Like other chronic illnesses, interstitial cystitis (IC) can have a disruptive effect on sexuality and relationships. As one IC patient astutely observed, having IC exaggerates the problems everybody has with sex - communication, relationships, and how to please our partners. This brochure describes the range of sexual problems that IC patients may have and solutions that have been helpful to many.
Good partner communication is essential for solving sexual problems. Otherwise, partners may be unable to make the necessary adjustments in their sexual activities that chronic illnesses like IC often require. Some may emotionally withdraw instead of being intimate. Sometimes, IC patients and their partners avoid sex entirely because they are afraid to cause pain or a flare-up of symptoms. IC patients have also been known to put up with painful sex because they worry that their partners would reject them otherwise.
Clear communication can help your partner understand that "no" doesn't mean "I don't love you." New types of sexual activity can be first-rate substitutes for those which are no longer pleasurable. By being assertive rather than aggressive or defensive about sexual needs, you and your partner can avoid misunderstandings. In spite of sexual difficulties that IC can cause, many patients say that when the challenge is shared, they become closer.
Being clear in your own mind about your fears, needs, and limits, and communicating them to your partner is crucial. You might want to explore such questions as: What is the difference between affection and sex? How often do you each expect to have sex? What types of activities are important to each of you for "good" sex? What hurts? What feels good? Is there another way to do things? If certain types of sexual activity cause you pain, are they worth it?
Working with a psychotherapist, sex therapist, or support group can be helpful in working through sexual problems or depression. Counseling can help couples evaluate and communicate their sexual needs and limits, or break through communication barriers. In support groups, partners can do role-playing, so that each one can see how pain impacts on the other one's ability to engage in certain sexual activities. Choosing a therapist who is right for you can be bewildering. Networking through support groups can be helpful. The ideal choice might be short-term therapy with someone who has a special interest in sexuality, and has dealt with patients who suffer from chronic illnesses.
By far the most common sexual problem among IC patients is pain before, during, or after sexual activity. However, intercourse seems to cause the most problems. Here are some suggestions for reducing pain:
- Experiment with intercourse positions or other types of stimulation which are likely to reduce pressure on the clitoris or urethral opening.
- During intercourse, having the woman on top or using rear entry with the woman lying face down or on her hands and knees, may take direct pressure off the glans of the clitoris and the urethral opening; or the woman can sit astride the man on a chair, couch or bed, and the man can use a rocking motion, rather than thrusting.
- Remember that intercourse isn't the only way or the best form of sexual activity, especially for women. Experiment with taking turns caressing each other's genitals.
- Taoist sexual practices and the Hindu tradition of Tantric yoga prescribe gentle, more meditative sexual practices as a pleasurable substitute for athletic sex. (See Healing Love Through the Tao in the "Resources & References" Section.)
Some IC patients, especially those with severe symptoms, find that having intercourse, direct clitoral stimulation, or orgasm is too painful and may exacerbate IC symptoms. For some, even sexual arousal may intensify symptoms. This may be a time when quiet cuddling is all that is tolerable, or to focus on forms of sexual activity that are pleasurable, but stop short of orgasm. In any event, orgasm is not the only goal, or even an essential one, of sexual activity and many people find that sex can be both enjoyable and rewarding without it. You might also want to experiment with alternatives to intercourse.
With medical supervision, some IC patients have tried using at-home bladder instillations of local anesthetics such as lidocaine or Marcaine® either before or after sex. (If you are doing self-catheterization, be sure to do so only in consultation with your doctor.)
If intercourse is just too painful, there are reasonable alternatives. "Outercourse" is sexual activity that includes everything except intercourse: sex talk, sharing fantasies, cuddling, reading erotica, watching sexy videos, kissing from head to toe, bathing together, sensual massage, individual or mutual masturbation, and oral sex.
In the past, any sexual activity other than sexual intercourse was viewed as something that bad girls did to please men, and today, some women remain reluctant to try outercourse for this reason. But oral sex and other types of outercourse are pleasurable and perfectly normal! Some women who have IC find that oral sex or stimulation of their genitals with hands or fingers is more comfortable than intercourse. The partner with IC can still bring their partner to orgasm orally or manually, even if IC symptoms are too painful for intercourse. Couples can also try a form of intercourse in which the woman crosses her legs and the man thrusts the penis between her thighs.
IC patients have come up with a variety of creative suggestions to help make sex more comfortable. These include:
- Reaching orgasm quickly to reduce friction on sensitive tissues.
- Being very aroused before penetration, or using a vibrator. Using vibrators is intolerable to some, but others say that a small, battery powered vibrator helps to achieve orgasm quickly and reliably, thus avoiding excessive friction. Also, the man should be very aroused before penetration so that orgasm comes quickly, and there will be less trauma from prolonged or deep thrusting.
- For pain or burning after sex, a cold gel pack may help "cool the burn." >
- Small finger-shaped balloons filled with water can be frozen and then inserted into the vagina briefly immediately after sex to help reduce irritation.
- To reduce the risk of bladder infection, drink water or other fluids before and after sex. Voiding a reasonable amount of urine after sex helps to flush out the urinary system. Diaphragms have also been identified as causing repeated urinary tract infections in some women.
Having a painful, chronic illness like IC often results in a loss of sexual interest or ability to become aroused. The need for frequent trips to the toilet may make people feel undesirable or sexually inadequate. Pain, stress, depression, the menstrual cycle, and certain medications, including antihistamines, pain- killers, and antidepressants, may also interfere with sexual interest and activity. If you think you are feeling depressed right now, it would probably be helpful to see a psychotherapist. If you are not sure of the type of therapy you need, there are various guides sold in bookstores that may be helpful. A sex therapist may also be of help in suggesting ways to increase sexual interest and activity.
Pain during sex can be the result of insufficient vaginal lubrication. This may be due to less frequent sexual activity, drugs that dry out mucous membranes, or lowered estrogen levels after menopause. Pain can also result on penetration if the female partner is not aroused enough to produce natural lubrication. In this case, delaying penetration until the woman is fully aroused is helpful.
- Regular sexual activity, either alone or with a partner, is often enough to keep the vagina moist.
- Try natural or synthetic lubricants, including vegetable oil, aloe vera gel, water-based lubricants, and other lubricants such as Astroglide®. You can find these products in pharmacies next to the feminine hygiene products or condoms, or they can be ordered through various mail order companies. Adding Vitamin E oil to your lubricant may aid healing of raw tissues.
- Estrogen cream, placed directly into the vagina, will help keep the vaginal tissues moist. However, estrogen is not a cure, it merely relieves symptoms, and there are certain risks attached to regular use, so consult your doctor before using.
Men of any age, on occasion, may find it difficult to become erect or to have an erection which is hard enough for intercourse. However, erectile difficulties become more common after the age of 40. Some men with IC have difficulties with erections because of genital pain, or embarrassment that their frequent need to void will disrupt sexual activity with a partner. Many medical conditions, including diabetes, heart, and circulatory diseases can also contribute to erectile problems. Partners of IC patients may develop erectile problems because they are afraid to hurt the woman during intercourse. Finally, excessive use of alcohol, depression, anxiety, and insufficient arousal can also interfere with erection.
Whether erectile failure occurs regularly or occasionally, it is important to remember that intercourse is only one way of having sex; there are many other ways that you and your partner can give each other pleasure. Some men find that focusing on whole body sensuality instead of genital sensations alone helps reduce performance pressure, and enhances their ability to become erect. Even more important, good communication with a loving partner is an essential ingredient in improving sex. There are a number of urological treatments available for alleviating erectile problems, but these should be used only on the advice of a trained physician. Often, couples find that sex therapy alone helps them improve their sexual lives greatly.
- Various articles from our Resource Materials Guide available through the ICA
- Healing Love Through the Tao: Cultivating Female Sexual Energy, Mantak Chia & Maneewan Chia (Healing Tao Books, Huntington, NY).
Read also information about vulvar pain and sexuality.