Interstitial Cystitis (IC) can have a disruptive effect on sexuality and relationships. In a survey conducted by the Interstitial 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 flares later 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.

Donors who give $10 or more to the ICA will have access to all of the ICA fact sheets and brochures, including (but not limited to):

  • Helpful Sexual Intimacy Products
  • Being Intimate When You Have IC
  • Talking to Your Patients About Sex
  • Sex & IC Brochure
  • IC & Vulvodynia Brochure

Also, donors who give $100 or more will have access to all back issues of the ICA Update, which includes an issue on Men & IC, as well as many other helpful topics.

For more information, visit ICA Donor Resources.

Plan Ahead

If you have IC, it may be helpful to plan your intimate encounters for when you’re feeling your best. Getting prepped for intimacy can be helpful.  For example, try relaxation or heat or cold therapy. Or plan for sexual activity after helpful IC treatments, such as physical therapy, bladder instillations, oral or topical medications, nerve blocks, or trigger-point injections. In addition to treatment for sexual or genital pain, men with IC may be able to use erectile dysfunction (ED) treatments. You can also plan for sexual activity in the 24 hours before you have a doctor visit so that you can get calming therapies afterward.

It’s also helpful to “test out” activities or products before you try them out with a partner. For example, you can test out a lubricant to see if it’s comfortable for you, or women can use a dilator or vibrator to see if penetration will be comfortable. This can help you avoid unsuccessful encounters that prompt guilt or tension and can build your confidence.

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.

Work with a Therapist

Working with a sexual medicine specialist, sexologist, psychiatrist, psychologist, or counselor can help you explore ways of being intimate, communicate about sexual needs and limits, break through communication barriers, and treat depression.

Revised Sunday, May 26th, 2019