MS and Intimacy
What is intimacy? Is it sex, love, touching, honesty, commitment, acceptance? Or is it vulnerability, fear of rejection, sexual difficulties, shame? For many people with MS, intimacy is all of these thingsthe good and the bad.
Confronting the challenges of MS draws many couples closer together. Talking about problems and developing solutions can deepen both partners sense of intimacy. But MS can also create barriers. People often report that their relationships suffer as a consequence of MS. Many people with or without MS dont talk easily about their sexualityeither the positive aspects or the anxieties associated with it.
Although study results vary somewhat, it seems clear that people with MS do experience more sexual problems than the general population. MS can affect sexuality both directly and indirectly. This booklet looks at the effects of the problems and outlines how they can be managed, solved, or minimized.
Many of the suggestions are useful even if MS is not the source of sexual problems. Difficulty with sex is quite common among humans in general. Happily, there are many sources of help and support. The primary care physician can usually start the process of identifying the source of problems and offer both medical and non-medical treatment options and/or referrals. But often, the person with MS has to bring up the subject.
An easy way to begin is by requesting regular checkups related to sexual health: For women, annual breast and pelvic exams, a pap smear, and, after age 40, mammograms; for men, testicular cancer screening, prostate exams, and, after 40, PSA tests. For both sexes, birth control and HIV prevention advice. These requests not only protect health, theyll remind your health-care provider that you are a sexual being, despite the MS diagnosis. You may then find it easier to report personal symptoms and ask questions.
TALKING ABOUT IT
Often the biggest problem is the inability to discuss sex and intimacy with ones partner. In many ways, a discussion of personal sexual problems is still taboo in our society, despite a popular culture that seems to be steeped in sex. Not only is the subject embarrassing, but in many cases we just dont have the language to describe our feelings and experiences.
Writing it down
with your partner
When MS problems are in the picture, avoiding talk can easily lead to avoiding sex. Sen-sory changes may make things that used to bring pleasure feel painful or uncomfortable. Telling your partner what feels good and what doesnt, becomes crucial to intimate relations when MS changes the body and the mind. Its important to find out what your partner wants, and let him or her know what you want.
Confiding in your partner actually deepens intimacy and may go a long way toward resolving fears. For example, one common anxiety among people with MS is fear or shame about bladder or bowel accidents. Giving up sexual activity is not a solution to this. Discussing the problem will reduce anxiety between loving partners. Open communication with health-care professionals will produce some solutions. Bladder and bowel problems can usually be managed through manipulation of medication and establishing regular eating and toileting schedules. With good communication, a little urine wont destroy a rewarding sex life. Con-cealing the problem and the anxieties associ-ated with it might.
The person with MS is not the only one who needs to talk about sexual feelings and anxieties. The well partners experience is also affected by the MS. Communicating these feelings can help well partners avoid guilt, grief, and resentment.
Cognitive problems can undermine sexuality in subtle ways. People with MS who have developed difficulties with short-term memory or concentration, may drift off during sexual activities in ways that can be disheartening to their partner. Indeed, the partner may be more aware of this MS symptom than the person with MS.
It requires love and patience to bring this out in the open and to seek the needed psychological and medical treatment.
Talking to your
If you have symptoms that hamper sexual activity, tell your health-care team. Or write out a list that you can hand over to your doctor or nurse. Many sexual problems associated with MS can be medically managed. You can encourage your doctor to focus on ways to minimize the effects of MS and MS treatments on your sex life if you ask.
Sometimes the well partners pull away from sexual activity because they worry about hurting the person with MS. In this situation, well partners should have an open discussion with the health-care team and get information about the safety of various sexual activities.
People with a gay sexual orientation sometimes have problems communicating with health-care professionals. You need to take action if you find that your health-care provider is uncomfortable, disrespectful, or dismissive of your sexuality. This attitude affects your total health care. You can and should seek more supportive professionals. Ask your Society chapter for referrals. Community gay rights organizations may also be able to offer some assistance.
sexual function in MS
Psychologists and other mental-health professionals help people clarify and discuss intimate issues. Counseling often helps couples gain perspective on their attitudes and behaviors. Training in communication may be offered, to teach couples ways to talk more easily with each other and with the medical team. National MS Society chapters can provide referrals to mental-health professionals who have experience with MS.
Urologists evaluate and treat both bladder and erectile problems. Bladder problems can interfere with sexual activity for both men and women. These are manageable problems that shouldnt be neglected. Urologists may also perform the medical tests to evaluate sexual function in men. These might include penile doppler sonography, which looks at blood flow in the penis, and nocturnal penile tumescence, which determines if the usual nocturnal erections are taking place.
MANAGING SEXUAL PROBLEMSWOMEN
The most common problems experienced by women are loss of sex drive, uncomfortable sensory changes in the genitals, vaginal dryness, and loss of or difficulty reaching orgasm.
Loss of sex drive
However, loss of sexual desire does not make a satisfying sex life impossible for women. Desire is not a necessary precondition. Women can experience sexual pleasure even in the absence of a powerful drive.
In the movies, desire is always sparked in both partners at once. In real life, one partner produces sexual interest in the other through playteasing, flirting, and foreplay. Many couples discover that the loss of intense sex drive simply means more flirting and foreplay.
Increasing stimulation to the genital area can help overcome numbness. In some cases, oral or manual stimulation of the clitoris will be enough to enable a woman to achieve orgasm.
If this is not sufficient, vibrators and other sex toys may provide even greater stimulation. There are many kinds of vibrators available at adult novelty stores and through mail-order catalogs. Some couples may enjoy the small egg-shaped vibrators made to be worn during intercourse. There is also a device called EROS-CTDconsisting of a soft cup to be placed over the clitoris and a palm-sized vacuum pump that draws blood into this tissue, increasing arousal.
MANAGING SEXUAL PROBLEMSMEN
The most common problems experienced by men are difficulty or inability to get or hold an erection, decreased genital sensation, rapid ejaculation, and difficulty or inability to ejaculate.
In some cases it may be hard to tell what is causing the problem. Demyelination (or loss of the protective myelin layer on nerve fibers) may directly affect erectile function. Medica-tions may also be factors. Stress and anxiety produced by living with MS may contribute to or even be the primary cause of erectile dysfunction. Your physician will try to clarify the source of the problem in order to choose the most appropriate solution. Understanding the mechanics may help you and your partner.
How do erections
The fear of having difficulty getting or keeping an erection can be so overwhelming that it causes some men to lose interest in sex entirely. This anxiety may even be the sole source of the problem.
Viagra, Levitra, and Cialis produce a higher cyclic GMP concentration in the penis and enhance erections by creating more compression of the veins by smooth muscle tissue. Recent research indicates that Viagra is effective in about 50% of men with MS.
Levitra, approved by the FDA in 2003, and Cialis, also approved by the FDA in 2003, both work by targeting an enzyme important for keeping blood in the penis during erections. Viagra, Cialis, and Levitra are all taken in pill form. Many physicians see them as interchangeable but may recommend trying another if one of them fails to work well. Individual responses vary.
All three drugs help maintain an erection but do not produce one. Sexual stimulation is needed for that. No men with MS were in the trials that led to the approvals, although Viagra has been studied in an MS population.
Before taking any one of these drugs, its important to take precautions against possible drug interactions and to discuss side effects with a knowledgeable physician. Men who have heart or blood pressure conditions or who take nitrate-based medications may be especially at risk for problems.
Other options include self-injection of Alpro-stadil into the spongy tissue of the penis. This relatively painless injection produces an erection. The needle is very small, and the satisfaction with it is generally excellent.
Devices can also
These devices can be purchased in specialty shops and through mail-order and Internet catalogs, some of which are listed in the Resource section of this booklet. Catalogs and specialty stores also sell rubber rings meant to be worn at the base of the penis. These rings reduce blood flow out of the penis and can help to maintain erections.
It is important to get instruction on using such devices from a urologist or other medical professional to prevent damage to the penis. The vacuum tube and band may also be prescribed by physicians or urologists.
People tend to think of orgasm as the ultimate goal of sex. But is this true? There may be times when orgasm is impossible. Does this make sexual behavior pointless? The temporary or even permanent loss of orgasm in women or in men does not invalidate their need for intimacy and sexuality. Physical intimacy produces emotional intimacy that deeply affects peoples physical and emotional well-being.
In other words, sex makes people feel good, even when it doesnt lead to orgasm. Making love does not necessarily mean having intercourse. And having intercourse is not the only way to experience sexual pleasure.
Despite the tremendous emphasis on orgasm and ejaculation as the goals of sexual activity, most people experience great physical and mental arousal from the activities we call foreplay. This is an unfortunate name, because it assumes that these activities are a prelude to real sex and not a satisfying form of sexual gratification in themselves.
People who hold themselves to a standard of performance that must culminate in orgasm are going to find less satisfaction than people who are willing to explore and experiment with different sexual activities. This is true for everyone, not just people who live with MS.
Self-stimulation is an area heavily colored by cultural values and expectations. Some religious groups consider it unacceptable. If that is true for you, please skip the next paragraph.
Commonly, people think of masturbation as juvenile, or as a substitute for sex. The fact is, most sex experts today say that solo sexual activities help people to redefine and renegotiate their sexuality. If sex is not just orgasm, then sex is not just something that only happens between two people. Self-stimulation reminds us that we need not be dependent on another person for pleasure and release. In cases where the effects of MS make solo sexuality difficult, the strain and discomfort may be reduced by experimenting with vibrators and other sexual aids.
TREATING THE MEDICAL PROBLEMSA CHECKLIST
Many sexual problems produced by MS symptoms or MS treatments can be managed with the help of your medical team.
CAREGIVING AND SEXUALITY
How does one shift from being a caregiver to a lover? In relationships where a partner provides a lot of caregiving this can be difficult. It is important for the well partner to maintain some regular personal time away from caregiving duties because that helps prevent feelings of resentment. It may also be important for the couple to create new rituals and new sexual signals that separate caregiving activities from sex and romance. Talking together about the old signals and rituals may help a couple begin creating a new path.
REDISCOVERING ONES BODY
Living with a chronic illness makes people very aware of their bodiesthe ways it works and the ways it doesnt. Often this intense awareness makes the body seem strange and unfamiliar. And certain MS symptoms make the body respond very differently than it once did. Making peace with this new condition means taking the time to investigate and explore it.
For this exercise to be successful, it is important to adopt an attitude of open exploration. In a comfortable, secure setting, spend 15 minutes gently touching all the parts of your body that you can reach. Repeat the exercise regularlyseveral times a week. Linger on the pleasure areas, but dont try to achieve an orgasm. The purpose of body mapping is to get to know your body. Pursuit of an orgasm may interfere with this exploration.
More advanced body mapping exercises include both partners. Exploring each other through touch can help deepen intimacy and enhance sexuality. In some cases, this explorative touching may make verbal com-munication between partners easier.
Self-scrutiny is an important part of main-taining sexuality in your life, especially if MS has dampened desire. Thinking more positively will help to restore enthusiasm.
Most important of all, dont give up the pleasures of physical and emotional intimacy. Do give up the niggling worry that sex is not a fit subject for conversation. Talk about it with your lover and talk about it with your doctors and nurses. Its worth it.
A REVIEW OF THE SEXUAL EFFECTS OF MS
The primary sexual effects of MS include:
All of these are changes that can occur as a direct result of demyelination in the spinal cord or brain.
Multiple Sclerosis Fact Book by Richard Lechtenberg, M.D., Second Edition, 1995. $27.95. Write: F.A. Davis Company, 1915 Arch Street, Philadelphia, PA 19103. Tel: 800-323-3555 for credit card orders. Web site: www.fadavis.com.
Multiple Sclerosis: A Self-Care Guide to Wellness edited by Nancy Holland, M.S.C.N., Ed.D., and June Halper, M.S.N., R.N. Paralyzed Veterans of America, Inc., 2004. $19.95. Tel: 888-860-7244.
Managing the Symptoms of Multiple Sclerosis, 4th Edition, by Randall T. Schapiro, M.D., Demos Publications, 2003. $19.95. Write: Demos Publications, 386 Park Avenue South, Suite 201, New York, NY 10016. Tel: 800-532-8663. Web site: www.demosmedpub.com.
Multiple Sclerosis: The Questions You HaveThe Answers You Need by Rosalind C. Kalb, Ph.D., Third Edition, 2004. $39.95. Write: Demos Publications, 386 Park Avenue South, Suite 201, New York, NY 10016. Tel: 800-532-8663. Web site: www.demosmedpub.com.
Enabling Romance: A Guide to Love, Sex, and Relationships for People with Disabilities by Ken Kroll and Erica Levy Klein, No Limits Communications, 2001. $15.95. Can be ordered from Amazon.com.
The Joy of Solo Sex by Dr. Harold Litten, Factor Press, Paperback, 1996. $12.95. Focuses mainly on men. Can be ordered online or at your local bookstore.
Sex for One: The Joy of Self Loving by Betty Dodson, Random House, 1995. $14.00. Focuses mainly on women. Can be ordered online or at your local bookstore.
Sexuality Information and Education Council of the United States (SIECUS) provides a bibliography of print and audiovisual materials related to sexuality and disability for $3.00 Write: SIECUS, 130 West 42nd Street, Suite 350, New York, NY 10036-7802. Tel: 212-819-9770. The bibliography is also available free on the Web at www.siecus.org.
American Association of Sex Education Counselors and Therapists (AASECT) provides a list of certified sex therapists and counselors in your area. Send a self-addressed stamped envelope to: AASECT, PO Box 1960, Ashland, VA 23005-1960. Tel: 804-752-0026. Web site: www.aasect.org.
Lawrence Research Group. A catalog of sexual aids, books, resources, and information. $4.00 each. Write: 5375 Procyon Street, Suite 102, Las Vegas, NV 89118. Tel: 800-242-2823.
Good Vibrations provides a mail-order and Internet catalog of sexual aids, books and videos. To get a catalog, write 938 Howard Street, Suite 101, San Francisco, CA 94103. Tel: 800-289-8423.
Tanya Radford is a freelance health writer.
A special thank you to Dr. Fred Foley for his work in this field on which much of this booklet is based.
This publication is supported by contributions to the National Multiple Sclerosis Society from its members and friends.
Reviewed by members of the Client Education Committee of the National Multiple Sclerosis Societys Medical Advisory Board.
|Copyright © National Multiple Sclerosis Society, 2005|