(Real Living with Multiple Sclerosis)
Siebert, Lenora Aug 22, 2001
MULTIPLE SCLEROSIS (MS) can cause changes in sexual feelings, directly and indirectly, throughout our life span. Persons with MS that have even a small degree of disability may experience occasional sexual difficulty. MS can interfere with movement, erection, lubrication, and orgasm. Yet, many individuals have no sexual difficulties at all.
For both sexes, sensory loss can affect, alter, or diminish sexual sensations, which often leads to decreased interest in sex. Spasticity, weakness, and lack of bladder control can also interfere with sexual expression. All of us, whether we have MS or not, have bad days when everything that can go wrong will go wrong. On these occasions, sex can be more irritating than pleasurable. Fatigue and neurologic changes can make having sex mundane or even painful.
Partners sometimes misinterpret reluctance to have sex as a personal rebuff. This can result in changes in their own responsiveness. If communication is open between a husband and wife, they'll be able to share their changing sexual and intimacy needs.
Changes in our sexual patterns and roles can present significant challenges to intimacy and sexuality. A caregiving husband may think his wife is too fragile or ill to engage in even the gentlest sexual act. Therefore, he hesitates to express his own sexual needs in fear of hurting her. A caregiving wife may feel she is making demands on her spouse that he cannot fulfill, causing him to feel guilty and causing her to withdraw.
I feel guilty because I want our married life to roll back to what it was before MS came into the picture. I miss my lover. I long to have my needs met. We all need attention, love, and help with our everyday life. But I accept that I am just human. Guilt doesn't belong in a caregiver's vocabulary. It helps no one.
The physical, cognitive, and emotional changes associated with MS can strain the intimacy between two people. A spouse may feel as though he or she is trying to relate to a person who is somehow different or unfamiliar. Similarly, the role changes that are required in the face of MS, such as one partner becoming the other's caregiver, can drastically alter the mutual feelings and expectations within a relationship.
All these changes can lead to an increased sense of personal isolation within a relationship. Each partner may feel less able to understand the other's experience, feelings, and needs. In turn, a diminishing capacity to understand and work through these differences can create greater isolation and misunderstanding. Mutual resentment can begin to fester and grow.
The sexiest part of our body is our mind. Sex doesn't always involve intimacy, but neither does intimacy always mean having sex. When you have neither, it's time for a change. One way to start these changes in your sex life is to set aside a special time for pillow talk. Sharing the pleasure of intimacy is the most satisfying experience possible. Cuddling and holding each other for the pure pleasure of it can be the most intensely gratifying act in a marriage. Being able to communicate when things go awry is a positive step. Finding ways to strengthen your relationship physically, emotionally, and spiritually is a challenge.
All of us are sexual, yet it isn't always necessary to express our sexuality through intercourse. Sex isn't the only way to experience love and caring from our spouses. You can give love to your spouse by holding, caressing, hugging, and touching.
Seldom will a physician bring up the subject of sex; it's usually up to the couple. If you are reluctant to do this and would feel embarrassed, write down your questions and hand them to your primary physician on your next visit. Enjoy your body. Focus on the pleasure you can give and receive, rather than on what used to be.
Sexual problems are often
experienced by people with MS, but they are also very common in the general
population. Sexual arousal begins in the central nervous system, as the brain
sends messages to the sexual organs along nerves running through the spinal
cord. If MS damages these nerve pathways, sexual response can be directly
affected. Sexual problems also stem from MS symptoms such as fatigue or
spasticity. Psychological factors contribute to sexual problems in MS, as
In a recent study, 63% of people
with MS reported their sexual activity had declined since their diagnosis. Other
surveys of persons with MS suggest that as many as 91% of men and 72% of women
may be affected by sexual problems. Ignoring these problems can lead to major
losses in quality of life. Yet both individuals and health-care professionals
are often slow to bring up the subject.
reduced sensation in the vaginal/clitoral area, or
uncomfortably increased sensation
trouble reaching orgasm
loss of libido
difficulty or inability to get or maintain an
erection (by far the most common problem)
reduced sensation in the penis
difficulty or inability to ejaculate
loss of libido
Spasticity can cause cramping or uncontrollable
spasms in the legs pulling them together or making them difficult to
Pain can interfere with pleasure.
Embarrassment can be caused by bowel or bladder
Weakness and fatigue interfere with libido and
There are a variety of therapies to
treat sexual dysfunction. For men, erectile dysfunction may be addressed through
use of implants, inflatable devices, injectable medications such as papaverine
and phentolamine that increase blood flow in the penis, the MUSE®
system which involves inserting a small suppository into the penis, and use of
the oral drug Viagra® (sildenafil).
For women, vaginal dryness can be
relieved by using liquid or jellied, water soluble personal lubricants that can
be purchased over-the-counter. It is a common mistake to use too little of these
products. Specialists advise using them generously. Petroleum jelly
(Vaseline®) should not be used because it is not water soluble and
may cause infection.
Both men and women with MS and their
partners often benefit from instruction in alternative means of sexual
stimulation, such as the use of a vibrator, to overcome slow arousal and
impaired sensation. Abnormal
sensations and spasms can often be controlled through use of medication.
Techniques such as intermittent catheterization or medication can control
urinary leakage during intercourse.
MS does not affect the basic fertility of either men or women, although sexual problems may interfere with the ability of a man with MS to father a baby. “Dry orgasms” which impair fertility have been reported by men with MS in several studies. These problems have been successfully treated with medication or through techniques to harvest sperm for insemination. Men who are concerned about fertility issues should consult a urologist experienced in this area.
Women and men with MS are also advised that they must make the same decisions and take the same precautions regarding birth control and sexually transmitted diseases as anyone else.
Psychological factors relating to changes in sexual function are quite complex. They may involve loss of self-esteem, depression, anxiety, anger, and/or the stress of living with a chronic illness. Counseling by a mental health professional or trained sexual therapist can address both physiologic and psychological issues. This therapy should involve both partners.
By Jill Stein
Special to DG News
DENVER, CO -- April 19, 2002 -- New data suggest that the efficacy and tolerability of Viagra (sildenafil) in men with erectile dysfunction and multiple sclerosis is sustained over periods ranging from 24 to 48 weeks.
The results were announced here yesterday at the 54th Annual Meeting of the American Academy of Neurology (AAN) by Dr. James R. Miller, with the New York Neurological Institute, in New York City.
While sildenafil has previously been shown to improve erectile dysfunction (ED) in men with multiple sclerosis (MS) in a placebo-controlled trial, the present study reviews the efficacy and safety of the drug during the 24- to 48-week open-label extension phase of this trial. A total of 100 patients were randomized to sildenafil 50 mg and 106 to placebo in the first phase of the study. Of these, 180 patients completed the open-label extension phase.
The double-blind end point efficacy assessment served as baseline for the open-label extension phase. At the final open-label extension visit, a limited assessment of efficacy was made based on responses to three questions on the Global Efficacy Assessment Questionnaire (GEQ).
GEQ1: "Compared to having no treatment at all for your erection problem, had the medication you have been taking over the past four weeks improved your erections?"
GEQ2: "If yes, has the improvement in your erections allowed you to engage in satisfactory sexual activity?"
GEQ3: "When you took a dose of the study drug and had sexual stimulation, how often did you get an erection that allowed you to engage in satisfactory sexual activity?"
At the end of the open-label extension phase, the efficacy of sildenafil was sustained, with 95 percent of men reporting improved erections. Of those patients, 95 percent also reported improved sexual activity. Patients who received placebo during the double-blind phase showed a nearly fourfold increase in improved erections at the end of the open-label extension (97 percent versus 26 percent).
Men from both the double-blind placebo group (96 percent vs. 73 percent) and the sildenafil groups reported improvement in successful sexual activity (94 percent vs. 89 percent). Since only patients who responded "yes" to GEQ1 were included, however, fewer patients from the double-blind placebo group (n=26) than from the sildenafil group (n=81) answered the GEQ2.
The frequency of erections (GEQ3) more than doubled in the double-blind placebo patients (mean score 4.35 vs. 1.98), and was similar to the frequency observed in men who received double-blind sildenafil (mean score 4.26).
The study found no increase in the incidence of adverse events, or any specific type of adverse event, emergent with the extended use of sildenafil.
Sexual dysfunction, and especially ED, is a common problem for men with MS. Several reports have shown the incidence of ED in men with MS to be 50 percent to 75 percent.
The trial was supported by Pfizer, Inc.