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Sexual dysfunction in MS

Nicki Ward, lecturer/practitioner
University of Central England, Birmingham

Open Door - August 2003 pages 8-9

cover of Sexuality and MS: a guide for women Sexuality and MS: a guide for women

Sexuality and MS: a guide for women

Studies suggest that up to 80% of women with MS experience sexual difficulties at some point in their lives. Yet sexual problems remain under-reported and under-diagnosed, despite the fact that many difficulties can be overcome.

In June 2007, the MS Trust published a new book for women to help them talk about their concerns. It explains how MS can impact on both sexuality and intimacy and offers positive and practical solutions.

To make the book as relevant as possible we asked women with MS to tell us how they felt about sexuality and intimacy. Their comments, opinions, experiences and tips for coping have helped to shape the book.

Read, order or download a copy of Sexuality and MS: a guide for women

Despite a significant number of people with MS experiencing sexual difficulties and the negative effect these can have on quality of life, it is a symptom that receives little attention. It is well known that many people will not discuss the sexual difficulties they are experiencing(1), generally due to embarrassment and shyness. Some people appear to believe that sexual problems are an inevitable consequence of MS and are yet another symptom that has to be endured(2).

It is also acknowledged that many healthcare professionals do not openly ask about sexual difficulties. This may be due to embarrassment or lack of confidence, lack of training or considering questioning too intrusive and sensitive an area for patients. Often, when a problem has been highlighted, there is a shortage of sexual therapists to whom to refer the individual(3).

MS specialist nurses strongly believe that addressing the topic of sexual difficulties is essential if we are to provide a high quality of care to people with MS. Whilst a complete solution is not always available, the MS nurse will be aware of a variety of strategies that may make all the difference. Often just providing an opportunity to discuss sexual problems can be perceived as a positive experience and may even be regarded as therapeutic(4). If the nurse cannot personally provide help, they can refer to a more appropriate service, such as a psychologist, sexual counsellor or urologist.

Not everyone with MS will experience sexual problems. As with all other MS symptoms, there is no common pattern or predictability. Sexual difficulties can be experienced at any time during the course of MS. The difficulties can be permanent or may have a relapsing remitting pattern. Sometimes problems are minor and can be managed easily with general advice, at other times they can be more significant and require specialist input.

The effect of MS on sexual function

Commonly reported sexual difficulties tend to be associated with loss of interest in or the ability to perform sexual intercourse. It is also well known that the living and coping with this complicated disease has a huge impact on intimacy and relationships.

The literature estimates that up to 85% of men with MS experience at least occasional difficulties with their sexual performance, with erectile dysfunction (difficulty in getting or maintaining an erection) being the most common symptom. Other sexual difficulties men report include:

  • decreased or absent sexual desire
  • altered sensation in the penis
  • decreased frequency/intensity of orgasms
  • premature ejaculation

There are fewer studies examining the sexual problems experienced by women with MS even though it is estimated that 56-74% will have sexual difficulties. The most common of these include:

  • decreased or absent sexual desire
  • altered genital sensation
  • decreased frequency/intensity of orgasms
  • decreased vaginal lubrication and clitoral engorgement
  • decreased vaginal muscle tone
  • pain on penetration

These problems are called Primary Sexual Problems - physical problems that occur as a result of demyelinating lesions in the spinal cord and brain.

Some people find they experience sexual difficulties as a result of other MS symptoms or prescribed medications. These are commonly termed Secondary Sexual Problems. The most likely symptoms to affect sexual performance include:

  • bladder or bowel dysfunction
  • fatigue
  • sensory changes
  • spasticity
  • tremor
  • pain

Psychological or emotional factors frequently affect a person's sexual response. Living with MS, especially when it is disabling, can produce an immeasurable effect on someone's self-esteem and self-image. Emotional reactions can be a fundamental issue for both the person with MS and their partner, and relationship difficulties are commonly reported.

Other psychological factors that may affect the sexual response include:

  • demoralisation and grief
  • clinical depression
  • social isolation
  • performance anxiety
  • role changes/conflict
  • cultural beliefs with inhibiting expectations and judgements

With the exception of certain types of erectile dysfunction, the sexual problems experienced by people with MS do not affect fertility. Men and women with MS need to take contraceptive measures when wanting to avoid pregnancy.

Management strategies for dealing with sexual problems

Before any management starts, it is essential that a thorough assessment takes place. Not every sexual problem is due to MS and many of the difficulties described by people with MS also occur in the general population. People experience sexual difficulties for a wide range of unrelated reasons eg: smoking, anxiety, sleepless nights and so on. Screening for all these issues and more is absolutely vital.

However, for the purpose of this article I will discuss some potential management options that may be initiated for people with MS related sexual difficulties.

Management of primary sexual problems in men

  • Erectile Dysfunction Clinics are generally attached to Urology departments and provide a comprehensive management approach to erection difficulties.
  • Oral medications (all have to be prescribed) such as Viagra. Others will soon be available, such as Cialis.
  • Medical management such as penile injections, suppositories or vacuum erection pumps.
  • Penile prosthesis.
  • Sexual aids such as vibrators or other devices.
  • Body mapping may help in finding other erogenous zones that produce pleasure. The couple each identify parts of their body and types of touch that feel good/stimulating and then communicate this information to their partner.
  • Counselling interventions to enhance intimacy and communication.

Management of primary sexual problems in women

  • A vibrator may compensate for loss of sensation. This can be used clitorally, vaginally or in the anal area.
  • Lubrication: use water based lubricants such as KY Jelly, Sensilube, Replens. All are available at chemists. Extra Virgin Olive Oil can also be used. Use the lubricant liberally.
  • Pelvic floor exercises may enhance orgasmic response.
  • Use of fantasy may also enhance orgasmic response.
  • Oral sex may be more likely to achieve an orgasm.
  • Body mapping to find alternatives to penetrative sexual intercourse.
  • Counselling.

Management of secondary sexual problems in men and women

This is beyond the scope of this article, but your MS nurse or neurologist will be able to help on an individual basis. One particular area of note is that some drugs prescribed to treat MS symptoms can produce side effects that affect the sexual response. You may need to discuss your medications with your GP, MS nurse or neurologist.

Management of psychological and emotional issues

Communication is critical to achieving a positive, enjoyable sexual relationship and feelings must be dealt with openly and honestly(5). It may be that talking together and discussing your feelings honestly is the key to reviving your sex life!

  • Share with each other what feels pleasurable or not. Experiment with different sexual positions and be creative in finding ways to give and receive pleasure.
  • Agree with your partner when and where it is most comfortable to talk about sex. You may want to use books, publications or videos to initiate discussion.
  • When discussing sexual or relationship issues try not to accuse, criticise or blame your partner. Use language such as "I feelâ?|" or "I would like..." instead of "you don't" language.
  • Expect that some sexual requests will be rejected. Remember this does not mean rejection of you as a person.
  • Do not think you are in any way unusual or abnormal if you do not have regular orgasms or penetrative sex. You can experience sexual pleasure and intimacy by other forms of touch such as cuddling, caressing or massaging.
  • On occasions there is a need for a couple to be referred for a more specialist form of counselling called psychosexual counselling. This involves assessment and management by a specialised sexual therapist. Your GP, MS nurse or neurologist may refer you for this.

The sexual difficulties experienced by people with MS can be frightening and distressing, negatively affecting quality of life and intimate relationships. Admittedly, there are not always complete solutions to these difficulties, but you may find that discussing them with your MS specialist nurse or other sensitive healthcare professionals can make all the difference. The problems may be totally unrelated to MS. If MS is the reason, there are management strategies available that could make all the difference.

You may feel too embarrassed to broach the subject; after all it is very personal and you may feel this is an area too private to share, but there may be an answer and if you don't ask you will never know.

References

  1. Royal College of Nursing. Sexuality and sexual health in nursing practice. London:RCN;2000.
  2. Lundberg PO, Hulter B. Female sexual dysfunction in multiple sclerosis: a review. Sexuality and Disability 1996;14(1):65-72.
  3. Zorzon M, et al. Sexual dysfunction in multiple sclerosis: a case control study. 1 Frequency and comparison of groups. Multiple Sclerosis 1999;5(6):418-427.
  4. McCabe MP, et al. The impact of multiple sclerosis on sexuality and relationships. The Journal of Sex Research 1996; 33(3):241-248.
  5. Schapiro RT. Sexuality. In Schapiro RT (ed) Managing the symptoms of multiple sclerosis. 4th ed. New York:Demos;2003.

Nicki Ward also provided a list of resources she finds useful when helping people manage sexual problems. There was no space to include these with the printed version of her article but they are reproduced here in full.

Sexual dysfunction in MS - further information

Useful reading

  • Sarah Litvinoff

    • Relate - better relationships: the practical ways to make your love last
    London: Vermillon; 2001
    ISBN 0091856701
    Readable and practical guide

  • Suzie Hayman

    • Relate - moving on: breaking up without breaking down
    London: Vermillon; 2001
    ISBN 0091856256
    Information and advice on how to cope in a positive manner with the stress caused by relationship break ups

  • Sarah Litvinoff

    • Relate - sex in loving relationships
    London: Vermillon; 2001
    ISBN 009185668X
    Provides the reader with step by step guide through the underlying problems which can arise in any relationship and inhibit a fulfilling sex life. Offers practical advice on sexual techniques and practical ways of overcoming sexual difficulties.

  • Susan Mumford

    • Sensual massage
    London: Hamyln; 1999
    ISBN 0600600122
    Illustrated guide of how to perform each step to give your partner maximum pleasure.

  • Catherine Kalamis

    • Women without sex: the truth about female sexual problems
    London: Self Help Direct; 2003
    ISBN 1900461307
    Covers the physical and emotional problems that can cause pain and lack of desire and explains how to overcome them and bring back your sexuality.
    For more information about the books mentioned or to buy them online, click on the title. If books are purchased through these links, the MS Trust will receive 5% of the price

Commercial catalogues

  • Ann Summers

    • A variety of sexual aids, underwear, etc
    PO Box 2030, Whyteleafe, Surrey, CR3 0ZS
    Tel: 0845 456 2320

  • Sh!

    • A variety of sexual aids aimed at women. Also has a few shops in London. Provides other relevant information.
    Sh!, 39 Coronet Street, London, N1 6HD.
    Tel: 020 7613 5458
    email: info@sh-womenstore.com

  • Nicesextoys

    • Sells a variety of sex toys.
    Tel: 0870 744 6314
    email: customerservices@mantricmovement.com

Useful organisations

  • Relate

    • The largest relationship counselling organisation in the UK. Doesn't cover Scotland (see below).

    Helpline: 0845 130 4010 Mon-Fri 9.30-4.30
    Offers free calls of up to 20 minutes. A counselling helpline, for which there is a fee, is also available.

    Also provides 126 local centres in England and Wales offering counselling for sexual and/or relationship difficulties - 0845 456 1310 for details. Web site is informative, also allows you to search for your nearest centre

  • Relationships Scotland

    • Provides relationship counselling via 14 local centres throughout Scotland
    18 York Place, Edinburgh, EH1 3EP
    Tel: 0131 558 9669

  • MS Society

    • Helpline: 0808 800 8000
    Has a sexual counselling service by phone. Only available on set days. Ring for information

  • British Association for Sexual and Relationship Therapy (BASRT)

    • Open to all. Provide phone numbers of qualified psychosexual counsellors. Cannot counsel over the phone. The web page has links to other sexological sites.
    PO Box 13686, London SW20 9ZH
    Tel: 020 8543 2707
    email: info@basrt.org.uk

  • FPA (formerly the Family Planning Association)

    • Information on sexual health, sex and relationships, and sexuality
    2-12 Pentonville Road, London N1 9FP
    Helpline: 0845 310 1334 Mon-Fri 9 - 7

  • Sexual Dysfunction Association (formerly the Impotence Association)

    • Information and advice for people affected by impotence (erectile dysfunction) and their partners
    Windmill Place Business Centre, 2-4 Windmill Lane, Southall, Middlesex UB2 4NJ
    Helpline: 0870 7743571
    email: info@sda.uk.net

  • London Lesbian and Gay Switchboard

    • Information on support, social and specialist services of relevance to lesbians, gay men and bisexuals. Nationwide, despite name.
    PO Box 7234, London N1 9QS
    Helpline: 020 7837 7324
    email: admin@llgs.org.uk

Other useful web pages

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