Dealing with Pudendal Neuralgia

Good day.

Please excuse my American, it isn't the best. I was born and raised in Switzerland.

For two years now, sitting has been a nightmare; basically, I can't sit at all.

The pain is centered on both sides near the ischial tuberosity—not sure if that's the right term. It also hurts on both sides of the perineum. When I'm lying down or walking, I feel fine.

MRI shows nothing. Physical therapy was a bust, and so were the cortisol and steroid injections.

Neurologists and urologists claim everything is normal. In Switzerland, there are only two specialists for pudendal neuralgia. I saw one a year ago, and he ruled it out. However, my primary doctor is fairly certain there's an issue with that nerve and is going to refer me back to a specialist.

So, here’s the question: Do you know anyone in the US who might actually be able to help? I realize the healthcare system here in Switzerland is likely superior... but you never know.

Thanks and regards,
Anthony Collins2

Anthony Collins2 said:Good day,

Please forgive my American; it isn't quite perfect. I was born and raised in Switzerland.

For two years now, I've had terrible issues with sitting, and lately, I can't sit at all!

The pain is on both sides near the ischial tuberosity—I'm not sure how to say that in English. It also hurts on both sides of the perineum. When I'm lying down or walking, I don't have any problems.

An MRI didn't show anything, physical therapy hasn't helped, and neither have cortisol or steroid injections.

Neurologists and urologists have told me everything is fine. In Switzerland, there are two specialists for pudendal neuralgia. I saw one a year ago, and he said that wasn't it. However, my doctor is fairly certain something is wrong with that nerve, so he's going to refer me to another specialist.

So, my question is: Do you know anyone in the US who might be able to help me? I know the healthcare system here in Switzerland is likely better... but then again, you never know.

Thank you and best regards,
Domagoj

Dear Mr. Domagoj,

I don't sit either... by June, it will have been four years! I completely understand where you're coming from. Unfortunately, things are even tougher here in the US. It took me two years for doctors to finally realize the issue had nothing to do with my prostate or bladder. I am currently being treated by a neurologist who is monitoring my condition. What can I say? I still can't sit, but I take medications like Katena, which makes life a bit easier. I certainly don't need to explain to you how much time I've spent trying to adapt and avoid painful situations. When the pain gets truly intense (I sit on two anti-decubitus cushions, those U-shaped foam pads), I take Tramal. My neurologist constantly insists that I use as little Tramal as possible because of the risk of addiction. The alternative to Tramal is Advil, but no matter how many I take, they don't seem to do anything at all. So... back to Tramal. I've done every test imaginable. Recently, I happened to hear on the radio that there is a National Organization for Rare Disorders ( ) here. It's the first time I've heard of them. I'm going to join (it's free). Perhaps I'll stumble upon some useful information. My quality of life has dropped drastically, but, as I said, I don't need to tell you that. If you come across anything helpful... please, I beg you, let me know. Naturally, I will do the same for you.

Best regards. I hope you can sit comfortably again very soon. As for me, I'm actually considering seeking a psychiatric consultation, because I've honestly had enough of this.

Amer Ahmetasevic
Saliha Alica 4
10090 New York City
USA

P. S. Your English is more than excellent. Please don't worry about it at all. You are understood perfectly well.

I don't have any first-hand experience, but I heard from someone else that Dujo Kovačević at the Mayo Clinic handles surgical treatments for pudendal neuralgia. Apparently, a patient I know just had the procedure there and seems to finally be done with years of misery.

Good luck to anyone dealing with this...

Hey there
Does anyone have a fix for this issue?
From what I can tell, there haven't been any new posts about it yet—kind of a dead end so far...