Health Organization for Pudendal Education

Balenul, you are very young to be dealing with this. My prayers are with you to get better. What medications are you thinking of trying instead of zoloft?

Violet

Ty Violet.Now i will try a more advance machine for transcranial stimulation and maybe ketamine....if it won t work i will see what else i can try.will start therapy in 2 weeks.will keep my journey updated

Ketamine really helps some people, so hopefully it will work for you.

That's an interesting concept to try trancranial stimulation -- is it more for pain or for PGAD?

Violet

Tms for pgad.ketamine i am not so sure anymore since it can affect the bladder alot.And i had huge urinary problems as you know , still have sometimes so i must think alot abou is.so people had tms for pgad yes.

You heard about ketamine helping people with pgad ? If so maybe it worth risking after all.anyway i noticed most pgad sufferers had urinary symptoms before pgad.and still have both after

Summer wrote: ↑Tue Jan 16, 2024 11:09 am Hello Violette

Balenul ,

I read your very long message perfectly: your important medical journey: the doctors, the trips to several countries and your various rather complicated health problems

But sorry, I have no ideas, no opinions, no advice, so nothing to tell !


What's more, you told me you had a perfect knowledge of Pgad syndrome! So I won't be of any use to you.

As for your other pathologies, I have no opinion and no expertise.

I wish you courage and solution of healing to your various pathologies

Now I'm definitely leaving the subject.

End

Ps : https://www.france-assos-sante.org/2018 ... -pudendal/

Summer a question pls.doctor Desvaux is still active ? Some said he retired.i would like to talk with him if he is still active

Balenul wrote: ↑Thu Jan 25, 2024 6:56 pm You heard about ketamine helping people with pgad ? If so maybe it worth risking after all.anyway i noticed most pgad sufferers had urinary symptoms before pgad.and still have both after

I've heard of ketamine helping people with pain, but I haven't heard of it helping people with pgad, unfortunately.

Hey there,

I'm female, in my mid 30's and living in Germany. Please excuse my english. First of all I'm happy, that this forum exsists. That makes me feel less alone. I first experienced symthoms 17 years ago. Fortunatly they disappeared after a couple of month. The symthoms came back in 2022 and stayed for a few weeks. Now I'm struggeling since the end of 2023.

It all startet when I was sitting on the toilet. I felt an stabbing pain between the uretha an the clit. Since that day I have a constant burning, sometimes stabbing pain in the clit, that ist pulling into the bladder. Sometimes urgency and a little bit pain during urination. Also I feel a tingling in my labia majora and sometimes a twitching in the vagina. I would compare the feeling to nervous eye twiching. Sometimes there ist also a twiching between the clit and uretha. Last week it startet with unwanted arousal, that lastet a few days. The days before it all startet, I was doing a some exercises and streching. Maybe I trapped the dorsal branch while doing that.

I can not walk for a long time because that area ist so sensitive. Of course I visited a lot of doctors the last weeks: gynaecologist, family doctor, urogynaecologist, dermatologist, radiologist (MRI) and neurologist. Since autumn last year I suffer from depression. That's why I also talked to an psychiatrist and psychologist. Furthermore I visited an osteopath and „Pohltherapie“. I saw a PT for the pelvis. She told me, that on one side my musculus obturatorius internus "feels like a spaghetti". She reccommended me a pelvic floor wand for trigger point realease, which I bought. But I'm afraid that this makes it worse.

Right now I'm taking Pregabalin/Lyrica 75 mg. I try to slowly upgrade the dosis. The worst thing is the pain in the clit. In germany is just one doctor, who is treating that kind of pain with blocking nerves by cryoneurolysis. This is lasting for a few months up to two years. In the meantime the nerve can heal. I'm thinking about that, because I really want my life back. Of course you are not able to orgasm anymore. But right now it hurts so much, that I don't want to feel anything down there. Unfortunately I really can't tell if it is just clit pain that feels like urgency or if the bladder is also involved. Yesterday I asked in a huge clinic specialised in urogynaecology and pelvic problems, if it is possible to numb just the clit or bladder for diagnosis and they told me they can't do that.

What do you think about cryoneurolysis. Has anybody tried it? Do you have any other recommendations?

Kind regards
Holly

Holly,

I think cryoneurolysis is the same as cryoablation. I tried this for the PN about 8 years ago and it was unsuccessful and caused a huge pain flare for me. I haven’t really heard of anyone who improved from this procedure, unfortunately.

Stephanies

HollyWithHope wrote: ↑Sat Feb 17, 2024 5:07 pm Yesterday I asked in a huge clinic specialised in urogynaecology and pelvic problems, if it is possible to numb just the clit or bladder for diagnosis and they told me they can't do that.

There are doctors who can do a dorsal clitoral nerve block (one branch of the pudendal nerve) for diagnostic purposes. I don't know if there is anyone in Germany who can do this. You could try contacting some of the European doctors on the list at the following link: https://www.pudendalhope.info/european-physicians/

Exercise could be making you worse. It is what got me into trouble. Also, using the wand and doing internal work could be making you worse. I couldn't tolerate it before my PNE surgery. So my instincts told me to stop internal work because it didn't make sense to irritate an already irritated nerve even more.

Violet

I had the same experience as Violet with internal PT and using the wand. Both caused increased pain for me.

Stephanies