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Possible Effects Of Multiple Sclerosis on A Person’s Sexuality
(05/04/2004) by Dr. Greg McGreer
Q: I have been suffering with MS for around three years, but I was only diagnosed with this illness about three months ago, since then I have been taking the daily injection Copaxone. My sexual desire has been almost nothing for three years and the problems is a I am only 25 and married this is causing a huge strain on my marriage.
Is there any way you could tell me if my illness is related to my lack of desire? If so is there any medication to help me? I really need some help in a huge way.
A: Given the complexity of the sexual response with the neuromuscular transmissions involved, it is no surprise that sexual difficulties often are encountered in people with MS. Such difficulties frequently are clearly physical, although a psychological component is also involved in many or most instances of these difficulties. More than 90 percent of all men with MS and more than 70 percent of all women with MS report some change in their sexual life after the onset of the disease.
Men most often report impaired genital sensation, decreased sexual drive, inability or difficulty in achieving and maintaining an erection, decreased force of ejaculation, and or delayed ejaculation.
Women report impaired genital sensation, diminished orgasmic response, and loss of sexual interest. They also report being bothered by intense itching, diminished vaginal lubrication, weak vaginal muscles, and a reflex pulling together of the legs (adductor spasms).
A diagnosis of MS does not add to or detract from most available treatment options of sexual difficulties. For example, a major reason some men lose interest in sex is because they have or fear they will have an erection problem. Some men with or without MS are not sure if they can have erections when required or believe they will not last as long as they think their partners want. Women report receiving little to no pleasure in sexual activity. This includes weak or lack of orgasms, painful intercourse, being sexually used by someone, and or complications from medications such as anti-depressants. Sometimes it seems easier to give up and just not have sex at all.
Your question did not specify whether you're a man or a woman. If you are a man and your erections are insufficient for penetration several alternatives are available. Testosterone injections and the oriental drug yohimbine have been used with variable but not encouraging success. Other over the counter herbal supplements have shown some positive improvements in mild to moderate problems but not been proven to work with people suffering from MS.
Oral medications such as Viagra (sildenafil) and apomorphine represent the first line of treatment options for people with erectile tissue dysfunction and are showing positive results in men and some women with MS. For men this improves the erection. In some women the medication increases blood flow to the clitoris, increasing sensitivity and the likely hood of obtaining an orgasm. This sexual pleasure results in further increases of sexual desire.
A solid erection may also be obtained in most men with a prostaglandin based medication such as Caverject. Caverject is injected into the penis using a small needle approximately 30 minutes before intercourse. It usually creates a strong erection and is very successful in creating an erection in men who happen to have MS.
Another alternative involving prostaglandin is a medication administered into the opening of the penis (urethra) via an applicator. This system called MUSE usually gives an adequate erection 20 percent of cases with stimulation from one's partner. A rubber ring placed at the base of the penis after erection occurs may hold the erection for a longer time.
There also is the penile vacuum device, which consist of a tube that is placed over the penis with a rubber ring around the top of the tube. A pump removes the air from the tube, creating a vacuum that draws blood into the penis to produce an erection. When the erection is adequate, the rubber ring is slid onto the base of the penis and the tube is removed.
Finally, it must be remembered that recent surveys on female sexual satisfaction indicate that a male erection is not that important for female sexual satisfaction. The idea that a man needs a long hard penis is a myth. Most women obtain sexual satisfaction from oral or manual stimulation of the clitoris.
Regardless of your gender, the diagnosis of MS may alter your self-image. It is common to feel sexually unattractive when one is concerned about braces, wheelchairs, and catheters. To develop sexual feelings focus on becoming comfortable with your body. This is a goal that requires time and commitment. It is important to identify your positive personal qualities and to put significant effort into feeling good about yourself. Take care of your body through exercise, diet, dress, and so forth. Feeling good about yourself will help to defeat the myth that you must have a "perfect" body to be sexually attractive.
Communication is critical to achieving a positive, enjoyable sexual relationship, and feelings must be dealt with openly and honestly. It is important to convey information about what feels pleasurable and what does not and to experiment with different sexual positions and creative, alternative ways to give and receive pleasure. Society emphasizes "normal" or "proper" ways to obtain sexual gratification, which tends to make sex goal-oriented toward intercourse and orgasm. However, many people find great physical and psychological satisfaction from activities that traditionally have been termed foreplay. One excellent way to decrease or eliminate pressures and expectation is to become less goal-oriented by renaming such activity as sexplay. Sexual expression may be directed to parts of the body other than the genitals, increasing cuddling, caressing, massage, or other forms of touch. Experiment with oral sex, masturbation, a vibrator, or other devices.
Fatigue management is perhaps the single most helpful approach in overcoming sexual difficulties related to MS. It is difficult to feel sexy when tired. Make sure to save a certain portion of your daily energy for the pleasurable task of making love. Also ask your physician about using Amantidine HCL to help take the edge off of any fatigue.
Depression, anxiety, guilt, anger and denial are the natural consequences of coping with any chronic illness. Emotional reactions may be an issue for the person with MS and his or her partner. If your physician prescribes an SRI for depression, ask them also to evaluate the additional use of Mianserin. This mediation is reported to reverse low sexual desire and orgasmic impairment in people who have taking an SRI for at least 4 weeks.
Communication between partners is also the key to managing such feelings. Couples should be sensitive to the fact that some painful feelings may not improve or disappear even with communication and support. In that case, it may be helpful to seek professional help in response to depression or anxiety that "will not go away." Bowel and bladder problems can also become a problem. To avoid bowel and bladder problems during intercourse, fluids should be reduced approximately two hours before sexual activity and the bladder should be emptied before love- making.
Spasticity or leg spasms may be another issue. This problem may be minimized by timing anti- spasticity medication so that it is maximally effective during sexual activity. Having intercourse in a side position, with the knees bent or using pillows for support, may make a difference and should be tried.
Although there are solutions that are helpful in creating an erection, these alternatives do not directly increase desire. At this time a medication that increases sexual arousal is not on the market. However, sexual desire can be increased. One method of accomplishing this is to create the conditions that increase the desire for sexual activity. For example, identify those things that if they were present or absent, would make you be more willing to have sex. What changes in your life, broadly considered, would encourage you to want more sex. A conversation with your mate will probably help. Remember to focus on what each of you want to do and not on what you do not like.
SIMMERING is a simple but effective technique developed by sex therapists Bernie Zilbergeld, PhD. and Carol Ellison. It's a way of developing and hanging on to your spontaneous sexual urges. Virtually all of us, including many who say they aren't turned on very much, experience surges of sexual energy during the day. Do something with these feelings. Why let these bursts of sexual energy disappear? Why not use them?
The next time you are aware of a sexual feeling, hang on to it for a few seconds. Imagine what you'd like to do with a partner or remember in greater detail a past experience. Whatever you are imagining, get into it. Imagine a touch on you lips, hands, breasts, vagina, or whatever. Feel the texture, the temperature, the way your body feels when you connect with your partner. In other words, run your own X-rated movie of what you want to do.
Continue this for a few seconds, or even longer if you prefer. Then let the image fade away. An hour or two later, close your eyes and get back into the image again for a few seconds. You can imagine exactly what you did the first time or change the experience any way you like. Continue in this way every hour or two during the day, whenever you have a few spare seconds.
The last step in the simmering exercise is to incorporate your real partner in the fantasy if they are not already included. You can do this when you are on the way to meet them, or driving home from work. Start the imagery with what you'd like to be doing with the person who started the simmering, then fade out and put your partner into the fantasy. Develop this idea any way you like. When you get home with your partner, you could be highly aroused and ready for a good time. Unless your partner is almost always ready for sex, which probably means they already know. A short phone call may be all that's required. This way you can be ready to go when you get together.
Simmering should become a regular part of your life. People who consider themselves sexy and have good sex lives do it all the time. It does not get in the way of doing your work or interfere in any way with your life. It does make you feel good and keeps your sexual feelings flowing and ready to blossom when the time is right.
Some people don't have many surges of sexual energy to simmer because the sex they are having isn't all that hot. I'm not talking only about a dysfunction here. The functioning can be fine, but the sexual activity just doesn't seem to be worth the effort. Sometimes the problem comes down to a lack of assertiveness. Find out what your partner wants and let them know what you want. As indicated many people often become goal oriented in their sexual activity. That is they seek penetration and worship at the shrine of the orgasm hoping to make some ejaculatory deposit. This sexual desire model holds that desire for sexual release motivates us to act. That is, we feel an inner sexual urge and this makes us move toward our partner out of a desire for our own sexual gratification. Although there is nothing wrong with this model and it often reflects reality, it places a narrow view on the meaning of sexual behavior and is not the only possibility.
Another approach for describing sexual function is based on a wish for intimacy This approach holds that each of us wishes to be seen for who we are in the presence of another. This desire for intimacy leads to exposure to sexual stimulation resulting in sexual arousal. Sexual arousal leads to sexual desire, fulfillment and an increased wish for enhanced intimacy. In short fulfilling a passion for intimacy can increase sexual desire.
Often it is helpful to set our own lack of desire aside and out of love and loyalty go along with a partner who wants sex because they have a desire for sex and have turned to you. I'm not suggesting you have sex when doing so would make you feel coerced or feel bad about yourself. If there's anything positive about the idea of sex on a particular occasion, knowing you might get into it as the action proceeds, knowing it's important for your relationship, wanting to satisfy your partner, why not go along and see what happens?
Getting your mind on your side is an important part of resolving desire and frequency complaints. Examine the frequency, intensity and duration of your negative thoughts. These thoughts often involve a feeling of discouragement for one or both partners.("We'll never have a good sex life. I have MS") It's important to combat these discouraging thoughts with positive statements. Develop a number of positive statements to use. The more hopeful you feel about finding a solution, the better the chances of finding one.
The person who wants less sex often feels inadequate or guilty ("I should want to make love more often" or "It's not fair to deny my partner the love- making they want"). It's important to remind yourself as often as possible that you're not a bad person. You just have some differences that need to be worked out. When you are aware of telling yourself negative things argue with the statement and change it. If you are thinking for example: "I'm not a bad person and I'm not denying her. We just have different appetites". You might also add: "But we're working on it and will come up with something fun for both of us." Another helpful technique is mental rehearsal. Imagine asking for sex not because you have a desire for sex but because you want to know about your partner's interest. This will increase the chances that you will actually do it. When you are not in the mood, maybe you could say, "I'm not up for sex now, but I'd love to be with you". "What about some cuddling?"
Men and women who make it a practice to have sex in the absence of a strong desire often find that in the long run their desire increases. (Be sure, however, to resist the temptation to try to force erections or orgasms.) If you discover having sex without desire brings up strong feelings of fear or anger, that in itself may be beneficial by putting you in touch with what's getting in your way. You should discuss these obstacles with your partner and, if necessary, with a qualified sex therapist. By qualified sex therapist I do not mean someone who is just experienced in treating people with sexual problems but a sex therapist who also understands the specific issues unique to an MS patient. Contact your local MS society for help in locating such a therapist.
Q: My boyfriend has MS and he cannot ejaculate.
A: The most commonly described effects in men with MS are delayed or absent
ejaculation or, alternatively, very rapid (some use the term
"premature") ejaculation. This area is clearly complex and it may be
difficult to identify the particular combination of "neurological" or
"psychological" factors responsible for changed patterns of ejaculation
in some men with MS. Since both somatic and sympathetic nerve systems
are involved in ejaculation, a number of explanations might be offered
to explain the above symptoms. These include the following
nerve damage reduces "control" by making it harder to perceive the sensations that precede ejaculation;
anxiety about "coming too quickly" activates the sympathetic nervous mechanism that "triggers" ejaculation;
nerve damage alters the components of the mechanism in some unknown way; any or all of the above interact with each other.
The words "ejaculation" and "orgasm" are often used interchangeably as
if they were the same thing. Although they usually happen concurrently
in men, they are, in fact, separate phenomena and they can happen
independently of each other. Ejaculation itself involves two separate
processes. The first, emission, happens just prior to the expulsion of
semen and involves rhythmic contractions of muscles in the vas deferens,
seminal vesicles and prostate gland. This function is mediated by the
sympathetic nervous system, specifically by nerves that exit from the
spinal cord at the junction between thoracic and lumbar segments. The
contractions cause release of semen into the prostatic urethra. Men may
experience a feeling of "ejaculatory inevitability" ("It hasn't happened
yet but its going to any second now!") at this time.
The second part of the process, ejaculation, involves contractions of
pelvic muscles to expel the semen out of the prostatic urethra. These
contractions are mediated by somatic nerves that exit from the sacral
region of the spinal cord. At the same time, sympathetic nerve fibers
arising from the thoracic-lumbar junction of the spinal cord cause
contraction of the neck of the bladder so that semen is expelled to the
outside rather than being pushed into the bladder instead. Damage to
these sympathetic nerve fibers can lead to "retrograde ejaculation in
which, semen flows back into the bladder rather than outside.
Orgasm is a much-discussed but little understood phenomenon. It appears
to be a primarily "Cerebral" rather, than "pelvic" experience. It is
associated with (some would say caused by) a variety of body changes.
These can include: rhythmic contractions of the anal sphincter; and
increased pulse, respiration and blood pressure. Subjective perceptions
of orgasm can vary considerably from one person to another.
Is the ability to experience orgasm lost when the nerve fibers
controlling genital contractions are damaged or when impulses from the
genitals to the brain are blocked or altered? Studies suggest that even
severe neurological impairment and loss of genital sensation do not
necessarily abolish the experience of orgasm. Many people describe some
change after a spinal cord injury ( ...... I can't feel it as much
as I did prior to injury") and continue to have feelings of orgasm which
they described variously as: "pleasant sensation, release, relaxing,
glowing, tingling feeling"; or "strong, overwhelming, breathless high
intense excitement"; or "good mental feelings and a strong sense of
closeness and affection towards mate". In cord-injured men, as well,
there are reports of orgasmic experience without ejaculation and even in
the absence of genital stimulation. While these experiences may not be
common, they do show the potential for sexual pleasure in the presence
of neurological damage. In addition, the hypersensitivity of
neurologically intact areas in both men and women with cord injuries
(e.g. nipples, chest, neck, cheeks) makes these areas valuable sources
of erotic stimulation for both sexes.
Unfortunately, this area has not been well studied in relation to MS. It
seems likely, however, that many of the general observations pertaining
to sexuality following cord injury will also apply for people with MS if
they have comparable neurological impairment. My conclusion from these
observations is that cord injury may change sexual response, but it does
not abolish sexuality nor does it eliminate the ability to give and
receive sexual pleasure. The same is true for people with MS.
Our society has placed an inordinate emphasis on sexual intercourse as
the "Proper" or "adult" way to obtain sexual enjoyment With orgasm for
women and ejaculation for men as the only goal.. Many-of us accepted
this dictum to the point that "making love" means "having sex" and
"having sex" has became synonymous with having sexual intercourse. For
some people, including some with MS, intercourse may be difficult or
unsatisfying or it may simply require more preparation than they want to
invest on any particular occasion. Others may find they get greater
physical or psychological arousal from sexual activities traditionally
referred to as "foreplay". Unfortunately, the term carries the implicit
assumption that such activities are primarily a 'warm-up" for the main
event rather than delightful forms of sexual gratification in and of
themselves. This is not to say that people don't enjoy intercourse
(although it is clear that some get more intense physical sensations
from oral or manual stimulation) but merely to suggest that societal
emphasis on performance in intercourse has prevented many of us from
exploring a wider variety of sexual possibilities. If intercourse has
been your primary source of sexual gratification, MS may force you to
modify your expectations and to find alternatives. You may find that
experimentation will broadened the scope of your sexuality and that you
and your partner may have to negotiate in the pursuit of sexual
gratification.
Recent popular literature has encouraged people to become less
"goal-oriented" in their sexual activities and to explore and accept
their own preferences rather than trying to meet an undefined
performance standard or to conform to restrictive "sexual roles". Some
couples have never talked to each other about these matters and are
surprised by such revelations.
Men and women with MS, therefore, may have to reeducate 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 which requires less
mobility than does intercourse or the use of vibrators ( which have
found success in aiding ejaculation) or other sex aids which can provide
sexual stimulation with minimal exertion. For you individually, it may
mean taking responsibility for your own sexual enjoyment through
masturbation, or by guiding your partner's movements, or by stimulating
yourself while with your partner or simply by giving feedback about what
feels good.
This exploration will obviously be easier if you accept your own
sexuality and if you view these sexual options not as alternatives to
intercourse but as completely worthy and acceptable sources of sexual
pleasure and sharing in and of themselves. If this acceptance does not
conflict with deeply held beliefs or attitudes, I think it can liberate
people to explore their sexuality outside the confines of "role
expectations" and "performance goals".
Dr. Greg McGreer This article appears in the following topics:
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