Health Organization for Pudendal Education

Hi Everybody,

firstly I wanted to say "Hi", because I'm new to this board.

My problem is that I am suffering from purdendus nerve pain for four years now, especially in the perianal region. I keep on going to doctors who unfortunately have never heard of pudendus neuralgia. This is also because I life in Germany and there are not many specialists around here.

The doctors I go to - normally orthopedists - have diognised a spondylosithesis of L5/S1, which is the anterior displacement of vertebra L5 in relation to the sacrum vertebra S1 below. They keep telling me that my pain is caused by this spondylosithesis. However, neurologists keep telling me that this cannot be true since the pudendus nerv has its origin in the sacral vertebra S4.

I am stuck and was wondering if you guys could help me out by telling me what you know or think. Can my spondylithesis be the cause of my pudendal nerve pain?

Thanks a lot. I really appreciate any help.
Frank

Hello Frank,
Your scenario was similar to my conundrum when my first PN symptoms started in 2008. I had an MRI that showed mild stenosis in a couple of lumbar joints, and I and my MD falsely correlated that with stenosis. After 9 months of PT, no improvement. Then I really tuned-in on the origin of the pain - listened to my body. Looking at dermatome maps of the body, it was clear my pain was from Sacral roots, not lumbar. The pudendal nerve derives from S2-4. Spondylithesis is different that stenosis, but again, if your pain is in the sacral regions, it is likely not lumbar.

My advise: Google to get a copy of the Nantes Criteria, assess your symptoms, and educate yourself and your MDs. Knowledge is king - read up and take charge of your path. Then outline a work-up, to exclude other causes. And if it still points to PN, seek out one of the knowledgeable medical PN teams referenced on this website to get formally diagnosed and treated.

Good luck,
RR

Dear RR,

thanks a lot for your answer. It definetly helped me to hear that you had a quite similar conundrum like I have.
After you received the right diagnosis, how is treatment going? Did your condition improve significantly?

I found the Nantes criteria and as far as I can assess it, I have PN. However, I also found this link:
http://www.perineology.com/files/e2b.htm It is an aricle written by Dr. de Bisschop, a PN specialist also referred to on www.pudendalhope.info.

The quote interesting for me was:
"...it is of primary importance to know a particularly and relatively frequent organic aspect of the pudendal neuralgia, namely an intraspinal radicular lesion of the nerve fibers (irritation, inflammation, mechanical dysfunctions ...). The most frequent causal agent is a disco or vertebro-radicular conflict in L4-L5 and/or L5-S1."

The article further states that Dr. de Bisschop developped methods to specify the differential diagnosis of peripheral pudendal nerve compression versus lumbosacral radicular impairment as cause of pain in the pudendal nerve area.

I have written an email to him and plan to travel to him to get a clear diagnosis.
I hope that will finally lead to an improvement of my situation.

Best,
Frank

Hello Frank,
Excellent find - that was the artical that caused me to pause too. I asked the Houston team's neurologist, Dr Popeny, about this and he waived it off. Let us know what his reply is....

And IMO neurologists know better when it comes to nerves. My earlier advice to you stands. And if you go the whole 9 yards, getting an MRI with Dr Potter, she will comment on your lumbar sacral region too, factoring it in with what she observes in the pudendal regions.

Keep us posted,
RR

PS My R pudendal was compressed/trapped in the STL. It is free and am healing.

Dear RJR:

Sorry for not posting until now. However, just yesterday i visited Dr de Bisschop and Dr Nundlall in France to get a diagnosis.

They have specific methods to Diagnose PN, such as Electroneurographie, where the pudendus nerve activity is measured. Moreover Dr Nundlall has developer a method where she measures the bloodpressure (or something like that) of pudendal arteries which follow the same route as the pudendal nerve. Thereby they can determine if the nerve is compressed. You can read about their methods on this page, or another pudendus site - I think.

Well, to cut it short, my nerve is compressed at the level of the ischirectal fossea, above the ischiatic spine. Mainly at the Left side, which corresponds with my pain, which is more severe at the left.
Furthermore, an oedema was found which is a clear sign for an inflammation.

The treatment the team suggested was a pudendus block with a mixture of anaesthesium and cortisone to furthermore test if due to the anaesthesium the pain diminishes for a few hours and to further due to the cortisone the oedema disappears taking the extra pressure it causes off the nerve. Furthermore, the hope is that the cortisone releases the tightened fibre which is around the nerve, to furthermore release the pressure.

If improvement occurs within one month perfect, if not the Next Options are a second attempt with cortisone, if that does not help treatment with Clonazepan (Medicine), or as last Option surgery with Dr de Bisschop's method.

I will keep you updated. And thanks a lot for any further comments!
Frank

Welcome to the club Frank. Well done for "taking charge of your own path" as RJR suggested, glad that you are at least on the right path at long last.
It seems ridiculous to question an orthopedic surgeon (how dare you ) but obviously you were right to do so.
Many of us have had a similar 'fight', including me (again L5/S1) I'd had a successful microdiscectomy at that level 8 years ago so knew how different the pain was and kept telling them "it's not my back ! ! "
Good luck with the treatment.
Take care
Helen

Hi on all

I´m here too.My Englisch are terrible.Where can i find Fransico?I don´t find him here in the Forum.

best greetings...

Kleinerpreis

Hi,

Thanks Helen for your support. It really sometimes is a "fight". I really hate that so often the docs don't listen eg where exactly the pain is and then assume a wrong diagnosis. Well, now I have my PN compression diagnosed at last.

However, I have a few more questions regarding the cause of my compression. Dr de Bisschop explained me that my compression is due to a tightening up of fibre at the level of the ischiorectal fossa and above the ischial spine. He said it's not ligaments. But I am wondering how that corresponds with what I have already learned from the forum, where most of you have an entrapement of the nerve by ligaments. Further, I find the explanation, that the cortisone works against the tightened up fibres and against the inflamation understanable. But does anaybody know someone whom only the injections helped pemanently? Dr de Bisschop Said there is a 15% chance, but I havent seen this number elsewhere.

Last question. The MRI by Potter, does it have to be a special MRI or just one of the pelvic? Cause I am thinking about getting a diagnosis also by her to have the compression localised more precisely.

Thanks so much for any answers in advance.
Best, Frank

KleinerPreis wrote:Hi on all

I´m here too.My Englisch are terrible.Where can i find Fransico?I don´t find him here in the Forum.

best greetings...

Kleinerpreis

You can send him a private message (PM). Click on this link http://www.pudendalhope.info/forum/memb ... file&u=675

Hi again Frank,
You probably have found this info already but if not. . . . .

Hollis G. Potter, MD Chief, Magnetic Resonance Imaging Hospital for Special Surgery Professor of Radiology Weill Medical College of Cornell University

The address is as follows.
Hospital for Special Surgery
Magnetic Resonance Imaging
535 East 70th Street, New York NY 10021
Basement level

Appointment Desk
Tel 212-774-7296
Fax 212-774-7295

If you do decide to go I suppose you could ask for a lumber and pelvic scan and see what she can find.
As to your (much) earlier question re injections I was told the same thing and hoped and hoped . . . unfortunately the blocks have not lasted BUT you never know, fingers crossed for you.
Take care,

Helen