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Sexual dysfunction: dare we discuss it?

Sexual Dysfunction Dare We Discuss It?

As we all know, MS carries with it a wide range of symptoms, most of which receive frank and open discussion these days -- in the press, in doctors' offices, in support groups. Yet in this age of supposed sophistication, one symptom which, experts judge, can sometimes, in some way, affect 91% of men and 77% of women, still tends to get hush-hush treatment. Or is ignored -- even by professionals.

D.H. Hall (pseudonym), who has submitted a manuscript entitled MS and Sex: A Male MS Person's Point of View, has given us permission to excerpt from it. He writes:

"I am trying to point out that due to embarrassment, indifference, lack of knowledge or any combination of these, even doctors did not talk about or refer me to anyone about the taboo subject of sex. Everyone just ignored it. I say it's time we talk."

So O.K. Let's talk.

Neurologist Randall T. Schapiro, director of the Fairview MS Center in Minneapolis, explains that "a chronic illness such as MS can have a tremendous impact on sexuality. Sexual functioning -- the actual physiology and mechanics of sex -- may be directly affected by neurologic changes, or indirectly by the presence of symptoms such as spasticity, bowel and bladder problems, pain and fatigue..."

"Sexual excitement and response begin in the brain," he writes in Symptom Management in Multiple Sclerosis. "Electrical signals are transmitted from the brain areas involved via the spinal cord to the sexual organs or genitals, through nerves that exit near the bottom of the spinal cord. The pathways between the brain and the genitals are long and complex, and there is a possibility that demyelination may cause a 'short-circuiting' of them."

This particular "short circuit" can have a more devastating impact on you because sexual function is so deeply entwined with our sense of gender and self. When your car stops running, you may kick one of its tires; generally, however, you don't take it personally. But MS specialists tell us that all too many individuals with MS do take it very personally when things start to go wrong sexually. Rosalind Kalb, Ph.D., a counselor in the departments of neurology and rehabilitation medicine at Albert Einstein College of Medicine in New York City, says, "It's almost impossible to separate the physical from the emotional side of sexuality since anxiety about physical sexual problems compounds the problems themselves."

"But, it is very important to try to sort out the physiological from the emotional, if any progress is to be made in solving problems," stresses Nancy Holland, national director of the Society's Chapter and Community Services Division.

"A good place to start," she says, "is with a clearer idea of what some terms mean.

"Sexuality refers to the individual's integration of his or her sense of "maleness" or "femaleness." It embodies the totality of how you feel about your sexual identity, i.e., masculinity or femininity, in relation to and in interaction with others.

"Sexual function refers to physical activity, alone or with a partner, aimed at sexual satisfaction. And sexual satisfaction is usually obtained through sexual response.

"Sexual response occurs in two separate phases, similar in men and women. The first involves what is called vaso-congestion (vaso signifies blood vessels). In men, blood is carried to, and trapped within special parts of the penis, causing it to become erect. In women, swelling occurs in the vagina, resulting in vaginal lubrication and expansion of the vaginal walls. Orgasm is the second part of sexual response. In men, this consists of two phases, emission and ejaculation. In women, the orgasm involves only one process consisting of a similar series of muscle contractions.

"Sexual dysfunction is the inability to engage in sexual activity that results in a satisfactory sexual response."

As Dr. Schapiro noted there are a number of dysfunctional symptoms that can appears when MS prevents a message that originates in your brain from reaching your sexual organs.

In women this interrupted message can result in altered genital sensation, particularly a lowered awareness of stimulation. This, says Nancy Holland, is the most common complaint women report. They also report diminished orgasmic response, unpleasant sensations and diminished vaginal lubrication. All of these, Ms. Holland says, are called primary dysfunctions because they result directly from disease.

Indirectly, other MS symptoms can cause dysfunction. Spasticity, for instance, sometimes can create a problem. Adductor spasms, one of the ways spasticity manifests itself, can pull the thighs together and make separation difficult. MS fatigue can be a major barrier to sexual activity. So can urinary or bowel disorders which, as they can appear at any point during MS, can be a distressing impediment to intercourse.

Many women initially feel overwhelmed when they encounter these symptoms. But there is reason to be optimistic because there is help for the physiologic problems women may encounter:

Occasional painful sensations can be controlled by medication such as Elavil (amitriptylline).

Poor vaginal lubrication can be helped by the use of KY jelly. (Avoid Vaseline which is not water-soluble and, therefore, may contribute to the development of urinary tract infections.)

Adductor spasms can be curbed by taking Lioresal (baclofen), antispastic drug.

And fatigue, which can exact such a toll in sexual dysfunction, often can be countered with a central nervous system stimulant such as Cylert (pemoline).

The most common symptoms among men, according to Dr. Schapiro, are impaired genital sensation, delayed ejaculation, decreased force of ejaculation and/or inability to achieve and maintain an erection. The latter is often the single most traumatic problem a man must deal with, cutting into the very core of his being.

To excerpt again from Mr. Hall's manuscript:

"About 1984 I started noticing a change in my thinking, and in my ability to do anything about sex. I was on my way to being both mentally and physically impotent...I was deeply ashamed and embarrassed about being impotent. It related to my manhood -- not just to being macho or who can beat up who -- or being gung-ho on sports -- but about my being a male. It goes very deep mentally and is very hard to admit to yourself, let alone other people...You do not make small talk over the fence with a neighbor and say, 'Oh, did I tell you I was impotent?'..."

One of Mr. Hall's more bitter comments revolved around how long it took for anyone to suggest that there were remedies available.

There is a logical answer to this complaint. Part of the reason for such seeming delay is that many of the best aids for impotence are fairly recent in their development. With the growth of technology, a host of suggested alternatives are now being made, ranging from implanted prostheses to injection of drugs. They're discussed in detail in the box on this page.

Despite the technological advances, the experts maintain that the most far-reaching remedies lie within ourselves. That is because, as we have said before, the emotional and physical aspects of sexual functioning are so intertwined.

"This is where the concept of one's own sexuality becomes so important," says Nancy Holland. "Satisfaction can come in a variety of ways, if both partners can learn to feel good about themselves, work together and overcome personal and societal inhibitions about the whole subject."

"Technologies and medications are no doubt an important aid," says Michael Barrett, Ph.d., chairperson of the Sex Information and Education Council of Canada and author of the booklet, Sexuality and Multiple Sclerosis, "but they cannot be a quick technological fix for a weak or failing relationship."

In other words, the most important factors in surmounting sexual dysfunction can come from the quality of the relationship between sexual partners and the willingness to open up to new ideas.

Dr. Barrett maintains that society has placed an "inordinate emphasis on sexual intercourse as the only way to obtain sexual enjoyment...Men and women with MS, therefore, may have to re-educate themselves and their partners about what does and does not feel good sexually.

"For some, this may mean increased caressing, cuddling, massage or other forms of touching that provide the warmth and reassurance of physical intimacy. For others, it may involve oral sex...or the use of vibrators or other sex aids."

Some people may find such attitudes difficult to develop. One husband who has MS reported that he tried injections once to achieve an erection, but when the experiment failed, he didn't try again, mainly because his wife, "didn't feel comfortable about it." His wife admits a certain unease in even discussing sexual problems:

"Sometimes we engage in a kind of foreplay, and I usually climax, but my husband doesn't. I feel guilty about it -- here I am having a good time and he's not. So I actually feel kind of down when it's over."

This husband and wife aren't happy about their lack of sexual relations, but they have become resigned to the situation.

"This does not need to be the way the scenario spells out," says Ms. Holland. "There are other options."

"I was diagnosed 3 1/2 years ago," says Mrs. Albert (assumed name), who is 41, "and my main problem sexually is a lack of sensation. Achieving orgasm is specially difficult when I'm overly tired. I try to 'rest up' and we have our best successes when we just relax and enjoy each other's company. If things don't work one time, we just try again. Practically, we've found that extra foreplay helps. I feel fortunate to have a husband who is very patient."

Another couple -- let us call the wife Mrs. C -- says she and her husband had never had any real sexual problems in 19 years of marriage, until he was diagnosed with MS in 1980.

"I have a wonderful husband -- he is a very positive, 'up' person, and very much in charge of his disease -- in every way except sex. But because we have a need for closeness, we hold each other a lot, and experiment with different kinds of foreplay. It has helped. But it has been hard to talk about it...I think it may just have to do with the way a man feels about sex."

This brings us back to "core manhood" and the male reaction to impotence.

Pamela Boyle, a sexuality counselor in New York City who holds a masters degree in rehabilitation and frequently works with clients with disabilities, notes that "despite our modern flexibility in roles, there are still certain things that are expected of men vs. women, such as being the breadwinner, managing finances, running the household and caring for the children.

"Disease can change these roles, and when things don't work out well, self-image and self-respect can suffer. The fact is, though, the kind of person we are doesn't suddenly change just because we get MS. We may become angry or depressed, but a kind, wonderful person doesn't suddenly become a nasty so-and-so."

It is not always easy to perceive this, however. Often help is needed to understand

Ms. Boyle points out that, "with the right kind of support system -- doctor, MS Society, and family -- you can usually bounce back."

Mrs. Albert confirms this observation.

"One things that helped us a lot was an MS Society couples' discussion group where everyone got to know one another well and found they could talk about their sexual problems openly.

"Aside form the support I felt," Mrs. Albert says, "I got some good practical tips from my group, like looking my best or using a room without nursing equipment when we make love."

An easy exchange in a supportive atmosphere helps people with MS who are having sexual problems to be open to new, more experimental ways of expressing affection and experiencing sexual enjoyment. As Ms. Boyle explains, "if all of us -- disabled or not -- really examined our sexual practices, we would find that intercourse occupies only one small part of the time we spend in sexual activity."

In the same vein, Dr. Kalb says that "when someone with MS or the spouse of someone with MS complains about a lack of sex, I've found that he or she is also missing the closeness, holding and feeling of intimacy which ar so much a part of a good sexual relationship. In many cases I think it's possible for a counselor to help a couple communicate more effectively with each other and regain some of their feelings of closeness."

Interestingly enough, group discussion with peers turned out to be a better course of action for the Alberts than attempts to discuss their concerns only with their physician. Others have made the same observation.

"Discussing sexual problems with your physician may work if you set aside a specific appointment for it, but too often the subject is brought up at the end of a session devoted mainly to something else," says Dr. Barrett.

"People in the medical and allied health professions have not been trained or otherwise prepared adequately to deal with sexuality problems of the disabled," Boyle comments. "The result often is an attitude, intentional or not, that sexuality for the disabled should not be high priority."

"I found," one interviewee reported, "that my doctor thought this should be at the bottom of my list of worries. I felt reluctant to bring the topic up again."

But even when the best physician-patient relationship exists, counselors note that, contrary to what might be expected for such a private topic, many people seem most comfortable discussing sexual problems in a group setting. Here they can share their problems, feelings and support with others in similar circumstances. The setting is usually more relaxed and less formal, and with the presence of a trained professional, the participants can begin to be at home with some new ideas.

Whether you are thinking things through as a couple, with your doctor or working things out in a group, Dr. Schapiro stresses that "perhaps the single most helpful approach toward sexual difficulties is to focus on developing comfort with one's body, a goal that requires time and commitment. It is important to look for the positive qualities one has as a person, and to put effort into taking care of oneself through exercise, diet, dress, etc. Feeling good about oneself helps defeat the myth that one has to have a 'perfect body' to be sexy and sexually attractive."

And Carol Held, education director and service consultant in the Utah Chapter, concludes, "Although a lot more in-depth counseling is needed in this area, if a couple is basically close-knit, I'm convinced that both partners can have a reasonably satisfactory sexual relationship. If two people are really caring, they can work out just about anything."
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Title Annotation:includes related articles on help for impotence and books; multiple sclerosis
Author:Frames, Robin
Publication:Inside MS
Date:Sep 22, 1989
Previous Article:Is there insurance after MS?
Next Article:Brain tissue for research: the need is there.

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