Reminder: Online Support Group Meeting Tonight at 8:00 EST

Come interact with fellow patients living with vulvodynia, pudendal neuralgia, vulvar vestibulitis, IC and other chronic pelvic pain conditions.

Rules of Etiquette

1. Please be respectful of everyone in the group. We are not competing for who has it worse. We're all in the same boat, and we all know how difficult it can be.

2. Please remember this is intended to create a positive environment, so please keep your negativity in check. I know this can be a challenge given the subject, but it is necessary for the success of the group.

Here's How It Will Work:

-The chat will be held in the left sidebar on this page.

-Log in to participate by giving a username and a password.

-A topic will be introduced and then everyone will be invited to share her experience.

-The meeting will last one hour

Starting a Database

For my blog, I would like to start a database of doctors across the country who treat vulvodynia, pudendal neuralgia, pelvic floor dysfunction, vulvar vestibulitis and interstitial cystitis.

If you have a doctor that you see, please send me his or her name, address and phone number. More importantly, please send me any comments you have about that doctor and rate your experience.

It took me 5 years to find the right doctor. With this list, maybe we can help save someone else from years of discomfort and deadends.

Please email your doctor's information to lifewithvulvodyniaATgmail.com or post comments to this entry.

Thank you very much for your contribution.

Wait, Now I Don't Have Vulvodynia?

My senior year of college I found an “expert” vulvodynia. After poking around for a remarkably short time, she informed me that I didn’t have vulvodynia; I had vulvar vistubulitis, a condition where your vagina is in constant spasm. She told me that was why I had the most unbearable pain with penetration. She said I wasn’t a candidate for surgery or medication, but she told me I would need to undergo physical therapy.

I went home and cried after that appointment. I couldn’t think of anything more humiliating than having to work my vaginal muscles on the fingers of a stranger. That’s incredible private. It’s one thing to lie back, space out and have a pelvic exam, but it’s another thing to be working with the medical professional who has her hand in you.

I didn’t want to do it. I felt completely hopeless. I wanted it to be something straightforward. I know this sounds terrible, but I wanted it to be cancer. Cancer you can treat, cancer you can remove. In my mind, there was nothing I could ever do to make this go away.