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.