Sexual problems are a common complaint among people with MS. Studies estimate that 40 to 85 percent of women and 50 to 90 percent of men report some type of interference by MS in their sex lives. MS isn’t the only thing that can meddle with people’s sex lives—the non-MS population struggles, too. There isn’t good data but what there is suggests that, in the general US population, 43 percent of women and 31 percent of men also experience some type of sexual dysfunction. And, despite whatever uneasy feelings we might have (reinforced by popular culture and TV shows like Gray’s Anatomy) that everyone else is having more fun than we are, and having it more often, a 2017 study published in the Archives of Sexual Behavior reports that established couples are actually having less sex in 2014 than they were in the 1990s.
Sexual behavior is a very complicated topic. The bedroom is a place where multiple aspects of our lives intersect and a whole lot of physical, interpersonal, social, medical, financial, cultural, and emotional forces can and do shape what happens there. On a macro level, our sexual behavior is influenced by such forces as personal history, education, general health, sexual experiences, and religious upbringing. On a more mundane level it is influenced by such transient forces as what you had for dinner, whether you have a head cold, if you are annoyed with your partner, and who is asleep in the next room. Sexual desire is like a sensitive plant. Sexual activity typically declines as we age and our sexual problems tend to increase when we have medical or emotional health conditions, are physically inactive, or have school-aged children in the home. How we even define “sexual dysfunction” might also be shaped by values and culture. A 2008 study published in Obstetrics & Gynecology reported that, although the reported prevalence for female sexual problems in the USA was 43 percent, only 22 percent experienced personal distress about it. Or, as a patient once asked, “Why is it, if I am not very interested in having sex, I have a sexual dysfunction? If I am not very interested in playing golf do I have a golf dysfunction?”
Sexual dysfunction has a bigger impact on the mental health aspects of quality of life than serious physical disability.
Bottom line—our sexual functioning is a sensitive and charged topic, lots of things affect it, to varying degrees it causes problems for people, and if you have MS, the odds go up that it will create some sort of problem for you. According to a 2014 study on MS, sexual dysfunction has a bigger impact on the mental health aspects of quality of life than serious physical disability.
SEXUAL PROBLEMS AND MULTIPLE SCLEROSIS
Sexual problems in MS are generally lumped into three categories, based on what principally drives them. Primary sexual dysfunction is caused by damage to the central nervous system and comes from the disease itself. In men the most frequent symptoms of primary sexual dysfunction are erectile dysfunction and decreased desire. In women a lack of desire, sensory disturbances, and inadequate lubrication are the most commonly reported concerns.
The bedroom is a place where multiple aspects of our lives intersect and a whole lot of physical, interpersonal, social, medical, financial, cultural, and emotional forces can and do shape what happens there.
Secondary sexual dysfunction refers to problems that are caused by disease symptoms or treatments. Fatigue and spasticity are MS symptoms that often interfere with sexual activity. Antidepressants and some of the medications used to manage spasticity and pain are examples of MS treatments that can have potential sexual side effects. Tertiary dysfunction results from the psychological, emotional, financial, social and interpersonal consequences of living with a chronic disease. For example, people may experience changes in self-esteem, feel damaged because they have a disease, or struggle with anxiety and depression as they try to cope with the uncertainty and pressures brought on by the disease, and these can interfere with desire and performance.
WHO HAS PROBLEMS?
Can you predict who will have sexual problems from MS? Not really. According to one study, while the impact from the secondary and tertiary problems may increase with disease and disability progression, primary neurological problems can be present very early in the disease and across all disability ranges. Issues that contribute to sexual function often come from all three categories at the same time, which makes it an especially challenging problem to diagnose and treat. Sexual dysfunction can also be hard for sexual partners to believe or understand and is another one of those invisible MS symptoms that can and do occur even though “you look so well!”
People tend to develop more symptoms and more life complications the longer they have MS, and the impact of these can intensify the impact of a primary dysfunction and make it more dicult to manage. For example, if someone has decreased desire—caused by the disease itself—as well as increasing fatigue—a very common disease symptom—topped off by depression because they just can’t keep up—the whole probably will be bigger than the sum of the parts. Where do you start?
TREATING SEXUAL DYSFUNCTION
Sexual problems are complex and treating them is difficult because there are rarely simple fixes. It is made more difficult by the fact that there aren’t a lot of treatments for primary sexual dysfunction, especially for women.
Another factor that makes it di cult to manage is that it is frequently not discussed in healthcare settings. This is true across the board, whether you have MS or not: one study in the general population found that 90 percent of adults have never been asked about their sexual functioning in the doctor’s office. In a recent study among professionals who treat MS patients, only about half routinely screen for sexual problems; those who do not say they don’t have time, lack sufficient knowledge or skill to deal with the problem, or they wait for the patient to bring the topic up.
WHAT CAN YOU DO ABOUT IT?
Sexual problems are common problems. You are not abnormal or unusual if you have one. This is a topic that you can bring up with your healthcare provider. Realize, however, that your provider might not be your best resource in terms of comfort level, time, or skill, and if that’s the case, ask for a referral. “If you aren’t the best person for me to talk with, who is?”
Recognize that these problems are complex because so many different factors feed them. It rarely happens that there is a simple and quick solution. It o en takes a while to figure out what the problems actually are. It’s probably not hopeless, even though it sometimes feels that way, but it is complicated.
A multidisciplinary approach is likely to be the most helpful. If you are really struggling with a lot of tertiary issues like self-esteem problems secondary to the diagnosis, regular old psychotherapy might be helpful. Consultations with urologists, urogynecologists, and gynecologists can be helpful because bowel, bladder and sexual problems in MS o en complicate each other. Different kinds of rehab interventions—especially physical therapies— can help all kinds of problems, and in fact one study in MS found that more physically active people had fewer sexual problems. Working with your healthcare providers to figure out how to manage symptoms and medications is also important.
This issue of InforMS includes four interviews that explore different aspects of MS sexual problems and what to do about them.
