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."


Inflammation and Allergies

So, I have lots of signs of general body inflammation: genital skin pain, bursitis in my hips, and arthritis in my hands. I also have allergies and it occurred to me that I should see an allergist and find out what I am allergic to right now (allergies can change). So I went to the allergist a.k.a. an immunologist. Usually when you see an allergist, you get your pinpricks of allergens on your back, get a list of things to avoid, and start doing diet or lifestyle work-arounds, meds, or injections. I decided to grill him whether there was a connection between allergies and other inflammatory diseases. He is up to date on the data and said that there is not enough research. For most people, there seems to be no connection, but for som people it seems their allergies and other autoimmune illnesses are connected.

I have taken my anti-allergy steps and feel so much better in the morning without being congested. Maybe it won't "cure" what else ails me, but it feels good anyway - a healing experience in itself.

Update: I have reduced my allergic load by cutting out the food and environmental factors that flare me. I have cut out the foods I respond to: cranberries, chocolate, apricots, tomatoes, sweet potatoes. I have added mite covers on my bedding (google this to learn more), moved my bed to a wall that I am confident doesn't have mold - my bed was up against a 64 year old shower and tub wall, and moved a plant out of my room. I can't believe the difference. No sore throat, no post nasal drip, less swollen eyes. I have to think it is helping my vulva

Sacrum Stabilizing Exercises

I just posted my current exercises on youtube.com. Use http://www.youtube.com/watch?v=KIBYVTJEqzs or "sacrum stabilizing exercises" in the search box. My "channel name" is vestibulitis. The exercises are really helping my sacrum pain. That, plus the serola belt, plus the shoe lift are getting me pretty far. The biofreeze, regular exercise, Klonopin tablets (not the pills but the oral tablets), upped anti-depressants, and avoiding "unwise activity" are getting me the rest of the way there most days. I am feeling much better and can do more.

"Unwise activity" is a term used in the book "How to be Sick"; I found this book helpful in having mental strategies when I am in pain. Unwise activity in my life can be gardening, cleaning, cuddling in bed, and sitting down too long, as examples.