Health Organization for Pudendal Education

Hello,

I have read here silently for a few months and gotten a lot of tipps (sorry my english, am from Germany)....

So I wanted to share my success story with PGAD-sufferers but many PN-sufferers can profit from that knowledge...

I can happily tell you that I have full remission and my PGAd is gone.

Please excuse, that my english is not so good, because I am from Germany, but I think nevertheless all of you would like to know how it came to this point.

I suffered since three months of this condition and at first I was horrified, because not many german websites exist about this and in the international websites I only found comments, it was uncurable. But I can tell you, it is

I have tried many meds, there were many visits at different hospitals and doctors and many examinations (MRT Head, MRT Pelvis, Blood, Hormones, Pudendal Block etc. pp) but nothing was found, what explained the symptoms (arousal, unwanted orgasms, pain, anxiety).

But the symptoms were there, I did not imagine them and had a husband and a psychiatrist and neurologist, that believed me.

THe causes that could have been in my case war:
a bicycle accident
driving on a bycicle
the menopause
i took opipramol and stopped suddenly
i took estrogen and stopped suddenly
iron defiency (is known bei restless legs to be)

So as you see, too many causes to really know what caused the PGAD / Restless Genital Syndrome.

Nevertheless I started therapy, after trying many, this is successful and lead to full remission:

3 times a day Pregabaline / Lyrica a 50 mg (morning, midday, evening)

30 mg Duloxetine (Cymbalta) shall bei 60 mg in the morning in two weeks, beccause
At the moment I take 75 mg Venlafaxine (Effexor in english?), because I must first withdrawal that, when I have done this I will take 60 mg Cymbalta)
I think Cymbalta is responsible for most of the success.

Iron
1 tablet per day for my iron defiency

Magnesium Orotat (i dont know how this is called exactly in english)

Keltican forte (is this only in Germany availabe, it is Vitamin B12, folic acid and UridinMonoPhospat (dont know what this is called in english) and it helps the nerves to heal, could also be good for pudendal neuralgia.

Then tablets with a combination of all Vitamin B-Types (Called Vitamin B komplex ratiopharm in Germany)

It took a while, before it worked, luckily I had no side effects but obstipation, which I could do something against .
But you must be careful, because some of the meds have suicide danger as a rare side effect, so tell your relatives about this, that they watch you a little bit. ANd in some patients the side effects begin,, before the good work starts, so be patient.

I can sleep with some valerian tablets and with a little bit seroquel, which I will reduce to the valerian soon.

I can give you no health advice, because I am no doctor, but I can tell you now I am happier than I have ever before felt in my life, because the Cymbalta helps also for my depressed mood.

Wish you all best of luck and soon to fell well again.

Hi Carla,

That's wonderful news! I'm sure it was a huge relief for the meds to work so well. Do you think you'll have to be on these meds for a long time, or do you think you can go off of them?

April

I think I will have to take them for months, because I have read that you should take antidepressants for at least 6 months, and then you have to take the doses down slowly.

But I am fine with this, because my anxiety and sleeping problems are cured with this medication as well, so I am at this time not at all thinking about not to take them any more

What I have not mentioned is, when I got a flare, I took Emla Cream as well as a topical medication.

My doctors have read about the medicine especially about the working of the duloxetine in this article. If someone is interested, I could translate for him, a part is also in english.

https://www.mh-hannover.de/fileadmin/kl ... ologie.pdf

Hallo Carla! Happy to hear about your success ! I miss Germany so much, I used to go to Drogerie Markt in Frankfurt and buy everything hahah! You have a beautiful country and great healthcare.
Thank you for sharing, I am ordering the Keltican Forte

Hello Mary Jane

I think you are writing the "dm" Drogeriemarkt, I love it also and buy a lot of cosmetics there.

Yes the healthcare is open for everyone, that is a good thing.

I have also found another possible cause for the / my PGAD:

My uterus was very big and had a very big myoma in it, so it pressed possibly on some/one nerve.

Carla,

Did you have your uterus removed and did it help? I have been advised to do this by two excellent doctors who are not primarily PN doctors but understand it, but I am terrified of ending up in worse pain as I already truly have more than I can handle. I also have several issues at the spine that may be contributing and it is hard to know for sure.

Thanks,
Stephanies

I try to explain it in my bad english, maybe you google also the german words, so that you understand me correctly.
Uterus was removed (in German Gebärmutterentfernung), also both tubes (in German Eileiter) were removed.

But my Cervic (in German Gebärmutterhals) was NOT removed.

The uterus was removed not because of cancer, but I had a big myoma, which also made the uterus very big.

The operation was done with only three holes in my belly, so not by the vagina. The uterus was cut in little pieces and then they removed it through this really little holes. I was only three days in hospital and had already no pain from the operation on the second day and never since then. That are the good news.

Bad news was: PGAD was still there. But the doctor told me to have patience, nerves need time to heal for a year.. I was but too impatient to wait a whole year and started with the medication to get rid of the PGAD. And that worked.

As you experience pain, have you tried a heating pad between your legs, that also worked wonders for me. And duloxetin and pregabalin both work against nerve pain.

Thank you for the reply, Carla. I am happy you are doing well now.