My story begins during my six month of pregnancy with my son (who is now 5 1/2). But I now I think I can recall earlier symptoms. Anyway after the birth and at my six week check I noticed something wasn’t right. And sure enough, we tried and it hurts so bad I cried. Lube, wine, medical pot, lydocane- nothing worked. I was tested (like everyone) for stds, yeast, hpv, testicular cancer (just kidding just wanted to see if you are still awake). And like everyone of course all the test came back negative. For a long time there was no visible cause for anything to be wrong. So three years, a host of “treatments”, unsupportive doctors, and a slowly crumbling marriage later I finally get a diagnosis. Woo Hoo I have Vulvodynia! So I start researching and there is not anything that I can find. I stumbled upon an on-line support group but I need in-person support. i needed resources in my communnity for my family to turn to. But nothing was avaliable at the time.
We moved to start fresh in a bigger home. My symptoms seem to go into remission. Sex was never pain-free but at least we could have sex. So we had another baby (she’s 21 months old) and during her pregnancy my symptoms flared back up again. So I had a “Vestibulectomy” which is where they take a laser and remove the inflamed tissue and in theory scar tissue would grow back and then there would be no more pain. After six weeks of waiting, I go back in to see how everything looks. Well… My doc was unable to check the area because now it had been so traumatized by everything my pelvic floor had now spasmed. Which would explain why I would sit on the toilet and nothing would come out-even when I had to go. (And I have had UTI’s and this was nothing like that) This also occurred when I had to go poo as well. So I was sent to biofeed back therapy. My marriage at this point was over, in large part due to the VVS. But one of the last things he said to me was “even if your vagina worked I would still want to be with other people”. Burn. The other large part was his infidelity. Double burn.
So now I live at home with my parents and my two kids. The bio-feedback therapy really helped alot. I think I need to keep going back there in fact. The surgery was a total faliure. I did not have a single tiny bit of relief. On a total lark my friend Emily was over and I was trying to tell her about the divorce without talking about my vagina issues. Suddenly I thought ‘aw fuck it’ and I told her everything. Then she said I know another friend of mine who has that. I laughed out loud. ‘No no that’s not possible’ I thought. Well that person turned out to be Katie S. And from the first moment that we met each other it felt like everythling in my life had been leading me here. Because as soon as we did meet we all clicked and the NVVO was born. Katie E’s husband named us the “Vagina Girls” and we have been thus ever since.
It is so important for all of our recovery is to connect with each other. We are not alone. Here are some statistics: the National Institute of Health says that one in six women have VVS- thats thirteen million women. October 24th is National Vulvodynia Awareness Day.
Be pro-active in your health care, no one else will. Be compassionate to yourself. Hang out here, take your shoes off and tell us about your Vagina.