Health Organization for Pudendal Education

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

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.

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

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.

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.

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!

Aristocat

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.

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

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

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.

candice