Health Organization for Pudendal Education

Violet M wrote:Calluna, I think you are right that we need to get past the embarrassment of discussing PGAD because it's a medical condition/disease and nothing more. The only reason I talk about it though, is because I know how badly other sufferers need support and advice. It was one of my earliest PN symptoms and by far the worst symptom I experienced. I had severe burning pain and knife-like pain also but neither were as bad as PGAD. Thank God, I am 99% cured of this symptom since having PNE surgery.

Before surgery, I took an SSRI antidepressant (lexapro) that took away about 75% of the discomfort. The problem was I had to see a psychiatrist in order to get a prescription for it because none of my other docs were comfortable prescribing SSRI's. The psychiatrist didn't have a clue and actually wondered to the therapist as to whether I was a nymphomaniac. I can laugh now but at the time it wasn't very funny because between PGAD and PNE I wasn't getting much sleep at night and could hardly eat. Clonazepam was another helpful drug -- I was unable to get to sleep without it. Over time you can develop a tolerance to it so I think it should be taken on a PRN basis rather than around the clock.

I used to be a member of Jeannie's forum, the one you linked to above. There were quite a few women on that forum who thought their PGAD was the result of discontinuing SSRI's but I knew that wasn't my problem because I had never taken an antidepressant before. I was one of the few people in the group who believed that nerve damage/irritation might be the cause of PGAD symptoms. Eventually I got tired of being a lone voice for PN/PNE on the forum and I just didn't fit in there because having surgery for PGAD was not looked on favorably. I noticed it's still not on their list of treatments that you copied. If I had listened to them, I would not have had PNE surgery and I would probably still be living in torture. But in fairness to Jeannie, I think she truly does care about people and is trying to help. I just did not agree with her approach.

I also did not like the media coverage some of the women were agreeing to. It was far too sensational -- things like "Woman has 800 spontaneous orgasms a day". Believe me, there were some in the media who took that and ran with it!

I tried a TENS unit before surgery. I think it made my symptoms twice as bad. So, obviously, what works for one person may not work for another.

I noticed that in the treatment list you copied from Jeannie's forum, nerve blocks were listed as one of the options. Here are my thoughts on nerve blocks and PGAD. For starters, nerve blocks can cause PGAD. I know one women who developed severe PGAD from steroid nerve blocks and it has not gone away yet. There are others I know of who developed PGAD temporarily from nerve blocks but eventually it subsided. I think nerve blocks can be a valuable tool for diagnostic purposes but I would go for a Hollis Potter MRI before I would go for a nerve block because there are no risks of getting worse.

If you are a person with PGAD lurking on the forum reading this thread, I just want you to know that you are not a freak, it's not all in your head, and there are treatments that can help. So keep your head high and keep searching for answers.

Violet

Violet M wrote:I only know one person who believes they got PGAD from nerve blocks. I think the important thing is not to have too many. Prof. Robert says no more than 3.

Violet