Barbara (Bobbie) Severson, MSN, MSCN, ARNP
Swedish MS Center, Seattle, WA
Multiple sclerosis (MS) is a demyelinating disease which affects the central nervous system causing a variety of problems such as fatigue, spasticity, muscle weakness, imbalance, altered bladder and bowel control, and sexual dysfunction. Sexual dysfunction is a common symptom in MS and affects more than 75% of people living with the disease; a frequency greater than that reported in other chronic diseases.
Sexual dysfunction in MS has many causes. Primary causes may be the direct result of demyelinating lesions in the CNS (central nervous system) that can affect sexual response and sexual feelings. Primary sexual dysfunction includes decreased or loss in libido, painful or uncomfortable genital sensations (burning, tingling, numbness), and /or altered orgasmic response in both women and men. Women may experience decreased vaginal lubrication and dryness, inorgasmia, and low sex drive. Men may experience difficulty achieving and/or maintaining an erection (erectile dysfunction or ED), and diminished frequency of ejaculation.
Secondary sexual dysfunction problems arise as a consequence of disability caused by MS. Examples of secondary symptoms include poor bladder and bowel control, fatigue, muscle weakness, spasticity, immobility, tremor, cognitive impairment, and sensory problems. Secondary sexual dysfunction can also be a result of non MS health conditions such as hypertension, diabetes, depression, hypercholesterolemia, obesity, and smoking. In addition, medications that are used for MS (spasticity, urinary frequency, sensory pain) and non MS diseases (hypertension, diabetes, depression) can further contribute to secondary sexual dysfunction.
Tertiary sexual dysfunction in MS occurs as a result of disability related psychological, social and cultural issues that affect sexual response. These variables can include anxiety, low self esteem, altered marital and family roles, changes in body image, and fear of rejection by one’s partner.
Although sexual dysfunction is a prevalent problem, in the MS population, and can be caused by a host of variables, for both men and women, it is a topic that is frequently overlooked and discussed, and often left untreated. All MS symptoms, regardless of type, deserve healthcare providers’ attention if our goal is to enhance the health and well-being of all patients we serve.
Importance of Addressing Sexual Dysfunction
Sexual function is a vital element to a person’s health and well-being. People living with MS are sexual beings, yet health care providers often ignore or forget this part of a patient’s identity. This avoidance to address and treat sexual dysfunction profoundly impacts the quality of life for all people living with MS; not only the patient but also their partner.
It is important to address and treat sexual dysfunction, in the MS population, because sexual dysfunction is a prevalent problem. In reports of men with MS, sexual dysfunction may range from 23% up to 91 %. Women may report SD up to 85% of the time. Eighty percent of the sexual dysfunction problems in men consist of erectile dysfunction. In women, up to 72% report decreased libido and hyposexuality.
Sexual dysfunction not only adversely impacts quality of life but it contributes to other problems as well. These problems can consist of:
Relationship conflict: Marital problems noted in 71% patients with SD
Depression, embarrassment, isolation, despair
Avoidance and fear of intimate relationships and sexual encounters
Recognition of sexual dysfunction can help patients
Understand the problem
Lead to treatment
Build healthier relationships
Enhance self esteem
Promote patient-health care provider relationships
Improve quality of life
Sexual Dysfunction Research
Sexual dysfunction research and management in MS is minimal. The topic is under-recognized and under-treated. Unfortunately, most of the sexual dysfunction medical literature is focused on the spinal cord injury population and not on MS or others living with chronic disease.
Health care providers often omit the assessment of sexual function when taking a patient history because of several reasons. Limitations to dialogue between MS health care providers and their patients can occur because clinicians: (a) feel embarrassed and/or awkward about bringing up the issue; (b) may not have the knowledge/training to comfortably talk about sexual dysfunction; (c) may be biased in thinking the patient is too disabled or too old to engage in sex; (d) may have time constraints and believe other issues take precedence over sexual dysfunction concerns; (e) may believe the issue is outside their scope of practice or role; (f) may believe the topic is too intrusive a subject to discuss; and (g) may believe the patients have limited medical coverage and therefore could not afford treatment.
Patients, on the other hand, may be reluctant to initiate sexual dysfunction dialogue because of embarrassment, and beliefs the problem is untreatable, it is a normal part of aging, the provider does not want to hear about the problem, the provider is too busy, or the provider may not think the subject is important.
As a consequence of poor communication and misconceptions, in most MS clinical settings, the topic of sexual dysfunction is rarely addressed by the healthcare team despite its prevalence in the MS population.
Sexual Dysfunction Management
The first step in management of sexual dysfunction is to acknowledge that sexual dysfunction is a significant health care problem that most MS patients face at some point in their lives. It is also important to realize that sexual dysfunction is a subject that often goes under-recognized and under-treated.
The second step is to educate and train all members of the MS health care team about sexual dysfunction and teach them how to discuss the subject with patients. For instance, physical therapists can address positioning techniques that enhance sexual comfort. Clinical psychologists can work with individuals or couples in promoting sexually sensitive communication to enhance sexual performance. And occupational therapists can instruct patients in the use of sexual devices that can enhance sexual pleasure.
Because patients are reluctant to reveal they are having sexual difficulty, it is the responsibility of all healthcare team members to routinely ask about sexual functioning. Asking about the problem acknowledges that the topic is important and it opens the door to therapeutic communication and problem resolution.
Discussion of sexual function can begin at a patient’s initial clinic visit during the review of medical and surgical history which can also include sexual, personal, social, and medication history. The subject might also be incorporated into future visits, as appropriate. For example, if a patient presents with bowel, bladder, fatigue, or spasticity problems, the provider can mention these problems may contribute to sexual dysfunction and if a problem occurred now or in the future, treatments are available to enhance sexual function. The goal is to normalize the subject and let the patient know that sexual function/dysfunction is a topic worthy of discussion. Sexual function questionnaires can also elicit further information if desired.
Additional sexual dysfunction treatments may include: medical sex education materials, oral medications (Viagra-sildenafil; , Levitra-vardenafil; Cialis-tadalafil), topical hormones, sex therapy (body mapping other than genitals), counseling, provision of sexual devices (vibrators, lubricants,) intracorporeal injection of medication into the penis, noninvasive physical treatments for erectile dysfunction (vacuum tumescence penis pumps), surgery for erectile dysfunction ( implantation of inflatable or semi-rigid rods), plus other treatment interventions. Women Veterans are encouraged to contact VA Women Veterans Health Centers for more information, resources, and services.
Sexual dysfunction is a very prevalent problem in the MS population. It is a complex and dynamic interaction of physical, psychological, social, cognitive, and practical factors (financial). The patient, healthcare team, and healthcare community must work together to reduce sexual dysfunction if we hope to improve the quality of life for all people living with MS.
Date Posted:January 2008
Updated: June 2010
Updated: April 2015