It Happened to Me: I Have Vulvodynia, Chronic Painful Intercourse

I am happily married. I am not asexual. But I haven’t had sex in almost two years.

Feb 28, 2012 at 11:00am | Leave a comment

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Yesterday I called the doctor’s office. I had been reading about a medication online that I haven’t tried, one that might, just might be the answer to my prayers (if I was the praying type; I’m more the light a candle and sit by a crystal type). I’ve kind of given up hope at this stage, but at the same time, part of me is willing to keep chasing every shot in the dark.

I haven’t had sex in almost two years. I am happily married. I am not asexual; I can orgasm if I want to. But penetrative sex became painful almost eight years ago, out of the blue, and it hasn’t gone away despite many, many attempts on my part to make it do so.

It is commonly known as vulvodynia. I am pretty sure I have a variation called vulvar vestibulitis, which means that I really only have pain upon touch or penetration, although I do occasionally have dull throbbing and itchiness down below. Many women with vulvodynia have chronic vaginal pain that radiates down their legs, making sitting still very painful.

There is also a thing called vaginismus, which means sex is physically impossible as the vagina seizes up entirely. Sometimes I feel lucky when I read those stories. But mostly I feel sorry for myself for not having a normal sex life anymore, and pissed off that no doctor or specialist where I live has any ideas of how to treat me.

Microsoft Word is flagging up vulvodynia and vestibulitis as unrecognized words. Fuck You, Bill Gates. It is estimated that as many as 10 percent of women will suffer from this condition at some point in their lives. We’re talking millions. The woman who wrote "Girl Interrupted" wrote a book about it, but other than that there is very little first-person literature, aside from numerous web forums, on the subject. It is a very lonely thing to have.

I can’t talk to my friends about it. It feels like a betrayal to my husband to talk about it to anyone else, hence why this is the first time I have written about it, anonymously.

I went to a sex therapist type person once and just got pissed off that she, like everyone else, seemed to think the problem was in my head. I don’t discount that this is possible, but the fact that the medical professional’s fall-back attitude to “female trouble” is to ignore the very real fact that there is stabbing pain preventing me from doing what I would very much like to be doing, is frustrating to say the least.

For the first 28 years of my life I had a perfectly normal sex life. I never had an STD. I never suffered sexual abuse. I was on the pill for most of my sexually active years, and did have recurrent yeast infections which may have been bacterial vaginosis for all I know, because I was once treated for that after years of self-treating with over-the-counter medicines. I have been ultrasonically scanned for cysts, had endoscopic surgery to check for endometriosis, both with negative results.

I cannot help but think maybe the Pill had something to do with it, as there is some evidence that the Pill creates a permanent imbalance in the body’s ability to produce testosterone/regulate estrogen, and this can even affect tissue (vaginal).

This is all stuff I have read online. No doctors acknowledge it to me. I am now off the Pill, but that hasn’t solved my problem. The treatment I have received is to be put on low doses of an antidepressant that also helps neurological pain. I think it kind of helped a little bit, but I had to go up on a higher dosage than I would like and gained weight.

They also were very keen to give me vaginal dilators, despite the fact that I have never had physical problems with penetration itself. I tried them for a while, but guess what, if a penis hurts, a cold hard bit of plastic up the hooch (that doesn’t even vibrate!) does not feel any more pleasant. Recently I have been taking a supplement called calcium citrate, which has worked wonders for some people combined with a low alkaline diet (which I have yet to try).

Needless to say, this has put a damper on my sex life. I can physically have sex, and sometimes it feels OK while I’m, you know, getting there, but the before and after part is still very painful, and my husband doesn’t enjoy it knowing I’m in pain.

I have to wear the little tampons. It’s like being a virgin again, only now I know what I’m missing. I have contemplated anal sex, but I don’t know if I want that to become reliant on that. Plus it scares me.

Sometimes I am grateful he does not pressure me, but other times it breaks my heart and makes me think he doesn’t miss it like I do. We had a very sexual relationship at the beginning which is frustrating for us both, I’m sure. We are still affectionate, but I'm afraid the feelings of romantic love are dying. I’m afraid he will cheat on me, I’m afraid I’m being selfish by expecting him to live a sexless life while we are still young. Sometimes I think he would be better off if I left him.

Not to continue with the pity party, but part of the reason this very huge issue hasn’t taken center stage/become a deal breaker is that in between all this I fought and beat a very deadly form of cancer. The doctors said we’d worry about this little problem later. So in the grand scheme of things it was easy to brush aside for a while. There is no connection between the two that I can find, and I have asked.

I know that many women experience problems with sex after cancer but this is not my problem, I am not menopausal (yet). My oncologist is always encouraging me to get moving on the baby train, which is a complete joke at this stage. Well, not a ha ha joke but an impossible dream joke. And my fertile years are fading fast, might even be gone for all I know thanks to the chemo.

Life and Death come before sex, except now I am in remission and the sex is still gone.

I guess after all this time I still just find it shocking that so many women suffer from this and it is so shittily treated. This thing has been around a long time. If millions of men couldn’t use their penises…oh wait, Viagra.

I have been saddened and disappointed by the shallow pool of options and general ignorance given to me by medical practitioners where I live. A woman’s ability to have a healthy and happy sex life in this day and age still seems sadly bottom of the list of priorities in the medical field at large.

I am grateful for the vulvodynia support forums, without them I would understand this problem even less than I do now. I get hope from some stories, but mostly there seem to be a lot of women in the same boat as me. I know there are worse things to have (and yeah I had one of them), but this one just sucks, and I don’t understand why no one is willing to do more research to sort it out. I, for one, would happily be a guinea pig, and I’m sure I’m not alone.

I am looking into this Gabapentin drug next week; hopefully it is something my doctor will have heard of and is willing to prescribe. I am tired of fighting but not quite ready to give up yet.