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."

Physical Therapy Continued...

I have been in PT for 3 weeks now. An overview:

Week 1 (2 sessions) --
I didn't go in with this mind set, but the therapist focused on my bathroom habits. I had a chart to fill out of what I ate, drank, how much, how large my pee was, how often I pooped, etc.  to reduce "JICCING" meaning "just in case-ing" going to the bathroom. I learned that my "how to poop" back-up is called "splintting" medically (see my poop blog). Her point was that people with pelvic pain have weird bladder/bowel function.

Then the Q-tip test and looking at the balance of my hips and working on that. Also pressing around to find "trigger points" and tight fascia (fascia is the stuff that is white when you are pulling apart a chicken). I hurt later that day and for another day.

Week 2 (1 session) --
She introduced me to working on my transverse abdominus and Kegels. Transverse abdominus is a muscle that is shaped like a smile from one hip bone, scooping down to the pubis, and then scooping up. You activate it by breathing in and then making a hissing sound while trying to contract this muscle. Kegels are more vague to me. I tried. Both of these were incorporated into my normal P.T., meaning I did the same exercises, but tried to do the breathing/contracting. Oh!  I was in pain - worse pain than I have been in for a while going down my outer and inner legs and on my butt. Sitting became difficult again. I had the full-out sob-cry at home after it was still bad 5 days later. I cut doing the Kegels and transverse abdominus contractions and the pain slowly resolved.

Week 3 (1 session) --
I take charge of what I will and will not do. I had asked her her goals for me the week before and she had rattled off 18. That overwhelmed me. I talked to my therapist and then told my P.T. that the list was going to go down to two goals: getting my ankle working in the context of my pelvis and calming my nerve pain. Anything else is a bonus. I also told my P.T. I would no longer rank my pain on a numerical 1-10 scale and I would no longer participate in the pee/poop efforts. So there.

Something I had thought to ask for and had not yet done, was to do biofeedback. No previous therapist has done that and it seems like a very good idea for me. And it turned out that that was her plan for the day. She put the stickies on different pelvic floor muscles (externally, no in my vagina) and it measured electrical conductivity which is a measure of muscle contraction. "Wow, you are tight." No duh. But she had me watch the number while trying to relax. She put me in several different positions to see in what position I am the least tight (cross-legged for me) using the biofeedback machine. Then she had me try to Kegel. This time, there were two numbers. One for the Kegel and one for my overall muscle tightness. Up the Kegel number while maintaining the overall muscle number as low as possible. Didn't work out so well. My homework was to try to do a few Kegels and stop if I couldn't do it without involving my butt.

Finally, she taped my butt cheeks together to make my pelvis more stable and give some muscles support (this is in addition to the Serola sacral belt I always wear). The tape is 9" high and the lowest part of it is an 1 1/2" above the anus up to an 1" below the beginning of the butt crack. Guess what? No (or almost no) leg pain. So there is something magical about this taping for me. My husband has asked me how many days I am going to wear this bandage and the answer is as long as possible. It doesn't feel great, but is much better than burning pain. She used a special kind of P.T. tape and I will find out the name of it.

My ankle started behaving itself day-3 of wearing the bandage on my butt. I have been able to exercise everyday since I got the butt bandage.

As an aside, my psycho-therapist has asked me not to do web-research on vestibulitis when I am in pain. I get despondent, obsessive, and hopeless. No good can come of it she says. I say that this is when I am most motivated!

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