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Interstitial Cystitis and Sexuality: Carol's story

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Updated August 18, 2006

When we think of chronic pain, illness, and disability we often imagine it as an all consuming monster that, when it “attacks us”, transforms us from an independent person into nothing more than an amalgamation of symptoms and complaints. While this can actually describe what it’s like at times to live with chronic pain, illness, or disability, it doesn’t represent the full reality of living with chronic pain, illness, or disability. The fact is that we are all individuals first and foremost, and the ways these conditions or situations impact us are as unique as we are.

It follows that the impact on our sexuality is as unique as we are, whether or not we have the same underlying condition as someone else. This is true, but it’s also true that similarities can be found, and experiences shared in a way that can help provide support and advice for others living with chronic pain, illness, or disability.

Interstitial cystitis (IC) can impact our sexuality in a variety of ways.

To offer one woman’s experience of sexuality and IC, I interviewed Carol, a 48 year old woman who was recently married and despite a lifetime of living with pain related to sex, was only diagnosed last year.

What’s your first memory of having pain related to sex?

Well I’ve had a history of urinary tract problems for most of my life and I’ve had issues with pain ever since I started having sex at age 19, but assumed for years it was "honeymoon cystitis" or a structural abnormality until I learned about IC. I began suspecting I had IC when repeated urinalyses with urinary tract pain yielded no bacteria. It was a “mystery disease” for a long time.

When and how were you diagnosed with IC?

This year, although I suspected I had it probably a good 8 years ago, but the urologists I saw never made the diagnosis, neither did my regular physician. After a series of exceptionally bad "flares" (as we call them), one lasting 6 weeks this past winter, I got fed up and went to see a gynecologist. She made the diagnosis based on a questionnaire (they used to confirm the diagnosis only via cystoscopy where you could sometimes see bleeding ulcers in the bladder, but not everyone with IC has these). This is very important because until very recently IC was only diagnosed by eliminating all other possible causes which you know can be very time-consuming. The scales are very helpful in reducing this time to diagnosis

Has IC affected your sexuality?

Yes, I'm not able to have intercourse as much as I would like. A lot of my self-esteem and personal validation comes from my sexual identity, so not being able to have intercourse as much as my partner and I would like has been very frustrating for both of us at times. Fortunately, my partner has always understood because I have communicated what was going on and that the less frequent sex was not a reflection of my feelings or desire for him.

Sometimes I think everyone else is having sex more often because they don't have this condition but then I find out many people have their own issues regarding sex; either physical, emotional, or psychological. So we’re really not doing that badly. And we shouldn’t compare, anyway, it’s not a healthy way to approach something as individual as sexuality.

Has IC had an impact on the way you feel about or experience your body?

I feel like my body is betraying me. I tend to be a control freak sometimes but I can't control this condition as much as I would like. (But I'm working on it!)

How has IC impacted your sexual behaviors or sex life?

Well, I have vaginal intercourse considerably less, and tend to rely on other methods of sexual satisfaction, such as mutual masturbation, and oral sex. Fortunately, my IC hasn't been so severe that orgasms are painful, but I know that's not true of everyone who suffers from this condition. Having IC has been quite a problem for me as I travel frequently for business and I still don’t have intercourse right before a trip for fear that I will experience debilitating pain while on the road. So far, so good…

Are there things you do that you find help to minimize the impact of IC on your sex life?

I communicate extensively with my partner, and use the other sexual avenues I mentioned above. I’ve also found that exercise helps—when I had my major flare up earlier this year, at least 20 minutes of exercise provided the best relief (maybe it was the endorphins released, or just the fact that I drank a lot of water, which could have flushed out bladder toxins?).

Do you feel there have been benefits of living with IC related to your sexuality or sex life?

It makes me appreciate when I can have sex! And realize that so much of the pleasure of sex doesn't involve intercourse...it's about connecting with your partner and being close to him.

Read more about sex and IC:

  1. About.com
  2. Health
  3. Sexuality
  4. Sex Questions & Answers
  5. Interstitial Cystitis and Sex – Sexual Impact of Interstitial Cystitis

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