Sexuality and intimate relationships are a significant part of life and well-being, with sexual satisfaction and sexual intimacy considered the main components of sexual health.1 For most people, sexuality and its expression are a natural and important component of self-concept, emotional well-being, and overall quality of life. Factors such as culture, religion and self-esteem contribute to how a person experiences sexuality.
While MS may alter functioning, the desire for a sexual identity, love, affection and intimacy remains. Given this, sexuality may be a source of significant frustration for many people with MS. Studies looking at the prevalence of sexual and relationship problems in people with MS indicate that 40-80% of women and 50-90% of men have sexual complaints or concerns.2
Although normal sexual function changes throughout a person’s lifespan, MS can affect an individual’s sexual experience in a variety of ways.3
Sexual changes in MS can best be characterised as primary, secondary or tertiary.4
Primary sexual dysfunction is as a consequence of direct neurological damage that affects sexual response; secondary dysfunction arises from symptoms of the disease itself, such as fatigue and pain, while tertiary impacts are related to psychological and social perceptions that can interfere with sexual feelings and sexual response.5
Depression, performance anxiety, changes in family roles, lowered self-esteem, body image concerns, loss of confidence can all contribute to tertiary sexual dysfunction.
The most frequently reported changes in men are a diminished capacity to attain or maintain an erection, and difficulty reaching orgasm. The most frequent changes that women report are a partial or total loss of libido (sexual desire), vaginal dryness/irritation, diminished orgasm, and uncomfortable sensory changes in the genitals.
A satisfying, intimate relationship rests on a much broader foundation than just sexual function and includes:
The sexual partnership, including intimacy, can be challenged by changes within a relationship, such as one person becoming the other’s caregiver.
Similarly, changes in employment status or role performance within the household are often associated with emotional adjustments that can temporarily interfere with sexual expression.7
The strain of coping with MS may challenge a couple’s efforts to communicate openly about their respective experiences and their changing needs for sexual expression and fulfilment.
As a nurse caring for people with MS, understanding how MS symptoms might affect intimacy and sexuality represents an important step towards being able to help people with MS overcome these barriers.
A useful tool available to the MS nurse when assessing sexual dysfunction in their patients is the Multiple Sclerosis Intimacy and Sexuality Questionnaire 19 (MSISQ-19).8
This is a questionnaire composed of 19 questions that ask the patient to rate how various symptoms of their MS have interfered with their sexual satisfaction or activity over the last six months.
Asking patients to complete this questionnaire gives a good idea of the extent of their problems (as the response is rated on a scale of 1–5) and the relative contribution of primary, secondary and tertiary sexual dysfunction.
Some ways that nurses and other healthcare professionals can help people with MS improve sexuality and intimacy in their relationships include:9
By introducing routine assessment of sexual dysfunction into standard clinical examinations, MS nurses can help to educate, support and build confidence in people with MS, thereby improving quality of life for them and their partners.
For more tips and additional information on the management of sexual dysfunction, please see courses 2, 4 and 5 in the MS Nurse PRO Foundation learning pathway:
1. Smith RL, Gallicchio L, Flaws JA. Factors affecting sexual activity in midlife women: results from the midlife health study. J Womens Health. 2017;26:103–8.
2. Marck CH, Jelinek PL, Weiland TJ, et al. Sexual function in multiple sclerosis and associations with demographic, disease and lifestyle characteristics: an international cross-sectional study. BMC Neurol. 2016;16:210.
3. Zamani M, Tavoli A, Khasti BY, et al. Sexual therapy for women with multiple sclerosis and its impact on quality of life. Iran J Psychiatry. 2017;12:58–65.
4. Foley FW and Werner MA. Sexuality and Intimacy. In: Kalb RC. Multiple Sclerosis: The Questions You Ask, The Answers You Need (ed 3). Desmos Vermonde Press: New York; 2000.
5. Celik D, Poyraz E, Bingöl A, et al. Sexual dysfunction in multiple sclerosis: Gender differences. J Neurol Sci. 2013; 324:17–20.
6. Valvano AK, Rollock MJ, Hudson WH, et al. Sexual communication, sexual satisfaction, and relationship quality in people with multiple sclerosis. Rehabil Psychol. 2018;63:267.
7. Drulovic J, Kisic-Tepavcevic D, Pekmezovic T. Epidemiology, diagnosis and management of sexual dysfunction in multiple sclerosis. Acta Neurol. Belg. 2020;120:791–797.
8. Sorgen-Sanders A, LaRocca NG, Zemon V. The multiple sclerosis intimacy and sexuality questionnaire-19 (MSISQ-19). Sex Disabil. 2000;18:3–24.
9. Tesla D, Mrkonjić R, Badrov T. Basic human needs in patients with multiple sclerosis: intimacy and sexuality. Cent Eur J Nurs Midw. 2020;11:78–84.
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