in the stomach. (Person • Radiating from your lower back there is something which presses the abdomen. (Gynaecologist, with endometriosis, Russia) and hips, you’re just in the foetal me down. (Person with Sweden) position, it’s just unbearable endometriosis & ovarian cyst, Electric shocks in body (France) (Person with endometriosis & Russia) Stretching ovarian cyst, UK) • There’s also rectal pain and • Did we talk about the back … its sometimes the women describe • My whole uterus is stretching needles again... actually almost Can include radioactivity, in Russia it as a pressing inside the (Person with endometriosis, like electric charges/ shocks stomach. (Gynaecologist, France) (Person with endometriosis, • Like a Chernobyl that has Sweden) France) exploded inside me. (Person with Numbness • Like lightning. (Person with endometriosis, Russia) Bursting endometriosis, France) • There’s numbness in the thighs • I feel like electric charges – it’s as Aching/dull: • My uterus will burst (Person with endometriosis, if someone grabs my nerves, (Physiotherapist, Russia) Saudi Arabia) pinches them and plays with • Constant aching. (Person with them. (Person with endometriosis, Russia) endometriosis, France) • It’s the same pain as having the flu. (Gynaecologist, Russia)

51 Electric shocks in head (France) Headaches prolapse, so they’ll describe a banging and the same with the heaviness, a dragging, an ache in lower back. (Person with fibroids, • Sparks in my head and arms • Ice-pick headaches the stomach. (Person with UK) – I have horrible headaches. (Physiotherapist, Russia) fibroids, UK) (Person with endometriosis, • Headaches of hell • Heaviness in my abdomen. Squeezing France) (Physiotherapist, Russia) (Gynaecologist, Jordan) • It’s ringing in my ears • Squeezing… This word attracts Dull vibration: brass Instruments (Physiotherapist, Russia) Pressure me the most… iron vice clamps (France) • There’s darkness in my eyes It’s like the tortures in the Middle (Physiotherapist, Russia) • I have pressure at the lower Ages. (Person with fibroids, • I imagine brass instruments – • Head’s splitting. (Physiotherapist, pelvis. (Gynaecologist, Jordan) Russia) that will make a very low and dull Russia) sound. During the contraction it Twisting Buckled over is impossible to breathe – it cuts Want to curl up in a ball the respiration, and then there is • Twisting kind of experience • Buckled over, crippled over the feeling like a brass instrument • Contractions, the shooting pains, because when I turned, the cord, (Person with fibroids, UK) that reverberates through the the stabbing, sharp pains, where or the stalk, twisted and the pain belly and beyond. (Person with you just want to curl up in a ball was excruciating, so it was like a Stretching endometriosis, France) and die. (Person with twisting kind of a cord. (Person adenomyosis & endometriosis, with fibroids, UK) • There is something stretching in Pain in the ovaries: grabbing, ripping, UK) • Like an umbilical cord being my abdomen. (Person with twisting, broken glass, burning, • They say they want to curl up in a twisted and when I made a jerky fibroids, Jordan) pinching, squeezing ball. (Gynaecologist, Russia) movement it was very, very uncomfortable. (Person with Adenomyosis • Grabs my ovaries and rips them. Fibroids: fibroids, UK) (Person with endometriosis, NB: Respondents often had Argentina) Metaphors of the body (UK) Stabbing pain adenomyosis and endometriosis, so • In the ovaries, it is like needles they were not always able to They are like “tiki, tiki, tiki,” like • A car with rusty spark plugs, you • Stabbing pains, a lot sharper, distinguish the individual pain. you are getting pinched, and know, you’ve got the car but the almost like a knife pain. (Person pinched, and pinched, and spark plugs are rusty, so, with fibroids, UK) Stabbing/Cutting pinched. (Person with therefore, the car’s not • It feels like a dagger which hits a endometriosis, adenomyosis & performing, (Person with fibroids, number of organs… An iron • As if something with sharp tools fibroids, Argentina) UK) dagger, it’s severe and this entered my body tearing and • As if someone would come and • The week before a period I felt dagger turns inside you… Just hurting me. (Gynaecologist, would squeeze your ovary, and like I was full of toxins, I felt like I imagine any horror film… You Jordan) would enlarge it, and they was just about to burst like totally know how the maniacs are squeeze it and enlarge it. (Person pent up; pent up emotions, pent portrayed, how they mock the Wound-like with endometriosis, adenomyosis up toxins that are kind of trapped victim… It’s the emotions of pain & fibroids, Argentina) in your body really, that’s the best (Person with fibroids, Jordan) • Like wound soaked in salt water • This feels like if someone took way to describe it. (Person with or alcohol. (Person with your ovaries, turned them around fibroids, UK) Hammers banging adenomyosis & endometriosis, and pulled on them. (Person with China) endometriosis, UK) Heaviness • Hammers just below the belly • It is like a wound. I feel that it is • In my ovaries – it feels like broken button area, right across, from like the wound. (Person with glass. (Person with endometriosis, • Sometimes difficulty emptying left to right, lots of hammers adenomyosis, Jordan) France) the bowels, or IBS, or it can cause or aggravate the feeling of

52 Heavy / dull / dragging Delivery pain Feels like parts of the body are • My everyday pain is like broken electricity and thunderstorm • It feels very dull, heavy, and • The pain in my stomach is like (Person with adenomyosis, ballooned with the period stuck beginning of delivery labour • It feels like my lumbar spine was Jordan) inside. (Person with adenomyosis (Person with adenomyosis & broken. (Person with • Small pinches…like when you & endometriosis, China) endometriosis, China) adenomyosis & endometriosis, touch something that gives you • The pain on this side is more like China) an electric shock. (Person with a dragging pain, that’s the Balloon on fire (UK) • The waist feels broken. (Person endometriosis, adenomyosis & adenomyosis, it’s more like a with adenomyosis & fibroids, Argentina) dragging pain. (Person with • You know when you blow up a endometriosis, China) endometriosis & adenomyosis bubble gum balloon and it’s Post Sex: UK) getting thinner and thinner and Sticking thinner? Instead of it getting Sore pain after orgasm Ripples / Radiation passing through thinner, there’s just more flames • Feel like my muscles were (Person with endometriosis & sticking together in my thighs • When you orgasm you kind of • From the belly running down the adenomyosis, UK) (Person with adenomyosis & tense up, don’t you?... it’s really right leg, like a wave rolling down • Balloon that was on fire, that’s endometriosis, China) sore and tender the next day and there. (Person with adenomyosis just getting bigger and bigger then hurts a lot more. You don’t & endometriosis, Russia) and bigger. (Person with Twisted get the shooting pains or the • Yes, just the pain passing. Like endometriosis & adenomyosis, contractions, it’s just like a really the radioactivity, you have the UK) • The belly is like intestines twisted sore kind of pain. (Person with pain here; then you have the pain together; and at the same time adenomyosis, UK) in other parts, even the back. Ants moving on the body (Jordan) (Person with adenomyosis & (Person with adenomyosis & endometriosis, China) Like a muscle burn endometriosis, China) • My legs have pain and shaking as • It feels like something is tangled • Sciatic pain, I get cramp in my leg if ants are moving on my body, together and twisted together • Very sore, like when you work and then it kind of goes on the on my legs, arms and back, i.e. all (Person with adenomyosis & out and you get muscle burn a hip, down my leg, so that can over my body. (Person with endometriosis, China) day or so after, it’s a bit like that. wake me up in the night, it’s like adenomyosis, Jordan) (Person with adenomyosis, UK) a dull continuous ache that just Caught in a clamp kind of goes down my leg, so I Stretched Ovarian Cysts wouldn’t say it’s a shooting pain, • Like meat caught by a clamp, like it just gradually moves down my • As if something is being being pinched. (Person with Pressing pain thigh, to my knee. (Person with stretched inside you. (Person adenomyosis, Jordan) endometriosis & adenomyosis, with adenomyosis & • I had a very terrible period pain UK) endometriosis, Russia) Being strangled and the pain was going on and off, on and off and during the on Needles Squeezed • Like being strangled and hard to time the pain was getting worse, breathe. (Person with it felt like a ‘pressing’ in my • It’s like an injection, and it hurts • Uterus is being squeezed out like adenomyosis & endometriosis, abdomen, below my belly (Person with adenomyosis, a doormat. (Person with China) button. (Person with ovarian cyst, Jordan) adenomyosis & endometriosis, Malaysia) • Pain in perineum, like a needle Russia) Electricity • Pressing pain, like a dumbbell sticking in me. (Person with (Person with ovarian cyst, adenomyosis, Jordan) • It is like holding electrical wires Malaysia) and hitting something electricity in back and abdomen. (Person with adenomyosis, Jordan)

53 Pulling pain was like, ‘I’m not pregnant, my • Buddha in belly. (Person with Drained: body just hates me!’ (Person with endometriosis, UK) • It was pulling on the left side, the adenomyosis & endometriosis, • Large stone in the stomach • Nearly bled out. (Gynaecologist, pain was so intense, the pulling UK) (Person with endometriosis, UK) Sweden) started from behind my hip and • Bloating…heaviness, like a heavy • Feels like you’re carrying this • It’s draining me. (Gynaecologist, then it pulled to the inside of my bloating. (Person with bowling ball around in your Sweden) womb. (Person with ovarian cyst, adenomyosis & endometriosis, stomach. (Person with • Lifeless. (Person with Fibroids, Malaysia) UK) adenomyosis & endometriosis, UK) • It felt like a rope, like someone • I feel bloated. You know when UK) was pulling the rope, it’s ‘like a you see pregnant women Painful Sex tug-of-war. (Person with ovarian rubbing their bellies? Well, that’s Look like an animal cyst, Jordan) what I have to do to ease it a little Descriptions for endometriosis, • For the pulling pain I’d draw a bit, so it is like an inflamed kind of • Horrid beached whale. (Person adenomyosis, fibroids and ovarian rope and put it between the hip swelling. (Person with with endometriosis, UK) cysts and the belly button, I’d have the endometriosis & adenomyosis, • It’s a gazelle to a hippo in 24/7 rope dangling on the left hip, that UK) (Person with adenomyosis & Most of the women we spoke to with describes the pulling pain, it endometriosis, UK) these conditions experienced painful sometimes comes from behind Internal gas sex due to their conditions, and used my hip. (Person with ovarian cyst, Heavy Bleeding (especially the descriptors below. As conditions Jordan) • It’s like a fart going the wrong endometriosis and fibroids) are often comorbid, women can be way. (Gynaecologist, Sweden) unsure which causes the pain. Sex with nails • It’s like it’s trying to get out of the Water flows bowel wall instead of going Sometimes women with these • When you have sex, you get down and that can be very, very • It’s just a flood. (Gynaecologist, conditions have painful sex due to the cramp-like pain in your belly as if painful. (Gynaecologist, Russia) Sweden) conditions, but it can then become a you were hit in the belly with • Constant popping sensation in • It’s like waterfall. (Gynaecologist, vicious circle, whereby they dread sex, something sharp, like nails uterus. (Gynaecologist, Russia) Sweden) fail to become aroused and/or their (Person with ovarian cyst, Russia) • Irradiating pain, because the pain • Raining cats and dogs muscles clench, and they can then impacts on other organs (Gynaecologist, Russia) develop a secondary painful sex Headaches (Gynaecologist - expert in • The rain comes pouring down condition such vaginismus or endometriosis, Russia) (Person with Fibroids, UK) dyspareunia (which we will explore • Steam coming out of my head, • It’s gushing out of me. next). that’s how it feels, my head feels Look pregnant (Gynaecologist, Sweden) very hot, very warm, that’s the • It’s pouring out of me. Partner feels too big image that comes to mind • Like I’m 6-8 months preggers (Gynaecologist, Sweden) (Person with ovarian cyst, (Person with endometriosis, UK) • Flood of blood. (Gynaecologist, • Every time he pushes inside of Malaysia) Sweden) me it feels like he’s too big. Object, person, animal inside • Bathed in blood. (Person with (Gynaecologist, Sweden) Swollen Abdomen – endometriosis, Endometriosis, France) • He’s too long. (Gynaecologist, adenomyosis, fibroids, ovarian cysts • Like a balloon growing inside Sweden) (Person with endometriosis, Animals - Sweden • It feels like it comes too far in. Bloating Russia) (Gynaecologist, Sweden) • Something swells inside me, it’s • Oh, I bleed like a pig! • It’s a dull bloating kind of pain like a balloon inside (Gynaecologist, Sweden) Friction/burning (Gynaecologist, Sweden) (Physiotherapist, Russia) • Bleed like a stabbed pig. • I was bloating, the amount of • Uterus like heavy watermelon (Gynaecologist, Sweden) • Like every time you grate, it’s like people that were asking me (Person with endometriosis, UK) [grating noise]. (Gynaecologist, when my baby was due and I Sweden)

54 • It feels like a cheese grater inside Sharpness Descriptions for painful sex Vaginismus of me. (Person with conditions: endometriosis, UK) • It’s quite a sharp pain, it’s not a Wall • Vagina rubbing against wood continuous pain, it’s a sharp pain Dyspareunia (Person with endometriosis, (Gynaecologist, Sweden) • Like a wall, nothing could go in. Saudi Arabia) Burning ball (Gynaecologist, Sweden) • They feel a burning, there’s Stone unpleasant friction. (Neurologist, • It does feel just like a burning ball Heat Russia) • They say their stomach feels like pain, glowing…it glows like a hot a ‘stone’ and when they’re next ember. (Person with dyspareunia, • Upon touch it feels like a sharp Soreness to their partner they feel a UK) burning sensation. stiffness inside their belly and it (Gynaecologist, Sweden) • It doesn’t matter which position feels like ‘stone’. (Physiotherapist, Pushing down • Hot inside me. (Gynaecologist, we’re in, there’s always the sore Malaysia) Sweden) spot. (Gynaecologist, Sweden) • Pushing down feeling, a pressing, • It’s more like cinders, I think, it’s • It feels like it hits a sore spot Balloons inside body pressure. (Person with not like a raging fire, it’s more like inside of me that he keeps on dyspareunia, UK) you have these cinders, where hitting (Gynaecologist Sweden) • Bubbles and balloons in my lower every time you move it’s like a abdomen. If I insert my finger Brick wall burning. (Gynaecologist, Sweden) Object inside inside them they burst and cause • Like somebody takes a cinder log a very severe pain like delivery • Brick wall, feeling that there was or something and just holds it • Someone’s hitting me with a labour with any movement a wall. (Person with dyspareunia, against you. (Gynaecologist, hammer. (Person with (Person with adenomyosis, UK) Sweden) endometriosis, UK) Jordan) • It’s like burning irons • Penetration hurts, it feels deep. It Speed bump (Gynaecologist, Sweden) feels like a javelin coming into Turbulence inside • Like a burning iron, it makes you. (Person with Endometriosis, • There is a rough patch…almost them shy back. (Gynaecologist, Sweden) • I feel like there’s a tornado inside ‘like a little speed bump. (Person Sweden) me or an earthquake. (Person with dyspareunia, UK) Birth cramps with endometriosis, Saudi Arabia) Knives Blockage • There are other women who say Like a bruise • Ring of knives. (Gynaecologist, it’s more like a dull ache, like a • Like a blockage, like a dead end Sweden) weight, and they say it feels like • I don’t know if you have ever hit (Person with dyspareunia, UK) stomach cramps, or like giving yourself with something on some Multiple sensations birth, contractions. (Sex-positive muscle and it left a big bruise, Like moon landing coach, writer, UK) and when somebody goes touch • The pain is described as that bruise you feel like a pain • Initiating penetration is ‘Like a something that opens up and it’s Pushing that spreads everywhere. (Person moon landing’ – for example, going to break, in this case, the with endometriosis, adenomyosis films in space, where the two entrance to your vagina. • It pushes on my back. (Person & Fibroids, Argentina) ships have to dock, I feel like I’m Excessive tension, burning, with Endometriosis, Sweden) seeing Apollo 13 in my head, and stabbing. (Physiotherapist, even if it’s a centimetre out, ‘This Argentina) Stretching is not going to work’. (Person with dyspareunia, UK) • It feels like he’s stretching my tissues, so that it hurts (Gynaecologist, Sweden)

55 Vulvodynia ‘Darkness’ to convey despair Dark Sky

Sharpness • My whole world is dark. Like a • I used to live a fuller life: love, sky covered by black cloud family, joy, sex… Now I feel like I’m • It’s a pang, a sharp pain, some without any light or hope. an under-woman, I’m miserable say it’s a deep, dull pang and (Person with adenomyosis, and I’m desperate. For example, some say it’s like a sharp, burning, Jordan) currently I’m lying on bed and stabbing pain, they describe it as writhing in pain, I’m taking a very sudden, strong, instant Like a dark force in your life spasmolytics. I’m living on these pain, rather than a gradual onset pills. The sky is always dark, and (Physiotherapist, Malaysia) • You cannot live a normal life, it is I’m always in depression. (Person • It’s like sticking a sharp finger nail as if something is falling on with endometriosis, Russia) into your skin. (Physiotherapist, everything around you, some Malaysia) dark force, the power of Vampire darkness. (Person with Cutting adenomyosis & endometriosis, • Like a vampire has sucked every Russia) bit of life blood from them. • Sometimes they describe it as a (Gynaecologist, Sweden) knife going in and cutting Black Lotus (Physiotherapist, Malaysia) In gaol • The topic of illness, pain, there is Friction also a beautiful image, “Foam of • I get tired very quickly. I feel like Days” by Boris Vian, a book I’m in gaol. There is no personal • Like friction, that something’s where the main character dies life: only me and my uterine stuck and it feels abrasive, that’s from the fact that a flower myoma. (Person with fibroids, how they describe vulvodynia blooms in her lungs, in my Russia) (Physiotherapist, Malaysia) opinion, a lotus, and at some point I had an idea to tattoo a Imprisoned in body Stabbing and radiating lotus on my belly in the place where I constantly had nodes, a • They actually feel imprisoned in • For vulvodynia it is more like lotus flower that blooms there their own bodies. (Person with stabbing pain kind of starting in endless.. What colour would this endometriosis, France) one area and spreading out flower be? Black, a black lotus. (Senior Pelvic Health (Person with adenomyosis & Physiotherapist, UK) endometriosis, Russia)

Burning Black hole

• It’s a burning sensation • A black hole, that pain pulls you (Physiotherapist, Argentina) somewhere, that the world fades • Fire in the area. (Physiotherapist, at this moment and loses its Argentina) lustre...you cease to belong to yourself, that it’s very scary, that Impact on Life this is all before and after, and during, despair, helplessness, Some women used very descriptive well, loneliness. (Person with metaphors to describe the impact of adenomyosis & endometriosis, pain conditions on their lives: Russia)

56 13. PAIN DICTIONARY Against this background of women’s would be very important.” (Person with conducted by the artist Deborah with words. This technique enabled stories, research indicates there is endometriosis, UK) Padfield77 into visual representations of some women to provide a rich space for an enhanced tool to reinforce women’s pain, which she turned into depiction of their pain experiences. We the legitimacy of women’s pain and “It would help a lot of people because ‘pain cards’ for use within patient/ suggest that this could also be used help them to vocalise it. The they’ll say, ‘I have pain’, people don’t clinician consultations. The pain within the ‘pain narrative’ toolkit. importance of metaphors in allowing think about words to describe their dictionary should therefore also women to express their pain, and pain, like the questions you’ve been include pictorial depictions of helping clinicians to empathise, asking me, they don’t think in that way, evocative metaphors and women’s suggests they are key to the ‘lexicon’. you just think, ‘I have pain’, pain is pain expression of pain, thus allowing The dictionary would enable both and it’s difficult to explain.” women the space to express pain women and clinicians to ‘speak the (Gynaecologist, Russia) in the ‘language’ most meaningful same language’, in a way that is to them. meaningful for women. It could be “There definitely needs to be less used both before, and during, medical jargon and more pain “I work a lot with images. I believe that the consultation. descriptors that they [patients] usually the more visual the explanation is the use, like I said, ‘pressing’ pain, woman understands better and she “Here is where my ovary is and it’s just “Yes, so they can choose words and ‘punching’ pain, ‘kicking’ pain, things identifies more with these images… I kind of like this scribbling, just mess, it’s descriptions, yeah, that would be like that – in the medical profession we believe that definitely in this like ‘white noise’, and that’s where all helpful because often if you ask should use layman’s language.” (GP dictionary… it would have to be a lot of of the burning lies.” (Person with someone to describe the pain, their specialising in women’s pain visuals, so that the woman identifies endometriosis, UK) mind goes blank and they just conditions, Malaysia) herself... the pain from atrophy in don’t know.” (Person with ovarian sexual relations is like the fire that they cyst, Malaysia) It is important that the dictionary is could feel at the level of the vagina or multilingual and comprises metaphors during sexual intercourse, that they feel “It would help a lot of people because from across cultures, to ensure an like something burning.” they’ll say, ‘I have pain’, people don’t inclusive conversation. (Gynaecologist, Colombia) think about words to describe their pain, like the questions you’ve been “I think it’s a brilliant idea to start you As highlighted earlier, research asking me, they don’t think in that way, on the blocks of going for an indicates that a ‘toolkit’ is important in you just think, ‘I have pain’, pain is pain assessment or going to get help and consultations when understanding and it’s difficult to explain.” (Person particularly for women who might feel women’s pain. The pain dictionary “There’s the wall and that’s sometimes with endometriosis, Sweden) undermined or might not have the could provide a qualitative, visceral a problem, not always. There’s a hot confidence or even the language, you understanding, used alongside the spot there, which looks like a little “It sounds good because, some people know, women whose English is not 1-10 scale to track the quantitative flame but it’s actually meant to be a cannot use very descriptive words but their first language, that sort of thing. experience of pain over the trajectory vulva, but a flame is very poetic, so I’ll use a lot of like opinion words, ‘It feels So, I think having a pain dictionary and of the condition. It is also clear that go with that! Sometimes it feels like it’s bad’ - well, that’s not really describing having a translation of that into some women either do not know the on fire…. So there’s the wall, which is what it is, so I think it would be good in different languages would be a names of their anatomy, or feel the hot spot, it smarts like a little blast, that respect because I think some fantastic idea.” (Physiotherapist, Jordan) embarrassed to say the word. Our like an ‘Ooph!’ It’s a flame in the sense doctors hear that and think, ‘Oh, it’s research also suggests that drawings that if I felt something hot I’d take my bad for you but it might not be bad for However, people have different way of of the reproductive system and hand away, it’s a twang’ just like, somebody else’, you know, it’s processing, and best expressing, genitals also be used, for women to ‘Ooph!’ but then also associated with subjective, ‘Oh, it feels rubbish’, ‘Oh, information. While language is one point out. Within research interviews that is a feeling of dryness, a vagina well, life’s rubbish’, kind of thing. So it such way, other routes - include with women, we used a projective desert.” (Person with dyspareunia, UK) would be good to have specific words imagery - bring to life pain in ways that psycho-drawing technique, which is to describe the pain properly so that some women may find difficult to helps people access and express everyone’s on the same page, that vocalise. This is borne out by research feelings they may not be able to reach

58 14. CONCLUSIONS AND IMPLICATIONS Our research adds to the mounting before finally finding an answer. They often stigmatised within medical McGill Pain Questionnaire goes part of evidence that women who have described multiple experiences where consultations. the way with this, using pain adjectives painful gynaecological conditions clinicians had little empathy, and metaphors for patients to select, often feel dismissed and discounted discounted their questions and Despite the medical field shifting but it does not represent language across society. In our qualitative concerns, and pushed them towards generally towards more patient- used across all sections of society. interviews, we heard harrowing stories certain treatments (while often centred care, a marked doctor/patient from women that centred around a omitting to mention others). They power imbalance seems evident The women we interviewed provided lack of equality and empathy: within reported that doctors often reinforced within some consultations regarding many metaphors that expressed their their personal relationships where they society’s perceptions that female pain women’s pain. Women feel they are pain vividly. We therefore propose that often felt they had to minimise their should be endured, and in some often not asked to describe their pain there is space for a new pain dictionary pain; in the workplace where they instances their pain was overtly or the impact it has on their lives. In comprising these metaphors, enabling tried to push through pain for fear of psychologised and they were sent to contrast, for those who experienced both women and clinicians to ‘speak losing their jobs; and in medical see psychiatrists. For women with positive consultations, clinician the same language’. It is important that consultations where they did not feel dyspareunia, some doctors mainly empathy was a key feature of good the dictionary is multilingual and heard in terms of either their pain or concerned themselves with the impact outcome: understanding that the comprises metaphors from across their preferred treatments. We heard on the male partner’s sexual appointment might be anxiety- cultures, to ensure an inclusive the far-reaching ways in which pain satisfaction and even suggested the provoking and embarrassing, allowing conversation. conditions affected women’s lives, pain was ‘just in their heads’. the patient to tell her story at her pace, aside from the horror of enduring listening with intent, using jargon-free Moreover, as people have different ongoing pain: the secondary pain of Women left medical consultations language and collaborating on ways of processing and lost relationships; depression feeling belittled and not believed, even treatment plans. The care was patient- communicating information, we and despair; unfulfilled dreams questioning whether they were centred, with women feeling suggest the dictionary could be more and ambitions. genuinely in pain. After seeing several respected as having capacity to powerfully expressive by including doctors and receiving no diagnosis, explain their pain. pictorial depictions of evocative Women’s pain is embedded within but contradictory information, some metaphors and women’s descriptors intertwined cultural beliefs regarding felt the only way forward was to self- However, a history of not being asked, of pain. sex, shame and women’s roles. The advocate. They joined support groups and a lack of confidence, can mean taboo of speaking frankly about sex and organisations, read up on some women may find it challenging The experts and women that we organs and sex means women are women’s pain conditions and returned to express their pain. There is, interviewed believed that a pain often silenced. The historic to doctors armed with this therefore, a need for more tools to dictionary would enable women to prioritisation of men’s sexual information. Some were lucky and enable them to unlock and express it. discuss their pain in a more meaningful satisfaction means some women are visited empathetic doctors that other way. We propose that it be used within unaware that pain during sex is not women had recommended, who Communication of pain is notoriously a ‘pain narrative’ toolkit, with the pain normal or that they too have a right to worked with them to find a suitable difficult and a choice of ‘tools’ is dictionary providing a qualitative, experience sexual pleasure. Alongside treatment. Others discovered that required to enable women to express visceral understanding, used alongside this, women are seen to be ‘hysterical’ some doctors do not like women who it. Research indicates that sole use of the 1-10 scale to track the quantitative and to catastrophise their pain, while question them. the 1-10 pain measurement scale experience of pain over the trajectory at the same time their pain is serves to close down women’s pain of the condition. We also suggest normalised and almost fetishised as Some women, however, do not have experience, reducing it to a number on using tools such as the projective the woman’s ‘lot’ to stoically endure. the self-confidence or lack access to a scale. It is a subjective measurement psycho-drawing technique within the As a result, women are often reticent information to self-advocate. These are and does not acknowledge that not ‘pain narrative’ toolkit, as another way to seek help and when they do, these typically those with the least amount everyone is able to conceptualise pain to enable women to access feelings issues are often played out within the of cultural power: women of colour, as a number. In contrast, the use of they may not be able to reach with medical consultation. women from lower socioeconomic metaphors - seen by pain specialists as words, as well as diagrams of the groupings, the disabled and LGBTQIA+. the ‘language of pain’ - can engender reproductive system and genitals, to The women who participated in our Our research joins previous studies in empathy in the listener, and as such allow women to point out part of the research often had long journeys to identifying that these women are could foster a better understanding body they either cannot, or are too shy diagnosis and saw several clinicians between patient and clinician. The to, name.

60 As a final note, although women’s pain is slowly being brought into the spotlight (in some countries), our research suggests there is still some way to go. Women’s pain conditions need to be more firmly anchored alongside other pain conditions that are afforded respect and compassion. Healthcare providers, schools, the media and brands all have a role to play in educating, challenging perceptions, and enabling women’s voices to be heard and respected. We believe the pain dictionary can contribute to this.

61 LET OUR

BE HEARD

is a change-driving initiative, improving women’s intimate wellbeing worldwide. APPENDIX Market specific views A. Latin America should look pretty, be good wives, and must resign themselves to it. Women’s be mothers. Sharing too much around pain is continuously underestimated, The following section provides some There is a ‘machista’ culture, where concerns, pain, or ailments can fail to specially by men. insights regarding the cultural context women are meant to be seen, not achieve this ‘ideal woman’ image. It of women’s pain and attitudes towards heard. Culturally, women in Latin can expose an unwanted ‘non- “Men haven’t lived with pain like we sex in the individual regions in which America have been taught to be silent femininity’. Female health issues have. When a man develops, he research was conducted. It should be and to not disturb. Even though can also be seen as a barrier to bear ejaculates, which is a simple pleasure, noted, however, that a direct Latinas are characterised as strong children and be judged for it, or it’s not like a woman when she has her comparative analysis of the regions women, and usually run the for sexual encounters with men, first period, and it might hurt. Then was out of the remit of this project, household, socially they must be an undesirable trait. comes pregnancy, which has its own and as such, this should not be deferential to men and ‘pleasant’. set of complications, and pain, and considered a comprehensive or “There’s no woman who wants to talk bleeding, and spotting, and then exhaustive analysis. “We have a saying that goes, ‘When that is hard to lose weight, or that you delivery which comes with excruciating silent you look prettier’ - “Calladita te have more body hair than you should. pain, and then post-partum pain, and Overall, Europe was the most ves mas bonita”. It’s better not to say Or that your hair is falling out. You breastfeeding. Later there’s progressive region researched, anything, because who knows, right?” don’t feel comfortable talking about it. menopause, and then vaginal dryness, although some taboos and shame (Psychologist, Mexico) It’s not who we are supposed to be. atrophy… She’s going to experience regarding sex, and particularly painful It’s embarrassing’.” (Advocate with pain and be uncomfortable. Men do sex, still endure. This heavily impacts their approach to POS, Mexico) not experience pain in their life cycles, sharing their discomforts and pain. like women do. So, men usually don’t Latin America, the Middle East, They don’t want to be a burden or be By sharing or talking about these understand, and the patriarchal Malaysia and Russia, by contrast, are seen as complaining. Women tend to health issues and/or pain, they feel at discourse has just been that we should more conservative. Here, religious feel ignored, diminished and risk, vulnerable and insecure. put up with it.” (Sexologist, Colombia) discourse impacts, as well as misunderstood, especially when it more strictly defined traditional comes to pain and sexual health. Their “What would everyone think, they are “The woman was born to suffer, to get gender roles. issues or concerns are not openly going to label me as having something hurt, to be a mother…she is already discussed, even among other women. wrong, I am damaged goods, no one predestined, before being born, to In the Middle East, Malaysia, China and Topics around sex are filled with taboo wants to feel damaged in any aspect what you will be doing with your life. Latin America, there is generally less and shame. Historically the sexual of life.” (Psychologist, Mexico) The men always had other privileges, discussion regarding health issues and discourse has come from a male and well, I believe that it would have sex to others, for fear of looking weak. perspective, and male pleasure, leaving “I am going to be exposed to people been good that they would suffer from Shame can also potentially be brought women on the sidelines. learning that I am not having sexual endometriosis and not us.” (Person upon male partners if women discuss relations with my husband. So, with endometriosis, adenomyosis & private topics, such as problems with “There was a medicine approved by someone could come in and try fibroids, Argentina) sex or infertility. Women are also the FDA, Flibanserin, for sexual desire in to offer my husband that expected not to burden others. In women, and there was such a big deal which I am not able to give him.” Religious codes condition the China, in particular, pain experiences and scandal made about it, that it (Sexologist, Colombia) conversation with shame and taboos. are played down to others to avoid never came to Latin America. You Catholicism has influenced Latin making them feel uncomfortable, or would take it like Viagra, for women “Also, the stigma of having an issue you American culture greatly, impacting looking like one is an ‘attention seeker’. who don’t have desire and arousal and get labelled as the ill one, the how women should behave. Modesty Across these regions, younger women we haven’t been able to get it in Latin pathological one, ‘There is something is considered an asset and women are and more educated and affluent America, it was considered a scandal.” wrong with her,” like in mental health expected to be chaste. Anything women are generally more likely to (Sexologist, Colombia) issues “She is schizophrenic or has this connected to the genitals should be push back against these attitudes and or that” and no one wants to feel kept private, and shame and guilt is seek help. Expectations regarding femininity halt vulnerable.” (Psychologist, Mexico) associated with these topics. Women conversations about women. are expected to stay a virgin until they Culturally, women are set to very high There is a cultural belief that pain is reach marriage, and after that, sex is standards and a specific path. Women part of being a woman, so women meant for procreation. There is also a

64 long history of suffering in the Catholic can think of freezing your eggs’.” almost non existents. Long distances, Women’s pain is associated with the religion and achieving greatness (Advocate with endometriosis, lack of financial resources, less reproductive system, and, for older through sacrifice and pain. Argentina) experienced medical staff on rural women in particular, this is intrinsically areas, lack of knowledge/ information, linked with shame. Women use Younger women are defying culture Even though there is still a set, more are among the reasons for limited euphemisms that men do not standards and breaking their silence. conservative, female cultural standard access for these communities. understand to discuss taboo subjects. With the help of the Internet and social to live by, which creates tension Also, past lived experiences have media, they are taking the bull by its between what they want to be versus instilled fear and a lack of trust “Until recently, periods and everything horns. They research their symptoms what they are expected to be, young towards doctors related with this part of your body that or conditions, are part of anonymous women realise sex does not need to is lower than your stomach was a support groups/chats and arrive at be taboo. Despite secrecy and shame “They have been experimented with closed topic, starting from the Soviet their doctor’s appointment with a around sex talk, young women their bodies historically, their mothers Union, women normally didn’t discuss self-diagnosis. understand they should feel pleasure or grandmothers, so they are afraid to it.” (Gynaecologist, Russia) and are taking steps to feel more go to a doctor and say, “I have this type “Now young people go online; it is like powerful. Little by little, through of problem”.” (expert in racial disparity, “The idea to hide it, it creates a the bible there. They get on forums spreading of information and media, Latam) language that men will not and can start speaking about pain in they continuously push against it. understand, it’s like to hide it from those forums anonymously and can B. Russia them, to keep this distance between start expressing themselves. This un- “Many times, they come with the women and men and to have this stigmatises the fact that my close diagnosis. It’s interesting, sometimes Russian culture is strongly associated whole language available only to family labels me as there is something they come for a consultation and tell with pain and suffering. This is partly women. You can even use these wrong with me. There I can express my me “Doctor, I think this is what I have”. influenced by Russian Orthodoxy, but metaphors in public but between pain. There, I may be misinformed, or So, women, little by little are not afraid also has roots in the Soviet era and women, and even in front of men, maybe not, but at least speaking to talk about their sexuality’.” war. There is a cultural belief that one because men will not understand what about expressing pain, I can do that”. (Sexologist, Colombia) must suffer in order to grow. you mean but women will understand, (Psychologist, Mexico) so you can even use these metaphors For ethnic minorities, lack of equity, “Russian culture is a culture of pain in public places and you will not be “Teenagers come in with their access and trust complicate matters actually and pain, in our culture, is ashamed.” (Gynaecologist, Russia) diagnosis that tell you that they already even further. Historically, indigenous legitimate and pain is appreciated in know what they have, and they need and black communities have been our culture. Having pain and However younger women are this or that. Furthermore, they reach seen as ‘less’. This inequality has had expressing pain is a part of Russian challenging the perceptions of shame. me online as well. They tell me ‘I found major negative consequences on culture.” (Semiotician, Russia) They are speaking more openly about out on the internet, and I found that health, and how indigenous and black the subject, periods, and challenging you are going to be able to help me’.” communities are treated medically. “I believe that this attitude to pain is a the taboos. (Psychologist, Mexico) heritage of the Christian culture, where “There is malpractice often because pain was an important part of the path “Yes, for educated young girls under 30 Advocate women, that have suffered they are not even seen as humans.” to God”. (Semiotician, Russia) it’s a normal topic to discuss and they from disabling pain, want to spread (expert in racial disparity, Latam) can talk openly about it, discuss it, the word, inform, and get women the “Pain is a heritage of the Soviet period, write about it, write about their help they need. This inequality is seen throughout the with its deprivation, hunger and cold.” experience, sometimes they even chain, from access to medical services (Semiotician, Russia) create self-help boxes at the ‘We need to spread the word and all the way up to follow-up treatments. universities and they put in pads in need to say that you can live a better It is difficult to reach the right doctor “You can only improve and endure case your period starts you don’t have life, change the quality of life, that you or be referred to a specialist, through the pain, you can become it in your bag.” (Gynaecologist, Russia) can have a timely diagnosis, and if you appointments are short and much is better through the pain and that’s how get a diagnosis when you are 17 years lost in translation, medicine/treatment we now understand pain; it’s sacrificial “The younger generation is different; of age and you do not want to think offered tends to be the cheapest/not in our culture.” (Semiotician, Russia) they’re more reflective on their pain about having a family right there, you best one and needed follow ups are and they will speak about it with

65 doctors, they will not be ashamed of examination, and you feel humiliated “Pain description is very specific, we “I also want to emphasise that sex- their discomfort during periods and and dirty and very disgusting to separate the bone from the muscles, related topics are generally suppressed they believe that the taboo should not everyone. I know that my adult friends, from the chi, or from the feeling, so I or kind of taboo in China, even for the exist anymore.” (Gynaecologist, Russia) who are my age, do not go to a can tell you about my pain from younger generation, sex education is gynaecologist.” (Person with different levels. In my experience, in still poor, so it doesn’t help women to There is particularly low awareness adenomyosis & endometriosis, Russia) the West it’s more like, ‘My heart feels get to know their own bodies and to of endometriosis: pain’, ‘My stomach feels pain’, ‘My back protect themselves. There’s still shame “Well, we’re just scared of feels pain.’” (Semiotician, China) around sex – there are some younger “There is the World Endometriosis gynaecologists. You sit on a chair, they women who enjoy their bodies but I’m Association. If you open its website, would ask you when you had last had Culturally, pain can be a sign that talking generally – but I think it relates there is a list of countries, a list of sex, if you had had any abortions. They healing is taking place. to why, when we talk about pain, websites all over the world. There are, will treat you rudely.” (Person with especially.” (Gynaecologist, China) I’m not sure, two websites in Mexico, a adenomyosis & endometriosis, Russia) “The Chinese massage is very hard…we website in Sweden, in Japan, two kind of like it because we know the “There’s actually a really good system websites in Australia, in New Zealand. Ethnic groups tend to feel greater moment we feel the pain that it’s for women in China but it’s not well And then you may have an shame about seeing gynaecologists; already in healing, if we don’t feel the used; in China women can have free afterthought, ‘Stop, how many people whereas young women feel less. pain in the therapy it’s not enough to birth control pills and condoms but not live there? But they have two websites heal it.”. (Semiotician, China) everyone takes advantage of it to support.’ Well, I’m not sure, but the “It’s mostly Muslim women but also because they feel ashamed about it British website could be taken as a Chechens, Tatars, Bashkirs and But as a culture, negativity regarding and some people don’t know about pattern. I don’t know Spanish, I don’t Armenians and Georgians. - cultural pain is socially sanctioned, as it at all, so health education is know normally any other languages drivers based around shame.” discussing it could make others feel something that could be improved.” which I need to know to evaluate (Gynaecologist, Russia) uncomfortable. Negative experiences (Gynaecologist, China) them, but what is available in English is, of pain are only discussed with a even in its present variant, which is also “For younger women Slavic women – doctor or a very close family member. “When it comes to sex-related pain not quite a dream, but which is the bar 18-25 years - it’s really not common to However, it is more acceptable for it’s still only talked about privately as far from us as any planet, because feel ashamed, they’re more afraid of women to show pain than men. because of the taboo of sex.” we have nothing. Absolutely nothing, feeling pain during the examination (Semiotician, China) aside from a clinic that advertises the process.” (Gynaecologist, Russia) “I don’t believe that the Chinese are services of its doctor or a doctor who is open to talk about the negative or the Conversations around gynaecological a blogger. That is, there are individuals C. China pain side of the experience, they tend pain are also frowned on, unless who sell something, medicine or some to focus on the bright side, or the among very close friends/family, as kind of medical care. But there is not a Pain descriptors in China are very happy experience; people would be they are linked to sex organs. As a website, which would be an specific, and Chinese people are well- offended if you’re too straight about result, there is some shame around independent source of information in versed in separating out the pain in their shortcomings or the negative seeing a gynaecologist. the field.” (Person with adenomyosis & different elements of the body: things.” (Semiotician, China) endometriosis, Russia) “There is some level of suppression in “First you’re asked, ‘Which part of your “There is a gender difference; if you’re this type of pain in particular because Some women have concerns and fear body feels the pain?’, your response a man it’s not very manly to express it’s sex organ related; you’re about seeing gynaecologists, which is might be, ‘This part of my head’, then your pain too much but it’s more suppressed, you’re silent, you don’t formed from past experience. They they’ll ask, ‘Is it on top of your head, acceptable in society for women to tend to express these feelings publicly, have a reputation or being rude the inside of your head, or is it like a express their pain, either physically or or very strongly, maybe with your close and judgmental. muscle on the side of your head?’ and emotionally.” (Semiotician, China) friends or your mum or your doctor, then they’ll ask, ‘What level of pain do but not to the public because it’s “The first time we come across you feel; a little bit of pain, is it very Although women will talk about sexual organ related, so it’s kind of gynaecologists was at school, and painful, extremely painful or is the pain period pain, discussion about sex and private, even friends don’t talk about it these are scary people who talk bearable?’” (Semiotician, China) painful sex is largely taboo. There is a that often.” (Gynaecologist, China) boorishly to you during a medical lack of sexual health education.

66 “I’d say over 80% of women feel some Overall society is conservative though, even your legs are down there, you pain…Their first port of call are things degree of shame in talking about it and attitudes towards girls and know!? - so I tell them to point to like meditation or acupuncture, the and even talking to a gynaecologist, women are protective. Female pain is where exactly it is and then they start Chinese love acupuncture, Malays and yes”. (Gynaecologist, China) normalised, and endometriosis is to point, so I tell them, ‘It’s okay, you Muslims go for the traditional massage, usually dismissed by mother/aunties as can tell me’, so I have to coax meditation, the Indians love it, so they Shame is less prevalent among more being painful periods, which will pass them.” (GP specialising women’s tend to go towards all that for the pain affluent women who visit private after childbirth. Male sexual conditions, Malaysia) management because they feel that clinics, however. Typically, they have dissatisfaction (due to their wife’s pain) Western medicine and the doctors travelled outside of China and have and concerns around their wife’s Women with vaginismus/painful sex don’t really help them.” (GP specialising different perspectives regarding fertility are the key drivers for women often bear in silence and only seek in women’s conditions, Malaysia) gynaecological health. seeking medical help. Pain is less of a help when their partners express driver, and women find it difficult to resentment. Men often don’t Religious and spiritual discourse links “I work in an international clinic and express their pain. understand this is a condition, they pain to punishment for misdeeds, most of the patients are from a similar think women are ‘spoiled’, or just don’t which can lead to women believing it socio-economic background and it In general, there are barriers talking like them. Women often self-diagnose is God’s will and something they seems better for them, they don’t feel about sex, except for the most and may buy vaginal dilators from the must endure. ashamed, they’re more open to talking educated middle and upper classes internet – which can be dangerous if about all kinds of issues, working who tend to be more open. Taboos there are underlying conditions. “One of the things is to help them in the public hospital is more difficult, around sex / genitals impact on cross the barrier, to get them to I need to talk to them and women presenting to a specialist and With endometriosis, women tend to understand that they’re not being encourage them to talk about create embarrassment, fear or silence. self-diagnose (using the Internet) and punished, that they haven’t done things.” (Gynaecologist, China) Religious taboos make women very come to the clinic mostly worried they something wrong and that they don’t guarded about trusting a doctor if will not have children. Women rarely deserve to get pain.” (Physiotherapist, “They have more resources, they’ve they are sexually active before have privacy with their doctor/ Malaysia) had the chance to travel, they know marriage. There is particular shame gynaecologist. 20% are accompanied how to take care of themselves, and fear for women who have by their husbands, many are Gynaecological conditions are rarely especially those who’ve lived or been abused. accompanied by mothers/ aunties. treated holistically. Gynaecologists studied outside of China and may have tend to focus on issues requiring seen gynaecologists abroad, they have Women find it difficult to talk about There is high usage of traditional surgery or infections – which require more choice.” (Gynaecologist, China) their bodies. They often do not give medicine, especially among the older bio-medical treatment. They rarely detail on their problems, and it has to generation who are less trusting of refer to physiotherapists. D. Malaysia be coaxed out, starting with general Western medicine. questions, moving on to the bladder, E. Middle East Malaysia is ethnically and religiously gut health then progressing to “Like in China, there is some recourse diverse and has one of the highest gynecological pain. Many women refer to traditional massage, herbs and other Awareness of gynaecological income disparity rates between rich to their genitalia or other parts of their traditional remedies according to the conditions is not high in the Middle and poor amongst Southeast Asian reproductive system as ‘down there’. respective traditions (Indian, Chinese, East, especially in Saudi Arabia. nations. In tune with the diversity in Malay…) to manage pain, which meets Women may seek out information the population, access and attitudes “My patients generally just don’t know nature-based new age approaches from media in other countries. towards women’s healthcare vary. the right words to describe anything – in private holistic clinics for Religion has a big impact, with Muslim for example, you’ll be surprised, they the most privileged patients”. “I used to always watch Lebanese and and some Hindu populations being don’t know the appropriate word to (Physiotherapist, Malaysia) Egyptian TV shows where they spread more conservative in attitudes towards describe their genitals! – so, ‘I’m having awareness about endometriosis and women and sex. There are also pain in my genitals’, we have that in “There was a clinical study run by diseases, here in KSA they don’t do variations according to urban and rural various words – excuse my language, certain major hospitals in Malaysia to that! And even if they did shows for populations, education levels and age. but if someone says ‘pussy’, it’s bad, so check at the level of chronic pain in the awareness they will only talk about they don’t say it, they say ‘down there’ Malaysian population and you’d be sterility and promote a certain doctor - when someone says ‘down there’, surprised, about 7% suffer from chronic only, they only talk about IVF without

67 explaining to people what that means life would be good and both your However, there is a lot of their careers, but less acknowledged because they refuse to think that their husband and you would feel calm. The embarrassment and shame associated that sexual pleasure is equally cases requires IVF, and I was one of husband would not behave in a way with talking about sex and sexual pain, important to them as it is to men those people until I got educated against you. Sometimes, they might even to professionals. Pain or suffering still is seen as a about the topic and others should as say something like ‘I have to look for ‘woman’s lot’ in certain areas. well.” (Person with Endometriosis, another wife,’ and even if he is just “They are open, but with certain things Semioticians speaks of enduring Saudi Arabia) joking it would be bad.” (Person with such as pain during having sex, I have expressions like “you have to suffer to Endometriosis, ME) to ask them this question. I ask, ‘Do be beautiful” and a number of Younger women tend to actively seek you experience pain when having demeaning expressions for women more for help, and the ability to be “I was mentally tired and afraid, my sex?’, ‘Do you have pain in a specific who i.e complain about pain more financially independent aids this. husband was also mad and this was position?’. I ask them the question and (douillettes, femmelettes, chochottes) actually a bad experience and bad they start to open up.” (Endometriosis and same used for men judged to “We used to notice this before, but marriage because I broke up with my expert/gynaecologist, ME) exaggerate pain. now since I have been in practice for husband since he wasn’t around 30 years I could say that 20 understanding at all and he used to tell “When he asks me about my sexual LGBTQ+ Black, Asian and mixed years ago the girls were hesitant to visit me that I’m afraid of what people will intercourse I feel shy to answer him, I heritage groups face particular issues a gynaecologist because they thought think and he was always angry and wouldn’t answer honestly.” (Person and many harsh barriers. There has that it means something wrong if they nervous which made me with Endometriosis, ME) been a drive to educate regarding visited a gynaecologist. While now the suffer even more!” (Person with endometriosis. There is a clear girl comes alone from the university Endometriosis, ME) “He’s also very religious which makes departure in France since about 2014. after searching online.” (Endometriosis me shy to speak to him, sometimes I A number of associations have Expert/Gynaecologist, ME) “When my husband knew that I will even change the subject.” (Person with launched public information have to go through an IVF he thought Endometriosis, ME) campaigns around endometriosis (e.g. “Now, she has become financially that this would be a hard thing so he Endotime ‘Periods are natural, pain is independent and economically, so this gave up on me and got engaged to F. Europe not’), there has been more education gave her more freedom to seek another woman!” (Person with on this topic and other women’s medical advice for any illness and not Endometriosis, ME) In the countries we researched – UK, gynecological issues in professional only the pain or any chronological France and Sweden – there is circles, and young women are well issue. She is free to do that alone and Owing to the shame/honour cultural relatively less shame regarding informed through the internet and this is something good.” (Endometriosis codes of the Middle East, women can gynaecological conditions. associations. Besides the media expert/Gynaecologist, ME) sometimes feel more comfortable campaigns, events such as talking to a doctor about The general background in France is endometriosis sponsored runs have As with Malaysia, the key issues that gynaecological pain than family that of a moderately progressive spread knowledge and permitted women seek help pertains to men’s members. society within the Western European others (husbands, family friends) to get lack of sexual satisfaction (due to the context; legislation is progressive and engaged and have served as an woman’s pain), or concerns around “I used to feel embarrassed to tell my there is free public debate around important lever to promote the topic infertility. These issues can cause public mum or sister but not the doctor, I many societal issues. But there is a of period pain within labour rights/ the shame for men. This can put a strain used to speak to her very comfortably. feeling that the medical establishment corporate world. on marriages and women are fearful Because I felt like she will is quite conservative and patriarchal, that their husbands will seek divorce understand me since she has seen despite the prevalence of women Sweden is quite progressive, although, – which is borne out in reality. many similar cases.” (Person with gynecologists and GPs, and that again, barriers exist. There is little Polygamy can also mean that Endometriosis, ME) societal prejudice around a number of shame in seeing a gynaecologist husbands find another wife. women’s issues, specifically periods, although women still feel some shame “I tell the doctors everything and do women’s pain and sexual pleasure, during the actual consultation. “I feel very nervous. As you know, not feel shy about it, but with my remain. For instance, it is very much when sex relations between husband friends and sisters I do not speak about accepted for French women to work, and wife is good and your husband the private things.” (Person with drop their kids off at a crèche during feels satisfied about having sex, your Endometriosis, ME) daytime and achieve self-fulfillment in

68 “Sometimes we still feel that women whose recently published book consider men’s sexual satisfaction is are reluctant to go to a gynaecologist discusses her experiences seeking a most important. because they’re reluctant to talk diagnosis over 21 years. Author, Dame about the problem they’re having.” Hilary Mantel, has also talked publicly “I guess the idea is that it doesn’t really (Gynaecologist, Sweden) about her struggles with feel like an illness, it doesn’t really feel endometriosis, that led to the like a disease, it feels quite audacious to In the UK, women’s pain conditions breakdown of her marriage. go to your GP and say, ‘I would like sex have historically been ignored in to feel nice, please … thank you’.” society and women have felt pressure There is a still some level of taboo and (Person with dyspareunia, UK) to keep silent. More work has been stigma surrounding sex in the UK, “They always worried about how it was done recently to try to bring women’s despite it being quite progressive. Sex affecting the man and how that then pain into the public eye and validate it, is also embedded within notions impacted on the relationship, not, ‘Oh, breaking down the shame and stigma regarding what makes a body ‘sexy’ it’s affecting you, how does that traditionally associated with it. The All and what a sexual experience should impact the relationship?’” (Person with Party Parliamentary Group on be like. Painful sex can therefore be dyspareunia, UK) Endometriosis was launched in 2018 to seen as a failing, and shame ensues, create more awareness in parliament. both in terms of not satisfying a This group actioned research into partner but also not being a women’s experiences of ‘whole woman’. endometriosis, culminating in a report in 2020: “Lots of people just feel like they’re really on their own with it and there’s “This report is a long-overdue account lots of taboo around speaking about it of how those with endometriosis [painful sex]…There’s just so many throughout the UK deserve better things that we’re led to believe about when it comes to their healthcare. sex, what sex should look like, and so It provides recommendations on when you don’t feel like you measure how care and support need to be up to that, or you’re not having the improved, and what practical changes kind of sex that you see on television, the Government can make to like on a late night Channel 5 film and ensure the voices of the 1.5 million things like that, then you feel, ‘It must people with endometriosis are be me, I’m the thing that isn’t quite heard.” Sir David Amess MP, Chair, right’.” (Person with dyspareunia, UK) All Party Parliamentary Group on Endometriosis78 “I want the word for ‘emasculate’ but for females, it ‘affects your femininity’, A debate regarding (the lack of) it makes you feel like ‘not a full workplace support for women with woman’…I think that the language endometriosis also took place in surrounding that is a lot to do with parliament in 2019, alongside a Work ‘failure’ and a lot to do with ‘feeling like Foundation report that called for you don’t work’ and this feeling that the perceived taboos around women’s you’re ‘turned off’ and you’re ‘not reproductive health to be ‘shattered’. sexual’.” (Person with dyspareunia, UK) High-profile women have spoken out about their struggles with Women can feel almost frivolous to endometriosis recently, including seek help from doctors, especially as Emma Barnett, journalist and presenter heterosexuality normativity is often on Women’s Hour on BBC Radio 4, assumed and some doctors still

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