For Teachers & Professionals

Multiple Sclerosis and Sexuality

Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system). 

The immune system attacks the myelin that covers nerve fibres and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves. Signs and symptoms vary widely among people affected and in some can present a period of remission. Among the most studied symptoms, physical disability, fatigue and depression are consistently found to affect health-related quality of life (HRQoL). Not surprisingly, pain is also reported to exert a major impact on HRQoL. Sexual dysfunction, bowel problems, spasticity, tremor and dizziness are less frequently studied, but it has been found that these symptoms can have a substantial effect on HRQoL. Common problems related to sexual functioning in this population include decreases in genital sensation, decreases in libido and vaginal lubrication, erectile dysfunction, and difficulties with orgasm. In terms of gender differences, the most prevalent problems for men include erectile dysfunction, loss of sexual confidence, orgasmic dysfunction, and genital numbness. For women, the most common presentations include orgasmic dysfunction, loss of libido, inadequate vaginal lubrication, and genital numbness. 

Although SD has been reported to affect up to 80–90% of pwMS, it frequently remains a silent symptom and there is currently no consensus on how to engage this topic in clinical routine. The most common barriers to talking about sexuality in MS are concerning an appropriate framework for discussion (presence of family and friends, inadequate time, lack of education) or conversation techniques (fear of talking about it for several reasons). 

The following ideas may help introduce this topic into routine care. 

1. Develop the knowledge 

Developing the knowledge about sexuality and how MS has an impact on it. Though the aetiology of sexual dysfunction in MS patients is still not entirely understood, a common conceptualization is that the nature of sexual changes in this disease can be attributed to primary, secondary, or tertiary causes. Primary causes include those due to physiological impairment: lesions in the cortex and spinal cord which can lead to numbness or paresthesias that directly affect the genitals, plus loss of libido and decreased vaginal lubrication in women; and difficulty initiating or maintaining an erection in men. Certain medications can also have an impact on primary causes. Secondary causes are likely associated with non-sexual physical changes, such as fatigue, spasticity, pain, and bladder and bowel dysfunction. Tertiary causes refer to psychosocial variables that can interfere with sexual performance or satisfaction, including changes in social roles, depression, demoralization, and interpersonal difficulties. This part includes learning the frequency of SD and being aware of why they are not talked about so frequently. 

2. Consider the patients’ wish to discuss their sexuality 

Listen to eventual questions or doubts from the patients and acknowledge the connection with their health-related quality of life. 

3. Routine consultations

During a routine consultation, doctors should inform their patients about associations between SD and MS and initiate an open conversation by asking open questions. Some examples may be “are you satisfied with your sexuality?” or “do you want to talk about your sexuality?”. In this context, referral should be considered. 

Another option would be to utilize the Multiple Sclerosis Intimacy and Sexuality Questionnaire 19 (MSISQ-19) which is a 19-item self-report measure that addresses the three dimensions of sexual dysfunction (i.e., primary, secondary, and tertiary causes). It takes only 2 minutes to complete the questionnaire and the topic may be taken up again in a follow-up inquiring whether the patient would like help with these symptoms. 

4. Pay attention to contextual factors 

The discussion should ideally be embedded in a framework individually tailored towards patients’ preferences regarding frequency and duration of discussing sexuality as well as the optional presence of the partner. 

Privacy must be guaranteed. 

REFERENCES 

AltmannP., Leithner K., Leutmezer F., Monschein T., Ponleitner M., Stattmann M., Rommer P. S., Zrzavy T., Zulehner G., Berek K., Berger T., Bsteh G., (2021). Sexuality and Multiple Sclerosis: Patient and Doctor Perspectives. The Journal of Sexual Medicine,Volume 18, Issue 4,, Pages 743-749, ISSN 1743-6095, https://doi.org/10.1016/j.jsxm.2021.01.178. 

Barin L., Salmen A., Disanto G., Babačić H., Calabrese P., Chan A., Kamm C. P. , Kesselring J., Kuhle J., Gobbi C., Pot C.,Puhan M. A. , von Wyl V., (2018). The disease burden of Multiple Sclerosis from the individual and population perspective: Which symptoms matter most?, Multiple Sclerosis and Related Disorders, Volume 25, Pages 112-121, ISSN 2211-0348, https://doi.org/10.1016/j.msard.2018.07.013. 

Sexual Dysfunction in MS Fact Sheet. (n.d.). Cleveland Clinic. Retrieved September 5, 2022, from https://my.clevelandclinic.org/departments/neurological/depts/multiple-sclerosis/ms-approac hes/sexual-dysfunction-ms