In this research, 137 women with MS in Poland were interviewed about their MS and completed a questionnaire about their sex life. The researchers found that two thirds of the participants (70%) reported sexual activity but very few (2.2%) had ever discussed their sexual concerns with a doctor. More than three quarters (83%) were affected in at least one aspect of sexual function as compared with less than half (43%) of the general population. 98% of study participants had never been asked about their sexuality in connection with their MS. The authors suggest that health professionals should pay more attention to sexual concerns so that people with MS are offered appropriate support.
Sexual activity is an important part of life for many people and contributes to their quality of life, the quality of their relationships and to self-esteem and self-image. It is known that MS can affect aspects of sexual function in both men and women. This study looked at how commonly different aspects of sexuality were affected in women with MS.
How this study was carried out
137 women diagnosed with MS in Poland took part in the study. All were over the age of 18 and had been diagnosed with MS for an average of 16 years (the range was between 3 and 38 years). The average EDSS score, a measure of how much MS affected them, was 5.2
The participants were interviewed about their MS, any other medical conditions including depression, the medications they were taking and their basic obstetric history such as the number of pregnancies.
Participants were asked whether their sexual life had stayed the same, got better or worsened since the onset of MS. They were also asked to describe their current relationship by choosing one of the following descriptions: definitely negative, rather negative, neutral, somewhat positive or definitely positive.
Participants completed a questionnaire, called the Female Sexual Function Questionnaire SFQ28, about their sexuality and underwent a neurological examination. Sexual activity was defined as an activity that may lead to sexual arousal or sexual enjoyment that occurred during the one month period before the interview. It included sexual intercourse, caressing and masturbation.
The SFQ28 has 28 questions and each one offers five or seven options to choose from such as very often, sometimes or not at all. Together, they cover seven different aspects of sexuality: desire, arousal (sensation), arousal (lubrication), arousal (cognitive), orgasm, pain, enjoyment and partner. You can read the questionnaire and see how it is scored here [PDF file]. Table 1. in the full text version of this publication shows how the authors used the scores to define three categories: high probability of normal sexual function, borderline sexual function and high probability of female sexual dysfunction.
What was found
They found that more than two thirds of the participants (70%) reported sexual activity but very few (3 out of 137) had ever discussed their sexual concerns with a doctor.
More than three quarters (83%) were affected in at least one aspect of sexual function. The most common were decreased desire (58%), decreased genital sensation (47%), decreased lubrication (48%), decreased subjective arousal (feeling less "turned on") (45%) and difficulties with orgasm (40%). Sexual pain was not a frequent complaint (6%).
Difficulties were less likely in women who reported that they were in positive relationships but more common in older women and those who had a history of depression.
What does it mean?
The authors concluded that MS has a high probability of affecting at least one aspect of female sexual function as more than three quarters (83%) of participants reported an affect. However, they point out that, in the general population, almost half of all women (43%) are affected.
98% of study participants had never been asked about their sexuality in connection with their MS. The authors suggest that health professionals should pay more attention to sexual concerns so that people with MS are offered appropriate support and advice.
More about sexuality and MS
Both men and women with MS may have sexual issues but many people are reluctant to discuss them due to embarrassment and shyness. Sometimes problems are minor and can be managed easily with general advice, at other times they can be more significant and require specialist input.
Sexual difficulties can be experienced at any time during the course of MS. They may be the result of other MS symptoms including bladder symptoms, pain , fatigue or spasticity. They can also be a side effect of medication so it can be worth having this reviewed.
Living with MS, especially when it is disabling, can have a significant effect on someone's self-esteem and self-image and this can affect their sexuality.
However, not every sexual problem is due to MS and many of the difficulties described by people with MS also occur in the general population, for example, anxiety or other medical conditions.
The MS Trust has two resources for people with MS and their partners. They can be read online, downloaded or ordered as books.
Sexuality and MS: a guide for women explains how MS can impact on both sexuality and intimacy and offers positive and practical solutions. It is illustrated with comments, opinions, experiences and tips from women with MS.
Sex and MS: a guide for men looks at how MS can affect the sex lives of men and how these issues can be managed.
Our quarterly newsletter, Open Door, has featured a number of articles related to sexuality including:
Research by topic areas...
Symptoms and symptom management
Durmus H, Kurtuncu M, Tuzun E, et al.
Comparative clinical characteristics of early- and adult-onset multiple sclerosis patients with seizures.
Acta Neurol Belg. 2013 May 22. [Epub ahead of print]
Karara AM, Macky TA, Sharawy MH.
Pattern of uveitis in an Egyptian population with multiple sclerosis: a hospital-based study.
Ophthalmic Res. 2013;49(1):25-9.
Disease modifying treatments
Alemtuzumab treatment of multiple sclerosis.
Semin Neurol. 2013 Feb;33(1):66-73.
Phillips JT, Fox RJ.
BG-12 in Multiple Sclerosis.
Semin Neurol. 2013 Feb;33(1):56-65.
Oh J, O'Connor PW.
Teriflunomide for the treatment of multiple sclerosis.
Semin Neurol. 2013 Feb;33(1):45-55.
Willis MA, Cohen JA., et al.
Fingolimod therapy for multiple sclerosis.
Semin Neurol. 2013 Feb;33(1):37-44.
Derfuss T, Kuhle J, Lindberg R, et al.
Natalizumab therapy for multiple sclerosis.
Semin Neurol. 2013 Feb;33(1):26-36.
The use of interferon Beta and glatiramer acetate in multiple sclerosis.
Semin Neurol. 2013 Feb;33(1):13-25.
Therapeutic decision making in a new drug era in multiple sclerosis.
Semin Neurol. 2013 Feb;33(1):5-12.
Kalincik T, Spelman T, Trojano M, et al.
Persistence on therapy and propensity matched outcome comparison of two subcutaneous interferon Beta 1a dosages for multiple sclerosis.
PLoS One. 2013 May 21;8(5):e63480.
Read the full text of this paper
Gobbi C, Zecca C, Linnebank M, et al.
Swiss analysis of multiple sclerosis: a multicenter, non-interventional, retrospective cohort study of disease-modifying therapies.
Eur Neurol. 2013 May 14;70(1):35-41. [Epub ahead of print]
Thomas S, Thomas PW, Kersten P, et al.
A pragmatic parallel arm multi-centre randomised controlled trial to assess the effectiveness and cost-effectiveness of a group-based fatigue management programme (FACETS) for people with multiple sclerosis.
J Neurol Neurosurg Psychiatry. 2013 May 22. [Epub ahead of print]
Read the full text of this paper
Garcia-Martin E, Rodriguez-Mena D, Herrero R, et al.
Neuro-ophthalmologic evaluation, quality of life, and functional disability in patients with MS.
Neurology. 2013 May 24. [Epub ahead of print]
Karampampa K, Gustavsson A, Thl van Munster E, et al.
Treatment experience, burden, and unmet needs (TRIBUNE) in multiple sclerosis study: the costs and utilities of MS patients in The Netherlands.
J Med Econ. 2013 May 21. [Epub ahead of print]
Benedict RH, Walton MK.
Evaluating cognitive outcome measures for MS clinical trials: what is a clinically meaningful change?
Mult Scler. 2012 Dec;18(12):1673-9.
James E, Dobson R, Kuhle J, et al.
The effect of vitamin D-related interventions on multiple sclerosis relapses: a meta-analysis.
Mult Scler. 2013 May 22. [Epub ahead of print]
Integrating the tools for an individualized prognosis in multiple sclerosis.
J Neurol Sci. 2013 May 18. doi:pii: S0022-510X(13)00201-3.10.1016/j.jns.2013.04.021. [Epub ahead of print]
Heesen C, Gaissmaier W, Nguyen F, et al.
Prognostic risk estimates of patients with multiple sclerosis and their physicians: comparison to an online analytical risk counseling tool. Prognostic risk estimates of patients with multiple sclerosis and their physicians: comparison to an online analytical risk counseling tool.
PLoS One. 2013 May 17;8(5):e59042.
Read the full text of this paper
Ferraro D, Simone AM, Bedin R, et al.
Cerebrospinal fluid oligoclonal IgM bands predict early conversion to clinically definite multiple sclerosis in patients with clinically isolated syndrome.
J Neuroimmunol. 2013 Apr 15;257(1-2):76-81.
Treatment of primary progressive multiple sclerosis.
Semin Neurol. 2013 Feb;33(1):74-8.