Quoting directly from the website http://www.ichelp.org
IC and Intimacy
Interstitial Cystitis (IC) can have a disruptive effect on sexuality and relationships. In a survey conducted by theInterstitial Cystitis Association (ICA), at least 90 percent of patients reported that their IC has kept them from sharing intimacy with their partner.
IC and associated conditions like pelvic pain and vulvodynia can affect all aspects of sex. From 50 to 85 percent of women with IC have vulvodynia. Many have pain with intercourse or orgasm, or sexual activity may prompt IC flareslater on. Pain can set up a cycle of low desire, tension in the relationship, depression, avoidance, and guilt. Although the effects of IC on men’s sexuality have not been studied, clinicians who treat men estimate that their rate of sexual difficulties is similar and note that they have essentially the same problems. Men with IC can have genital and perineal pain similar to vulvodynia, pain with intercourse, low desire, and relationship difficulties as well as erectile dysfunction and pain with ejaculation and after ejaculation.
The impact of IC on relationships and psychological well-being is great. In fact, impaired sexual function has been shown to be one of the strongest predictors of poorer quality of life in IC patients. Despite the magnitude of the problem for IC patients, it often is not addressed.
Sexuality and painful sex doesn’t get addressed for many reasons. Doctors often do not discuss sex with their patients. In addition, it can be difficult to talk to your partner about intimacy. But if you are proactive about seeking medical treatment, sex therapy, counseling, and good communication with your partner, you can restore satisfying, comfortable sexual intimacy to your life.
Explore Alternatives to Intercourse
If your IC or pelvic pain makes intercourse just too painful, there are reasonable alternatives. When penetration is too painful for women with IC, couples often use “outercourse” techniques. Often, that means joining either in a “spoon” position or with the partner’s genitals resting on top of the pubic area or between a woman’s thighs, breasts, or buttocks and rubbing bodies in a way to experience high levels of arousal and even orgasm (for one or both partners). Partners can also bring each other to orgasm, if that is comfortable, orally or manually or masturbate mutually. And sex isn’t all about orgasm. You and your partner may be able to maintain your sexual connection with sex talk, sharing fantasies, cuddling, reading erotica, watching sexy videos, kissing from head to toe, bathing together, or sensuous massage
Here’s an interesting question and answer session by Jill Osborne from ic network