PGAD - persistent genital arousal disorder

[Aple2017]

Thank you Aristocat and Violet for the replies. I apologise for not responding. I felt a bit depressed and decided to take an advice from my gp and gyno and accept that it is all in my head. Byt after going to a psychiatrist/neurologist I changed my mind. He pretty much told me the same thing --it was my anxiety that was causing the symptoms. He did perform a "test" which involved jumping on one and another leg. He prescribed Lycra for anxiety. This changed my opinion. Who performs such tests and then concludes a diagnosis --anxiety? Ridiculous!
I wrote an email to a clinic in Netherlands as I cannot seem to find Dr Krüger in Hannover. I am still waiting for them to reply.
Violet, I am not sure if this is a pudendal nerve issue as I read that synptoms invoved pain and I do not experience it.I do know that this issue has been causing so much distress and problems in my relationship. I do want to have sex with my husband but this hypersensitivity is stopping me. I mentally become aroused bit these feeling down there just won't let me act upon it.

[Hopeitworks]

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

Nerve blocks can cause PGAD??? Oh my now I am really at a loss. I figured I would request a nerve block while test results come in. I really dont think I can handle this at all! I see the doctor on the 21 and I just hope I dont end up in the hospital befire then due to depression.

[Violet M]

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

Violet

[Hopeitworks]

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

So what happens when you can't have anymore nerve blocks?

[Violet M]

Well, there are other treatment options. I just don't see nerve blocks as a permanent solution because of the risk of damage from the steroid and I don't know of very many people who have gotten long-term relief from nerve blocks. Some doctors consider them a valuable diagnostic tool though. You can have nerve blocks without steroids but you also have to consider the risk of the nerve being nicked by the needle and scar tissue forming from a lot of nerve blocks. I had 3 nerve blocks and didn't get any long-term relief so I didn't pursue anymore.

Violet

[Aple2017]

Can irritated pudendal nerve be due to pregnancy? I read that it could be damaged during childbirth, however I had a pretty quick labor. I also do not understand what is the difference between irritated nerve and neuralgia. Can someone explain? Thank you.

[Violet M]

There have been a number of women who posted that they developed symptoms during pregnancy.

I think this website has a good definition of neuralgia. http://www.healthline.com/health/neuralgia#overview1

"Neuralgia is a stabbing, burning, and often severe pain due to an irritated or damaged nerve."

I think you can look at it as neuralgia being the symptoms you develop when you have an irritated or damaged nerve.

Violet

[Aple2017]

Thank you! I guess it is not that then. I do not have severe pain but I do have hypersensitivity which if course borders with pain. Anyway going to the Netherlands soon to find out if my pelvic floor muscles are too tight. Which of course us weird considering I had a baby.

[Violet M]

Good luck with your trip to the Netherlands. I would be interested to hear how it goes for you.

Violet

[sadie]

Aple2017
Hi sorry to hear you are having problems . Yes giving birth can irritate the pudendal nerve. You are not alone. There is a member here on the forum that had sever pgad after giving birth. That was years ago, and she is not 100% now, but she is lots better, as I just spoke with her last week. Nerves take time to heal and what this journey has taught me is ' patients" . I am sure you will find the right doctor and between others stories here on the forum, and a great doctor that really listens you, will be on your way. Hope you are better soon Sadie