Health Organization for Pudendal Education

I'm six months out from left sided PN surgery with Dr. Hibner, and my PGAD is still going strong. I'm also having horrible rectal pain and vulva burning. I don't know what to do. I don't even feel alive anymore; I just exist.

shljk, what are you currently taking, if anything, to help you with your pain? I've been lucky enough not to have any rectal pain but have had bouts of the vulvar burning, etc.. I'm on a low dose of Lyrica which helps for the most part but I did get some breakthrough pain last month.. I'm not too anxious to increase my dose though, because of the confusion it causes me, and now the depression.. I've had some days where all looks hopeless and I just want to curl up and sleep.. I hope your docs have something that can help you with your pain..

marg wrote:H at the moment I am wondering if anyone can explain why my 'outbox' shows messages when I believe that they have been sent (or hope so any way) The 'sent items' don't include these messages and they were important for me to send as private messages ..... any ideas??

If it's in your outbox it just means the person you sent it to hasn't opened it yet. Once they open it then it goes into your sentbox.

Hi,I'm Ines. 24.jahre old and from Austria.
Perhaps I may join you?

Please excuse if my english is not perfect ....

I have been suffering from constant genital arousal to 5 years with restless legs and irritable bladder connected. Restless Genital Syndrome now also known (formerly pGAD)

I have a couple of months before self-diagnosed. all doctors always said they did not know what I have, it is mentally. But I did not give up and I search again and again for years in the internet for my symptoms.

I had restless legs, I knew only as the standard for RLS did not help, I was frightened and desperate.I had been almost a hypochondriac. I still remember exactly how it all started one day. I felt anxious, exhilarated and excited. I can not describe. My life changed from one day to another ... I did not know what was wrong with me, could not sit still and not thinking clearly, nothing more. I lost my job, and much more into a deep depression. This time was then someday over and the symptoms were suddenly better. the worst that is all of this excitation. now i had symptoms for about 6 months 24/7. a heared from a doctor in my country that makes nerve-blocks,maybe this will help?

He also tell´s me that EMLA creme is a good alternative. my doctor gives me also clonazepam 0,5mg,it helpes very good for sleep but not for the arousal feeling. how long takes an episode of excitation with you?

I have 6 months and I fear it no longer goes away ...

Do you have any treatment or a tip for me that makes my day a bit better?


thanks a lot , ines

Hello Ines,

Welcome to our forum. I'm sorry you have suffered so long and that your doctors have told you it's mental.

When I had PGAD with overactive bladder it never went away until after surgery -- and surgery was not an immediate cure but it took many months to heal. Nerve blocks did not help much but surgery did.

For some people PGAD comes and goes but for other people it is constant all the time. I also have restless leg syndrome but if I walk 2 miles a day it's much better and I hardly even notice it.

Are you going to see Dr. Aszmann?

Violet

Hi Everyone,

Thanks so much for all of the insights and sharing. I certainly hope that everyone finds ways to get significant relief. Violet, thanks again for your wonderful responsiveness. I'm just checking in with two questions:

1) Does anyone know of a man that has PGAD? My father is suffering horribly, as all of you are or have at some point in the past. It's harder for my father to identify with women. Thus, I'd love to identify men (or at least one man!) that has this issue.

2) Has anyone had a spinal cord stimulator trial or know of someone who has?

Thanks so much in advance for any information you may be able to provide. I'm hopeful that all of you will find treatments that will benefit you soon!

Take good care.

Linda

Linda, I've known men who had it. truth_seeker6 posted awhile back but he's not posted in awhile. I've PM'd with him not too long ago so it wouldn't hurt to try sending him a PM.

There were others on our old website too.

Thanks, Violet. I'll try to contact him! : )

Linda

Hi Violet, thanks for your answer!

I have been suffering for almost 7 months of the symptoms. before they come over and go. I hope it disappears soon. I have found a physician in my long who knows this disease. I'm going in 2 weeks with him, we try a nerve block. did you experience that?

if the block works and it helps, then he will inject botox.

It is my only hope for time.

as it was with you, it was always there and you had pain, too?

The biggest problem is the constant excitation ...

thanks, crystalline

Crystalline, yes I tried nerve blocks but they didn't help much. I hope yours will be successful.

At first pain was very mild but later it became severe. It is not a good feeling to have pain and PGAD.

Violet