PGAD - persistent genital arousal disorder

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN

Re: PGAD - persistent genital arousal disorder

Postby Violet M » Sun Aug 20, 2017 5:00 am

Aple2017 wrote:I hooe someone can help me out. I am not sure if I have pgad or not but it is the only forum that I was able to find so far that talks about this issue. I started getting weird symptoms when i was pregnant. The symptoms were overstimulated, and hypersensitive sensations in clitoris together with a feeling of UTI but without pain(constant need to pee). I also get this weird painless, tickly spasms inside vagina and a weird urge to pee like feeling in my pelvis. I asked my OB about it but she said that possibly it was due to pregnancy, hiwever she had never heard anybody describe symptoms like that. Fast forward to today and i am 3 months postpartum and the symptoms are still there. I have been to my gp and he thinks tjat it is my anxiety. I have been to the OB amd she excluded infection and so on. She just told me that it, was all in my head. My question is (and i know you cannot diagnose) could pgad manifest itself with these symotoms but without an arousal feeling. As i have not gotten an urge to orgasm; on the contrary it felt and feels overstimulated? Thank you im advance.


First of all, I do not believe it is all in your head. When a doctor insinuates that it's all in your head my first reaction is that they just aren't very well informed and have no desire to figure it out. I would ask your GP or OBgyn to refer you to a physiotherapist who is trained in treating pudendal neuralgia and chronic pelvic pain so you can get your pelvic floor evaluated but someone who knows what they are doing. Since the pudendal nerve innervates the clitoris, bladder sphincter, and lower 1/3 of the vagina you can put that information together with your symptoms of constant urge to pee, clitoral overstimulation/hypersensitivity, and tickly feeling in vagina and you have to at least consider that it might be that your pudendal nerve is irritated. It could just be due to muscle tension in the pelvic floor muscles and some myofascial release by a good PT might help. At least that is one place to start and see if that treatment helps.

If you are not having arousal, it may not meet the criteria for a diagnosis of PGAD, but it could meet the criteria for an irritated pudendal nerve. Sometimes it's hard to draw the line between them -- since overstimulation is very similar to arousal, right?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Sun Aug 20, 2017 5:02 am

Krl410 wrote:About 3 or so weeks ago I drove 5 hours to see Dr. Echenberg in Pennsylvania. He was by far the most knowledgeable doctor I have seen about PGAD and he spent 4 hours with me on my first visit. He educated me on Pudendal Neuralgia, PGAD and Vulvodynia.
He prescribed me a few creams, medications and even told me to follow a low acid diet, which I have been doing since then. I haven't felt better yet, but I know this isn't going to be a miracle cure and that it'll take time for me to feel better with these changes.
If anyone can, go see Dr. Echenberg. He's fantastic, understanding and so compassionate to this horrible illness.


Completely agree with you -- Dr. Echenberg is a very caring person and has gone the extra mile to try to help women with this dreadful illness. Wishing you luck with these treatments.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: PGAD - persistent genital arousal disorder

Postby candice » Sat Sep 02, 2017 5:22 pm

Hello everyone!

It has been a long time since I last posted. Update: I think I can safely cross out this condition, not because I am back to normal but because I think it is a external problem. The symptoms I now feel are actually quite different from what I experienced as compared to the past. I have consulted two doctors and one gynecologist. The first one said one side of the vulva was a little swollen and red and prescribed antibiotics. I felt a little better after that. Unfortunately, the discomfort did not go away and I consulted a second doctor. He said that it just looked a little red and prescribed another course of antibiotics. It still didn't go away. A few days ago, I consulted a gynecologist. After some prodding and probing, she said it looks completely normal and just prescribed one oral fungal tablet to take. Right now, the symptoms I am experiencing are: itchiness, some hypersensitivity, some ticklish feeling around my genitals,anus and somehow the lower back, and just general discomfort in my genitals. Although I no longer think I have this condition, I am quite perplexed as to why I am not healing properly. Right now I will continue to monitor and maybe try out some home remedies first before seeing another doctor. I will update again soon.

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Re: PGAD - persistent genital arousal disorder

Postby Aple2017 » Mon Sep 04, 2017 10:04 am

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.
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Re: Sexual arousal symptom

Postby Hopeitworks » Thu Sep 07, 2017 6:57 pm

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. :lol: :lol: 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.
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Fri Sep 08, 2017 3:15 am

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
Last edited by Violet M on Sun Sep 10, 2017 4:07 am, edited 1 time in total.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: PGAD - persistent genital arousal disorder

Postby Hopeitworks » Fri Sep 08, 2017 5:25 pm

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


So what happens when you can't have anymore nerve blocks?
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Sun Sep 10, 2017 4:12 am

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
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: PGAD - persistent genital arousal disorder

Postby Aple2017 » Sun Sep 10, 2017 8:36 am

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.
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Mon Sep 11, 2017 5:37 am

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
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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