Sex and Multiple Sclerosis: Barriers Between Patients and Providers
Multiple sclerosis (MS) is a disease that causes damage to the body’s nerve fibers and can greatly impact one’s quality of life. With symptoms that affect day-to-day activities such as weak, numb, or tingling limbs, lack of coordination, tremors, impaired vision, fatigue, and dizziness, one possible symptom of MS – sexual dysfunction – is often overlooked.
Sometimes referred to as a “silent symptom” of MS, sexual dysfunction nonetheless affects up to 80-90% of MS patients. This raises the question: if the problem is so widespread, why aren’t people talking about it?
There are many barriers to communication between MS patients and their health care providers when it comes to the topic of sexual function. From the patient’s side, some of the most frequently cited reasons for not discussing their sexuality with their providers are the high focus on other symptoms, the presence of family members or friends in the room during a doctor’s visit, and simply not being asked about their sexuality. On the other end, providers may be hesitant to address the topic of sexuality because they don’t want to cross patients’ personal boundaries, they may not feel they have sufficient knowledge about sexuality and MS, or they do not want to raise the subject in front of the patient’s family or friends.
Recently, researchers at the Medical University of Vienna, Austria surveyed 93 patients with MS and 75 MS neurologists on the topic of communication about MS patients’ sexuality.
The results of the patient survey indicated that 76% feel sexuality is an important part of their lives, 83% believe that MS can negatively affect sexual function, and 29% reported a negative change in their sexual function since their MS diagnosis. Consistent with the “silent symptom” label, 81% of the patients said that they had never been asked about their sexual function by their neurologist, and 84% said that they would want their neurologist to ask them about their sexuality.
The MS neurologists (contacted through the Austrian Neurological Society) completed a different, provider-focused survey on the same general topic. According to the results of the provider survey, only 15% of the neurologists in the study said that they discuss sexuality with their patients, with the most frequent reason for not discussing sexuality being the concern about accidentally crossing a patient’s personal boundaries (35%). There was nevertheless a resounding desire for further education on the matter (76%) so that they would be more comfortable discussing sexuality with patients in the future.
Given the prevailing desire for more communication about sexuality among the patients in the study, the authors suggested that MS neurologists prioritize sexuality as a topic to learn more about. They also recommended that the providers inform their patients about the prevalence of sexual dysfunction in those with multiple sclerosis and initiate an open conversation about sexuality during the medical consultation.
For patients with MS, knowing that sexual function may be affected by the condition is an important starting point. They should also know that it is completely appropriate to bring up sexuality with their health care providers, particularly if it is a concern.
Altmann, P., 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, 18(4), 743-749. https://www.jsm.jsexmed.org/article/S1743-6095(21)00224-1/fulltext
Mayo Clinic. (2020, June 12). Multiple Sclerosis – Symptoms and Causes. https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269