MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function MS-related sexual dysfunction MS, SEX, 3
Why we should ask about 4 sexual health and wellbeing SEXUALITY and 5 How to take a sexual history Assessing someone with MS- INTIMACY 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal? A Consensus Guide
Law and ethics for Healthcare Professionals by 12 Healthcare Professionals 13 MS and contraception
14 Top tips and resources Biogen Idec have paid for the design, development and printing 15 References of this item, but have generated none of the content. MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1 A person’s right to a good quality sex life:
Defining ‘normal’ 2 sexual function • The right to love and be loved 3 MS-related sexual dysfunction • The right to touch and be touched Why we should ask about 4 sexual health and wellbeing • The right to share intimacy 5 How to take a sexual history • The right to be a sexual human being Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal? "I'm 100% behind the idea of promoting 12 Law and ethics disabled people as ordinary, sexy,
13 MS and contraception passionate beings." Lesley Betts, person with MS 14 Top tips and resources
15 References MS, SEX, SEXUALITY and INTIMACY 1 Background to this guide MENU Background to this guide 1
Defining ‘normal’ 2 Defining ‘normal’ sexual function 2 sexual function
MS-related sexual dysfunction 3 3 MS-related sexual dysfunction 4 Why we should ask about sexual health and wellbeing Why we should ask about 4 sexual health and wellbeing
How to take a sexual history 5 5 How to take a sexual history Assessing someone with MS-related Assessing someone with MS- 6 6 related sexual difficulties sexual difficulties
Supporting the partner 7 7 Supporting the partner
8 Medications that can affect sex 8 Medications that can affect sex 9 Practical strategies to suggest Practical strategies to to the patient 9 suggest to the patient
How to maintain or restore 10 intimacy 10 How to maintain or restore intimacy
Sexual diversity: 11 what is normal? 11 Sexual diversity: what is normal?
12 Law and ethics 12 Law and ethics
13 MS and contraception 13 MS and contraception
14 Top tips and resources 14 Top tips and resources 15 References 15 References 3 MS, SEX, SEXUALITY and INTIMACY Introduction Don’t assume that somebody is or isn’t having sex. MENU Open the door. Maybe say something like: ‘Some of my patients find that sex is an issue for them and Background to this guide 1 “Don’t assume that they find it helpful to discuss this. If you feel this way I would be very happy to discuss this issue with you.’ Defining ‘normal’ somebody is or isn’t having 2 sexual function This enables someone to talk about this issue and sex. Open the door. Maybe also normalises it, so the patient can see that they 3 MS-related sexual dysfunction say something like: ‘Some of are not the only one. Don’t assume that just because a person appears Why we should ask about my patients find that sex is an 4 sexual health and wellbeing issue for them and they find it confident in certain areas of their life that they will be confident enough to bring up the issue of sex and How to take a sexual history 5 helpful to discuss this.” sexuality with a doctor or HCP. They may not.
Assessing someone with MS- It is your job to give the patient permission to bring 6 related sexual difficulties up this subject. This is a very important role for the
Supporting the partner HCP. It can be difficult enough for a non-disabled 7 person to talk about sex, let alone when MS is part of the situation as well. 8 Medications that can affect sex You don’t have to know all the answers. You need to Practical strategies to know how to listen, how to open the conversation 9 suggest to the patient and when to refer somebody on − or say that you How to maintain or restore don’t know the answer but you will find out. Or 10 intimacy maybe there is somebody else in your practice who Sexual diversity: has a bit more experience. 11 what is normal? Be honest with yourself about what stereotypes 12 Law and ethics or hang-ups you have that could become barriers between you and your clients. Look at how you 13 MS and contraception deal with these barriers − counselling for health professionals is very valuable, as is peer group work and teamwork. Make discussing sex and sexuality 14 Top tips and resources something that you as a team do, so that you can gain support and information from each other. 15 References 4 MS, SEX, SEXUALITY and 1 Background to this guide INTIMACY There is a wealth of information about sex and But sexuality is so much more. As Girts (1990) sexuality, implying that it’s easy to talk about, says: ‘sex is something we do and sexuality is MENU find out about, and that everyone is having it something we are.’ Background to this guide without difficulty, shame or guilt. But we know 1 This is important; it demonstrates that whilst that this is not the case for men and women sexuality includes sex it is more than the act Defining ‘normal’ affected by MS. Sexual health and sexual of intercourse. People are sexual beings from 2 sexual function wellbeing are essential aspects of MS care and birth to death; sexuality is a complex concept management if patients are to have a good 3 MS-related sexual dysfunction to articulate and often generates a highly quality of life. personalised meaning. Like intimacy, it is Why we should ask about Sexuality connects us to a deeply important part dynamic, changing over time and sometimes 4 sexual health and wellbeing of ourselves; it is a universal concept, common as a response to life experience. Sexuality is a to all human beings, whether experienced personal journey over the course of a lifetime 5 How to take a sexual history or inexperienced, regardless of age, gender and however it changes, it is important to health Assessing someone with MS- or ethnicity. Consultations with healthcare and wellbeing. 6 related sexual difficulties professionals (HCPs) can provide a confidential The World Health Organization (WHO, 2002) Supporting the partner space to discuss sexual health problems. 7 defines it this way: Intimacy means different things to different “Sexuality is a central aspect of being human Medications that can people at different times. It changes as the 8 affect sex throughout life and encompasses sex, gender individual is exposed to different experiences like identities and roles, sexual orientation, eroticism, Practical strategies to disease and ageing. Intimacy can be cognitive – 9 suggest to the patient pleasure, intimacy and reproduction. Sexuality when two people exchange thoughts, share ideas is experienced and expressed in thoughts, How to maintain or restore and enjoy similarities and differences of opinion. fantasies, desires, beliefs, attitudes, values, 10 intimacy “Sex is something we Intimacy can involve mutual activities. There is behaviours, roles and relationships. While Sexual diversity: also sexual intimacy, but this is so much more sexuality can include all these dimensions, not do and sexuality is 11 what is normal? than sexual intercourse. all of them are always experienced or expressed. something we are.” 12 Law and ethics Terms associated with sexual health are often Sexuality is influenced by the interaction of misunderstood or misinterpreted. Sexuality has biological, physiological, social, economic, 13 MS and contraception lost its broad meaning and is now commonly political, cultural, ethical, legal, historical and used to identify an individual’s sexual preference. religious and spiritual factors.” This often puts the HCP off asking about issues 14 Top tips and resources As specialists in regular contact with people with involving the word ‘sexuality’, because it is often MS, we have an obligation to enquire about any misconstrued by the patient. 15 References sexual difficulties the patient is experiencing. 5
MS, SEX, Authors SEXUALITY and RGN, BSc (Hons), Lecturer INTIMACY How can we claim to provide holistic care if we Nicki Ward-Abel are not assessing sexuality and intimacy? We Practitioner, Birmingham City University and should not leave it to ‘someone else’ to explore. Queen Elizabeth Hospital, Birmingham MENU NICE guidelines for the management of multiple John Pohorely RGN, RMN, MS Specialist Background to this guide 1 sclerosis in primary and secondary care (NICE, “Sexual wellbeing Nurse, Frimley Park NHS Trust, Surrey 2014) state: refers to the patient’s Helena Brown RGN, BSc (Hons), Defining ‘normal’ 2 sexual function “Every person (or couple) with persisting sexual perception of their MS Specialist Nurse, Walthamstow dysfunction should be offered the opportunity Sian Locke RGN, BSc (Hons), MS Clinical 3 MS-related sexual dysfunction sexuality, sexual life, and to see a specialist (with particular expertise in Nurse Specialist, The Helen Durham Centre, sexual problems associated with neurological sexual relationships. It Why we should ask about Cardiff and Vale 4 sexual health and wellbeing disease) and offered, as appropriate, advice on is important that people lubricants and the use of sexual aids, and other Lesley Catterall RGN, MS Specialist Nurse, How to take a sexual history feel they have good 5 advice to ameliorate their sexual dysfunction.” Bletchley Community Hospital, Milton Keynes Sexual wellbeing refers to the patient’s sexual wellbeing if they Katrina Potter RGN, BSc (Hons), MS Assessing someone with MS- 6 related sexual difficulties perception of their sexuality, sexual life and are to live with a good Specialist Nurse for Kent Community Health sexual relationships. It is important that people RN Dip, MS Specialist Nurse, Supporting the partner quality of life.” Helen Owen 7 feel they have good sexual wellbeing if they are Morriston Hospital, Abertawe Bro Morgannwg to live with a good quality of life. University Health Board 8 Medications that can affect sex As MS nurses, we can’t, of course, be specialists Emma Matthews RN, BSc (Hons), in every aspect of care. But we can provide MS Clinical Nurse Specialist, Northampton 9 Practical strategies to suggest to the patient specific advice and suggestions to benefit General Hospital someone with MS. It is understandable that How to maintain or restore Alison Carolan RMN, CAT Dip, MSc, 10 intimacy many clinicians, nurses or HCPs feel hesitant MS Mental Health Nurse, Kings College about broaching this subject, but this discomfort Sexual diversity: Special thanks: Hospital, London 11 what is normal? can be eased by reading, listening to experts, becoming familiar with the language involved Reviewed by Simon Webster, MS Trust Denise Middleton Dip COT SROT, 12 Law and ethics BA (Hons), MS Clinical Specialist, Milton and starting to discuss and ‘prescribe’ sexual Lesley Betts and John Greenwood treatment or management by reflecting real Keynes Community Health Services MS and contraception Alex Cowan 13 scenarios with colleagues. Annette Leach RGN, BSc (Hons), MS Nurse Birmingham Spokz People Specialist, Royal Berkshire Hospital, Reading 14 Top tips and resources Oyster Healthcare Communications Susan Duplock RGN, MS Nurse Specialist, Royal Berkshire Hospital, Reading 15 References 6 1 Background to this guide MS, SEX, SEXUALITY and INTIMACY Why HCPs need this guide
Research suggests HCPs generally feel uncomfortable It will enable you to: MENU discussing sexuality. They lack knowledge, education and discuss key concepts of sexual health and wellbeing Background to this guide • 1 training so they do not assess, teach, support or counsel patients about it. In 2013, the MS Trust ran an educational • associate how living with MS can directly or indirectly affect sexual health and wellbeing Defining ‘normal’ ‘masterclass’ in London, focusing on MS-related sexuality, 2 sexual function which was attended by a range of experienced UK health • identify the right sexual assessment tools and social care professionals who had an interest in this explore how a sexual history is taken 3 MS-related sexual dysfunction • sensitive area of care. This masterclass concluded MS • communicate, regarding sexuality, with more Why we should ask about specialists should be better informed about sexual health confidence 4 sexual health and wellbeing and wellbeing. • propose appropriate, effective strategies for promoting 5 How to take a sexual history ‘MS, Sex, Sexuality and Intimacy’ focuses on people sexual health and wellbeing affected by MS in a more holistic way. Personal factors and • support specialists as they discuss these sensitive issues Assessing someone with MS- a lack of specific knowledge and skills block HCPs from identify ways you can develop your skills and 6 related sexual difficulties • addressing sexuality and intimacy in the MS population. knowledge of this area of care. Supporting the partner Some lack confidence discussing sexual issues, even if 7 they know how much these affect an individual’s quality It will be updated on an ongoing basis. of life. This guide covers cultural differences, the sexuality 8 Medications that can affect sex of gay, straight, bixexual and older people. It considers Practical strategies to professional conduct, law and ethics, education and 9 suggest to the patient provides resources on sexual dysfunction, intimacy, sexual HCP self-assessment checklist Self-assessment will be a beneficial feature of this resource, allowing How to maintain or restore relationships and sexual identity. It will appeal to all HCPs, 10 intimacy not just specialist nurses. the HCP to be actively involved in the evaluation of their learning. A checklist will be added to a future edition of the guide. It will enable Sexual diversity: This guide benefits enormously from the advice and 11 what is normal? the HCP to identify strengths and weaknesses in their knowledge experience of MS patients who have been, and will and understanding of sex, sexuality and intimacy for people with MS. continue to be, involved at all stages. Lesley Betts, featured 12 Law and ethics Assessing one’s own learning needs is motivating in itself and it is more on the cover, has contributed one of the three case studies likely there will be a change in attitudes and behaviour. Accompanying that show the unique nature of every individual’s intimate 13 MS and contraception the checklist will be a framework for an action plan to help the HCP life. The case studies and involvement of people with MS target their current and future needs and identify how those will be also demonstrate how much resilience, creativity, honesty Top tips and resources addressed. 14 and commonsense is called for in the face of constant challenges. 15 References Click here for references 7 –
MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function “How can we claim to provide holistic care MS-related sexual dysfunction 3 if we are not assessing aspects of sexuality Why we should ask about 4 sexual health and wellbeing and intimacy...we have a duty, even an 5 How to take a sexual history
Assessing someone with MS- obligation, to enquire.” 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References
MS, SEX, SEXUALITY and 2 Defining ‘normal’ sexual function INTIMACY Sexual expression is one of the most basic human condensed the sexual response into three phases skills,” and finally for practical, utilitarian reasons: needs, which persists despite disability or illness of desire, arousal and orgasm. Kaplan’s addition ‘‘I wanted to change the topic of conversation’’; ‘‘I MENU (Maslow, 1954). Sexuality is a vital and integral part of ‘desire’ is a particularly important concept to wanted to improve my sexual skills.’’ of being human (WHO, 2002). It directly affects consider when considering the female response. She Women were more likely to have sex for non-sexual Background to this guide 1 an individual’s quality of life and there is a clear wanted her model to reflect that, for women, desire and emotional reasons, such as: ‘‘I wanted to feel connection between sexuality and health (WHO, is important because it leads to an increase in sexual feminine’’; ‘‘I wanted to express my love for the Defining ‘normal’ tension, and thus arousal. The desire leads to arousal person’’; ‘‘I realised that I was in love.’’ 2 sexual function 2002). Sexuality is what makes us who and what we are. However, sexuality is not just about the sexual through touch, imagery, and other stimulation; this To understand the female response even more, you MS-related sexual dysfunction 3 act or sexual activity; it is so much more than this, is called the plateau phase. Eventually the arousal may wish to read the work of Rosemary Basson who whether in health or illness. escalates to orgasm and a release of sexual tension. listened to patients with spinal cord injury. Through Why we should ask about The sexual response cycle is well documented. There are many critics of these models of sexual this she concluded that women can feel spontaneous 4 sexual health and wellbeing Originally researched by Masters and Johnson, it response, not least as a result of the work of Meston desire at the start of a relationship, but when How to take a sexual history relationships become more long term, any sexual 5 is a sequence of physical and emotional changes & Buss (2007) who conducted two pieces of research that occur as a person becomes sexually aroused. to explore the reasons why people have sex. It encounter tends to start from a ‘intimacy’ desire Assessing someone with MS- Understanding each phase helps partners better concluded that there were four main reasons: rather than a ‘sexual’ desire (which is more likely 6 related sexual difficulties understand one another’s bodies and sexual • physical to influence men). They often begin to feel sexually responses, enhancing their sexual experience. But • goal attainment aroused once sexual contact has begun. Supporting the partner 7 there are still many myths and misconceptions • emotional “Basson’s work has a major impact on how clinicians about sex. The HCP needs to educate the patient • insecurity. Medications that can treat women in terms of reassuring women, 8 affect sex and ensure he or she has an accurate and sound There were significant differences between genders educating women and intervening to help them deal knowledge of sexual function. that are essential to note as they help us begin to with their sexual difficulties,” says Sandra Leiblum, Practical strategies to 9 suggest to the patient Kaplan (1979) added to Masters and Johnson’s work understand significant differences between the Director of the Center for Sexual and Relational with three phases of desire, arousal and orgasm. male and the female sexual response. Men were Health at UMDNJ-Robert Wood Johnson Medical How to maintain or restore School in Piscataway, NJ, USA. Leiblum. 10 intimacy Desire is particularly important in considering significantly more likely to have sex for physical women’s response. There are differences between reasons: ‘‘the person had a desirable body’’; ‘‘the Within this guide, normal sexual function covers gay, Sexual diversity: genders – men are more likely to have sex for physical person was too ‘‘hot’’ (sexy) to resist’’ and for 11 what is normal? lesbian and heterosexual patients and partners. reasons and women for non-sexual and emotional opportunistic reasons: ‘‘the person was available’’; reasons. (Meston & Buss, 2007) ‘‘the person had too much to drink and I was able 12 Law and ethics to take advantage of them.’’ Men also gave greater Masters and Johnson (1966) created the first model reasons for sexual pleasure: ‘‘I wanted to achieve an MS and contraception for the human sexual response cycle through careful LINKS 13 orgasm’’ and ‘‘It feels good’’ to increase their social observations within a laboratory, of sexual intimacy Sexual arousal NHS choices www.nhs.uk status: ‘‘I wanted to enhance my reputation’’; ‘‘I and sexual intercourse between men and women. Top tips and resources wanted to brag to my friends about my conquests” For more on Basson’s work www.thelancet.com 14 This work was then built upon by Kaplan (1979) who and to gain reference experiences: ‘‘I needed another added the concept of desire before arousal and History of sex models nursingplanet.com 15 References notch on my belt’’; ‘‘I wanted to improve my sexual 9 2 Defining ‘normal’ sexual function MS, SEX, Sexual response cycle SEXUALITY and There are four phases, experienced by men and women. INTIMACY Phase 3: Orgasm Phase 2: Plateau This phase is the climax of the cycle – the MENU General characteristics of this phase extend to shortest phase – generally lasting seconds: the brink of orgasm: Background to this guide Involuntary muscle contractions begin 1 Phase 1: Excitement • Phase 1 changes are intensified Heart rate, breathing and blood pressure This phase can last from minutes to • • Defining ‘normal’ • The vagina continues to swell due to the are at the highest level 2 sexual function several hours: increased blood flow and the vaginal walls Muscles in the feet spasm • Muscle tension increases turn purple • MS-related sexual dysfunction There is a sudden, strong release of sexual 3 Heart rate increases • • • The woman’s clitoris becomes highly tension Why we should ask about • Breathing speeds up sensitive, even painful to touch and 4 sexual health and wellbeing The woman’s vaginal muscles contract Skin may become flushed retracts under the clitoral hood to avoid • • and the uterus goes into rhythmical direct stimulation from the penis 5 How to take a sexual history • Nipples become hard or erect contractions The man’s testicles withdraw up into the • Bloodflow to the genitals increases, • The man’s penis contacts rhythmically at Assessing someone with MS- resulting in swelling (women – clitoris scrotum • 6 related sexual difficulties the base and ejaculation occurs and labia minora; men – erection of the Breathing, heart rate and blood pressure • A sex flush/rash may appear over the Supporting the partner penis) increase further • 7 entire body • Vaginal lubrication begins • Muscle spasms may begin in the feet, face Medications that can and hands 8 affect sex • The woman’s breasts become fuller and the vaginal walls begin to swell Tension in the muscles increases Practical strategies to • 9 suggest to the patient • The man’s testicles swell, the scrotum tightens and he begins to secrete a Phase 4: Resolution How to maintain or restore 10 intimacy lubricating liquid During this phase, the body slowly returns to its normal level of function. Swelling and Sexual diversity: LINKS 11 what is normal? erect parts subside in colour and size. A Sexuality & MS: a guide for women www.mstrust.org.uk general sense of wellbeing, intimacy and Law and ethics Sexuality & MS: a guide for men www.mstrust.org.uk 12 fatigue occurs. Some women may return to Sex, intimacy & relationships www.mssociety.org.uk the orgasm phase for further stimulation and 13 MS and contraception Getting the most out of Psychosexual Therapy, understanding sexual response, Porterbrook Clinic, multiple orgasm. Men need recovery time Sheffield Care Trustshsc.nhs.uk after orgasm, during which they will be unable Top tips and resources to reach orgasm again. The duration of this 14 Female Reproductive System www.innerbody.com phase varies from person to person. Male Reproductive System – Medical Animation 15 References ebsco.smartimagebase.com 10
MS, SEX, Sexual dysfunction The normal male sexual response and the nervous system SEXUALITY and Approximately 22% of 40-year-old men and 50% of 70-year-old men 1. Sexual desire is multifaceted and as such is much more than the INTIMACY experience erectile dysfunction. At least 21.7% of sexually active men biological drive for sexual activity. It has a complex interaction between experience premature ejaculation. the biological (neuroendocrine), psychological (cognitive & affective) MENU Studies show that up to 40% of women experience loss of libido. social (relationship) & cultural (religious upbringing and societal norms) (Kaplan, 1979). Background to this guide Delayed or absent orgasm is also very common, but the actual 1 percentage of women is unknown. 2. Penile erection is principally controlled by a pair of parasympathetic Defining ‘normal’ nerves from S2-S4. It is a haemodynamic event regulated by smooth 2 sexual function It is widely accepted that erectile dysfunction is a sentinel marker and predictor of coronary heart disease and metabolic syndrome, especially muscle relaxation. It occurs following a series of integrated vascular processes, resulting in the accumulation of blood under pressure and 3 MS-related sexual dysfunction in aging men (O’Kane and Jackson 2001). Erectile dysfunction and heart disease have common and shared risk factors: diabetes mellitus, end – organ rigidity. This vasocongestive response is mediated via the Why we should ask about hypertension, dyslipidaemia and smoking cigarettes. autonomic nervous system. A number of neurotransmitters are also 4 sexual health and wellbeing involved in the erectile response; the most important appears to be
How to take a sexual history nitric oxide induced cyclic GMP (cGMP) which causes smooth muscle 5 relaxation in the penile copora cavernosa. Detumescence occurs when cGMP is broken down by the enzyme phosphodieterase (PDE) type 5. Assessing someone with MS- The normal female sexual response and the nervous system 6 related sexual difficulties This is the enzyme which the majority of the current oral treatments for Physiologically, the sexual response erectile dysfunction aim to target and inhibit. Supporting the partner 7 in women is similar to men. The vasocongestive response results in an 3. Ejaculation has two phases – emission and expulsion. The emission phase is governed by the sympathetic nervous system. The ejaculatory 8 Medications that can increase in pelvic and vaginal blood flow affect sex as well as transudative vaginal lubrication phase is controlled by the sympathetic nerves from T11-L2. Practical strategies to together with clitoral and labial 4. Orgasm is controlled by the autonomic nervous system and involves 9 suggest to the patient engorgement. The production of gential smooth muscle contractions of the accessory sexual organs, contraction How to maintain or restore lubricating fluid is not only necessary to 10 of the urethral bulb and the perineum, rhythmic contractions of the intimacy facilitate penile-vaginal penetration, but pelvic floor and ejaculation of semen. also appears to be important to how a Sexual diversity: is the result of sympathetic discharge during 11 what is normal? woman perceives her own level of arousal; 5. Detumesence ejaculation again at T11-L2 and the cessation of neurotransmitters. so that when a poor lubrication response Law and ethics These levels are important to consider when assessing men with MS 12 occurs she may not feel sexually aroused. who have developed spinal lesions This has clear implications for women MS and contraception 13 with MS who have a decreased or absent vaginal response. LINKS Top tips and resources 14 For further explanation of male and female genital organs www.innerbody.com, ebsco.smartimagebase.com References 15 Click here for references Causes of orgasm problems in women www.nhs.uk 11 MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function 3 MS-related sexual dysfunction “People with MS often struggle with altered Why we should ask about 4 sexual health and wellbeing perception of themselves, with reduced self-esteem How to take a sexual history 5 and self-worth, worried whether their partner will Assessing someone with MS- 6 related sexual difficulties still find them attractive.” Supporting the partner 7
Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References MS, SEX, SEXUALITY and 3 MS-related sexual dysfunction INTIMACY Up to two thirds of men and women with MS have difficulties with sex. It is estimated that 45-70% of women and 50-73% of men with MS MENU experience sexual difficulties (Demirkiran et al, 2006). Compared to the Background to this guide general population, this is a high incidence of sexual dysfunction. 1 Foley and Werner (2000) divide sexual dysfunction in MS into three Defining ‘normal’ categories. It is estimated that 2 sexual function
3 MS-related sexual dysfunction Why do people with MS experience sexual difficulties?
Why we should ask about Primary 4 sexual health and wellbeing As a direct result of MS: plaques in the brain stem, lumbar sacral spinal cord; the amygdala nucleus of the hypothalamus, frontal and temporal How to take a sexual history 5 lobes can affect sexual response and intimate feelings.
Assessing someone with MS- 6 50–73% of men related sexual difficulties Secondary with MS experience Supporting the partner Non-sexual MS symptoms affect sexual response or sexual activity. 7 Women also experience ageing/menopause, which can induce certain sexual difficulties Medications that can vaginal dryness and lowered libido. 8 affect sex
Practical strategies to Tertiary 9 suggest to the patient These are caused by the cultural, psychological, emotional and social How to maintain or restore 45–70% of women 10 aspects of living with MS (Foley and Werner, 2000). intimacy with MS experience Sexual diversity: 11 what is normal? sexual difficulties
12 Law and ethics LINKS Sexual Problems www.nationalmssociety.org 13 MS and contraception Sexual problems affecting womenwww.mssociety.org.uk A guide for women www.mstrust.org.uk 14 Top tips and resources MS International Foundation 2005. Intimacy and Sexuality. MS In Focus. Issue 6 www.msif.org 15 References 13 3 MS-related sexual dysfunction MS, SEX, SEXUALITY and INTIMACY Primary sexual dysfunction Stems from changes to the nervous system that impair sexual response MENU and/or sexual feelings. Background to this guide 1 Altered/impaired genital sensation Males with MS can experience This is common in MS. Many lose sensation in the genitals, which Defining ‘normal’ Erectile dysfunction (19.4-75%) significantly affects libido and possibility of orgasm. Alternatively, patients 2 sexual function Reduced libido (11-39.5%) may experience heightened sensitivity, experiencing uncomfortable genital 3 MS-related sexual dysfunction disturbance, including burning, pain and tingling. This is less common and Decreased genital sensation (35.9%) is probably due to lesions within the spinal cord. Why we should ask about Failure to ejaculate (13.2-29.6%) 4 sexual health and wellbeing Orgasmic dysfunction Too long to ejaculate (9.7-23.2%) Orgasm depends on intact central nervous system pathways in the brain How to take a sexual history 5 Difficulty masturbating (23.2%) and pathways in the sacral, thoracic and cervical parts of the spinal cord. If these pathways are disrupted by plaques, sensation and orgasm can be Assessing someone with MS- 6 related sexual difficulties altered or absent.
Supporting the partner Lowered libido 7 Females with MS can experience Slow arousal time, reduced libido or desire and altered orgasmic response Reduced libido (31.4-61%) are common. Libido can also be affected by lesions within the brain, 8 Medications that can affect sex Impaired vaginal sensation (19.8-61%) particularly in the temporal lobe.
9 Practical strategies to Difficulty with orgasm (24.3-54%) These symptoms may be caused by MS, but it is also essential to consider suggest to the patient the side effects of certain drug therapies or psychological problems. Decreased vaginal lubrication (19.4-46%) How to maintain or restore 10 intimacy Difficulty masturbating (15.6%) Sexual diversity: Painful intercourse (17.9%) 11 what is normal?
12 Law and ethics
MS and contraception 13 LINKS Simon Webster, 2011 MS Trust. Sex and MS: 14 Top tips and resources a guide for men www.mstrust.org.uk Sexual problems affecting men with MS www.mssociety.org.uk 15 References 14 3 MS-related sexual dysfunction MS, SEX, SEXUALITY and INTIMACY Secondary sexual dysfunction Non-sexual MS symptoms that affect the sexual response MENU or someone’s ability to be sexually active. Background to this guide 1 Someone with MS may struggle to come to Mood alteration terms with his or her condition. They may fear Defining ‘normal’ Fatigue the future, or develop low self-esteem, both 2 sexual function Continence of which may affect relationships. Partners, 3 MS-related sexual dysfunction too, have to come to terms with the diagnosis Constipation and its consequences. Stress, depression and 4 Why we should ask about Pain anxiety all damage relationships by closing sexual health and wellbeing down communication. These are commonly Cognition changes How to take a sexual history experienced by people with MS. When 5 Muscle weakness someone is depressed, it is natural to withdraw Assessing someone with MS- from others. But open and honest discussion is 6 Tremor related sexual difficulties vital at this time. Visual impairment Supporting the partner 7 Someone with MS can shun physical contact – too tired for sex, particularly in the evenings. So Medications that can the partner feels unattractive and even more Tertiary sexual dysfunction 8 affect sex strain is placed on the relationship. This can Caused by the cultural, psychological, Practical strategies to reduce sexual desire, but often couples do not emotional and social aspects of living with MS. 9 suggest to the patient talk about it. Low self-esteem How to maintain or restore Some medication can also affect the sexual 10 intimacy Poor self-confidence and self-worth response (more on this in Section 8). Sexual diversity: Apprehension about body image 11 what is normal? Difficulties finding a partner Law and ethics 12 Depressive symptoms LINKS MS and contraception Anxiety 13 Talking about sexual dysfunction and MS www.nationalmssociety.org Problems with communication and Top tips and resources 14 Sex and relationships www.mssociety.org.uk cognition Fatigue Management booklet www.mstrust.org.uk 15 References 15 MS, SEX, Body image “People with MS often SEXUALITY and Anyone with MS may experience doubts about struggle with altered INTIMACY body image, even if their disability is mild. perception of themselves, They might question their attractiveness and MENU feel less confident, leading to worries about with reduced self-esteem and physical deficiencies, which in turn cause sexual Background to this guide self-worth, worried whether 1 problems (Pfaffenberger et al, 2011). their partner will still find Body image has been described as the mental 2 Defining ‘normal’ them attractive.” sexual function picture of ourselves (Schilder, 1935). It is MS-related sexual dysfunction developed during childhood and refined during 3 adult life. Body image falls into three key areas:
Why we should ask about the body ideal, the body we would like; the 4 sexual health and wellbeing body presentation, which we show others; and body reality, which is the body as it really is. We How to take a sexual history 5 present ourselves through clothes, cosmetics or ‘camouflage’, in order to achieve the desired Assessing someone with MS- 6 related sexual difficulties appearance.
Supporting the partner Body image can be affected by the level of 7 support a person receives, or by how well they Medications that can adapt to the challenges of an unpredictable 8 affect sex disease and opinions of others (Ward-Abel, 2007).
Practical strategies to The impact of altered body image on self-worth 9 suggest to the patient is like grief, causing depression and isolation (Price, 1990). People with MS often struggle with How to maintain or restore 10 intimacy reduced self-esteem and self-worth, worrying whether their partner still finds them attractive. Sexual diversity: 11 what is normal? This can be exacerbated if the partner is a carer as well as a lover (McCabe, 2002). Law and ethics 12 Within society, the favoured body image is physically attractive, young and healthy. Liddiard MS and contraception 13 (2011) proposes ‘ableism’, a set of beliefs and structures in which able-bodied people are Top tips and resources 14 considered the ‘norm’ and disability diminishes a person’s value in society. Liddiard’s small 15 References 16 3 MS-related sexual dysfunction MS, SEX, SEXUALITY and INTIMACY qualitative study (2011) found male and female The attitude of others can be significant and disabled people felt disempowered by society’s some people with MS find it challenging to begin MENU sexual ‘norms’. Poor body image had a direct new relationships. Ward-Abel and Hall (2012) Background to this guide association with feelings of sexual inadequacy. describe how people with MS are embarrassed 1 “Body image has been MS can cause apparent physical disability, such by how the disease has changed them. They lose confidence and withdraw from society. A Defining ‘normal’ described as the mental as ataxic gait, but it can also cause cognitive 2 sexual function picture of ourselves.” problems or fatigue, which determine self- satisfactory body image often comes from other image (Ward-Abel & Hall, 2012). MS can cause people’s approval (Price, 2000; Gagliardi, 2003). 3 MS-related sexual dysfunction bladder and bowel issues sometimes resulting Pain, exhaustion, loss of physical control, such as sensory, motor or neurological ability, all Why we should ask about in incontinence. Many become embarrassed and 4 sexual health and wellbeing feel ‘childlike’ because of this lack of control. influence someone’s idea of how they look. A diminished sense of wellbeing damages body How to take a sexual history It negatively affects the way many feel about 5 themselves and how they look; some have to image even further (DeFrank et al, 2007). change the way they dress to accommodate Assessing someone with MS- 6 related sexual difficulties their difficulties. Many are too embarrassed to seek help even though there are strategies Supporting the partner 7 available that can help. The fear of urinary leakage whilst having intercourse is enough for Medications that can 8 affect sex some to abstain from sexual encounters. The emotional distress someone experiences 9 Practical strategies to suggest to the patient when they are diagnosed and living with MS can How to maintain or restore feel like a crisis. This is exhausting for people 10 intimacy who have to deal with many different challenges
Sexual diversity: at the same time, affecting how they feel about 11 what is normal? themselves (Mathews, 2009). Rutter (2000) suggests living with MS can alter an individual’s Law and ethics 12 sense of identity. Click here for references If someone’s body image is damaged, it can 13 MS and contraception lead to grieving for their former healthy self, as LINKS described by Kübler-Ross (1969). Sexuality in Later Life www.nia.nih.gov 14 Top tips and resources Living with Multiple Sclerosis-Body Image You Tube 15 References 17 MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function “Sexual expression is something people can take 3 MS-related sexual dysfunction for granted, and only appreciate its impact on Why we should ask about 4 sexual health and wellbeing quality of life when it has been taken away.” 5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References MS, SEX, SEXUALITY and 4 Why we should ask about sexual health INTIMACY and wellbeing “Some HCPs believe MENU HCPs often feel inadequate, ill equipped and that sexuality and sexual Background to this guide uncomfortable asking questions about sex. 1 HCPs can be biased in thinking people are dysfunction does not too disabled or too old to be sexually active. Defining ‘normal’ fall within their role. So 2 sexual function Some HCPs believe that sexuality and sexual dysfunction does not fall within their role. So problems associated with MS-related sexual dysfunction 3 problems associated with a patient’s sexual a patient’s sexual activity activity are very likely to be overlooked by are very likely to be Why we should ask about professionals (RCN, 2000; Rubin, 2005). 4 sexual health and wellbeing overlooked.” How to take a sexual history Added to this, only 10% of patients with a sexual 5 difficulty are confident enough to ask their GP for help. Assessing someone with MS- 6 related sexual difficulties Some HCPs feel they do not have time to ask Supporting the partner about sexuality and sexual dysfunction. They 7 think the patient would rather concentrate on the physical aspects of their disease. Some 8 Medications that can affect sex argue they wouldn’t want to be asked about Practical strategies to sexual difficulties if they were a patient. However, 9 suggest to the patient sexual dysfunction is one of the most distressing
How to maintain or restore aspects of MS for an individual and his or her 10 intimacy partner (Zorzon et al, 1999). Koch et al (2002) establish that women with MS are interested Sexual diversity: 11 what is normal? in their sexuality regardless of their disability and regard it as a normal part of everyday life. Law and ethics 12 Studies consistently show people want to be asked about this aspect of their life. 13 MS and contraception
14 Top tips and resources
15 References 19 4 Why we should ask about sexual health and wellbeing MS, SEX, SEXUALITY and INTIMACY Marital breakdown Who’ll go first? Sexual dysfunction must be addressed early. Research demonstrates patients want nurses MENU A study by McCabe (1996) showed one third to discuss sexuality. Most find it difficult to of couples experienced marital breakdown approach HCPs and hope the HCP will broach Background to this guide 1 because of added pressures on their relationship. the subject first. Individuals who are single have concerns about Holistic care is fundamental to nursing and Defining ‘normal’ meeting someone new. 2 sexual function the Royal College of Nursing (RCN, 2007) has A legitimate aspect of care promoted the ‘equalities champion’ role to 3 MS-related sexual dysfunction Sexuality remains a taboo subject in medical and help address inequalities. MS nurses can nursing professions. But the close relationship help overcome socially constructed barriers, 4 Why we should ask about sexual health and wellbeing MS nurses have with their patients means they stigmatisation and oppression by educating other HCPs in the importance of addressing How to take a sexual history are ideally placed to help explore sexuality 5 and sexual wellbeing. The RCN (2000) aims sexuality and MS.
Assessing someone with MS- to legitimise sexuality as a core aspect of Only 10% of patients with a sexual difficulty 6 related sexual difficulties nursing care, enabling nurses to recognise that are confident enough to ask their GP for help sexuality and sexual health is an appropriate and many would prefer to talk to a nurse. On Supporting the partner 7 and justifiable area of nursing. Furthermore, The average, men will take a minimum of two years World Association for Sexual Health (WAS, 2014) to discuss their sexual dysfunction with a health Medications that can 8 affect sex “Sexuality needs to be advocates all individuals have the right to sexual professional (Evans, 2010). The awareness of healthcare and information and highlights the sexual function on quality of life is now emerging Practical strategies to at the core of nurse 9 suggest to the patient education if nurses are need to raise awareness of disabled people’s as an indicator of good patient management rights to sexual healthcare. (Bronner et al, 2010). How to maintain or restore to be truly holistic in 10 intimacy It is also essential that as HCPs, we understand their care. The neglect Addressing sexuality with patients is challenging, Sexual diversity: as traditional teaching and education has not our own views on sexuality and sexual function. 11 what is normal? of sexuality and intimacy focused on the importance of sexuality and These attitudes influence whether we assess the intimacy. patient and the management strategies that we 12 Law and ethics can be devastating.” Sexuality needs to be at the core of nurse discuss. education if nurses are to be truly holistic in their A nurse is ideally placed to act as an advocate 13 MS and contraception care. The neglect of sexuality and intimacy can for patients by incorporating sexuality in
Top tips and resources be devastating. HCPs can have a positive impact assessments and championing patients’ rights. 14 on patients by addressing and understanding
References the problems because this means they will be 15 managed and treated. 20 4 Why we should ask about sexual health and wellbeing MS, SEX, SEXUALITY and INTIMACY “Young people with MS MS and young people Young people diagnosed with MS may not have MS is most likely to be first diagnosed in young sexual knowledge or experience, they may find will probably want to casual exchange about sexual matters with their MENU people under the age of 30, when they are at develop their knowledge their sexual peak. HCP difficult (McCabe et al, 1996). Their family’s Background to this guide presence at appointments may inhibit open 1 In a worldwide survey of 4,600 people by the communication. Young people with MS will but may be anxious about journal MS in focus in 2013, 40% (1,860) were Defining ‘normal’ probably want to develop their knowledge but 2 sexual function diagnosed under the age of 30 and more asking such questions may be anxious about asking such questions specifically, 37% between the ages of 21 and 29. 3 MS-related sexual dysfunction or vague when asked about sex, sexuality and or vague when asked The implications of these findings for HCPs are intimacy. Despite a much more liberal attitude to Why we should ask about clear – nearly half of all new patients are likely sex, some young people may not want to discuss 4 about sex, sexuality and sexual health and wellbeing to be sexually active, whether they are in stable their intimate lives with family. relationships or single. 5 How to take a sexual history intimacy.” HCPs need to be particularly sensitive to young Even mild symptoms can affect a young person’s people’s situations and let them know that Assessing someone with MS- body image and self-esteem – generating sexuality can be discussed when the young 6 related sexual difficulties anxieties about their sexuality and fears about person feels ready. The HCP carries an important Supporting the partner whether this chronic illness will lead to disability. 7 responsibility to discuss sexual activity with young people and endorse their sexual needs. Medications that can 8 affect sex An HCP can encourage them to express fears and difficulties, refer them to specialists and sources Practical strategies to 9 suggest to the patient of information.
How to maintain or restore Among the key issues young people may 10 intimacy need to discuss are when they disclose their diagnosis, how they discuss the illness in existing Sexual diversity: 11 what is normal? relationships, how they put MS in context so it does not define who they are. Some may want Law and ethics 12 advice on online dating or social networking sites run by MS organisations. 13 MS and contraception A young person may also be concerned about pregnancy, fertility and whether they will be able Top tips and resources 14 to look after a child in future.
15 References 21 4 Why we should ask about sexual health and wellbeing MS, SEX, SEXUALITY and INTIMACY Sexual response and ageing There is a commonly held belief that older people, particularly women, MENU are not sexually attractive, that older people do not have sex and it is less important as they age. But we now live longer and it is becoming Background to this guide 1 increasingly difficult to establish what ‘older’ actually means. What age range does this term represent? Defining ‘normal’ 2 sexual function A survey by the American Association of Retired Persons (1999) asked
MS-related sexual dysfunction ‘does sex become less important to people as they age?’ In response, 39% 3 of men and 37% of women agreed. But when the question was, ‘is sex only for younger people?’ only 2% of men and 5% of women agreed. 4 Why we should ask about sexual health and wellbeing Ageist beliefs on sexual behaviour are common amongst HCPs and this prevents them asking about sexual difficulties. It is essential that HCPs 5 How to take a sexual history actively enquire about sexual dysfunction in the older MS patient and are Assessing someone with MS- conscious of stereotypical attitudes. Garrett (2014) recommends gentle 6 related sexual difficulties and confident open-ended questioning. The HCP should understand the
Supporting the partner knowledge and beliefs of an older person and be aware they may use 7 different language to express sexual difficulties.
Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy “Ageist beliefs on
Sexual diversity: sexual behaviour are 11 what is normal? common amongst 12 Law and ethics HCPs.”
13 MS and contraception
14 Top tips and resources
References 15 Click here for references 22 MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties “Sexuality is what makes us who and what we are. Supporting the partner 7 It is essential, however, that sexuality is not just Medications that can 8 affect sex about the sexual act or sexual activity; it is so Practical strategies to 9 suggest to the patient much more than this, whether in health or illness.” How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References MS, SEX, SEXUALITY and 5 How to take a sexual history INTIMACY Taking a sexual history can worry HCPs. They Confidentiality Safe environment may be embarrassed about asking intimate It is essential the patient feels assured that any Ensure you have enough time and the right MENU questions or believe the patient will be information they disclose is in strict confidence venue. Background to this guide uncomfortable. They can feel they do not know 1 and not released without permission. If the the patient well enough, or don’t have time to In a welcoming, comfortable and confidential patient is not confident about these safeguards, environment you are more likely to have an Defining ‘normal’ discuss this complex issue. They fear the patient they will be reluctant to tell their complete 2 sexual function may ask them something they know little about. effective two-way conversation where the patient story, which will make planning and treatment feels they can discuss sensitive issues. MS-related sexual dysfunction HCPs are more likely to tackle sexual health ineffective. 3 Put a sign on the door so you are not disturbed and wellbeing if the patient instigates the All National Health Service (NHS) employees Why we should ask about conversation. But research shows patients are during the consultation. 4 sexual health and wellbeing are bound by the Caldicott Principles for embarrassed too, that they lack the language confidentiality (1997). They are also bound by Explain to the patient that discussing sexuality is How to take a sexual history or confidence to discuss their sexual difficulties part of a professional consultation and important 5 their health professional council – e.g. Nursing and are waiting for the HCP to initiate the & Midwifery Council (2008), which stresses the in their overall management. Be relaxed, friendly Assessing someone with MS- conversation. importance of confidentiality. General health and explain that the questions you ask are 6 related sexual difficulties If we, as HCPs, worry about approaching the confidentiality in the UK is a common law duty. designed to help. Supporting the partner 7 subject, is it fair to expect the patient to? It is essential to identify certain situations when Students should be present only with the confidentiality cannot be maintained, such as patient’s consent. Medications that can ‘when it is in the patient’s or public’s interest’. 8 affect sex Unfortunately, this is vague but will include child Practical strategies to protection, or cases where another individual is 9 suggest to the patient “In a welcoming, placed at risk of abuse. How to maintain or restore 10 intimacy comfortable and Remind yourself of your professional code of conduct on sexual consultations. Sexual diversity: confidential environment 11 what is normal? you are more likely to 12 Law and ethics have an effective two- 13 MS and contraception way conversation where the patient feels they can LINKS 14 Top tips and resources Regulation in practice www.nmc-uk.org discuss sensitive issues.” UK national guidelines www.bashh.org 15 References 24 5 How to take a sexual history MS, SEX, SEXUALITY and Resources Beginning the dialogue Techniques for identifying patients’ INTIMACY Explore the specialist sexual services available Most patients prefer to see the MS nurse first on problems locally to refer on if necessary − you will need to their own. Patients often have difficulty with this MENU have mapped these out before you see a patient Greet the patient warmly. conversation. Pick up clues and clarify them. (see Section 14 for examples of the more general Background to this guide Try and find out precisely what the patient is 1 resources). Ensure they are as relaxed as possible − look for physical signs of nervousness and talking about. E.g. ‘I think I am impotent’ can Start a resource folder on your computer or on Defining ‘normal’ embarrassment, such as a flushed neck, nervous often mean ‘I have premature ejaculation’. 2 sexual function your desk. Gather books and leaflets that you hand movements or lack of eye contact. Asking open questions such as ‘tell me what could give out to the patient at the appointment MS-related sexual dysfunction problems you are having’ allows patients 3 and take these with you to clinic. Start with a social history to find out about their family, friends, work, to give useful background to explain in their own words how they are Why we should ask about Collect website addresses. information and help to put medical problems experiencing the difficulty and allows you to 4 sexual health and wellbeing Consider whether you wish to use a formal into perspective. record: How to take a sexual history sexual assessment tool (see Section 6). 5 Obtain a baseline history • The severity of symptoms and their duration Assessing someone with MS- Do not assume your patient is heterosexual. This The relationship, its duration, the age and 6 • related sexual difficulties can alienate a lesbian, gay or bisexual patient gender of a partner, details of any possible cultural or religious differences Supporting the partner and result in misinterpretation of symptoms and 7 misdiagnosis. You should cover: • Number and gender of current sexual partners Medications that can Sexual problems prior to MS If multiple current partners, is the problem 8 affect sex • • Genital surgery restricted to one partner? Practical strategies to • 9 suggest to the patient For women, their obstetric, gynaecological • Previous sexual partners and any problems • experienced with them How to maintain or restore and menstrual history 10 intimacy • Concomitant medical conditions such • Does the partner have a sexual difficulty? Sexual diversity: as diabetes, cardiovascular disease, cancer, 11 Type of intercourse – vaginal, oral or anal what is normal? depression • History of sexual abuse and assault Law and ethics • 12 Drugs: prescribed and recreational • Forms of contraception Work and social stresses • MS and contraception • 13 • Previous sexually transmitted infections and • Whether children are still at home treatments 14 Top tips and resources • Evaluate the person’s sexual knowledge – do they have any misconceptions or 15 References misunderstandings? 25 5 How to take a sexual history MS, SEX, SEXUALITY and INTIMACY Taking the dialogue further The ‘Sexual Respect Toolkit’ suggests opening • Is the patient willing and ready to change their thoughts, and behaviour? Is the partner? MENU lines to begin discussing the topic of sex: www.sexualrespect.com • Come up with an action plan and be aware Background to this guide that there may be a counselling element to this 1 Establish how much of the consultation to • discussion. record in notes, letters, etc. 2 Defining ‘normal’ sexual function • Avoid medical terms, as the patient may not Agreeing an action plan be sure what you mean. An action plan should be discussed and agreed 3 MS-related sexual dysfunction • Do not be judgemental as this creates barriers. by the patient. For example: An embarrassed and anxious adolescent can If spasms make sex difficult due to tight 4 Why we should ask about • sexual health and wellbeing appear confrontational and an older or disabled adductors, then the patient could try alternative person can feel ashamed having to ask for positions. 5 How to take a sexual history advice. • If fatigue is an issue, suggest trying an Assessing someone with MS- Respect patients’ silence as during that time alternative time of day. 6 • related sexual difficulties they may be formulating an answer. • Agree a review date. Supporting the partner Postural echo: this technique will tell you 7 • If, by the end of the consultation, you feel when patients are fully at ease. If they are, they the patient requires specialist management, Medications that can will sit in an exact mirror image of you. It can “A good history, carefully 8 refer on. affect sex also be used to make someone feel easier, if you taken, can save a lot of Practical strategies to adopt their position in reverse. Conclusion 9 suggest to the patient repetitive questioning and • Repeating a patient’s last few words or A good history, carefully taken, can save How to maintain or restore sentences is a valuable technique to persuade a lot of repetitive questioning and missed missed diagnoses, while 10 intimacy the patient to expand what he or she is trying to diagnoses, while enabling the patient to be enabling the patient to be Sexual diversity: say; it can be a very powerful way of extracting more comfortable about discussing a potentially 11 more comfortable about what is normal? information. embarrassing issue. Law and ethics Clarify the issues – ask questions and pick up discussing a potentially 12 • clues. embarrassing issue.” 13 MS and contraception • Provide sex education as needed. • Assess if sexual problems are primary, 14 Top tips and resources secondary or tertiary (see Section 3). • Establish the patient’s goals. 15 References 26 5 How to take a sexual history MS, SEX, General medical and neurological factors SEXUALITY and that impact on sexual functioning INTIMACY
Physical MENU Spinal cord injuries Background to this guide • 1 Psychosocial • Conditions that affect the ability to participate in ‘normal’ sexual Depression activity, such as the spasticity caused by cerebral palsy 2 Defining ‘normal’ • sexual function • Work related stress • An enlarged prostate gland MS-related sexual dysfunction Financial difficulties Diabetes 3 • • • Lack of a partner • Neurological conditions such as Parkinson’s disease or MS Why we should ask about Feelings of guilt Fatigue 4 sexual health and wellbeing • • Altered body image and lowered self esteem • Pain and sensory problems How to take a sexual history • 5 Relationship problems, tension and incompatibility with partner • Some drugs such as alcohol, nicotine, narcotics, stimulants, • antihypertensives (click here for a more comprehensive list) Libido Assessing someone with MS- • Endocrine disorders of the thyroid, pituitary, or adrenal glands 6 related sexual difficulties Lack of intimacy • • Heart and vascular disease Supporting the partner Performance anxiety • 7 • Kidney or liver failure Partner’s health problems • • Disorders of the genitalia and urinary system, such as Medications that can Lack of sexual knowledge – some may not understand how the • 8 affect sex • endometriosis, cystitis, vaginal dryness or vaginitis sexual organs respond or don’t use appropriate arousal techniques Surgical removal of the uterus or of a breast may contribute Practical strategies to Previous sexual trauma or abuse • 9 suggest to the patient • psychologically to sexual dysfunction if a woman feels her self- Restrictive childhood and up-bringing. How to maintain or restore • image has been damaged 10 intimacy • Hormonal deficiencies (low testosterone, oestrogen, or androgens) Sexual diversity: Ageing; in males this is associated with declining testosterone 11 • what is normal? levels. In females, with lowering oestrogen.
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 27 5 How to take a sexual history MS, SEX, To summarise – how to take a sexual history SEXUALITY and INTIMACY
MENU Background to this guide 1 If yes – set up an action plan, provide written information and Defining ‘normal’ then review. 2 sexual function Approach the subject sensitively 3 MS-related sexual dysfunction ➞ 4 Why we should ask about sexual health and wellbeing Identify the problem: How to take a sexual history is it something that you 5 ➞ can deal with? Assessing someone with MS- 6 related sexual difficulties ➞ Ensure the patient has the Supporting the partner 7 relevant information - credible websites and an appropriate Medications that can professional to support them. 8 affect sex ➞ Practical strategies to If it is a problem that you are not 9 suggest to the patient able to manage yourself, such How to maintain or restore as erectile dysfunction, refer the ➞ 10 intimacy patient to an appropriate person Sexual diversity: – e.g. GP for Viagra, or a sexual 11 what is normal? therapist. Always be honest about FURTHER READING ON TAKING A SEXUAL HISTORY what you can provide and what 12 Law and ethics Tomlinson JM (2005). ABC of Sexual Health, 2nd Ed. Oxford: you know. Wiley-Blackwell. (1997). The Caldicott Report. MS and contraception The Caldicott Committee 13 Department of Health. The General Nursing and Midwifery Council (2008). The 14 Top tips and resources Code – Standards of Conduct, Performance and Ethics for Nurses and Midwives. (Articles 5, 6 & 7 relating to References confidentiality). 15 Click here for references 28 MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties “Sexual drive is identified as a basic human need Supporting the partner 7 at the lowest physiological level and as such must Medications that can 8 affect sex be satisfied before higher needs can emerge.” Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References
MS, SEX, SEXUALITY and 6 Assessing someone with MS-related INTIMACY sexual difficulties MENU The approach a nurse takes when taking a sexual There are a number of specific sexual • Recognition model Background to this guide history also applies when assessing a patient’s assessments which can be helpful. They are P-LI-SS-IT and Ex-P-LI-SS-IT 1 sexual difficulties. listed below. • BETTER Defining ‘normal’ Specific questions provide the patient with Multiple Sclerosis Intimacy and Sexuality • 2 • sexual function permission to discuss their problems (Woods, Questionnaire 19 The level of intervention required may vary, depending on the HCP’s own values, beliefs, MS-related sexual dysfunction 1987): 3 • International Index for Erectile Function knowledge, confidence and comfort levels. It is • In what ways (if any) has your MS affected Female Sexual Function Index. A 19-question, essential that these issues be fully explored, as Why we should ask about the way you see yourself as a husband/wife/ • 4 sexual health and wellbeing six-domain questionnaire that assesses aspects personal attitudes could have significant affect partner/father/mother/friend? of female sexual function: desire, subjective upon the efficacy of interventions. How to take a sexual history 5 • In what ways (if any) has your MS affected arousal, lubrication, orgasm, satisfaction and Equally, HCPs need relevant training, clinical how you see yourself? pain. It covers a broad range of categories supervision and support in providing holistic Assessing someone with MS- relating to female sexual health, although it is 6 related sexual difficulties Many people who have MS find they have care. • difficult to score. A cutoff score (26.55) can be some difficulties with their abilities to be Supporting the partner used to delineate women at high risk for sexual Springer et al (2001) recommends following a 7 sexual. Is this something you experience? If so, dysfunction, making this instrument much more specific care plan in addition to applying the P-LI- Medications that can it is okay to talk about? SS-IT model (Annon, 1976) to assist individuals 8 efficient to interpret. affect sex In what ways would you like things to be who have difficulty discussing sexual issues. • The Arizona Sexual Experiences Scale (ASEX) Practical strategies to different? • 9 suggest to the patient quantifies sex drive, arousal, vaginal lubrication/ White and Heath (2005) suggest two ways of penile erection, ability to reach orgasm, and How to maintain or restore approaching a conversation about sex: 10 intimacy satisfaction from orgasm. Possible total scores 1. Explore with the patient the direct impact of range from five to 30, with the higher scores Sexual diversity: 11 what is normal? illness or its treatments on the expression of indicating more sexual dysfunction. sexuality or intimate relationships. The Female Sexual Distress Score 12 Law and ethics • 2. What is the relationship context, such as who (Derogatis et al, 2008). A 13-question survey. is around for you? Who are you close to? Who is 13 MS and contraception • The UK Neurological Disability Scale. Not important in your life? specifically a sexual assessment but if you want to ask about sexual difficulties as part of ‘routine’ LINKS 14 Top tips and resources questioning, this is ideal. The Arizona Sexual Experience Scale www.saadshakirmd.com 15 References 30 6 Assessing someone with MS-related sexual difficulties MS, SEX, SEXUALITY and INTIMACY Create the right conditions for an The need for specific assessment tools: Following initial assessment and when sexual assessment Lewis and Bor (1994) suggest that including problems are identified, the patient may need MENU a sexual history within the initial assessment a more specific assessment. There are various Provide a non-judgemental atmosphere for Background to this guide • process provides permission and opens up an assessment frameworks (Burgess, 2002; Foley et 1 discussion, to enable open expression of feelings opportunity for discussion. Although individuals al, 2013; Foley et al, 2000; Springer et al, 2001). about perceived changes in sexuality. may not be experiencing problems, drawing Considering the impact of MS on sexuality 2 Defining ‘normal’ sexual function • Ensure privacy to show you respect and up a sexual history acknowledges there may – and the classifications, which encompass acknowledge the sensitivity of the individual’s MS-related sexual dysfunction be sexual problems associated with MS. This primary, secondary and tertiary causes – is a 3 concerns. may dispel embarrassment and encourage useful model for a holistic approach to care Ask permission before moving on to another individuals to discuss issues in the future. If (Foley and Sanders, 1997a; Foley and Sanders, 4 Why we should ask about • sexual health and wellbeing area of assessment. concerns over sexual activity are not addressed 1997b). The Multiple Sclerosis Intimacy and after initial diagnosis and as part of a general Sexuality Questionnaire (MSISQ) is a self- How to take a sexual history Begin with general questions before moving 5 • holistic assessment, it is probable they never reported questionnaire, which provides useful on to specifics. will be. Therefore, sexuality should be included screening to help individuals and HCPs identify Assessing someone with MS- 6 related sexual difficulties • Use neutral language to allow individuals to within assessment processes from diagnosis difficulties. It may also help encourage personal express concerns without fear of being judged. onwards (Springer et al, 2001). responsibility and self-management. Supporting the partner 7 • Normalise and validate the discussion, to Self-reported questionnaires are very reliable in Medications that can provide affirmation and ensure individuals do assessing sexual function and satisfaction. 8 affect sex not feel alone or unusual for expressing sexual concerns. 9 Practical strategies to suggest to the patient • Provide reassurance based on facts, to avoid How to maintain or restore instilling false hopes. 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 31 6 Assessing someone with MS-related sexual difficulties MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1 Recognition Model The Recognition Model (Couldrick, 2010) Key advantages 2 Defining ‘normal’ sexual function expands on the P-LI-SS-IT model for use Recognises the patient as sexual being. with people with disabilities. It takes a team MS-related sexual dysfunction 3 approach, to protect and support the sexual Provides sensitive strategies. health of individuals with disabilities, using Explores concerns. Why we should ask about 4 sexual health and wellbeing all team members’ skills and knowledge Addresses issues that fit within the team’s regardless of role. It encourages permission- expertise and boundaries. How to take a sexual history 5 giving strategies to allow affirmation of the Refers on when necessary and appropriate. individual’s questions and response. Assessing someone with MS- 6 related sexual difficulties It clarifies professional roles, which is useful when working in multidisciplinary teams, Supporting the partner 7 and indicates how people with MS might be encouraged to talk about their concerns, Medications that can LINKS 8 affect sex explore cultural beliefs, attitudes and Recognition model www.mstrust.org.uk awareness. Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 32 6 Assessing someone with MS-related sexual difficulties MS, SEX, P-LI-SS-IT and Ex-PL-SS-IT Models SEXUALITY and INTIMACY
MENU Background to this guide 1 Defining ‘normal’ P 2 SS sexual function Permission LI Specific for the client to discuss Limited Suggestions 3 MS-related sexual dysfunction their sexual difficulties Information for action ITIntensive Therapy and problems share factual or Why we should ask about evidence-based if agreed it’s needed. 4 sexual health and wellbeing knowledge 5 How to take a sexual history
Assessing someone with MS- The P-LI-SS-IT Model was developed by Jack It was developed to help discussion of sexuality It encompasses permission-giving as a core 6 related sexual difficulties Annon (1976) and is an acronym of Permission, and sexual dysfunction in clinical practice. It can element of each stage in the original linear Supporting the partner Limited Information, Specific Suggestions and help evaluate how much intervention indivduals P-LI-SS-IT Model (Taylor and Davis, 2007; Taylor 7 Intensive Therapy. He said: need and offers HCPs a series of practice levels, and Davis, 2006; Davis and Taylor, 2006). Male Medications that can “Many sexual dysfunctions of longstanding based on personal experience, knowledge and HCPs who might have increased concerns about 8 affect sex concern need only understanding and a common comfort in discussing sexuality. appearing non-professional when trespassing Practical strategies to sense approach for their resolution.” The Ex-P-LI-SS-IT Model is an extended version. into a sensitive-taboo area may feel more 9 suggest to the patient comfortable using the Ex-P-LI-SS-IT model. How to maintain or restore The P-LI-SS-IT model is a form of ‘stepped’ 10 intimacy approach to sexual dysfunction. Annon (1976) Sexual diversity: “Many sexual dysfunctions of feels that fewer people need increasing levels 11 what is normal? longstanding concern need only of care. Tan et al (2002) reports that 80−90% of patients need no more than information 12 Law and ethics understanding and a common and brief sexual advice. For an overview of this sense approach for their MS and contraception model, take a look at this: www.youtube.com 13 resolution.” 14 Top tips and resources
15 References 33 6 Assessing someone with MS-related sexual difficulties MS, SEX, SEXUALITY and INTIMACY MENU PPermission Background to this guide 1 Annon (1976) emphasises the importance of listening to the patient “I am going through some general without jumping to conclusions. He feels it is important to normalise questions regarding your MS, some of 2 Defining ‘normal’ behaviours to reduce anxiety, guilt and shame. The only treatment sexual function some people may need is reassurance that they can have sexual them are quite personal, are you happy MS-related sexual dysfunction intercourse or relationships despite (for example) spasticity. But the 3 for me to ask?” patient may need to adapt their position to make this possible. Why we should ask about Example of how to give permission: 4 sexual health and wellbeing Start with: “I am going through some general questions regarding How to take a sexual history 5 your MS, some of them are quite personal, are you happy for me to ask?” Assessing someone with MS- 6 related sexual difficulties Routine questioning: “Now we have discussed your fatigue, I would Limited Information like to ask you questions about how MS has affected you sexually – is LI Supporting the partner 7 Sexual knowledge is often built on myths and incorrect information. that OK with you?” The idea of ‘limited information’ is to replace this with factual Medications that can Generalising/normalising: “After being diagnosed with MS, most or evidence-based knowledge. The information focuses on the 8 affect sex women say they have difficulties resuming intimate relationships. patient’s area of concern. For many, the information they receive Practical strategies to Has this been an issue for you?” then “How does this make you feel?” provides great relief and no further help is needed. 9 suggest to the patient Using statistics: “Over 70% of men with MS say they have some The kind of information that might be useful includes the side effects How to maintain or restore of medication, family planning, and education on sex and intimacy. 10 intimacy difficulties with sexual relationships. Is this an issue for you?” “How are things at home?” Sexual diversity: Other open-ended questions: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 34 6 Assessing someone with MS-related sexual difficulties MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1 SS Specific Suggestions Defining ‘normal’ Intensive Therapy 2 sexual function These are direct attempts to help the patient change his or her IT behaviour in order to reach a sexual goal, but these suggestions The MS HCP needs to be self-aware and recognise when issues MS-related sexual dysfunction 3 can only be given after an assessment of the sexual difficulties discussed are either beyond their expertise or beyond the scope the individual is experiencing. of their professional code of practice. In either of these instances, Why we should ask about 4 sexual health and wellbeing This may include strategies to help erectile dysfunction or loss sometimes the patient will need further professional help. of libido, or more specifically, reduced sensation around the How to take a sexual history 5 perineal area affecting climax. In this instance, if sex toys have not been helpful, a psychosexual counsellor could help with Assessing someone with MS- 6 related sexual difficulties more specialised therapy, such as sensate focusing (using touch to learn how to give and receive pleasure rather than sexual Supporting the partner 7 intercourse). Key advantages of P-LI-SS-IT tool Medications that can Enables the professional to ask and discuss the subject in a 8 affect sex sequential structured format. Practical strategies to 9 suggest to the patient Disadvantages Some say it is now out of date and no longer reflects UK culture How to maintain or restore 10 intimacy and the evolving interprofessional relationship between patient and HCP. Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 35 6 Assessing someone with MS-related sexual difficulties MS, SEX, BETTER Model SEXUALITY and INTIMACY Cohen and Hughes’ (2004) BETTER Model to assess sexuality was developed within mental health nursing in Australia. MENU Background to this guide 1
Defining ‘normal’ Timing… Educate… 2 sexual function
3 MS-related sexual dysfunction Bring up… Tell… E Record… TTiming is crucial – Educate the patient/ Why we should ask about discussions should partner about any 4 sexual health and wellbeing Explain… be encouraged as expected or potential BBring up sexuality TTell patients about How to take a sexual history the patient/partner changes in sexuality or R 5 and sexual available resources Record important desires. sexual functioning. aspects of any functioning. EExplain that and help them if Assessing someone with MS- discussions, 6 sexuality is integral the information related sexual difficulties assessments, to quality of life they need isn’t It may be that this Some women find that Supporting the partner Some women interventions and/ 7 and important to immediately isn’t the right time they have problems have questions or outcomes in the discuss. available. for you to talk about with vaginal dryness. Medications that can or concerns patient’s record.
8 this. You may not feel This can make sex affect sex about their sexual ‘‘ ‘like‘ thinking about painful and can reduce Practical strategies to functioning when Some women find I’m not sure of the
9 suggest to the patient ‘‘ or resuming sexual desire for intercourse.
they have MS. answer to that, but The need for vaginal
that living with MS activity yet, but you
I have a colleague Have you considered a lubrication was How to maintain or restore We try to address can change their can always call me 10 intimacy who has a lot of lubricant? Some women discussed with the ‘ interest in and ‘ ‘ these concerns as ‘ to ask any questions patient.
Sexual diversity: ‘arousal‘ during sex. experience in this find the Durex range they arise, so please ‘‘ you or your partner 11 what is normal? area. helpful. There are others feel free to ask me Some strategies to This can have a big may have. that are silicone-based. Law and ethics With your permission, accomplish this were ‘ anything. ‘ 12 impact on their life. I’ll also give you I’ll ask them about discussed. some written Is this something this and get back to 13 MS and contraception information that you you and your you when I see you can read when you partner have talked next week. 14 Top tips and resources about? feel ready.
15 References 36 6 Assessing someone with MS-related sexual difficulties MS, SEX, Multiple Sclerosis Intimacy and SEXUALITY and Sexuality Questionnaire 19 MSISQ: Secondary Sexual INTIMACY Dysfunction five items, including: The UK Neurological Disability Validated in two previous studies (Sanders et 1 Muscle tightness/spasticity al, 2000; Foley et al, 2007), this is a really helpful Scale MENU questionnaire composed of 19 questions that 2 Bladder/urinary problems This is a basic structured questionnaire Background to this guide ask the patient to rate how various symptoms 3 Bowel problems covering symptoms and sexual function. 1 of their MS have interfered with their sexual 4 Tremors in hands or body Key advantages Defining ‘normal’ satisfaction or activity over the last six months. 5 Pain, burning, or discomfort in body 2 sexual function Covers 12 areas considered important by Asking patients to complete this questionnaire neurologists, providing a useful general 3 MS-related sexual dysfunction gives a good idea of the extent of their problems MSISQ: Tertiary Sexual Dysfunction background. (as the response is rated on a scale of 1–5) and five items, including: Captures many aspects of everyday life, Why we should ask about the relative contribution of primary, secondary 4 sexual health and wellbeing 1 Body image/attractiveness concerns including sexuality and sexual function. and tertiary sexual dysfunction. 2 Feeling less feminine/masculine May be useful in opening up further 5 How to take a sexual history MSISQ: Primary Sexual Dysfunction 3 Fear of being rejected sexually because discussion. Assessing someone with MS- five items, including: of MS 6 related sexual difficulties 1 Lack of sexual interest/desire 4 Feeling less confident about sexuality Supporting the partner due to MS 7 2 Decreased genital sensations/genital The Sexual Respect Toolkit numbness 5 Worries about sexually satisfying Online toolkit for GPs and other health Medications that can 3 Takes too long to orgasm/climax partner 8 affect sex and social care professionals to feel more 4 Less intense or pleasurable orgasms/ LINK comfortable initiating discussions about sex. 9 Practical strategies to climaxes suggest to the patient Sexuality in MS: a practical guide for nurses Resources include information handouts, 5 Inadequate vaginal lubrication (women)/ How to maintain or restore www.academia.edu discussions, posters and training film. 10 Difficulty getting/keeping satisfactory intimacy Find a copy of the MSISQ www.med-iq.com erection (men) Sexual diversity: LINK 11 what is normal? The sexual respect toolkit www.sexualrespect.com 12 Law and ethics OTHER USEFUL SEXUALITY ASSESSMENT TOOLS 13 MS and contraception Sexual Health Inventory for men International Index for Erectile Function (Rosen et al, 1997. Urology, 49, 822-830) 14 Top tips and resources Female Sexual Function Index (Rosen et al, 2000. Journal of Sex Marital Ther, 26, 191-208) Click here for references 15 References 37 MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing 5 How to take a sexual history “Questions concerning sexuality should Assessing someone with MS- 6 related sexual difficulties be recognised as a legitimate part of the Supporting the partner 7 patient assessment”(NICE, 2014) Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References MS, SEX, SEXUALITY and 7 Supporting the partner INTIMACY If partners are unaware of the sexual problems Some people may lose interest in sex, due to “Emotional factors such as experienced by a patient, they may feel confused concerns about hurting their partner; they may MENU and misinterpret this as a rejection or failure on be adjusting to a new diagnosis. honesty, trust, closeness, mutual Background to this guide their part. They may feel resentful or hurt. It is respect, communication, 1 But do not assume that MS is the only cause of better to be honest and confront the situation sexual dysfunction. There are other factors, such caring and appreciation were together so that a plan of action can be agreed Defining ‘normal’ as cardiovascular disease, vascular risk factors, 2 reported to be important factors sexual function (MS Trust). diabetes mellitus, hypertension, smoking, It is important to recognise and provide alcoholism, recreational drug use, or medication, in maintaining a positive and 3 MS-related sexual dysfunction support for partners. This may include advice as well as psychological and emotional issues. satisfying sexual relationship.” Why we should ask about on new sexual relationships and the effects 4 sexual health and wellbeing this may have on their existing relationship, as
How to take a sexual history well as addressing changes in an established 5 relationship as a result of someone’s condition.
Assessing someone with MS- Studies such as Kreuter et al (1994) on sexual 6 related sexual difficulties adjustment after spinal cord injuries found: Supporting the partner “emotional factors such as honesty, trust, 7 closeness, mutual respect, communication, Medications that can caring and appreciation were reported to be 8 affect sex important factors in maintaining a positive and Practical strategies to satisfying sexual relationship”. 9 suggest to the patient “It is almost impossible to have good sex without How to maintain or restore good communication” (Kaufman et al, 2003). It 10 intimacy is important to encourage couples to be open, Sexual diversity: as one partner may be confused about what the 11 what is normal? other needs. Encouraging couples to be open Law and ethics about changes in their sex life can help them 12 overcome embarrassment and can increase enjoyment. “Disability is sometimes used as an 13 MS and contraception excuse not to talk about sex, as the non-disabled
Top tips and resources partner may feel they may be hurting the other 14 partner by bringing it up” (Kaufman et al, 2003).
15 References 39 7 Supporting the partner MS, SEX, “It is almost impossible to SEXUALITY and have good sex without good INTIMACY communication.” MENU Background to this guide 1
Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties Reassure couples that it’s OK to ask for help, that there’s no need for them to feel embarrassed or Supporting the partner 7 isolated. It’s important they realise that many Kessler (2009) recognised that “the patient’s people who are not dealing with a medical Medications that can attitude towards secondary sexual orientation 8 affect sex condition experience changes in their sexual and quality of the relationship with the spouse function at some time during their lives, whether Practical strategies to or partner should be addressed and that 9 suggest to the patient because of stress, a change in relationship, a assessment of not only the patient’s but also One way of opening communication may be to new relationship, or age. Research on sexual How to maintain or restore the partner’s needs and expectations is equally health issues is scarce, especially among 10 intimacy ask both partners to complete the MS (MSISQ-19) important and the effect of sexual dysfunction questionnaire to establish whether they identify people with a disease or impairment. But Sexual diversity: on a couple should be considered and is the prevalence of sexual difficulties among 11 what is normal? similar issues or concerns about their sex beneficial to engage the partner as well”. life. Partners should be encouraged to attend the general population is thought to be high, 12 Law and ethics review appointments, or be offered a separate although people are often reticent about seeking appointment. help, even from primary care professionals 13 MS and contraception (Kedde et al, 2012).
14 Top tips and resources
15 References 40 7 Supporting the partner MS, SEX, SEXUALITY and INTIMACY It’s also important to manage a couple’s expectations. For example, it is not the case MENU that everyone should climax. Education and Background to this guide information is vital so couples can realise that 1 relationships change. Physical intimacy, such
Defining ‘normal’ as hugging and stroking, is important in any 2 sexual function relationship, especially when full sexual contact
MS-related sexual dysfunction is not possible. Emotional intimacy is also vital – 3 sharing, spending time together and being there for each other. Point out that communication Why we should ask about 4 sexual health and wellbeing takes place in various forms like using body language, facial expressions, moaning, moving, How to take a sexual history 5 laughing or crying − all these are ways of making our feelings known. Assessing someone with MS- 6 related sexual difficulties Reassure couples that it’s OK to experiment
Supporting the partner with different positions to achieve penetration. 7 Creating a better understanding of the difficulties
Medications that can a partner may be experiencing means that you 8 affect sex can make suggestions that help couples rebuild an active/alternative sex life (MS Trust). Practical strategies to 9 suggest to the patient
How to maintain or restore “Partners should be encouraged 10 intimacy to attend review appointments Sexual diversity: 11 what is normal? or be offered a seperate appointment.” 12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 41 7 Supporting the partner MS, SEX, SEXUALITY and INTIMACY Sextherapist Gila Bronner says partners need Remind couples about the importance of different types of time together (Bronner et al, maintaining a good sense of humour, as sex MENU 2010): is fun. Background to this guide 1 • Couple time – socialising together, dating HCPs cannot profess to have specialist Intimate time – talking, sharing, listening, knowledge in all aspects of patients’ care. “Remind couples Defining ‘normal’ • However, by carrying out holistic assessments 2 sexual function loving, caring, supporting each other about the importance emotionally and physically and seeing people for regular reviews, it gives us of maintaining a good 3 MS-related sexual dysfunction • Sexual time – relaxing, touching as well as the opportunity to build a rapport with couples. non-sexual touching “Every person (or couple) with persisting sexual sense of humour, Why we should ask about dysfunction should be offered the opportunity as sex is fun.” 4 sexual health and wellbeing • Personal time – erotic touching, thinking, sexual excitement, activity and satisfaction to see a specialist (with particular expertise in How to take a sexual history 5 Talk to the patient about how he or she can sexual problems associated with neurological develop this aspect of their life. disease) and offered, as appropriate, advice on Assessing someone with MS- lubricants and the use of sexual aids, and other 6 related sexual difficulties advice to ameliorate their sexual dysfunction.” Supporting the partner Bronner lists a person’s rights to a good quality (NICE, 2003) 7 sex life: Medications that can The right to love and be loved 8 affect sex • • The right to touch and be touched Practical strategies to The right to share intimacy 9 suggest to the patient • The right to be a sexual human being How to maintain or restore • 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 42 7 Supporting the partner MS, SEX, SEXUALITY and INTIMACY Intimacy Discussing sexual techniques with a couple The MS nurse/practitioner who is trying to A trusting relationship between HCP, patient or This identifies common themes which give MENU engage in a discussion about intimacy with a couple is fundamental to an open discussion, individuals confidence that they are not alone. patient or couple needs to be aware that these without judgement . Background to this guide Many people, including yourself, may not be fully 1 issues are extremely sensitive and normally aware of their sexual preferences. It is likely to thought of as private. They demand a great deal Avoid the use of jargon and understand a person’s nicknames for anatomy and sexual be new territory for discussion and can stir up 2 Defining ‘normal’ of careful questioning to seek permission to raise sexual function strong emotions. Having someone to debrief and explore the subject. techniques. MS-related sexual dysfunction with afterwards can be helpful. 3 No longer being able to express love and Completing a questionnaire – i.e. MSISQ-19 – closeness in a physically intimate way can be a may be easier for the patient or couple to do as Why we should ask about homework rather than face-to-face. It can be 4 sexual health and wellbeing source of great regret, sadness and pain. This may lead a person or couple with MS to bravely discussed together at home and will give a score, How to take a sexual history which allows techniques and therapies to be 5 seek solutions or improvements. I feel sensual when… evaluated. However, some couples will be resigned to Assessing someone with MS- A patient can write sexual preferences, dislikes 6 related sexual difficulties the loss. The embarrassment of opening up to themselves, each other and HCPs can be too or curiosity on post-it notes and leave them for Supporting the partner I wish my partner 7 difficult and embarrassing. the partner to read independently. Red for dislike or turn-off; orange for interested; green for ‘yes, would… Medications that can please’. 8 affect sex “No longer being able to In a group, not everyone will be comfortable with Practical strategies to 9 suggest to the patient express love and closeness in open discussion. Statements on flip-chart paper can be posted around a room. For example: I am turned off by… How to maintain or restore a physically intimate way can 10 intimacy be a source of great regret, I feel sensual when... Sexual diversity: I like it when... 11 what is normal? sadness and pain. This may lead a person or couple with I wish my partner would... Law and ethics 12 MS to bravely seek solutions or I am turned off by... 13 MS and contraception improvements.” Give participants post-it notes to write comments on that can be anonymously attached to the flip- chart statement in the coffee break. 14 Top tips and resources
References 15 Click here for references 43 7 Supporting the partner MS, SEX, SEXUALITY and INTIMACY Case study: Lesley Betts I developed MS 32 years ago when I was 20. It And how does that affect me? Physically, it MENU began quite dramatically with the loss of all means full-time wheelchair use, a left arm feeling from the waist down, although strangely and hand that refuse to work properly and the Background to this guide 1 everything worked. I was still able to walk, albeit need to rely totally on a team of people who slowly and was told that it was the relapsing/ endeavour, on a daily basis, to make my life as Defining ‘normal’ straightforward as possible. I don’t like it, but 2 sexual function remitting form of the disease and would come and go, but to go home and live as normal a life that’s the easy part. Mentally and emotionally the 3 MS-related sexual dysfunction as possible. Looking back I realise that in the beast that is secondary progressive MS presents early days I treated having MS in a decidedly me with a far tougher job than I’d ever thought Why we should ask about cavalier fashion, refusing to let it interfere with it would. It is an insidious and frighteningly 4 sexual health and wellbeing anything I wanted to do. I was still the same voracious adversary that constantly attempts 5 How to take a sexual history person until forced, every now and then, to go to to chip away at my confidence and overwhelm ground and regroup as an attack occurred. Every the very essence of me. The fact that I’m now Assessing someone with MS- time it happened I had a hefty dose of steroids incapable of doing things I used to love to do, 6 related sexual difficulties and waited for it to subside, but began to notice such as baking and driving, are bad enough but Supporting the partner that every attack left me just that little bit worse, not the end of the world. It is, instead, the steady 7 pushing me, inexorably, towards the secondary but relentless loss of privacy and dignity that is progressive phase, which is where I am now. the hardest to bear. Not being able to shower or 8 Medications that can affect sex dress myself and having to arrange my need to use the loo around someone else’s schedule is 9 Practical strategies to “Mentally and suggest to the patient emotionally the beast frustrating and, at times, upsetting. My overactive How to maintain or restore and maddeningly sensitive bladder has meant 10 intimacy that is secondary I now have a suprapubic catheter intrathecal Baclofen pump, to help control my violent Sexual diversity: progressive MS presents 11 what is normal? me with a far tougher job muscle spasms. 12 Law and ethics than I’d ever thought it would.” 13 MS and contraception
14 Top tips and resources
15 References 44 7 Supporting the partner MS, SEX, SEXUALITY and INTIMACY So, with all the equipment in my house to help struggle to see the way forward. The limitations “When I ask him if it’s me, plus my wheelchair, catheter and pump, can placed on us both by MS have also made us I be forgiven for sometimes losing sight of the more considerate when it comes to sex and all getting too much, that MENU person I once was? It’s certainly hard at times although it has robbed us of our spontaneity, perhaps he’d like a break Background to this guide 1 to maintain a positive self-image with a tube with a little thought and application most things from having to deal with sticking out of my stomach and a full leg-bag; are achievable. Defining ‘normal’ to still feel that vibrant, sexy and passionate the MS, he says that I can’t 2 sexual function The MS, in a strange way, has brought us closer, woman I like to think I was. When my partner, because it’s made us think outside the box. It take a break from it, so 3 MS-related sexual dysfunction John, is called upon to see bits of me I’ve never makes us talk to each other, to say what we why should he?” seen myself, or perform duties that few men want or don’t want, like or don’t like, whether Why we should ask about would ever be required to do, I worry. I worry 4 sexual health and wellbeing physically or emotionally and to appreciate each every time he lifts me, turns me over in bed, other, what we have together and the things we never has a full night’s sleep or gets me off the 5 How to take a sexual history can do. loo, that his role is changing from being my lover Assessing someone with MS- to that of my carer. However, communication 6 related sexual difficulties is the key. We talk a lot about how MS affects
Supporting the partner him too. So much attention is focused on me 7 because of the restrictions and requirements
Medications that can that go hand in glove with MS that I worry he 8 affect sex will become overwhelmed by it and overlooked because of it. So honesty and communication Practical strategies to 9 suggest to the patient are paramount. John sees MS as something we both have because what affects me, affects How to maintain or restore 10 intimacy him and vice versa. When I ask him if it’s all getting too much, that perhaps he’d like a break Sexual diversity: 11 what is normal? from having to deal with the MS, he says that I can’t take a break from it, so why should he? 12 Law and ethics His consideration and support means so much and it helps tremendously that he still finds 13 MS and contraception me physically attractive and that the things he does for me he does not as my carer, but simply 14 Top tips and resources because he cares, that he loves and accepts me for who I am and helps me hold on to my self- References confidence and determination on days when I 15 45 MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex “Some medicines can affect libido Practical strategies to 9 suggest to the patient and others can affect the ability to How to maintain or restore 10 intimacy become aroused or achieve orgasm. ” Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References MS, SEX, SEXUALITY and 8 Medications that can affect sex INTIMACY Some prescription medications and over- Arousal and erection Ejaculation is a complex reflex process that the-counter products can have an impact Some medicines have a direct impact on the involves the activation of alpha receptors. MENU on sexual functioning. Some medicines can blood vessels in the genitalia - the penis and Medicines that block alpha receptors can Background to this guide affect libido and others can affect the ability to interfere with ejaculation. 1 clitoris. They can affect the transmission of become aroused or achieve orgasm. The risk is nerve messages along the spinal cord. Selective During ejaculation, increased alpha receptor Defining ‘normal’ increased when an individual is taking multiple serotonin re-uptake inhibitors (SSRIs) are well activation closes the bladder neck, facilitating 2 sexual function medications. known for causing sexual difficulties, probably the normal flow of semen out of the penis. MS-related sexual dysfunction 3 HCPs need to discuss the side effects with because they enhance the levels of serotonin, If this mechanism is disrupted, it results in patients. Whilst it is unusual for drugs to be which seem to tighten the brain’s built in retrograde ejaculation, with semen flowing from Why we should ask about the sole cause of a sexual problem, they will controls of arousal and erection. Conversely, 4 the urethra into the bladder. sexual health and wellbeing certainly have an impact. there are reports that SSRIs can lead to excessive sexual urges, so more research is needed into Various chemicals in the brain are also involved 5 How to take a sexual history Patients on long-term medications may not be this area of care. Some anti-hypertensive agents in orgasm and ejaculation and medicines that aware that their sexual problems are a result of affect these chemicals can cause disturbances. Assessing someone with MS- can inhibit erections (penis or clitoris) and 6 their treatment. related sexual difficulties reduce arousal. Vaginal dryness Supporting the partner Libido 7 Orgasm A woman will naturally lubricate her vaginal Lack of libido is more commonly experienced walls with a layer of moisture. When she is by women. Many have no problems achieving A study of nearly 600 men and women treated 8 Medications that can sexually aroused the amount of fluids increases. affect sex orgasm but their desire is low. The male with an SSRI, published in the Journal of Sex and Marital Therapy, found that roughly one in Dryness can be caused by hormonal changes, Practical strategies to sex drive can be influenced by reproductive 9 suggest to the patient hormones, particularly testosterone, which six patients reported new sexual problems. The such as menopause, stress and certain main complaint was delayed or absent orgasms. medications including: anti-histamines, How to maintain or restore is required for sexual arousal. Medicines that 10 intimacy reduce testosterone or block its effects are Many patients also reported declines in desire. cold treatments, SSRIs and various cancer likely to reduce sex drive. Some literature states Overall, men were more likely than women to treatments. Sexual diversity: 11 what is normal? menopause affects libido but many women report sexual problems while on SSRIs. find it increases post-menopause. Medicines Law and ethics Ejaculation 12 that cause drowsiness, lethargy, weight gain The most widely prescribed centrally-acting or confusion also have the potential to reduce agents that affect ejaculation are SSRI 13 MS and contraception libido. antidepressants. LINKS 14 Top tips and resources Sex and medications www.netdoctor.co.uk Factors affecting sex www.inkling.com 15 References 47 8 Medications that can affect sex Adapted from Dr John Dean MS, SEX, ‘Are your medicines disrupting your sex life?’ SEXUALITY and INTIMACY www.netdoctor.co.uk/sexandrelationships Anti-hypertensive KEY MENU Enlarged prostate Background to this guide Main use 1 Anti-hypertensive medications Impotence, High blood pressure (used to treat high blood pressure) ejaculatory Defining ‘normal’ disturbances 2 sexual function Alpha-blockers: Prazosin Effect on Type of medication Doxazosin, Phenoxybenzamine MS-related sexual dysfunction sexual function Impotence, 3 Generic or brand name Anti-hypertensive medications (used to treat high blood pressure) decreased Why we should ask about sex drive, 4 sexual health and wellbeing Clonidine Methyldopa delayed or failure How to take a sexual history of ejaculation 5 Anti-hypertensive medications Assessing someone with MS- Impotence 6 (used to treat high blood pressure) related sexual difficulties Fluid retention Thiazide diuretics: Bendroflumethiazide, Supporting the partner 7 Chloratalidone,Cyclopenthiazide, Indapamide, Angina Metolazone and Xipamide, Guanethidine Medications that can Anti-hypertensive medications 8 Impotence affect sex (used to treat high blood pressure)
9 Practical strategies to Calcium channel blockers: suggest to the patient Potassium-sparing diuretic Impotence, decreased sex drive Nifedipine, Verapamil How to maintain or restore Spironolactone 10 intimacy Anti-hypertensive medications Impotence Sexual diversity: (used to treat high blood pressure) Anti-hypertensive medications 11 Impotence what is normal? ACE inhibitors: Enalapril, Captopril, (used to treat high blood pressure) Lisinopril, Cilazapril, Imidapril, Law and ethics Beta-blockers: Atenolol, Propranolol 12 Hydrochloride, Moexipril Hydrochloride, (including timolol eye drops), Quinapril and Ramipril Hydrochlorothiazide, Metoprolol 13 MS and contraception ! Please check Heart failure Top tips and resources summary of product 14 characteristics for specific drug Glaucoma 15 References information 48 8 Medications that can affect sex MS, SEX, Anti-depressants/ Psychotics/ Convulsants SEXUALITY and ! Please check INTIMACY summary of product Epilepsy characteristics Depression for specific drug MENU information Background to this guide 1 Anticonvulsant Impotence Antidepressants Decreased libido, impotence, delayed orgasm, Carbamazepine, Lorazepam Defining ‘normal’ Monamine oxidase inhibitors 2 sexual function lack of orgasm, (MAOI) antidepressants: Alcohol ejaculatory disturbances MS-related sexual dysfunction (e.g. Moclobemide, Phenelzine, dependence 3 Tranylcypromine, Isocarboxazid, Phenelzine) Alcohol withdrawal Decreased 4 Why we should ask about libido sexual health and wellbeing Selective serotonin Disulfiram reuptake inhibitors (SSRIs) 5 How to take a sexual history antidepressants: (e.g. Fluoxetine, Sertraline) Assessing someone with MS- Tricyclic antidepressants: 6 related sexual difficulties (e.g. Amitryptiline, Imipramine, Supporting the partner Nortriptyline, Clomipramine, 7 Doxepin)
8 Medications that can affect sex Psychotic illness Practical strategies to 9 suggest to the patient Antipsychotics Ejaculatory How to maintain or restore disturbances, 10 intimacy Phenothiazines: decreased libido, KEY Anxiety (e.g. Chlorpromazine, Sexual diversity: Thioridazine, Trifluoperazine, impotence 11 what is normal? and insomnia Main use Fluphenazine, Haloperidol) 12 Law and ethics Impotence, Anxiolytics Decreased Antipsychotics libido ejaculatory MS and contraception Benzodiazepines, Diazepam, Risperidone 13 Effect on disturbances Type of medication Chlordiazepoxide, Oxazepam, sexual function Generic or brand name Meprobamate 14 Top tips and resources Adapted from Dr John Dean References 15 ‘Are your medicines disrupting your sex life?’ www.netdoctor.co.uk/sexandrelationships 49 8 Medications that can affect sex MS, SEX, Gastro Intestinal SEXUALITY and ! Please check INTIMACY summary of product characteristics Peptic ulcers for specific drug MENU information
Background to this guide 1 Acid reflux disease Defining ‘normal’ 2 sexual function Histamine H2-receptor antagonist Decreased libido, MS-related sexual dysfunction impotence 3 Cimetidine, Ranitidine, Nizatidine
Why we should ask about 4 sexual health and wellbeing Proton pump inhibitor Impotence How to take a sexual history 5 Omeprazole
Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7 Nausea Medications that can 8 affect sex and vomiting
Practical strategies to High cholesterol 9 suggest to the patient Anti-emetic Impotence
How to maintain or restore Prochlorperazine Cholesterol-lowering medicines Impotence 10 intimacy Adapted from Dr John Dean Fibrates (e.g. Clofibrate, Gemfibrozil) ‘Are your medicines disrupting your sex life?’ Sexual diversity: Statins (e.g. Simvastatin) 11 what is normal? www.netdoctor.co.uk/sexandrelationships
12 Law and ethics KEY
13 MS and contraception Main use
14 Top tips and resources Effect on Type of medication References sexual function 15 Generic or brand name 50 8 Medications that can affect sex MS, SEX, Oncology/ Pain SEXUALITY and ! Please check INTIMACY summary of product characteristics Prostate cancer Decreased libido, for specific drug MENU impotence, information Background to this guide 1 reduced volume of Prostate cancer medications ejaculation Defining ‘normal’ Cyproterone acetate, Flutamide 2 sexual function
3 MS-related sexual dysfunction Endometriosis Impotence, Enlarged prostate decreased Why we should ask about 4 sexual health and wellbeing libido, Vaginal dryness Hormone antagonists Male sex hormone and antagonist ejaculation How to take a sexual history and decreased libido 5 Finasteride disorders, Zoladex, Leuprolide reduced volume Assessing someone with MS- of ejaculation 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex Breast cancer Some over-the-counter antihistamines Practical strategies to and decongestants can cause erectile 9 suggest to the patient dysfunction or problems with ejaculation. How to maintain or restore 10 intimacy Adapted from Dr John Dean Recreational drugs can lead to erectile ‘Are your medicines disrupting your sex life?’ Severe pain dysfunction Sexual diversity: 11 www.netdoctor.co.uk/sexandrelationships Decreased libido, what is normal? Analgesics Alcohol Impotence Amphetamines Law and ethics Opioid painkillers: 12 KEY Barbiturates (e.g. morphine, Methadone, Cocaine MS and contraception Oxycodone) 13 Main use Marijuana Nicotine 14 Top tips and resources Effect on Type of medication 15 References sexual function Click here for references Generic or brand name 51 8 Medications that can affect sex MS, SEX, SEXUALITY and INTIMACY Case study: Mrs M Mrs M, aged 56, has had MS for 20 years, and was I then got a phone call from Mr M, who said that he had approached his wife, who was delighted MENU reporting extensor spasms in her legs, affecting her quads as well as adductors. She was using he wanted to be more intimate and that the Background to this guide 1 Baclofen. spasms did not hurt but were unpredictable in their intensity. Having reviewed the patient and partner, Defining ‘normal’ 2 sexual function one question I asked was whether intimate I arranged for the consultant to see them about relationships had been affected as a result of her corrective injections, since two or more muscle MS-related sexual dysfunction 3 MS. She explained that they were ‘past it’ and bundles were affected. it was not a problem. Her husband telephoned Why we should ask about She had the injections, which improved the 4 sexual health and wellbeing me after doing the review. He had not wanted muscles, and now they are working to rekindle to discuss it in front of his wife but explained their sex life at her pace. 5 How to take a sexual history that he wanted more intimacy, but did not want to hurt her in any way physically, and therefore Assessing someone with MS- did not discuss the subject with her in case he 6 related sexual difficulties offended her. Supporting the partner 7 I explained the different medications that can be used in spasticity and that people with spasm Medications that can 8 affect sex can still have sex if the right medications are used. I suggested that they discuss it and come “Mr M said that he had Practical strategies to 9 suggest to the patient back to me if the Baclofen was not helping. approached his wife, How to maintain or restore 10 who was delighted that intimacy he wanted to be more Sexual diversity: 11 what is normal? intimate.”
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 52
MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties “Encourage patients to plan the sex more, Supporting the partner 7 so they are more likely to achieve pleasure Medications that can 8 affect sex and enjoyment. They do not have to tell Practical strategies to 9 suggest to the patient their partner about the preparatory time.” How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References MS, SEX, SEXUALITY and 9 Practical strategies to suggest to the patient INTIMACY It is common for people with MS-related Studies of human sexuality show that manual disabilities to worry that they cannot satisfy stimulation of the genitals is generally more MENU their partner because of the range of sexual effective in producing the appropriate physical Background to this guide difficulties they could be experiencing. Equally, sensations than intercourse, since manual 1 partners of people with MS may feel that spasms, stimulation allows greater control. (Appel, 2010).
Defining ‘normal’ pain, catheters prevent them giving pleasure Men who experience erectile problems find that 2 sexual function in the way they used to. Many are scared or more foreplay produces a more sustainable apprehensive. erection. 3 MS-related sexual dysfunction Many women in the general population report Spontaneous sex is not so easy when someone low sexual desire, particularly in established has MS. Instead, encourage patients to plan sex 4 Why we should ask about sexual health and wellbeing relationships. Gila Bronner (2010), a sex and more, so they are more likely to achieve pleasure How to take a sexual history relationship therapist, advises that women are and enjoyment. They do not have to tell their 5 often drawn to sexual intercourse because they partner about the preparatory time.
Assessing someone with MS- want love, closeness and intimacy. Their desire 6 related sexual difficulties is activated once they engage in sexual activity. Many say the pleasure from sex makes orgasm Supporting the partner 7 less essential, although feel, nevertheless, that if “Many say the pleasure they do not achieve orgasm, one or both partners Medications that can 8 affect sex has failed, sexually. from sex makes orgasm Practical strategies to less essential, although feel, 9 suggest to the patient
How to maintain or restore nevertheless, that if they 10 intimacy do not achieve orgasm, Sexual diversity: 11 what is normal? one or both partners has 12 Law and ethics failed, sexually.”
13 MS and contraception
14 Top tips and resources
15 References 54 9 Practical strategies to suggest to the patient MS, SEX, SEXUALITY and INTIMACY Before having sex Continence Discuss the need to empty bowels Timing • MENU beforehand. If Peristeen or enemas are used, • Encourage patients to plan sex when they the patient should time these so the bowels are Background to this guide have most energy – in the morning or after an 1 empty. Catheter bags and stomas should also be afternoon nap. Although it’s common for sex to emptied. Using catheter valves allows urine bags be initiated at night, this is not ideal if someone 2 Defining ‘normal’ to be removed. sexual function suffers from fatigue. • Encourage the patient to have towels 3 MS-related sexual dysfunction • Advise the couple to allow enough time so available to put underneath them or use they don’t feel rushed. afterwards. Why we should ask about 4 sexual health and wellbeing • Sex is tiring. Recommend it might not be a • Specialist continence pads are useful. The good idea just before going out. ‘Connie Mate Bedpad’ can absorb two litres of 5 How to take a sexual history fluid over eight hours and has a breathable PUL Medication waterproof backing. Assessing someone with MS- Propose that patients plan when to take 6 • Peg tubes and suprapubic catheters can be related sexual difficulties medications for spasms, pain or erectile • Environment tucked out of the way in attractive underwear, Supporting the partner dysfunction. 7 • Environment is important for relaxation and to such as crotchless pants that can be kept on all Anti-spasmodics should be taken an hour appeal to other senses such as smell and taste. the time. Medications that can • 8 affect sex before intercourse. Suggest relaxing music, burning essential oils, • Men who have indwelling catheters can use Medication for erectile dysfunction should be • a valve to prevent it leaking, then bend the Practical strategies to • candlelight for atmosphere and tasty snacks so 9 suggest to the patient taken 15-30 minutes before. It lasts from four–36 the couple can feed one another. catheter over the penis. hours. A condom over the penis and catheter is more How to maintain or restore Recommend removing as much hospital • 10 • comfortable for both and some partners report intimacy • Remind men that PDE5 drugs for erectile equipment as possible. dysfunction (Viagra, Levitra, Ciallis), increase the an increase in sensation. Sexual diversity: Suggest experimenting with cushions, pillows 11 what is normal? likelihood of an erection but sexual stimulation is • • Women with a urethral catheter should use a still necessary. and wedges for comfort. valve and move it to the side. Law and ethics 12 • There is no evidence that this family of • Slings and swings can help with positioning. • Encourage partners to feel fresh and smell drugs is effective for increasing female desire or nice – perfume or aftershave can stimulate MS and contraception 13 orgasm. Studies of Sildenafil in women report arousal. benefits are limited to an increase in lubrication. Top tips and resources 14 (Dasgupta et al, 2004) LINKS Sildenafil is not prescribed in the UK. Continence pads www.conni.com.au 15 References • 55 9 Practical strategies to suggest to the patient MS, SEX, SEXUALITY and INTIMACY Foreplay This can be the most important part of the sexual MENU act and all that is needed for sexual satisfaction. Background to this guide For men in particular, foreplay is essential 1 because the penis needs maximum stimulation before penetration. 2 Defining ‘normal’ sexual function Encourage patients to be open-minded as there MS-related sexual dysfunction are so many different things to experiment with. 3 What may work for one person might put-off another. Encourage them to find out what works 4 Why we should ask about sexual health and wellbeing and be honest with one another. 5 How to take a sexual history Porn Used in the right situation and with mutual Assessing someone with MS- 6 related sexual difficulties understanding pornographic books, magazines and DVDs can be helpful for lots of couples. Supporting the partner 7 Of course, porn is dramatised and a lot of it is probably not physically possible to re-enact. Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy “Encourage patients to be
Sexual diversity: open-minded as there are 11 what is normal? so many different things to Law and ethics 12 experiment with.” 13 MS and contraception
14 Top tips and resources
15 References 56
9 Practical strategies to suggest to the patient MS, SEX, Sex toys SEXUALITY and There is an abundance of sex toys for men and women. Experimentation INTIMACY is fun. The history of vibrators is fascinating. Vibrators were designed by GPs more than two centuries ago to treat hysteria. MENU www.psychologytoday.com Background to this guide Men 1 Both www.theguardian.com Artificial Vagina – These can be useful for • Fantasy play works fantastically for a lot masturbation, especially if a partner has impaired For a detailed read about the ‘job that Defining ‘normal’ of couples, using storytelling, dressing 2 hand function. sexual function up, etc. This is the time when they no one wanted’: Viberect − Vibrator that stimulates the penis • can be honest and share what they www.nytimes.com/books MS-related sexual dysfunction www.youtube.com 3 really like. Their fantasies might not be Sleeves – Also used for masturbation. They come • achievable, but the sharing can be fun. Why we should ask about in different tightnesses and materials – e.g. ribbed, 4 sexual health and wellbeing smooth, etc. Women Prostate Vibrator – Used rectally to stimulate the How to take a sexual history • Come in various designs 5 prostate gland. • Vibrators – Read here for more about how and sizes: from small bullet vibrators lubricants were developed. Humpus − Has attachments for male and female • to simulate the clitoris, to penetrative Assessing someone with MS- masturbation. Lubricants need to be silicone-based. 6 vibrators to be used vaginally/anally with related sexual difficulties Vibrator – To be used on the perineum. There are many on the market. KY jelly • varying sizes and speeds. is not a lubricant of choice. Lubricants Supporting the partner 7 • Clitoral Stimulators – These vary should not be oil-based as these are more from small vibrating ‘nubs’, to ones that likely to cause a UTI and they rot condoms. Medications that can simulate oral sex. If the partner has For information on natural lubricant go to 8 affect sex reduced dexterity, there are stimulators www.spokz.co.uk Practical strategies to that fit over a finger and just need to be • Jiggle Balls/Ben Wa Balls – These 9 suggest to the patient held in place, as well as ones that can be fit inside the vagina and are good for kept in the palm of the hand. practising pelvic floor exercises. How to maintain or restore 10 intimacy • Anal Plugs/Anal Beads – Some • Clitoral Pumps – Used to increase women find the added sensation of anal blood supply to the clitoral area to Sexual diversity: penetration adds to sexual arousal. heighten sensation. 11 what is normal? • Lubricants – Experiment with different Toothbrush attachment – This may or types of lubricants with varying smells • 12 Law and ethics may not work, but is cheap. and tastes. There are stimulating ones for Go to www.spokz.co.uk people who may find achieving orgasm Gripping aid – Can help if hand 13 MS and contraception difficult and extra lubricating ones if • function is impaired. www.spokz.co.uk dryness is a problem. 14 Top tips and resources
15 References 57 9 Practical strategies to suggest to the patient MS, SEX, SEXUALITY and INTIMACY Sex Itself Positioning Mutual masturbation can lead to a more intense It is important for patients to find a position or positions that take into MENU orgasm than penetrative sex. Patients can account spasms, pain, weakness, etc. Encourage experimentation to experiment with lubricants, oils, props – e.g. identify what works best – this doesn’t have to be flat in bed. Sex works Background to this guide 1 feathers, etc – and oral sex if possible. Remind just as well sitting in a chair or on the floor propped up with bean bags or patients that if they don’t manage penetrative cushions. Defining ‘normal’ sex, it doesn’t mean their relationship is any less 2 sexual function Cushions, various slings and swings are available online to help with satisfactory. positioning: www.spokz.co.uk 3 MS-related sexual dysfunction
Why we should ask about Women 4 sexual health and wellbeing A pillow underneath her bottom raises her How to take a sexual history hips and makes penetration easier for her 5 partner. She can be uncomfortable lying
Assessing someone with MS- flat on her back and it increases spasticity. 6 related sexual difficulties Alternative positions, such as spooning with the partner, allow for penetration from Men Supporting the partner 7 behind. Spooning allows access to the clitoral It isn’t always necessary for the man to be area as well as breasts for extra stimulation. If on top. He can sit in a chair or propped up Medications that can on cushions or beanbags with the partner 8 affect sex the couple want anal sex this could be a good position. straddling his lap, either face to face or with Practical strategies to her back to him. This last position allows 9 suggest to the patient the man access to his partner’s clitoris and How to maintain or restore breasts for extra stimulation and is good for 10 intimacy anal penetration. Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 58 9 Practical strategies to suggest to the patient MS, SEX, Medication for men 2. Cialis (Tadalafil) SEXUALITY and • Oral dose can be administered daily, either All three of these drugs are known as INTIMACY 10mg or 20mg doses. phosphodiesterase-5 (PDE5) inhibitors. By • Tadalafil can be taken at least 30 minutes blocking the PDE-5 enzyme, these drugs help MENU before sexual intercourse. It can now be the smooth muscles of the penis to relax and increase blood flow. PDE5 inhibitors are not Background to this guide prescribed as a daily dose. 1 suitable for everyone. Men who take nitrate It works for at least 36 hours. • drugs for angina, or certain types of alpha- Defining ‘normal’ Improved erections reported by 81% of 2 sexual function • blockers for high blood pressure and benign treated men. prostatic hyperplasia, should not take PDE5 MS-related sexual dysfunction 3 • Side effects include: headache, flushing, inhibitors. The PDE5 inhibitors are less effective rhinitis and back pain/myalagia. in men with diabetes and in men who have been Why we should ask about Safety concern: it also serves as an inhibitor treated for prostate cancer. 4 sexual health and wellbeing • of PDE11, an enzyme in the testes, so there is How to take a sexual history Success rates increase with the number of 5 concern about the effect that it has on sperm attempts, so a man should not be discouraged if and spermatogenesis. the drug does not work at first. Assessing someone with MS- 6 May be taken with or without food. related sexual difficulties 1. Viagra (Sildenafil) • Men with the following conditions should Supporting the partner Viagra is the most popular PDE5 inhibitor. 3. Levitra (Vardenafil) not take PDE5 inhibitors without the 7 • Estimated to have worked for 20 million men Administered orally in five, 10 and recommendation of their doctors and even • • then should use them with caution: severe 8 Medications that can worldwide. 20mg doses. affect sex heart disease, such as unstable angina, a recent Administered in 25, 50 and 100mg doses. Maximum dose administration frequency • • heart attack, or arrhythmias; recent history of Practical strategies to is once daily. 9 suggest to the patient • Taken one hour before sexual intercourse. stroke; hypotension; uncontrolled hypertension; Maximum dose is once daily. Effective from 30 minutes to four to five uncontrolled diabetes; severe heart failure; How to maintain or restore • • 10 intimacy Effective from 30 minutes to four to five hours, hours after administration – can work in just retinitis pigmentosa. (With this genetic disease, • 15 minutes. people do not produce phosphodiesterase-5 Sexual diversity: but can work for up to 12 hours. 11 what is normal? • Side effects include: headache, facial flushing, • 75% success rate. and do not respond to PDE5 inhibitors.) dyspepsia, dizziness, rhinitis and abnormal Treatment with vardenafil in patients with 12 Law and ethics • vision. erectile dysfunction that were previously Should be taken on an empty stomach. unresponsive to sildenafil produced significant 13 MS and contraception • improvements in erectile function domain score ! Please check and maintenance of an erection. Top tips and resources summary of product 14 • Side effects include: headache, flushing and characteristics rhinitis. for specific drug References 15 May be taken with or without food. information • 59 9 Practical strategies to suggest to the patient MS, SEX, SEXUALITY and INTIMACY Other pharmological strategies for men MENU 1. Transurethral Therapy 3. Vacuum Therapy (Alprostadil – MUSE) Background to this guide Erection limited to 30 minutes. 1 • • Mechanism of action: vasodilator. • Results: 80–90%. Defining ‘normal’ Administration: 125, 250, 500, 1000mg. Contraindications: bleeding disorders, sickle 2 • • sexual function • Insert in the urethra. cell disease, anticoagulation. 3 MS-related sexual dysfunction • Erection occurs 5–10 minutes later. • Complications: coolness, petechiae, Erection lasts 30–60 minutes. numbness, pain with ejaculation. Why we should ask about • High drop-out rate. 4 sexual health and wellbeing • Results: 10–65%. • Side effects: Pain, bleeding, priapism (<3%). How to take a sexual history • 5 4. Penile prosthesis Two or three piece. Assessing someone with MS- 2. Intracavernous Injection Therapy • 6 related sexual difficulties e.g. Caverject or Viridal • Low morbidity. Supporting the partner Mechanism of action: smooth muscle Low mortality surgery. 7 • • vasodilator. • Low complication rates. Medications that can Administration: 10, 20, 40mg. High success rates – 5% malfunction 8 affect sex • • • Inject directly into corporeal bodies of the rate at five years. Practical strategies to penis. High satisfaction rate – 87%. 9 suggest to the patient • Results: 70–90%. High partner satisfaction rate. How to maintain or restore • • 10 intimacy • Dropout rates: 25–60%. Side effects: pain (36%), priapism (4%), Sexual diversity: • 11 what is normal? fibrosis. ! Please check LINKS Men’s Health Magazine. Five secrets of sexually Law and ethics summary of product 12 characteristics satisfied women. www.menshealth.com for specific drug 13 MS and contraception information FURTHER READING ON BEING SINGLE WITH MS AND HAVING SEXUAL DYSFUNCTION Top tips and resources 14 Appel JM (2010). Sex rights for the disabled? Journal of medical ethics, 36, 152–154. 15 References 60 9 Practical strategies to suggest to the patient MS, SEX, SEXUALITY and INTIMACY Sexual strategies for women Vaginal dryness These focus on what works for an individual but The patient should have plenty of lubricants sexual enjoyment. These areas may not be as • orgasmic but can produce pleasure and guide MENU some strategies are worth considering even if available to apply liberally and use several times their only result is improving communication during sex. Silicone-based lubricants are good the couple away from areas that have become Background to this guide 1 between the couple. and can be bought over the counter. They are dysfunctional. slippier and come in different flavours, such as Guided imagery, exploring sexual fantasies Defining ‘normal’ Women with MS-related sexual dysfunction • 2 peppermint, which can enhance sensation. It is sexual function report fluctuating, reduced or no genital and role play increase arousal and libido. important to explain how these should be used. sensation so the HCP should discuss how the Different sexual positions can produce more 3 MS-related sexual dysfunction • patient is going to achieve pleasure from non- • Replens suits post menopausal women. It is pleasure or be more achievable particularly for a long lasting vaginal moisturiser, rather than Why we should ask about penetrative sex. Many women find this difficult people experiencing spasticity and adductor 4 sexual health and wellbeing to accept, so this discussion must be open lubricant, which helps regenerate the cells of the spasm. Women who acknowledge the need to and frank. Not all women will be able to have vaginal wall and encourages lubrication. Used experiment find sex improves. 5 How to take a sexual history twice a week, it replenishes vaginal moisture penetrative sex or orgasm. Some feel sex is Using a vibrator on clitoral, perineal or anal incomplete because of this (Koch et al, 2002) so for up to three days. It can be bought over the • Assessing someone with MS- areas can increase pleasure. Mains operated 6 counter or prescribed. related sexual difficulties it is important patients are able to explore other vibrators are likely to be more effective. Too ways of feeling sexually fulfilled and learn new Oestrogen-based vagi fem pessaries can be Supporting the partner • high a hertz can cause spasms in women with 7 ways to become aroused. prescribed for dryness. They only release the increased muscular tone. HCPs should discuss hormone in the vagina. which vibrator is appropriate – some patients 8 Medications that can affect sex Oil-based lubricants are inadvisable – they cause find phallic styles more helpful, others may prefer Practical strategies to bladder infections and damage condoms. non-penetrative designs. Women can be wary 9 suggest to the patient about using vibrators – normalise them. It is not Foreplay dirty to use one. How to maintain or restore 10 intimacy Many women find foreplay the most exciting Women patients with fatigue are more likely to part of sex. Discuss how they can gain pleasure • Sexual diversity: experience sexual dysfunction (Fraser et al, 2008). 11 from intimate fondling, mutual massage and oral what is normal? Ways of conserving energy and managing fatigue stimulation. include taking a cool shower or having a rest 12 Law and ethics Incorporating massage and passive exercises before sex, having sex in the daytime rather than into foreplay can help with muscle tightness and MS and contraception evening. Brief intercourse can still be enjoyable. 13 spasticity in lower limbs. • Some women experience repeated urinary Top tips and resources tract infections as a result of sexual intercourse. 14 Sensate focus This detracts attention from the genitals The HCP can offer general advice but if this does References not help, refer the patient to a urologist who may 15 Click here for references and encourages couples to discover other areas of the body that can lead to a degree of recommend antibiotics. 61 MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient ‘When it comes to sex, it’s not the How to maintain or restore 10 intimacy destination that counts−it’s the journey’ Sexual diversity: 11 what is normal? MIMI MOSHER, MS PATIENT 12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References MS, SEX, SEXUALITY and 10 How to maintain or restore intimacy INTIMACY What is intimacy? How can intimacy be restored? Intimacy is not just about having intercourse or Talking. Individuals’ bodies change, become MENU orgasms – it is much more than this. Intimacy painful or numb. Unless this is shared, how will Background to this guide 1 involves caressing, kissing, mutual masturbation a partner know? Encourage the patient to and self-masturbation. It includes being able speak to their partner about difficulties and Defining ‘normal’ to talk openly in a relationship about feelings fears. Suggest speaking to friends. Perhaps the 2 sexual function without fear. Intimacy does not always need problem happens to other couples that don’t 3 MS-related sexual dysfunction words but being able to put feelings and have MS in the relationship. emotions into words makes intimacy more likely. If a couple finds it difficult to talk, they could Why we should ask about 4 sexual health and wellbeing start by writing down thoughts. This may make Why is intimacy important? it easier to share. Writing helps if a patient How to take a sexual history 5 Intimacy is important for sexual intercourse. has difficulty with word-finding, or memory It helps maintain communication and this can problems. It is important to do this at a time Assessing someone with MS- of day when a patient is relaxed and least likely 6 related sexual difficulties make sex more enjoyable. It is important to say “I love you”, as the way a person behaves may to be interrupted – e.g. before children get home Supporting the partner 7 not always be enough. from school. HCPs may be able to offer practical solutions. “Intimacy includes Medications that can 8 affect sex Effects of MS on intimacy A referral to a sex therapist may help, or RELATE. Someone with pain/fatigue/spasticity/ Encourage patients to speak to others with MS being able to 9 Practical strategies to suggest to the patient dysfunction is likely to avoid intimacy as they or partners of those with MS. They may find the How to maintain or restore fear sexual activity. This can have profound problem is not unusual and they may receive talk openly in a 10 intimacy consequences for relationships. some practical advice. Sexual diversity: relationship about 11 what is normal? How does it affect relationships? 12 Law and ethics A lack of intimacy in a relationship leads to feelings without breakdown in communication. This can generate 13 MS and contraception resentment and the relationship fails. It is less fear.” likely that sex will take place. 14 Top tips and resources
15 References 63 10 How to maintain or restore intimacy MS, SEX, SEXUALITY and INTIMACY Changing roles If a partner is also a carer, it can be difficult for MENU both to switch between roles but it is important. Using signals can help - wearing an apron for Background to this guide 1 certain jobs. Social services may support some tasks, especially personal care. This can help Defining ‘normal’ differentiate the roles and provide the energy to 2 sexual function be intimate. 3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7 Massage and physical contact Medications that can When there are difficulties in a relationship, 8 affect sex couples stop touching. If this has been absent the couple could start by holding hands 9 Practical strategies to Feeling sexy suggest to the patient Romance or having a cuddle. Touch is an important way of restoring intimacy. It can progress to It is common for people with MS to stop feeling How to maintain or restore Suggest making a date or playing a game. 10 intimacy massaging each other, which is relaxing and in sexy, especially if there are changes in body Ensure there is time as a couple, especially if turn helps relieve other symptoms such as pain image or their role in the family. A woman may Sexual diversity: there are children in the relationship. Ensure the 11 what is normal? and spasticity. If possible, sharing a bath can stop wearing make-up, as it’s too difficult to patient makes at least one night a month ‘date restore physical closeness. apply or it takes too much energy. But she might 12 Law and ethics night’. Even if it is not possible to go out they can have eyelashes tinted rather than trying to apply watch a movie at home and have a romantic mascara, or have a wax if it it’s too difficult to 13 MS and contraception dinner or takeaway. When the couple gives each shave. She might try a new haircut. Exercise other time, this helps create an environment or relaxation can also help someone feel sexy where it is safe to talk. Candles or music can help 14 Top tips and resources again. the atmosphere, flowers too.
15 References 64 10 How to maintain or restore intimacy MS, SEX, Body mapping SEXUALITY and Sensory body mapping explores the exact location of pleasant, decreased, or altered sensations INTIMACY caused by MS symptoms. Body mapping is used to help compensate for primary (genital) or secondary (non-genital) sensory changes, but it can be a useful first step in enhancing physical MENU pleasure, emotional closeness, sexual communication and intimacy. Background to this guide 1 To conduct a ‘sensory body mapping’ exercise (15 – 20 minutes): Massaging with essential 2 Defining ‘normal’ oils and being very sensual sexual function might be all a person desires 3 MS-related sexual dysfunction to make them feel sexually satisfied. Why we should ask about The patient begins by systematically 4 sexual health and wellbeing touching the body from head to toe (or all 5 How to take a sexual history those places the patient can comfortably reach). Suggest conducting this exercise Assessing someone with MS- without clothes on, in a place that is private, 6 related sexual difficulties relaxing, and a comfortable temperature. Supporting the partner The patient should vary the rate, rhythm 7 These sexual exercises can help restore and pressure of touch, note areas of sensual relationships. They can be non-sexual or sexual. Medications that can pleasure, discomfort, or sensory change They ban intercourse and masturbation but help 8 affect sex and alter pattern of touch to maximise the to improve lines of communication. There are Practical strategies to pleasure that can be felt without trying to three stages: non-genital sensate focus, genital 9 suggest to the patient obtain sexual satisfaction or orgasm. Next, the patient informs their partner sensate focus and penetrative sensate focus. How to maintain or restore of their ‘body map’ information and The exercises help re-build intimacy before 10 intimacy instructs him/her in touching them in a progressing to sexual intercourse. They start by Sexual diversity: similar fashion. The partner can provide encouraging couples to touch each other, initially 11 what is normal? the same information about his or her avoiding the genital area, but later progressing to ‘body map’. They should take turns the genitals. Finally penetration is allowed, which 12 Law and ethics providing pleasure without engaging in does not just include penile penetration but the sex or trying to orgasm. The emphasis is MS and contraception use of fingers or sex aids. 13 on communication and pleasure, not sex or orgasm. LINKS 14 Top tips and resources More about body mapping www.healthcentral.com www.counselling-matters.org.uk 15 References 65 10 How to maintain or restore intimacy MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1 Tantric sex 2 Defining ‘normal’ sexual function This involves arousing all five senses of sight, taste, touch, scent and hearing. It is about the 3 MS-related sexual dysfunction moment and not the end goal. It helps to set the Why we should ask about scene for intercourse to happen and helps the 4 sexual health and wellbeing couple get to know each other again.
5 How to take a sexual history Masturbation This gives someone a chance to explore their Assessing someone with MS- 6 related sexual difficulties body and find out what gives them pleasure. It makes it easier to communicate what he or she Supporting the partner 7 likes and builds confidence. If the patient doesn’t know what gives him or her pleasure, it is difficult Medications that can 8 affect sex to teach someone else. It is important to not feel ashamed or embarrassed, to relax and enjoy the Practical strategies to sensations. 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources Click here for references 15 References 66 MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex “Being diagnosed with MS quickly alters a Practical strategies to 9 suggest to the patient person’s norms – walking, driving, working, and How to maintain or restore 10 intimacy of course expressing themselves sexually, either Sexual diversity: 11 what is normal? as an individual or within a relationship.” 12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References MS, SEX, SEXUALITY and 11 Sexual diversity: what is normal? INTIMACY Healthcare workers assume their beliefs are The MS specialist nurse/practitioner can facilitate normal, but unless they are prepared to accept this discussion. Care and nursing home staff MENU other versions of that norm, they are unlikely might also contribute, as they may be needed Background to this guide to develop a therapeutic conversation with the to enable the relationship. Quite often this is 1 patient. an uncomfortable topic for all parties. It takes Defining ‘normal’ Being diagnosed with MS quickly alters a trust, tact and relies heavily on the relationship 2 sexual function person’s norms – walking, driving, working, and between the patient, the partner and the HCP. 3 MS-related sexual dysfunction of course expressing themselves sexually, either An in-depth knowledge of the couple’s as an individual or within a relationship. background, as well as cultural and religious Why we should ask about influences, is useful. The EX-P-LI-SS-IT model 4 sexual health and wellbeing So norms change with time and circumstance. And although everybody has their own version forms an excellent assessment tool to explore these complex issues. 5 How to take a sexual history of normal, differing across cultures, religions and even individuals, most adults feel that their Assessing someone with MS- norms are standard for the society they inhabit. 6 related sexual difficulties In sex and intimacy, normal can be defined as Supporting the partner 7 a negotiated agreement between consenting “In sex and intimacy adults that all parties feel comfortable with. Medications that can normal can be defined 8 affect sex Communication is central to the development of
Practical strategies to this agreement. It is therefore essential that, as a 9 suggest to the patient person’s abilities and needs change with MS, the as a negotiated
How to maintain or restore partner is aware of these changes. 10 intimacy agreement between
Sexual diversity: 11 what is normal? consenting adults 12 Law and ethics that all parties feel 13 MS and contraception comfortable with.”
14 Top tips and resources
15 References 68 11 Sexual diversity: what is normal? MS, SEX, Pornography SEXUALITY and For many, pornography has negative But fiction is not the only source of fantasy decade ago would only have been accessible via INTIMACY connotations such as exploitation, abuse or and role-play. The Internet offers simulated extreme fetish clubs. something that is sleazy or dirty. For others, worlds that individuals and couples can involve Some people are using the Internet to film their MENU it is acceptable, even exciting, within certain themselves in and redesign their images. live sexual encounters and inviting others to limits. To different people, the point at which An avatar can prove to be a stimulating and Background to this guide do the same. There is an Internet site linked to 1 pornography or nudity becomes offensive differs attractive reality. Facebook for those who want to take ‘selfies’ wildly. Defining ‘normal’ Sexual awareness before, during or after sex. Times and attitudes 2 sexual function Societal norms have shifted, although many However the use of the Internet to access have changed. For example, it is acceptable people are offended and concerned about for women to openly read stories of sexual MS-related sexual dysfunction pornography raises questions about its influence 3 the depiction and possible exploitation of on some people’s perceptions of sex. domination and sadomasochism in public. participants in porn websites. Why we should ask about A sexually inexperienced or young person may Information 4 sexual health and wellbeing Appearing shocked or judgemental when a patient expresses their desires or use of be at risk of forming an extreme or risky view of Being a safe, non-judgemental source of How to take a sexual history 5 pornography may harm communication. what is normal if his or her only access to sexual information about sex, which takes into Therefore, the MS nurse/practitioner should information is via pornography sites. consideration knowledge of the person’s Assessing someone with MS- neurological sexual dysfunction, is a very 6 related sexual difficulties consider how they may react to these A report by the Office of the Children’s conversations, in order to prepare adequately. Commissioner (2011) provides evidence that valuable part of the MS nurse/practitioner’s role. Supporting the partner 7 A sound knowledge of the ethnic and cultural exposure to pornography does influence make-up of the caseload is extremely useful. children’s attitudes to relationships and sex. Medications that can 8 affect sex Erotic fiction is not new, but was propelled Commissioner Maggie Atkinson has pointed into the mainstream in 2012 when the novel out that violent and sadistic imagery is readily Practical strategies to available to very young children, even if they “Smartphones, 9 suggest to the patient Fifty Shades of Grey sold 100 million copies worldwide. It enabled women to be more do not go searching for it. The fact that porn is tablets and PCs have How to maintain or restore everywhere reveals a high correlation between 10 intimacy comfortable discussing sexuality and desire. made internet porn Its presence in supermarkets, major book exposure to pornography and its influence on Sexual diversity: children’s behaviour and attitudes. increasingly the 11 what is normal? chains, on public transport and as a topic of conversation in workplaces created a minor The HCP should therefore be aware of this trend easiest source.” Law and ethics 12 social revolution, spreading the idea that it and be prepared to discuss the role of fantasy in was possible to be more sexually creative. sex and the potential dangers of more extreme 13 MS and contraception Sex therapists have acknowledged that erotic fantasy. literature and sexual fantasy can help women Smartphones, tablets and PCs have made Top tips and resources focus on sex and reach orgasm. 14 internet porn increasingly the easiest source, LINK but this also offers access to material that a Protecting children www.thesundaytimes.co.uk 15 References 69 11 Sexual diversity: what is normal? MS, SEX, SEXUALITY and INTIMACY Fantasy Arousal Fantasy and role-play may be an integral part Other research studies have shown that MENU of a couple’s relationship, particularly if one of women are more likely to under-rate their them is less physically able. The internet also reported arousal and to base their answers on Background to this guide 1 offers simulated worlds where a person can what arouses them on value judgements and redesign their image. This use of an avatar can expected norms (Chivers et al, 2004). When the Defining ‘normal’ same studies were run with males, they were 2 sexual function prove to be a more stimulating and attractive ‘reality’. much more likely to rate their arousal in line with 3 MS-related sexual dysfunction There is often a focus on how the male develops the actual physiological responses. The level opinions and attitudes to sex. As most people of privacy was very significant to the females, Why we should ask about whereas it was mostly irrelevant to the males. 4 sexual health and wellbeing with MS are women, perhaps HCPs should focus more on the female libido and attitudes. So, although attitudes have moved on, it would How to take a sexual history 5 Tracey Cox is a relationship therapist and appear, nonetheless, that women still feel more her book Dare highlighted the difficulty and constrained revealing their desires or needs. Assessing someone with MS- When working with females, it may be useful to 6 related sexual difficulties problems of turning an erotic daydream into reality. Her book looks at 20 couples who each bear this in mind. However, trusting and feeling Supporting the partner 7 discussed their fantasy and reveals how some safe is a fundamental need in both sexes. were able to play them out successfully. She Medications that can 8 affect sex concluded that fantasies are a very powerful way of spicing up a relationship. Practical strategies to 9 suggest to the patient “Fantasy and role-play How to maintain or restore 10 may be an integral intimacy part of a couple’s Sexual diversity: 11 what is normal? relationship, particularly if one of them is less 12 Law and ethics physically able.” 13 MS and contraception
14 Top tips and resources
15 References 70 11 Sexual diversity: what is normal? MS, SEX, Safety and risk SEXUALITY and INTIMACY What is safe? Take care when experimenting with anal Sex is fun, natural, and a great form of exercise. sex. MENU As with many fun things, however, it is not Anal sex is a riskier type of sex than vaginal, Background to this guide although many couples (gay and straight) derive 1 without risk. pleasure from it. Choose sexual partners with care. Defining ‘normal’ Keep toys clean. 2 sexual function It has often been said that having sex with someone is like having sex with everyone they’ve Sex toys must be kept clean and hygienic. Advise 3 MS-related sexual dysfunction ever been with. patients to rinse the toys well and be sure to dry them before storing them in a sealed bag. Why we should ask about Appropriate protection reduces the risk of 4 sexual health and wellbeing infection. Get tested regularly. Make sure the patient knows how to use a male Suggest patients go to their doctor or a free clinic How to take a sexual history 5 condom properly for the lowest possible risk. regularly to make sure they haven’t contracted Female condoms are used for penetrative vaginal HIV or any other STIs. Assessing someone with MS- 6 related sexual difficulties sex. Dental dams are used for oral sex on female genitalia or the anus. Make sure condoms and Supporting the partner 7 dental dams do not have any holes, tears, or other damage. Medications that can 8 affect sex Appropriate contraception reduces the risk
Practical strategies to of pregnancy. 9 suggest to the patient Unless two partners are both completely monogamous and free of STIs and HIV, How to maintain or restore 10 intimacy contraceptives should be used in conjunction with condoms to prevent the transmission of Sexual diversity: 11 what is normal? infection. The incidence of sexually transmitted diseases is increasing in the over-fifty age group 12 Law and ethics (RCN, 2011).
13 MS and contraception
14 Top tips and resources
15 References 71 11 Sexual diversity: what is normal? MS, SEX, SEXUALITY and INTIMACY Case study: Miriam I can’t walk, I can’t stand up, my right arm Sexually, MS affects me because it takes me “I have learnt a lot about MENU doesn’t work at all, my left arm is weak and longer to have an orgasm. I can still have one but myself, and about the issues Background to this guide only partially works. I have a lot of spasticity. I it is not as strong or of the same sort of quality. 1 have different energy levels throughout the day; I am quite limited in what I can do, as my arms facing people where disability Defining ‘normal’ I have more energy first thing in the morning and hands don’t work properly. So this means is part of the equation in a 2 sexual function and last thing at night. This limits how much I I cannot masturbate my partner (or myself), sexual relationship.” MS-related sexual dysfunction can do in the day. I’m very affected by the heat; caress him fully, hug him, pull him towards me 3 my muscles get weaker, my speech becomes − many things that I feel really sad about and slurred, I can’t think clearly, I get very easily wish I could. I cannot move my body freely in Why we should ask about 4 sexual health and wellbeing overwhelmed, my mind feels foggy. My skin is bed, which limits how I can move or position very sensitive at the moment and I’m having myself for sex. I can’t be proactive in the sexual How to take a sexual history 5 real problems with blisters. I have a suprapubic partnership. I can’t physically initiate non- catheter and I have occasional urine and bowel verbal sexual communication or movement, or Assessing someone with MS- 6 related sexual difficulties incontinence. touch. This loss of what I can do for my husband and what it is like for him is what I find deeply Supporting the partner I started with relapsing-remitting MS with very 7 few symptoms, then after about 12 years I moved distressing, as well as what I can no longer do for myself. Medications that can to secondary progressive MS. I have now been 8 affect sex a full-time wheelchair user for 14 years. I am a Talking with my husband, talking to other 50-year-old female who has been married for disabled people, reading about disability and Practical strategies to 9 suggest to the patient nearly 20 years. sex, running workshops and giving presentations on disability and sex and intimacy − doing all How to maintain or restore 10 intimacy these things, I have learnt a lot about myself, and about the issues facing people where disability Sexual diversity: 11 what is normal? is part of the equation in a sexual relationship. I have learned about experimenting with different 12 Law and ethics sex toys and the importance of counselling (with organisations like Outsiders and Sexual 13 MS and contraception Health and Disability Alliance). I have also met people who are involved in sexual work, as sex 14 Top tips and resources therapists, sex workers or with Tantric massage. Click here for references 15 References 72 MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex “People with disabilities may feel paying Practical strategies to 9 suggest to the patient for sex is the only option. A thoughtful How to maintain or restore 10 intimacy discussion about the pros and cons of this Sexual diversity: 11 what is normal? – including ethical, legal, and sexual health Law and ethics 12 issues – will be beneficial.” 13 MS and contraception
14 Top tips and resources
15 References MS, SEX, 12 Law and ethics SEXUALITY and INTIMACY Mental capacity
MENU What is my duty of care and how does the Principle 5: Before the act is done or the A duty of care Background to this guide Mental Capacity Act work? decision is made, regards must be had to 1 The Act protects a person’s rights to make their MS specialist nurses have a duty of care under whether the purpose for which it is needed can own decisions. It specifically states that choice Defining ‘normal’ the NMC Code of Practice to always act in our be as effectively achieved in a way that is less of sexual partner will always be outside the remit 2 sexual function patients’ best interests, but what if we feel that restrictive of the person’s rights and freedom of of the Act. Principle 3 also enshrines the right to the situation is further complicated by cognitive action.(Section 1.6) (Section 2.0, p20) make a decision that others disagree with, be 3 MS-related sexual dysfunction problems? Even if it is established that the person in our they family or professional. Why we should ask about The Mental Capacity Act‘s philosophy is to ensure care lacks capacity, sections 27–29 and 62 of The Act does, however, charge us with the 4 sexual health and wellbeing that any decision made or action taken on behalf the Act set out specific decisions that can never responsibility to give all and any information, in be carried out under the Act, whether by family, 5 How to take a sexual history of someone who lacks capacity, is made in their whatever form is effective, to ensure the person best interests. It aims to balance an individual’s carers, professionals, attorneys, or the Court of can make an informed choice. In the above Assessing someone with MS- right to make decisions for themselves with their Protection (Section 1.10, p16). case, that information could be advice and 6 related sexual difficulties rights to be protected from harm. It comprises of Choice of partner guidance on contraception and sexual health. Supporting the partner five statutory principles which are listed below: Perhaps more importantly, the Act states that 7 Nothing in the Act permits consent to marriage, the vulnerable person has a right to be protected Principle 1: A person must be assumed to have civil partnership or sexual relations on someone Medications that can capacity unless it is established that he lacks from abuse and exploitation (section 1.11, p17). 8 affect sex else’s behalf. capacity (section 1.2) If the HCP has concerns, ongoing monitoring with Nurses and practitioners are expected as Practical strategies to a view to safeguarding may be appropriate and 9 suggest to the patient Principle 2: A person is not to be treated as professionals to have a good working knowledge is suggested under Section 4.53 (p60, Code of unable to make a decision unless all practicable of the Act. We are not legally bound to apply all How to maintain or restore Practice MCA). 10 intimacy steps to help him to do so have been taken of it but we cannot be ignorant of it. We would be without success (section 1.3) expected to adhere to the five principles at the Sexual diversity: 11 what is normal? Principal 3: A person is not to be treated as very least. unable to make a decision merely because he So, how can the Act help the HCP who feels that 12 Law and ethics makes an unwise decision (section 1.4) their patient is vulnerable and not making good long-term choices about who she has sexual 13 MS and contraception Principle 4: An act done or decisions made under this Act for, or on behalf of, a person who relations with? lacks capacity, must be done or made in his best 14 Top tips and resources interests (section 1.5)
15 References 74 12 Law and Ethics MS, SEX, SEXUALITY and INTIMACY Cognition difficulties Alterations in cognition such as forgetfulness, particularly if they are anxious or distressed. “Nurses and nursing staff treat MENU apathy and disinterest can have a significant (RCN booklet, 2011) Background to this guide everyone in their care with 1 impact on a couple’s dynamics. Patients’ Confidentiality concentration span can be reduced and they dignity and humanity – they The Caldicott Principles cover all NHS Defining ‘normal’ may lack insight into how their condition affects understand their individual 2 sexual function employees. HCPs are also bound by their their partner. There are sometimes cases of health professional council. In the UK, health needs, show compassion and MS-related sexual dysfunction hypersexuality (Gondim and Thomas, 2001). 3 confidentiality is a common law duty. HCPs sensitivity, and provide care in HCPs often feel a patient affected cognitively should identify situations when confidentiality Why we should ask about a way that respects all people 4 sexual health and wellbeing may be taken advantage of. The RCN has a list of cannot be maintained such as to protect a child considerations for the HCP: or if someone is at risk of abuse. equally.” 5 How to take a sexual history • Someone with cognitive problems may have Code of Standard sexual needs Assessing someone with MS- The NMC Code of Standards (2008) states that RCN 6 related sexual difficulties • How does the Mental Capacity Act 2005 nurses: The RCN (2014) has developed Principles of Care, Supporting the partner apply? the first of which states: 7 Make the care of people your first concern, Consent and autonomy • • treating them as individuals and respecting their “Nurses and nursing staff treat everyone in Medications that can Does the patient recognise their partner? dignity. their care with dignity and humanity – they 8 affect sex • Is the patient able to refuse sex? Can he or she understand their individual needs, show • Work with others to protect and promote the Practical strategies to express opinions? • compassion and sensitivity, and provide care in a 9 suggest to the patient health and wellbeing of those in your care, their way that respects all people equally”. • Ensure the patient’s partner is aware of families and carers, and the wider community. How to maintain or restore cognition changes and how this affects their 10 intimacy Provide a high standard of practice and ability to have an intimate relationship • care at all times , be open and honest, act with Sexual diversity: Support the patient’s partner in how to read 11 what is normal? • integrity and uphold the reputation of your non-verbal communication, respecting fear or profession. 12 Law and ethics reluctance • HCPs involved with the patient should meet 13 MS and contraception and acknowledge the NMC ‘Advocacy and autonomy’ advice sheet 14 Top tips and resources • Be aware of the need for confidentiality Monitor the patient’s mental health, References • 15 75 12 Law and Ethics MS, SEX, Disability and prostitution SEXUALITY and INTIMACY The risk of prosecution for an HCP “Under no circumstances should RCN guidance on access to health workers If a patient discloses their desire to pay for staff play any part in making The RCN (2011) is clear about the position MENU sex to meet their sexual needs, we as health of healthcare workers assisting patients to Background to this guide arrangements for a sex worker 1 professionals need to be prepared to discuss access the services of sex workers: ‘Under this openly and without judgement. as, in doing so, they may well no circumstances should staff play any part Defining ‘normal’ in making arrangements for a sex worker as, 2 But HCPs risk prosecution under the Sexual risk liability for an offence under sexual function in doing so, they may well risk liability for an Offences Act (2003) if we help a patient make the Sexual Offences Act (2003).” MS-related sexual dysfunction offence under the Sexual Offences Act (2003)’ 3 arrangements to pay for sex. We would be (RCN, 2011, p24). in breach of the NMC code of Clear Sexual The purpose of direct payments, according Why we should ask about to NHS Choices (2014), is: ‘to give you more 4 sexual health and wellbeing Boundaries (2008) and in the case of a care Patients can access sex workers home, the provider or manager could be flexibility in how your services are provided. By independently How to take a sexual history giving you money instead of social care services, 5 prosecuted for ‘keeping a disorderly house’. If competent individuals wish to access the you have greater choice and control over your To be a sex worker is not illegal, but to solicit or services of sex workers independently, the TLC Assessing someone with MS- life and are able to make your own decisions 6 financially profit from providing sex for people is. Trust (2014) provides information and access to related sexual difficulties about how your care is delivered’. sex workers. Supporting the partner People with disabilities may feel paying for sex 7 is the only option. A thoughtful discussion Human rights and sexual self- about the pros and cons of this – including determination 8 Medications that can affect sex ethical, legal, and sexual health issues – will The Convention on the Rights of Persons with Disabilities (UN, 2008) believes that those with Practical strategies to be beneficial. 9 suggest to the patient disabilities who are capable of informed Funding sex with direct payments consent must enjoy all human rights and How to maintain or restore 10 intimacy Some individuals are using direct payments freedoms and adaptations have to be made in order to fund access to the services of sex to enable those with disabilities to exercise LINKS Sexual diversity: 11 what is normal? workers. The issue of access to sexual partners their rights. The Convention stipulates that Disability and the oldest profession is very complex. The World Health Organization the disabled have the right to sexual self- www.ablemagazine.co.uk 12 Law and ethics (2009) states that those with disabilities are ‘as determination. The UN (2008) and WHO (2009) Family Planning Association www.fpa.org.uk entitled to self-determination, confidentiality state those with disabilities need information Regard www.regard.org.uk 13 MS and contraception and respect as any other individuals’ and that no regarding sexual and reproductive health and one should be subjected ‘to arbitrary or unlawful have the right to make decisions for themselves Prostitution www.politics.co.uk 14 Top tips and resources interference in their privacy’. Consequently, how about any sexual activity. an individual decides to spend their benefit Disabled people and paid for sex – the issues should not be anyone else’s business. www.tlc-trust.org.uk 15 References 76 12 Law and Ethics MS, SEX, Nursing homes SEXUALITY and INTIMACY There is a great deal of discussion about The right to consensual relationships individuals living in nursing homes being Facilities that do not acknowledge the enabled to express their sexuality and participate MENU individual’s sexuality or the need for intimate in sexual activity. Heath (2011) suggests that they relationships can cause significant unhappiness. Background to this guide 1 should have the right to consider their rooms as Individuals with physical disabilities will their home. Consequently, if they are consenting experience sexual feelings, fantasies, thoughts Defining ‘normal’ adults, they are entitled to participate in 2 sexual function and desires just the same as able-bodied consensual relationships with other adults. individuals (TLC Trust, 2014). MS-related sexual dysfunction 3 Legitimate nursing activity In nursing homes, individuals may have limited The RCN (2000, 2011) specifically states that opportunity for sexual relationships. However, Why we should ask about 4 sexual health and wellbeing ‘addressing residents’ sexuality and sexual RCN guidelines (2011) suggest that individuals health are appropriate and legitimate areas of have a right to participate in consensual How to take a sexual history 5 nursing activity’. relationships in their own rooms, providing the The RCN (2011) has developed guidelines on relationship has no negative impact on other Assessing someone with MS- 6 related sexual difficulties sex and sexuality of older people in care homes, residents. which could be used when caring for physically Supporting the partner Heath (2011) believes nursing homes should 7 disabled individuals. The guidelines stipulate develop policies promoting privacy and that care home providers should ‘strive to offer Medications that can confidentiality. If nursing home patients or 8 affect sex environments which facilitate individual rights residents above the age of consent form and choices in sexuality, expression and intimate attachments, providing both parties are Practical strategies to 9 suggest to the patient relationships’ (RCN, 2011, p2). competent, it is unethical for staff to discuss the relationship with any third party (partners, How to maintain or restore 10 intimacy parents or children) because it breaches confidentiality. Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 77 12 Law and Ethics MS, SEX, SEXUALITY and INTIMACY Managing rights Recognition Model, which promotes the concept The RCN (2011) outlines how rights can be of the individual’s sexuality being supported by MENU managed within the care system: the MDT, physiotherapists exploring spasticity Background to this guide and positioning, occupational therapists 1 • Residents should be permitted to remain in reviewing fatigue management and provision of their rooms undisturbed. equipment – e.g. vibrators – the speech therapist Defining ‘normal’ 2 sexual function • They should be free to lock their doors unless supporting communication between individuals. a medical condition dictates otherwise. Unfortunately, not all individuals living with MS 3 MS-related sexual dysfunction • Staff should always knock and wait for maintain the ability to consent to participate in Why we should ask about permission before entering a resident’s room. a sexual relationship. It is therefore imperative 4 sexual health and wellbeing Heath (2011) suggests double beds and/or that they are protected from any form of abuse from relatives, staff or visitors. If at any time there 5 How to take a sexual history private accommodation should be available for conjugal visits. is a concern regarding an individual’s capacity, it would be necessary for a formal assessment Assessing someone with MS- 6 related sexual difficulties However, sexual activity may prove difficult to be completed and any necessary safeguards because of an individual’s need for personal implemented. Supporting the partner 7 care – e.g. transferring, positioning, managing catheters, providing personal hygiene before and Medications that can after sexual activity (Chance, 2002). It requires 8 affect sex the involvement of the multi-disciplinary team Practical strategies to (MDT) and a degree of negotiation between 9 suggest to the patient management, staff and the resident. How to maintain or restore 10 intimacy Protecting codes of conduct with care plan A care plan reduces the risk of individual HCPs Sexual diversity: 11 what is normal? breaching professional codes of conduct (RCN, 2000). For example, if nursing staff teach patients Law and ethics 12 about masturbation, there must be a clearly documented rationale to demonstrate that FURTHER READING AND LINKS MS and contraception 13 there is no intent to perform an act of indecency Guidance for people in care homes. or abuse of position by the nurse involved www.rcn.org 14 Top tips and resources (RCN, 2009). Couldrick (2000) developed the
15 References 78 12 Law and Ethics MS, SEX, SEXUALITY and INTIMACY Sexual abuse A HCP who is assessing a patient should consider What is rape? Taking action MENU sexual abuse, especially if someone is vulnerable The sexual intercourse must be non-consensual. Suspicions of sexual abuse in a vulnerable adult or has cognitive difficulties. There is little written The definition applies to married couples as well should be discussed with social services. You Background to this guide 1 on sexual abuse in MS but there are resources as anal intercourse. must report your concerns. available on sexual abuse of disabled people, Penile penetration does not have to include A local social services website will have Defining ‘normal’ particularly those with learning difficulties. • 2 sexual function ejaculation. guidance on how to do this. You will need to give Definition of sexual abuse Lack of consent is sufficient–there does not details of: 3 MS-related sexual dysfunction • If a person is pressured to do something sexual need to be force, fear or fraud why you’re concerned against their will. It can range from unwanted • Why we should ask about Consent means that a man or woman the patient’s name, age, address 4 sexual health and wellbeing touching or photographing to rape. There can be • • understands the nature of the act (there who they live with a subtle line between two adults experimenting is some debate on what this means). It is • 5 How to take a sexual history if they are being helped by any other and one person feeling pressured into a sexual an important consideration for patients with • act which he or she feels is degrading or organisation Assessing someone with MS- cognitive problems. If in doubt, ask the patient 6 related sexual difficulties frightening. about the significance of sexual intercourse for • who you suspect may be abusing the patient. Supporting the partner Signs of sexual abuse them. 7 • Changes in behaviour such as fear and panic The Sexual Offences Act (2003) updated the law Medications that can attacks. Depression, low self-esteem regarding consent: ‘A person consents if she or 8 affect sex Refusing to see a particular person he agrees by choice, and has the freedom and • capacity to make that choice. The law does not Practical strategies to Developing an eating disorder 9 suggest to the patient • require the victim to have physically resisted in Drug or alcohol use How to maintain or restore • order to prove a lack of consent. 10 Nightmares intimacy • Sexual assasult Dreading medical examination Sexual diversity: • Sexual assault is defined in the 2003 Act as ‘an 11 what is normal? • Pregnancy act of physical, psychological and emotional Law and ethics Attempted suicide 12 • violation, in the form of a sexual act, which is inflicted on someone without consent. It can LINKS 13 MS and contraception involve forcing or manipulating someone to For information and support about sexual abuse witness or partcipate in any sexual acts.’ www.mycareinbirmingham.org.uk 14 Top tips and resources Click here for references 15 References 79 MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7 “It doesn’t matter how old you are, Medications that can 8 affect sex if you are considering having sex Practical strategies to 9 suggest to the patient you’ll need to consider contraception, How to maintain or restore 10 intimacy and that goes for men too.” Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References MS, SEX, SEXUALITY and 13 MS and Contraception INTIMACY Please check Multiple sclerosis is more common in women ! Patients who should not be summary of product than in men. Questions about fertility, family supplied oral contraception characteristics MENU planning and breast-feeding do arise as many for specific drug Background to this guide women given an MS diagnosis are of child- Any contraceptive Pill: 1 information bearing age. • Women with undiagnosed irregular vaginal Defining ‘normal’ Women on treatment for MS should use effective bleeding 2 sexual function birth control. There is some evidence to suggest Women with suspected or proven pregnancy • AUBAGIO – Teriflunomide 3 MS-related sexual dysfunction certain disease-modifying MS treatments are Women with hormone-dependant cancer • Aubagio, is known to be teratogenic. associated with a higher risk of miscarriage, Women with liver disease – Why we should ask about and the effects on a developing baby or on • Patients should not take Aubagio if they are 4 e.g. porphyria chronic active hepatitis sexual health and wellbeing fertility are unknown (see SPC for specific drug pregnant, think they maybe pregnant or are Women with recent molar pregnancy How to take a sexual history information). Aubagio is known to be harmful • breastfeeding. 5 Women who are known to be unreliable, to the developing baby (see special warning • Drug interactions opposite). Fingolimod also has potential for forgetful pill-takers Assessing someone with MS- Aubagio may increase exposure of 6 related sexual difficulties serious risk to the foetus. Women on Disease Combined oral contraceptive (COC) Pill: ethinylestradiol and levonorgestrel. Modifying Therapy should be advised to use Supporting the partner Women with past or present circulatory Therefore, if taking Aubagio, patients should 7 contraception. • disease – e.g. DVT, hypertension, MI, CVA, severe consider avoiding: Medications that can Many women on therapy go on to start families or combined risk factors for arterial disease 8 affect sex Combined oral contraceptive Pills at some point, so they should talk to a HCP (heavy smoking, age, obesity, uncontrolled Mercilon Practical strategies to about the options available. diabetes) • 9 suggest to the patient Microgynon 30 Women with crescendo or focal migraine, • • Cilest How to maintain or restore severe migraine requiring ergotamine – • 10 Ovysmen intimacy containing medication • Sexual diversity: Women with chronic systematic disease Contraceptive patch 11 what is normal? • Evra – e.g. SLE, Crohn’s • Law and ethics Women who have had major surgery Contraceptive vaginal ring 12 • Nuvaring requiring immobilisation, orthopaedic/vascular • Interuterine contraception 13 MS and contraception procedures (both before and after) Mirena IUS Progesterone-only Contraceptive (POP) Pill: • Emergency hormonal contraception 14 Top tips and resources • Women with a history of ectopic pregnancy Levonelle Women who need complete pregnancy • References • 15 protection 81 13 MS and contraception MS, SEX, SEXUALITY and INTIMACY KEY ! Please check Combined oral summary of product characteristics MENU contraceptive Pills Desogestrel/Ethinylestradiol for specific drug Background to this guide information 1 Mercilon Levonorgestrel/Ethinylestradiol Contraceptive Formulation Microgynon 30 Norgestimate/Ethinylestradiol Defining ‘normal’ Cilest Ethinylestradiol/Norethisterone 2 sexual function Ovysmen Mestranol/Norethisterone Norinyl-1 3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties Progestin–only Interuterine Can also be used Emergency Supporting the partner oral contraceptive contraceptive for emergency hormonal Levonorgestrel 7 Desogestrel Pills contraception contraception Ulipristal acetate Norethisterone IUD – Slimline TT 380 Copper Levonorgestrel Medications that can Mirena IUS 8 affect sex Cerazette Levonelle Micronor Ellaone Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal? Contraceptive Contraceptive Implant Injectable Ethinylestradiol/ Ethinylestradiol/ Medroxyprogesterone Law and ethics patch Etonogestrel vaginal ring Etonogestrel 12 Norelgestromin Implanon Depo-Provera acetate Evra Nuvaring 13 MS and contraception
14 Top tips and resources
15 References 82 13 MS and contraception MS, SEX, SEXUALITY and INTIMACY Long-acting reversible Copper IUD contraception (LARC) MENU LARCs are contraceptive methods that require Duration 5–10 years administration less than once per cycle or 99.7% Background to this guide Efficient 1 month: Reversible immediately Copper intrauterine devices 2 Defining ‘normal’ • sexual function • Progesterone–only intrauterine systems 3 MS-related sexual dysfunction • Progesterone–only injectable contraceptives Progesterone–only subdermal implants IUS Why we should ask about • 4 sexual health and wellbeing Effectiveness of barrier methods and oral contraceptive Pills depends on correct and Duration 5 years How to take a sexual history 99.7% 5 consistent use. Efficient LARC methods are more cost-effective than Reversible Assessing someone with MS- immediately 6 related sexual difficulties combined oral contraceptive Pills even at one year of use. Supporting the partner 7 IUD, IUS and implants are more cost-effective than the injectable contraceptives. 8 Medications that can Injectable affect sex All LARC methods are suitable for: Practical strategies to Nulliparous women Duration 9 suggest to the patient • 99.8% 12 weeks Women who are breastfeeding Efficient How to maintain or restore • 10 Women who have had an abortion intimacy • Reversible Women with a BMI >30 up to one year Sexual diversity: • 11 what is normal? • Women with HIV Women with diabetes 12 Law and ethics • • Women with migraine +/- aura Implant 13 MS and contraception • Women with contraindication to oestrogens ! Please check 99.9% Duration 3 years summary of product Top tips and resources Efficient characteristics 14 Reversible for specific drug Click here for references immediately information 15 References 83 MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1
Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7 “A 30-minute video explores why HCPs Medications that can 8 affect sex should talk to patients about sex and sexual Practical strategies to 9 suggest to the patient difficulties and how these discussions can How to maintain or restore 10 intimacy improve a person’s quality of life.” Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 84 MS, SEX, SEXUALITY and 14 Top tips when dealing with sexual difficulties INTIMACY Ways of asking MENU Background to this guide 1 ‘I realise this is a very personal subject...’
Defining ‘normal’ 2 sexual function 3 MS-related sexual dysfunction ‘Some people with MS find...’ Why we should ask about 4 sexual health and wellbeing 5 How to take a sexual history ‘You may not wish to discuss it at the Assessing someone with MS- 6 related sexual difficulties moment, but if you do you can contact...’ Supporting the partner 7
Medications that can 8 affect sex ‘Here is a booklet which you may find useful; Practical strategies to 9 suggest to the patient happy to discuss anything if you want to...’ How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal? ‘Encourage patients to have a sense 12 Law and ethics
13 MS and contraception of humour about it if possible.’
14 Top tips and resources ‘Sex doesn’t have to include orgasm.’
15 References 85 14 Top tips and resources MS, SEX, SEXUALITY and Resources INTIMACY These resources focus on different aspects of • Scarlet Road (2011) experiences. They travel to the US to visit a sex sex and disability. We cannot take responsibility Documentary which follows the extraordinary surrogate to help them get over their fear of sex MENU for the content of websites but we have tried work of Australian sex worker, Rachel Wotton. and help them explore their sexual selves. Background to this guide to identify some of the most informative or Impassioned about freedom of sexual 1 • Virgin School practical. expression and the rights of sex workers, she Available on Channel 4OD, this explores the Defining ‘normal’ specialises in a long over-looked clientèle - journey of a shy man who found it difficult to 2 sexual function Films people with disability. date and have sex with girls. He visits a sex The Sessions (2012) MS-related sexual dysfunction • Secretary (2002) surrogate school in the Netherlands where he 3 A man with an iron lung/polio, who wishes to • A young woman, recently released from a embarks on a journey of self-discovery. lose his virginity, contacts a professional sex Why we should ask about mental hospital, gets a job as a secretary to 4 surrogate with the help of his therapist and Desperate Virgins sexual health and wellbeing a demanding lawyer, where their employer- • priest. Available on Channel 4OD. employee relationship turns into a sexual, 5 How to take a sexual history • Inside I’m Dancing (2004) sadomasochistic one. Assessing someone with MS- The story of two young disabled men’s fight for 6 related sexual difficulties independent living and their confusion when Documentaries/TV shows Books they fall in love with the same carer. Channel 4, though they like to use sensational Sex and Disability Supporting the partner • 7 titles, have quite a lot of documentaries on sex – A Guide to Everyday Practice Untouchable (2011) • and on sex and disability. by Morgan Williams Medications that can The story of a quadriplegic and his carer, who 8 affect sex encourages him to pursue love. A true story, • The Sex Education Show • An intimate life. Sex, love and my journey the friendship between the two men develops Available on Channel 4OD as a surrogate partner 9 Practical strategies to suggest to the patient after the millionaire’s paragliding accident. The by Cheryl T. Cohen Greene with Lorna Garano. • Undateables How to maintain or restore Senegal-born ex-convict becomes his carer Available on Channel 4OD, showing the Dare 10 intimacy • despite stealing a Fabergé egg during his job journey of different individual’s with physical by Tracey Cox. Twenty couples explore fantasy. Sexual diversity: interview, and the pair are drawn together by and learning disabilities as they try to find a How some of them manage to safety enact their 11 what is normal? honesty and humour, fear and friendship. relationship. fantasies. Law and ethics (2012) 12 • Rust and Bone • 40-Year-Old Virgins • The Ultimate Guide to Sex and Disability Won the top prize at the London Film Festival. Available on Channel 4OD, this is not about by Miriam Kaufman: A self-help sex guide for A woman comes to the conclusion that no man 13 MS and contraception disability, but can be helpful watching to those people living with disabilities, chronic pain and will want her sexually after she loses both legs in who have not had much sexual experience. It illness. an accident — until she reconnects with the very 14 Top tips and resources shows the journey of a man and a woman who • Desires physical fighter played by Matthias Schoenaerts, have not had sex before because of negative by Penny Pepper: erotic stories involving people who treats her like any other woman. References with disabilities. 15 86 14 Top tips and resources MS, SEX, SEXUALITY and INTIMACY • The Body Image Workbook Booklets by MS organisations by Thomas Cash MS Trust Booklet: Sexuality and MS: MENU • Tactile Mind a guide for women by Lisa Murphy: by Nicki Ward Abel and Janice Sykes. Background to this guide 1 nude photographs for the blind, available from www.mstrust.org.uk www.tactilemindbook.com Defining ‘normal’ MS Trust Booklet: Sex and MS: 2 sexual function • The New Joy of Sex a guide for men by Susan Quilliam: written by a disability by Simon Webster. MS-related sexual dysfunction 3 informed author. www.mstrust.org.uk Becoming Orgasmic www.sexualadviceassociation.co.uk Why we should ask about • 4 by J Heiman: highly recommended for women sexual health and wellbeing MS Society Canada: by psychosexual therapists. Intimacy and Sexuality in MS 5 How to take a sexual history • The Sex Book www.mssociety.ca by Suzi Godson, Mel Agace, Robert Winston Assessing someone with MS- MS Society Essentials Guide No 12: 6 related sexual difficulties Cassell: explores the subject of sex, health and sexuality in a straightforward and adventurous Sex, Intimacy and relationships. Supporting the partner 7 way. www.mssociety.org.uk Enabling romance: A guide to love, sex and Medications that can • 8 affect sex relationships for people with disabilities (and the people who care about them) Practical strategies to 9 suggest to the patient by Ken Kroll and Erica Levy Klein: this book covers sexual stereotypes, building self-esteem, How to maintain or restore 10 intimacy reproduction, and sexuality for people with disabilities and their partners. Sexual diversity: 11 what is normal? • My Secret Garden by Nancy Friday: compilation of women’s Law and ethics 12 fantasies. How I Became a Human Being: A Disabled MS and contraception • 13 Man’s Quest for Independence by Mark O’Brien with Gillian Kendall 14 Top tips and resources
15 References 87 14 Top tips and resources MS, SEX, SEXUALITY and INTIMACY Support for people with disabilities Shada Dating sites for people with Sexual Health and Disability Alliance was formed Increasing amounts of support are available for disabilities in 2005 by the Outsiders Trust to bring together people with disabilities who want to be sexually MENU professionals working with disabled people active but may need support. LINKS Background to this guide who may be struggling to support them express 1 Online dating with disability www.theguardian.com Spokz People themselves sexually. It provides information on Defining ‘normal’ Non-profit arm of Spokz provides UK–wide sex and disability and runs meetings twice a year Specialist disabled dating 2 sexual function disability counselling, including sex and for disabled people and professionals. www.disabilitymatch.co.uk relationship support, by telephone, online and 3 MS-related sexual dysfunction www.shada.org.uk in some areas, through groups for people with Disabled dating websites physical disabilities, their partners and health Outsiders www.disableddatingclub.org Why we should ask about Outsiders offers support and expertise on 4 sexual health and wellbeing professionals. www.disableddatingchums.com disability, relationships and sexuality. It runs a www.spokzpeople.org.uk 5 How to take a sexual history private club for socially and physically disabled Enhance the UK people, where members offer each other peer Assessing someone with MS- Enhance the UK is a charity helping people with support and friendship and many find love and 6 related sexual difficulties a disability to play a full and active role in society. happiness. It organises lunches for members Supporting the partner It runs the Undressing Disability Campaign and around the country. It runs the Sex and Disability 7 The Love Lounge. It works with Brook to make Helpline, the Sexual Health and Disability Alliance 8 Medications that can sure young disabled people have access to the for health and social care professionals, a sexual affect sex same sex education and sexual health services, advocacy services and an online resource, the Practical strategies to advice and support as their peers. The Love Sexual Respect Tool Kit. Outsiders campaigns for 9 suggest to the patient Lounge is an online area to ask experts about sex disabled people to be accepted as sexual and How to maintain or restore and disability including advice, dating, meeting to receive good sex and disability education. 10 intimacy people, coming out as gay. Administration, projects and funding are handled Sexual diversity: www.enhancetheuk.org by the Outsiders Trust, a registered charity. 11 what is normal? www.outsiders.org.uk
12 Law and ethics The Site The Site is the online guide to life for 16-25 13 MS and contraception year-olds in the UK. It provides non-judgmental support and information on everything from sex and exam stress to debt and drugs. It is not 14 Top tips and resources specifically for people with disabilities but has a
References comprehensive section on sex and relationships. 15 www.thesite.org 88 14 Top tips and resources MS, SEX, Sex education SEXUALITY and INTIMACY Channel Four – Sexperience Professional development Videos and information on different aspects The Sexual Respect Toolkit Warrington Disability Partnership of sex and the human anatomy featuring real Warrington Disability Partnership (WDP) is MENU people and health professionals. Not specifically For GPS and other health and social care professionals to feel more comfortable initiating an independent, user led Social Enterprise Background to this guide aimed at people with disabilities. 1 discussions about sex. A 30-minute video committed to positive change and independent www.sexperienceuk.channel4.com explores why HCPs should talk to patients living. It runs a helpline about sex and disability Defining ‘normal’ Leonard Cheshire Disability and sex workshops for health, social care and 2 sexual function about sex and sexual difficulties and how these The charity’s project In Touch gave young discussions can improve a person’s quality of life. educational support professionals. 3 MS-related sexual dysfunction disabled people greater access to sexual health Video features Alex Cowan and sexuality from her www.disabilitypartnership.org.uk services and information. Many of the project perspective. Interview with a disabled man who The TLC Trust Why we should ask about resources are still available online including films has had support from a sex therapist. The Toolkit 4 sexual health and wellbeing The TLC Trust provides advice and support and training resources. is produced by the Outsiders Trust. to disabled men and women so they can find How to take a sexual history www.leonardcheshire.org 5 www.sexualrespect.com appropriate sexual and therapeutic services. Its Disability Horizons Institute of Psychosexual Medicine website lists sex workers, surrogates, striptease Assessing someone with MS- Disability Horizons magazine is the UK’s fastest artists, body workers and tantric teachers. It 6 related sexual difficulties A registered charity which provides education, growing disability lifestyle publication. Started training and research in psychosexual medicine. offers information and advice to professionals on Supporting the partner 7 by two disabled entrepreneurs in the summer of Trained doctors can help people with a wide disability and the law on booking sexual services. 2011, Disability Horizons has a rapidly growing range of sexual difficulties. Sex specialists are It promotes the sexual rights of disabled people Medications that can monthly web audience of 25,000 people. The and campaigns for laws that enable disabled 8 affect sex listed by area on the website. magazine’s content is sourced entirely from its www.ipm.org.uk people to hire sexual services. 9 Practical strategies to reader community. There is a well resourced www.tlc-trust.org.uk suggest to the patient section on relationships and sex. Shada Sexual Health and Disability Alliance was formed How to maintain or restore www.disabilityhorizons.com 10 intimacy in 2005 by the Outsiders Trust to bring together professionals working with disabled people Sexual diversity: 11 what is normal? who may be struggling to support them express themselves sexually. It provides information on 12 Law and ethics sex and disability and runs meetings twice a year for disabled people and professionals. 13 MS and contraception www.shada.org.uk
14 Top tips and resources
15 References 89 14 Top tips and resources MS, SEX, Counselling and therapy British Association for Sexual and Marital Therapy SEXUALITY and Axis Counselling INTIMACY The website covers many different topics Based in Shropshire, the company offers including sex and disability. Come as you are A worker-owned co-operative sex shop. Explains counselling for adult survivors of childhood www.basmt.org.uk MENU sexual, physical or emotional abuse. how to adapt sex toys and has a range of sex and RELATE Background to this guide www.axiscounselling.org.uk disability links. 1 Leading relationship counselling organisation www.comeasyouare.com South London and Maudsley Psychosexual offering specific help for people having problems Defining ‘normal’ Service Ann Summers 2 sexual function with sex. Focused on promoting mental health and well- Website, mail-order catalogue and chain of www.relate.org.uk stores throughout UK. 3 MS-related sexual dysfunction being, it has a psychosexual referral service. www.national.slam.nhs.uk Forums – share with peers 0845 456 6948 www.annsummers.com 4 Why we should ask about NHS sexual health website Apparelyzed sexual health and wellbeing Beecourse General advice on sexual health but nothing A spinal cord injury peer support website run by Website and mail-order catalogue offering a wide How to take a sexual history specifically related to sex and MS. individuals with spinal cord injuries. Patients can 5 range of sex aids. www.nhs.uk/Livewell/Sexualhealthtopics sign up to view sex and relationship posts. 01264 358853 Assessing someone with MS- http://www.apparelyzed.com 6 related sexual difficulties IAPT Service Directory - NHS services for www.beecourse.com depression and anxiety Youareable Love Honey Supporting the partner Online community of disabled people. 7 The Improving Access to Psychological Therapies Website and mail-order catalogue. (IAPT) programme supports the NHS in www.youreable.com 0800 915 6635 8 Medications that can affect sex implementing National Institute for Health and www.lovehoney.co.uk Clinical Excellence (NICE) guidelines for people Sex aids Practical strategies to Sh! 9 suffering from depression and anxiety. It lists Spokz suggest to the patient Website, mail-order catalogue and London services by region. A range of sex aids to help people with mobility, shops for women. How to maintain or restore www.iapt.nhs.uk dexterity and sensation issues. 10 intimacy 0845 868 9599 Includes masturbation aids for men and women, College of Sexual and Relationship www.sh-womenstore.com Sexual diversity: sex furniture and cushions, lubricants, massage 11 what is normal? Therapists Membership organisation for therapists oils and more. Spokz was set up to enhance Law and ethics 12 specialising in sexual and relationship issues. the lives of people with disabilities through Runs a directory that can be searched by name, lifestyle, leisure and sports products and services 13 MS and contraception area and postcode. aimed at enhancing physical, mental and sexual wellbeing. www.cosrt.org.uk Top tips and resources www.spokz.co.uk 14 Click here for references 15 References 90 14 Top tips and resources MS, SEX, Did you know? SEXUALITY and INTIMACY Cherry is the most popular flavour The average shelf-life of a latex condom is 2 years of edible underwear MENU 1% of adult females are able to achieve Background to this guide 1 orgasm solely through breast stimulation
Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about Men have 4−5 erections each night when they are asleep 4 sexual health and wellbeing
5 How to take a sexual history A woman’s nipples can swell up to 25% their normal size when aroused Assessing someone with MS- 6 related sexual difficulties The average bout of sexual intercourse Supporting the partner 7 burns 360 calories per hour The male orgasm lasts 5 seconds The female orgasm lasts 10−15 seconds or more Medications that can 8 affect sex The first vibrators were invented in 1869 9 Practical strategies to suggest to the patient as treatment for ‘hysteria’ How to maintain or restore 10 intimacy The left testicle usually hangs lower than
Sexual diversity: the right for right-handed men 11 what is normal?
Law and ethics 12 The clitoris is the only human organ whose single purpose is to provide pleasure 13 MS and contraception It takes a sperm 1 hour to swim 7 inches 14 Top tips and resources
15 References 91 MS, SEX, SEXUALITY and INTIMACY
MENU Background to this guide 1 15 References Defining ‘normal’ 2 sexual function
3 MS-related sexual dysfunction
Why we should ask about 4 sexual health and wellbeing
5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References MS, SEX, SEXUALITY and References INTIMACY 1 Background to this guide
MENU Background to this guide Girts, C. 1990. Nursing attitudes about sexuality 1 of spinal cord injury patients. Rehabilitation Nursing. 15, pp.205–206. 2 Defining ‘normal’ sexual function National Institute for Health and Care Excellence. 3 MS-related sexual dysfunction 2014. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. NICE Why we should ask about Guidelines on Multiple Sclerosis. 4 sexual health and wellbeing World Health Organization (WHO). 2002. Defining 5 How to take a sexual history sexual health – report of a technical consultation of sexual health. Geneva: WHO. Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 93 MS, SEX, SEXUALITY and References INTIMACY 2 Defining normal sexual function
MENU Background to this guide Basson, R. Sexual health of women with 1 disabilities. Canadian Medical Association Journal. 159, pp. 359–362. 2 Defining ‘normal’ sexual function Kaplan, H.S. 1979. Hypoactive sexual desire. Journal of Sex & Marital Therapy. 3, pp.3–9. 3 MS-related sexual dysfunction Maslow, A. H. 1954. Motivation and Personality. Why we should ask about New York: Harper and Row. 4 sexual health and wellbeing Masters, W. H and Johnson, V. E. 1966. Human How to take a sexual history 5 sexual response. Boston: Little, Brown & Co.
Assessing someone with MS- Meston, C.M. and Buss, D.M. 2007. Why humans 6 related sexual difficulties have sex. Archives of Sexual Behavior. 36, pp.477–
Supporting the partner 507. 7 O’Kane, P. and Jackson, G. 2001. Erectile Medications that can dysfunction: is there underlying obstructive 8 affect sex coronary artery disease? International Journal of Practical strategies to Clinical Practice. 55, pp. 219–220. 9 suggest to the patient World Health Organization (WHO). 2002. Defining How to maintain or restore sexual health-report of a technical consultation 10 intimacy on sexual health. Geneva: WHO. Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 94 MS, SEX, References SEXUALITY and INTIMACY 3 Overview of MS-related sexual dysfunction
MENU Background to this guide DeFrank, J.T. et al. 2007. Body image age Psychological Sciences and Social Sciences. 62, Price, B. 1990. Body image: nursing concepts and 1 dissatisfaction in cancer survivors. [Online]. pp.28–37. care. Hertfordshire: Prentice Hall International Oncology Nursing Forum. 34, pp.e36–e41, UK Ltd. Defining ‘normal’ Hulter, B.M. and Lundberg, P.O. 1995. Sexual 2 sexual function doi:10.1188/07.ONF.E41 function in women with advanced multiple Price, B. 2000. Altered body image: managing Demirkiran, M. et al. 2006. Multiple sclerosis sclerosis. Journal of Neurology, Neurosurgery and social encounters. International Journal of 3 MS-related sexual dysfunction patients with and without sexual dysfunction: Psychiatry. 5, pp.83–86. Palliative Care. 6, pp.179–185. Why we should ask about are there any differences? Multiple Sclerosis. 12, Liddiard, K. 2011. (S)exploring disability: Pfaffenberger, N. et al. 2011. Impaired body 4 sexual health and wellbeing pp.209–214. sexualities, intimacies, and disabilities image in patients with multiple sclerosis. Acta 5 How to take a sexual history El Miednay, Y. and Palmer, D. 2011. Sexual – a research summary. [Online.] http:// Neurology Scandinavica. 124, pp.165–170. dysfunction in rheumatoid arthritis: a hot but www.2.warwick.ac/uk/fac/soc/socilogy/pg/ Rutter, M. 2000. The impact of illness on sexuality. Assessing someone with MS- sensitive issue. British Journal of Nursing. 20, currentphds/phd 6 In: Wells, D. ed. Caring for sexuality in health and related sexual difficulties pp.1134–1137. Kessler, T.M., et al. 2009. Sexual dysfunction illness. London: Churchill Livingstone, pp.207– Supporting the partner 7 Foley, F. W. and Werner, M. 2000. Sexuality and in multiple sclerosis. Expert Neurotherapy. 9, 220. intimacy. In: Kalb, R. C. (Ed.). Multiple sclerosis: pp.341–50. Schilder, P. 1935. The image and appearance of Medications that can the questions you ask, the answers you need. 2nd 8 affect sex Maslow, A.H. 1954. Motivation and personality. the human body. Oxford: Kegan Paul. ed. New York: Desmos Vermonde Press. New York: Harper and Row. Ward-Abel, N. 2007. Sexuality & MS: a guide for 9 Practical strategies to suggest to the patient Kübler-Ross, E. 1969. On death and dying. New Masters, W.H. and Johnson, V.E. 1966. Human women. Letchworth Garden City: MS Trust. York: Simon and Schuster. How to maintain or restore sexual response. Boston: Little, Brown & Co. Ward-Abel, N. and Hall, J. 2012. Sexual 10 intimacy Gagliardi, B.A. 2003. The experience of sexuality Matthews, V. 2009. Sexual dysfunction in people dysfunction and multiple sclerosis: part 1. British for individuals living with multiple sclerosis. Sexual diversity: with long-term neurological conditions. Nursing Journal of Neuroscience Nursing. 8, pp.32–38. 11 what is normal? Journal of Clinical Nursing. 12, pp.571–578. Standard. 23, pp.48–56. World Health Organization (WHO). 2002. Defining 12 Law and ethics Girts, C. 1990. Nursing attitudes about sexuality McCabe, M.P. et al. 1996. The impact of multiple sexual health – report of a technical consultation of spinal cord injury patients. Rehabilitation sclerosis on sexuality and relationships. The on sexual health. Geneva: WHO. MS and contraception Nursing. 15, pp.205–206. 13 Journal of Sex Research. 33, 241–248. Zorzon, M. et al. 1999. Sexual dysfunction Gruenewald, T.L. et al. 2007. Feelings of McCabe, M.P. 2002. Relationship functioning and in multiple sclerosis: a case control study 1: Top tips and resources 14 usefulness to others, disability, and mortality in sexuality among people with multiple sclerosis. frequency and comparison of groups. Multiple older adults: The MacArthur study of successful Journal of Sexual Research. 39, pp.302–309. Sclerosis. 5, pp.418–427. 15 References aging. The Journals of Gerontology, Series B: 95 MS, SEX, SEXUALITY and References INTIMACY 4 Why we should ask about sexual health and wellbeing
MENU American Association of Retired Persons. 1999. Rubin, R. 2005. Communication about sexual Background to this guide 1 Sexuality study: modern maturity. Washington: problems in male patients with multiple NFO Research. sclerosis. Nursing Standard. 19, pp.33–37. 2 Defining ‘normal’ sexual function Bronner, G. et al. 2010. Female sexuality in World Association for Sexual Health. 2014. MS-related sexual dysfunction multiple sclerosis: the multidimensional nature Declaration of sexual rights (updated). Hong 3 of the problem and the intervention. Acta Kong: World Congress of Sexology. Neurologica Scandinavica. 121, pp.289–301. 4 Why we should ask about Zorzon, M. et al. 1999. Sexual dysfunction sexual health and wellbeing Demirkiran, M. et al. 2006. Multiple sclerosis in multiple sclerosis: a case control study 1: How to take a sexual history patients with and without sexual dysfunction: frequency and comparison of groups. Multiple 5 are there any differences? Multiple Sclerosis. 12, Sclerosis. 5, pp.418–427. Assessing someone with MS- pp.209–214. 6 related sexual difficulties Garrett, D. 2014. Psychosocial barriers to sexual Supporting the partner 7 intimacy for older people. British Journal of Nursing. 23, pp.327–331. Medications that can 8 affect sex Koch, T. 2002. Construction of sexuality for women living with multiple sclerosis. Journal of Practical strategies to 9 suggest to the patient Advanced Nursing. 39, pp.137–145.
How to maintain or restore McCabe, M.P. et al. 1996. The impact of multiple 10 intimacy sclerosis on sexuality and relationships. The
Sexual diversity: Journal of Sex Research. 33, pp.241–248. 11 what is normal? Nortvedt, M.W. et al. 2007. Prevalence of Law and ethics bladder, bowl and sexual problems among 12 multiple sclerosis patients two to five years after diagnosis. Multiple Sclerosis. 13, pp.106–112. 13 MS and contraception Royal College of Nursing. 2000. Sexuality and 14 Top tips and resources sexual health in nursing practice. London: Royal College of Nursing. 15 References 96 MS, SEX, References SEXUALITY and INTIMACY 5 How to take a sexual history
MENU Department of Health. 1997. The Caldicott Background to this guide 1 Committee: report on the review of patient- identifiable information. London: Department of Defining ‘normal’ 2 sexual function Health.
MS-related sexual dysfunction Nursing and Midwifery Council (NMC). 2008. The 3 Code–Standards of conduct, performance and ethics for nurses and midwives. London: NMC. 4 Why we should ask about sexual health and wellbeing Tomlinson, J.M. 2005. ABC of sexual health, 2nd How to take a sexual history ed. Oxford: Wiley-Blackwell. 5
Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 97 MS, SEX, SEXUALITY and References INTIMACY 6 Assessing someone with MS–related sexual difficulties
MENU Annon, J. 1976. The P-LI-SS-IT model: a proposed with a large US sample. Multiple Sclerosis. 19, Stuart, G.W. and Sundeen, S.L. 1979. Principles Background to this guide 1 conceptual scheme for behavioural treatment pp.1197–1203. and practice of psychiatric nursing. St.Louis: of sexual problems. Journal of Sex Education Foley, F.W. et al. 2000. Rehabilitation of intimacy Mosby CV. Cited in: Crouch, S. 1999. Sexual Health 2 Defining ‘normal’ sexual function Therapy. 2, pp.1–15. and sexual dysfunction in couples with multiple 1: sexuality and nurses’ role in sexual health. Burgess, M. 2002. Sexuality and pregnancy. In: sclerosis. Multiple Sclerosis. 7, pp.417–421. British Journal of Nursing. 8, pp.601–606. 3 MS-related sexual dysfunction Burgess, M. (Author). Multiple sclerosis: theory Foley, F.W. and Sanders, A. 1997a. Sexuality, Tan, G. et al. 2002. Psychosocial issues, sexuality and practice for nurses (new edition). London: and cancer. Sexuality and Disability. 20, pp.297– 4 Why we should ask about multiple sclerosis and women. MS Management. sexual health and wellbeing Whurr Publishers, pp.121–136. 4, pp.3–9. 318. How to take a sexual history Couldrick, L. et al. 2010. Proposing a new Taylor, B. and Davis, S. 2006. Using the extended 5 Foley, F.W. and Sanders, A. 1997b. Sexuality, sexual health model of practice for use by multiple sclerosis and men. MS Management. 4, PLISSIT Model to address sexuality in primary Assessing someone with MS- physical disability teams: The Recognition care. Nursing Standard. 21, pp.35–41. 6 pp.7–14. related sexual difficulties Model. International Journal of Therapy and Lewis, S. and Bor, R. 1994. Nurses’ knowledge Taylor, B. and Davis, S. 2007. The extended Supporting the partner Rehabilitation. 17, pp.290–299. 7 of and attitudes towards sexuality and the PLISSIT Model for addressing the sexual wellbeing Cohen, M.Z. and Hughes, M. 2004. BETTER Model relationship of these with nursing practice. of individuals with an acquired disability or Medications that can to assess sexuality. Clinical Journal of Oncology. chronic illness. Sexuality & Disability. 25, pp.135– 8 affect sex Journal of Advanced Nursing. 20, pp.251–259. 11, pp.671–675. 139. Maslow, A.H. 1954. Motivation and personality. 9 Practical strategies to suggest to the patient Davis, S. and Taylor, B. 2006. From PLISSIT to Ex- New York: Harper and Row, p.69. Cited in: Rosen, R.C. et al. 1997. International Index for PLISSIT. In: Davis, S. ed. Rehabilitation: the use of Erectile Function. Urology. 49, pp.822–830. How to maintain or restore Rungapadiachy, D.M. 1999. Interpersonal 10 intimacy theories and models in practice. London: Elsevier. communication and psychology for healthcare Rosen, R.C. et al. Female Sexual Function Index.
Sexual diversity: Derogatis, L. et al. 2008. The Female Sexual professionals: theory and practice (new edition). Journal of Sex and Marital Therapy. 26, pp.191– 11 what is normal? Distress Scale – revised. Journal of Sexual Oxford: Butterworth-Heinemann, p81. 208. Medicine. 2008, pp.357–364. Law and ethics Sanders, A.S. et al. 2000. The Multiple Sclerosis White, I. and Heath, H. 2005. Sexuality, intimacy 12 Dilts, R. 1991. Tools for dreamers: strategies Intimacy and Sexuality Questionnaire 19. and sexual health. In: Heath, H. and Watson, R. for creativity and the structure of innovation. Sexuality and Disability. 18, 1, pp.3–26. (eds.). Older people: assessment for health and 13 MS and contraception Cupertino, CA: Meta Publications. Springer, A.R. et al. 2001. Psychological social care. London: Age Concern. 14 Top tips and resources Foley, F.W. et al. 2013. The Multiple Sclerosis implications of multiple sclerosis. In: Halper, Woods, N. F. 1987. Towards a holistic perspective Intimacy and Sexuality Questionaire – re- J. ed. Advanced concepts in multiple sclerosis of human sexuality: alterations in sexual health References validation and development of a 15 item version nursing care (new edition). New York: Demos and nursing diagnosis. Holistic Nursing Practice. 1, 15 Medical Publishing, pp.213–237. pp. 1-11. 98 MS, SEX, SEXUALITY and References INTIMACY 7 Supporting the partner
MENU Background to this guide Bronner, G. et al. 2010. Female sexuality in 1 multiple sclerosis: the multidimensional nature of the problem and the intervention. Acta Defining ‘normal’ 2 sexual function Neurologica Scandinavica. 121, pp. 289–301. Kaufman, M. et al. 2003. The ultimate guide to sex 3 MS-related sexual dysfunction and disability. San Francisco: Cleis Press. Why we should ask about Kedde, H. et al. 2012. Sexual health problems and 4 sexual health and wellbeing associated help-seeking behaviour of people 5 How to take a sexual history with physical disabilities and chronic diseases. Journal of Sex and Marital Therapy. 38, pp.63–78. Assessing someone with MS- 6 related sexual difficulties Kessler, T.M. et al. 2009. Sexual dysfunction in multiple sclerosis. Expert Neurotherapy. 9, pp. Supporting the partner 7 341–350.
Medications that can Kreuter, M. et al. 1994. Sexual adjustment 8 affect sex after spinal cord injury focusing on partner experiences. Paraplegia. 32, pp.225–235. 9 Practical strategies to suggest to the patient McCabe, M.P. et al. 2003. Changes over time in How to maintain or restore sexual and relationship functioning of people 10 intimacy with multiple sclerosis. Journal of Sex and Marital Sexual diversity: Therapy. 29, pp.305–321. 11 what is normal? National Institute for Health and Care Excellence. 12 Law and ethics 2003. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. NICE 13 MS and contraception Guidelines on Multiple Sclerosis.
14 Top tips and resources
15 References 99 MS, SEX, SEXUALITY and References INTIMACY 8 Medications that can affect sex
MENU Background to this guide Ashton, A. K. et al. 2008. Serotonin reuptake 1 inhibitor-induced sexual dysfunction and its treatment: a large-scale retrospective study of Defining ‘normal’ 2 sexual function 596 psychiatric outpatients. Journal of Sex and Marital Therapy. 23, pp.165–175. 3 MS-related sexual dysfunction Dean, J. Are your medicines disrupting Why we should ask about your sex life? [Online.] www.netdoctor. 4 sexual health and wellbeing co.uk/sexandrelationships/medicinessex. htm#ixzz34hdOm2NB 5 How to take a sexual history
Assessing someone with MS- 6 related sexual difficulties
Supporting the partner 7
Medications that can 8 affect sex
Practical strategies to 9 suggest to the patient
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 100 MS, SEX, SEXUALITY and References INTIMACY 9 Practical strategies to suggest to the patient
MENU Background to this guide Appel, J. M. 2010. Sex rights for the disabled? 1 Journal of Medical Ethics. 36, 152–154.
Defining ‘normal’ Bronner, G. et al. 2010. Female sexuality in 2 sexual function multiple sclerosis: the multidimensional nature of the problem and the intervention. Acta 3 MS-related sexual dysfunction Neurologica Scandinavica. 121, pp.289–301. Why we should ask about Dasgupta, R. 2004. Efficacy of sildenafil in the 4 sexual health and wellbeing treatment of female sexual dysfunction due 5 How to take a sexual history to multiple sclerosis. Journal of Urology. 171, pp.1189–1193. Assessing someone with MS- 6 related sexual difficulties Fraser, C. et al. 2008. Correlates of sexual dysfunction in men and women with multiple Supporting the partner 7 sclerosis. Journal of Neuroscience Nursing. 40, pp.312–317. Medications that can 8 affect sex Koch, T. et al. 2002. Constructions of sexuality for women living with multiple sclerosis. Journal of Practical strategies to 9 suggest to the patient Advanced Nursing. 39, pp.137–145.
How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 101 MS, SEX, SEXUALITY and References INTIMACY 11 Sexual diversity: what is normal?
MENU Chivers, M.L. et al. 2004. A sex difference in the Background to this guide 1 specificity of sexual arousal. Psychological Science. 15, pp.736–744. Defining ‘normal’ 2 sexual function Cox, T. 2013. Dare: what happens when fantasies come true. London: Hodder. 3 MS-related sexual dysfunction Office of the Children’s Commissioner. 2011. Why we should ask about Office of the Children’s Commissioner inquiry into 4 sexual health and wellbeing child sexual exploitation in gangs and groups. London: Office of the Children’s Commissioner. 5 How to take a sexual history Royal College of Nursing. 2011. Older people Assessing someone with MS- in care homes: sex, sexuality and intimate 6 related sexual difficulties relationships. [Online]. http://www.rcn.org.uk/__ Supporting the partner 7 data/assets/pdf_file/0011/399323/004136.pdf Taylor, B. and Davis, S. 2007. The extended Medications that can 8 affect sex PLISSIT Model for addressing the sexual wellbeing of individuals with an acquired Practical strategies to 9 suggest to the patient disability or chronic illness. Sexuality & Disability. 25, pp.135–139. How to maintain or restore 10 intimacy
Sexual diversity: 11 what is normal?
12 Law and ethics
13 MS and contraception
14 Top tips and resources
15 References 102 MS, SEX, SEXUALITY and References INTIMACY 12 Law and Ethics
MENU How to have safe sex Mental Capacity Act : Elizabeth II. Royal College of Nursing. 2014. Principles Background to this guide Bright, A. et al. 2013. . Great Britain. 1 [Online]. http://www.wikihow.com/Have-Safer- 2005. London: The Stationery Office. of nursing. [Online]. http://www.rcn.org.uk/ Sex NHS Choices. 2014. Practical support, direct development/practice/principles 2 Defining ‘normal’ sexual function Chance, R. 2002. To love and be loved: sexuality payments. [Online]. http://www.nhs.uk/ The Telegraph. 2014. Investigation launched and people with physical disabilities. Journal of CarersDirect/guide/practicalsupport/Pages/ into prostitutes at a care home. [Online]. http:// 3 MS-related sexual dysfunction Psychology and Theology. 30, pp.195–208. Directpayments.aspx www.telegraph.co.uk/news/uknews/9834097/ Why we should ask about Couldrick, L. 2009. The Recognition Model: a Nursing and Midwifery Council. 2008. Clear sexual Investigation-launched-into-prostitutes-at-a- 4 sexual health and wellbeing new sexual health model of practice for use by boundaries. [Online]. http://www.bing.com/ care-home.html How to take a sexual history disability teams. Connecting disabled men and 5 [Online]. http://www.mstrust. search?q=NMC+Clear+sexual+Boundaries&form= TLC Trust. 2014. org.uk/professionals/information/wayahead/ IE10TR&src=IE10TR&pc=MALNJS women to responsible sex Assessing someone with MS- articles/13022009_04.jsp workers and professional sexual advocates. 6 related sexual difficulties Nursing and Midwifery Council. 2008. The Code: Department of Health. 1997. The Caldicott standards of conduct, performance and ethics [Online]. http://www.tlc-trust.org.uk/ Supporting the partner 7 Committee: report on the review of patient for nurses and midwives. [Online]. http://www. United Nations. 2008. Convention on the rights of identifiable information. London: Department of nmc-uk.org/Publications/Standards/The-code/ persons with disabilities. Medications that can Health. Introduction/ [Online]. http://www.un.org/disabilities/default. 8 affect sex Family Planning Association. 2013. Unprotected Rape Crisis England and Wales. 2014. Rape and asp?navid=12&pid=150 Practical strategies to 9 suggest to the patient nation: the financial and economic impacts sexual violence. [Online]. http://www.rapecrisis. World Health Organization. 2009. Promoting of restricted contraceptive and sexual health org.uk/rapeampsexualviolence2.php sexual and reproductive health for persons with How to maintain or restore 10 intimacy services. A report by development economics. Royal College of Nursing. 2011. Older people disabilities. [Online]. http://apps.who.int/iris/ handle/10665/4420 Sexual diversity: Gondim, F. A. and Thomas F. P. 2001. Episodic in care homes: sex, sexuality and intimate 11 what is normal? hyperlibidinism in multiple sclerosis. Multiple relationships. [Online]. http://www.rcn.org.uk/__ Sclerosis. 7, pp.67–70. data/assets/pdf_file/0011/399323/004136.pdf 12 Law and ethics Heath, H. 2011. Older people in care homes: sex, Royal College of Nursing. 2000. Sexuality and sexuality and intimate relationships. Nursing sexual health in nursing practice. [Online]. http:// 13 MS and contraception Older People. 23, pp.14–20. www.bing.com/search?q=+RCN+Sexulity+and+s BI-PAN-0367a exual+health+in+nursing+practice&qs=n&form= Date of Preparation: October 2014 14 Top tips and resources Great Britain. The Sexual Offences Act: Elizabeth II. 2003. London: The Stationery Office. QBRE&pq=rcn+sexulity+and+sexual+health+in+n ursing+practice&sc=0-0&sp=-1&sk= Published by Oyster Healthcare Communications Ltd, 2014 15 References 103