I had my vestibulectomy in November 2010 and wrote about the experience (pre- and post-op) on here and wanted to come back an update you all.
I initially had great success and progressed through the dilators with burning only in one specific spot (instead of the whole thing). I got up to the biggest size in the set and could take that comfortably. It felt like an 80% improvement from pre-surgery.
Just recently I started using the dilator again (because I have an appt with my dr coming up) and OMG it hurt so much. It felt just like old times except that I have trouble discerning whether what I'm feeling is a burning pain or a stretching pain. It seems to hurt the most in the 6 o'clock position. I even tried it while taking TWO of my left over Vicodin and it hurt a lot. I know last time I saw my dr I asked her if excising more tissue would be a possible solution and she said no. She said I could go for a second opinion but honestly if she doesn't feel comfortable operating and I go to another surgeon and they say they think I should have more surgery, I will be really dubious.
We are going to try steroid shots at my next appt (next week). I hadn't tried those prior to my sx. I also read a study about having multiple nerve blocks injected to the site over 3-6 months and how those had proved efficacious in one group of women but I think those would need to be done by a pain specialist under the guidance of radiology. I will ask her about those.
I'm not sure what's going to happen but I'm very skeptical now about any new treatment for this awful condition. I wonder if I will ever know what it is like to have pain free sex. I am scared because I feel like my dr is ready to hand me off to someone else if/when these steroid shots fail... last time she mentioned having me see a pain specialist. I really don't want to go to one though-- I feel like they will just prescribe me some opiates and that's not what I want. I don't want to be so out of it that I don't feel pain when I have sex...
I've already tried the tricyclic antidepressants... also before the surgery I wanted to try capsacin again (I had tried it in 2004 to some mild success) but holy hell it hurt like nothing I had experienced before (even my previous capsacin trial). It was the same concentration but probably in a different base, but I can't imagine the base making THAT much of a difference. I even put 5% lidocaine on to the site beforehand (as my dr had instructed me). I really like the theory behind capsacin but basically I would need to be on some really strong painkillers before trying that again.
I think my vestibulectomy was not completely successful. It seems that the nerves have re-grown (something that is not predictable).
