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 Jul 30, 2017 5:25 am

I used to have terrible itching. Since recovering from PNE surgery it is mostly gone.

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 shanny63 » Sun Aug 06, 2017 4:08 am

Hi everyone, I'm having the flare from hell at the moment, actually the last 5 days, bladder spasms, urinary retention and of course pgad and mini spontaneous orgasms..i am on amytriptilline but I'm considering taking slow release tramadol..has anyone had any success with tramadol? Or should i stay on the amytripltilline I'm only on 25mg and its not really doing anything to help me... :cry:
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Re: PGAD - persistent genital arousal disorder

Postby April » Mon Aug 07, 2017 12:30 am

Hi Shanny,

I think tramadol has helped me. I don't have pgad---my pain is only in the perineal branch---but I think these meds may work similarly for pn and pgad. A couple of months ago, I started on four different meds that are working together really well. Before dinner, I take 50 mg nortriptyline (which is similar to amitriptyline), 10 mg of vesicare , and in the morning I take 600 mg of gralise and 50 mg of tramadol. I've never heard of a slow release version, but I'm going ask about it. It's a good idea. I take it in the morning, because it actually gives me a touch of insomnia if I take it at night. In any event, I think it is helpful.

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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Mon Aug 07, 2017 5:16 am

Shanny, go back to page one of this thread and the first post is by Calluna. She said that tramadol helped suppress PGAD for her. I never tried it but I think it is worth trying.

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 ocm24 » Tue Aug 08, 2017 4:42 pm

Anyone else feel crazy when it comes to these symptoms? I know deep down I'm not, mainly because of these forums and finally finding a good doctor. but I often wonder if it's all in my head and what's wrong with me.
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Wed Aug 09, 2017 4:48 am

Well, there was a very short time I wondered about it before I read about pudendal neuralgia. It was after my neurologist told me to see a psychiatrist. I thought maybe I was going nuts but it turned out I wasn't.

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 » Sat Aug 12, 2017 9:56 am

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.
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Re: PGAD - persistent genital arousal disorder

Postby Aple2017 » Sat Aug 12, 2017 9:59 am

I am sorry for spaming. I just do not k ow who to ask since both of the doctors I trusted could wrote it off as it was all in my head. And i did ask both of them about pgad but they have never heard of it. I am from Germany and really have no clue who else to ask.
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Re: PGAD - persistent genital arousal disorder

Postby Aristocat » Sat Aug 12, 2017 4:55 pm

Hi Aple 2017,

maybe you look at the German RGS (Restless Genital Syndrome) forum. In Germany PGAD is often called RGS. http://regs.aktiv-forum.com/.
As far as I know, there is no doctor in Germany who has a deeper insight into PGAD. Dr. Philippsohn from the University of Hannover has been busy with this, but is no longer there. If you look for her name and PGAD, you will find a report she has written. In Hanover there is now Dr. Krüger with whom you can make an appointment. In Hannover they do not treat you. They just have a talk to you and say if it is PGAD. They have a similar opinion to Prof. Waldinger in Den Haag who has done a lot of research. On the Dutch website: psas.nl you will find a lot of scientific articles. I don't know where you are living in Germany but to the Netherland it isn't so far.
It is very difficult in Germany to find a doctor who really knows. As I have heard, in Germany there is not the official diagnosis PGAD. It is not recognized as a disease.
My personal opinion is that the idea of "arousal" in PGAD is not right. So I think RGS is a better phrase. In the meantime I know a lot of women suffering from these overstimulated feelings which often change into pain. PGAD (RGS) has a lot of faces, from overstimulation to pain to arousal and to difficult to explain feelings.
I wish you much courage because the knowledge of the doctors is a disaster...........and of course, it is not all in your head!

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Re: PGAD - persistent genital arousal disorder

Postby Krl410 » Sun Aug 13, 2017 7:11 am

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.
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