My history

I guess I should write about my medical history. It is pretty uneventful. Unlike a lot of other vestibulitis sufferers, my history is negative for chronic yeast infections (have only had 2-3 in my lifetime), UTIs, interstitial cystitis (IC), IBS, fibromyalgia, migraines, and allergies.

I'm currently taking gabapentin (oral) 900mg/day split into 3 doses and desipramine 5mg/day. When the pain is really bad I sometimes take a Vicoprofen.

Who knows what causes vestibulitis? I wish I knew, but the cause has not been definitively established. Some claim it is caused by out of check hormones, but I don't know about that. I haven't been on birth control for any period of more than a few months in my life and I rarely have painful or heavy periods. My cycles are so normal that I could tell you what day of the month I will start on in any given month and be within +/-1 day. Also, I had all my hormone levels checked by an endocrinologist back in 2004 and everything was normal.

As far as I know, I've always had vestibulitis, though I can use tampons without pain and that has also always been the case. I was originally diagnosed with this condition in 2004 by Susan Kellog-Spadt (or Spadt-Kellog, I always forget). She is a nurse practitioner in Philadelphia; she also has a PhD in sexual medicine. I think that is why in other blogs or forums people refer to her as Dr. NPs can be just as amazing, if not better than some doctors.

At the time I saw her she was really into using 0.025% capsaicin cream as a treatment because it supposedly depleted the area of substance P, a neurotransmitter associated with inflammation and pain. I don't know how effective this treatment was because I didn't try it for very long. She also had me applying estrogen and steroid creams once a day. She really pushed the capsaicin but she also mentioned to me that my other option would be steroid injections. At the time, that scared me so I chose capsaicin.

I basically gave up and ignored the problem as much as I could. I used lidocaine to deal with painful sex. My gynecologist down here didn't know anything about the condition-- I seemed to know more than she did, which was so so frustrating. She even made a comment one time when I asked for lidocaine that I thought was really inconsiderate- she said, "well that must make it difficult for spontaneous sex." I never saw her again after that.

Then in 2007 I went to see another doctor, one who specialized in this and was at one of the major academic medical establishments here. Before he even did the physical exam he told me that the only way to cure vestibulitis was through surgery and then proceeded to draw an illustration of how the surgery would go. That scared me to death and I never went back until, finally, last year I couldn't handle it anymore. This time I found the right doctor, though.