WELCOME

Edit: I WAS CURED AFTER 22 YEARS! I had a vestibulectomy Dec. 2016. The recovery was easier for me than having sex ever was. It took about 5 weeks. I have included my recovery photos. Look for the blogpost "I'm Cured!" and "My Vestibulectomy".

I’m a great woman with a pissed-off vulva. I have “primary vestibulitis." Most people are uncomfortable discussing their genital pain in public. My hope is that my obsession to find help for myself will make your experience shorter, easier, and less painful. P.S. Recently "vestibulitis" has been renamed to "vestibulodynia."


The Low Oxalate Die

I avoided this diet for years because it is quite restrictive. But, I finally gave it a try 6 months ago. I track my food and pain levels each day. The diet does seem to have reduced my pain by 50%. And I do notice a flare when I significantly eat off-menu. The rest of the time, I eat clean. About 3 months in, I whined to my mother about how much I hated eating to the plan. My mother who is usually generous in her sympathy said, “Melissa, what is 6 months of trying this compared to years of pain?” That shut me up. I have adapted.

Here's the concept: salts of oxalic acid are a byproduct of plants and legumes - blueberries, spinach - and what we think of as plant based products - wheat, chocolate, nuts. Plants produce sodium, potassium, and calcium salts. The sodium and potassium salts are soluble and can combine with calcium to create kidney stones (in some versions of kidney stones).  The calcium salts are non-soluble and their crystaline structure can be an irritant in the mouth and digestive system. One theory that explains vulvodynia is that these oxalates, when excreted through your urine, essentially “cut up” your vulvar skin creating ongoing and painful irritation. This damaged skin never heals as long as you continue to eat too many oxalic foods.

The low oxalate diet as a help for vulvodynia is advocated by Vulvar Pain Foundation at www.vulvarpainfoundation.org and is explained in great detail in the cookbook The Low Oxalate Cookbook, Book 2. This book reports on the oxalate content of many common foods and gives you a strong start because it lists the oxalate content for most common ingredients. The recipes themselves are of boring, Americana. Where is the Asian, Mexican, Middle-Eastern, and African food? I like potato salad, but really.

I was vegetarian, but it has forced me to eat a little meat to get protein as nuts, soy, and legumes are out. Any nutritional expert want to give advice on this?

Where is the Vestibule?

The vestibule can be tricky to find. Unless you are very flexible (like Cirque du Soleil flexible) you can't see it. Images in books and on the web are often confusing. So here is the best image I have found. The blog is aimed at doctors who will perform a vestibulectomy by removing the vestibule completely and then pulling part of the vagina down to take its place. Do not freak out about the fact that the context of this web site is surgical. It likely won't come to that for you. It is just a very accurate image of your vestibule.

http://www.atlasofpelvicsurgery.com/1VulvaandIntroitus/13excisionofvestibularadenitis/chap1sec13.html

Here's what you see in this image:
The labia minora is being pulled back so that the rest of the genitals are exposed. Then, from the top of the image is the clitoral hood covering the clitoris, below is the urethra, the vaginal opening, the vestibule in the shaded area horse-shoed around the bottom of the vaginal opening, and the anus.

Symptoms

The symptoms I experience are typical of women with vestibulitis. I had a friend describe sex and she used the exact words that I do (and her description was unprompted by me). It feels like being stabbed with acid being poured on at the same time. Unsexy. Another symptom is what I term "walk around pain" of chronic burning as you go about daily life. Finally, in more extreme cases where the pelvic nerves are involved, primarily the pudendal nerve, even sitting hurts because you are sitting on an aggravated nerve.