Health Organization for Pudendal Education

Faith wrote:

A's Mommy wrote:severs the sacrospinous ligament and transposes the nerve forward of the ischial spine so as to avoid re-entrapment in the sacrotuberous ligament. Hope this helps.

A's Mommy, so does he use the cadavar ligament for the SS ligament or the ST ligament?

He uses the cadaver tendon (not ligament) to reattach the ST ligament. He leaves the SS ligament severed. I do not know of any doctors that are severing the SS ligament, then repairing it. I just don't think from a medical standpoint this would be possible if they wanted to achieve the goal of transposing the nerve forward of the ischial spine. I never took anatomy so please don't quote me on that one! Thank you for your continued prayers, BTW. Been a rough, rough week since PT screwed me up.

Faith wrote:
Lernica, do you have pain in your sit bone area at all? Is you pain mostly vaginal or rectal or both. And is everything all one sided?

Faith,

I get the hot-poker-up-my-butt burning pain, both rectally and vaginally. Not so much "sit bone" pain, but lots of buttock pain due to spasming muscles, I think. My rectal pain is mostly on the left.

Lernica

So is there anyone who has had sacral pain that was relieved by surgery? Anyone know?

Ladies,
I develop pain along the sacrum when I do knee to chest stretches. Could it be the piriformis muscle, since we all have SIJD???

Hello all;

I'm happy to report that my sacrum pain seems to be resolving itself ("going away" sounds too optimistic). Things seem to be "loosening up" down there and not so constricted by muscle spasms. I am now able to walk, slowly, for about 30 minutes without experiencing the knife-in-the-back pain or a two or three day flare up. The sitting pain is also a wee bit better, and last weekend I was able to go to a restaurant (for breakfast/lunch) for the first time in about a year. And the unbearable pain after visiting the hairdresser for over an hour last week was more or less resolved by the next day. In other words, I am seeing some progress.

So here's my theory why. You will recall that I have suffered from endometriosis most of my life. I experienced the typical endo pelvic pain but also atypical sitting and walking pain. (I recently asked my endo surgeon how many other of his patients experienced these pain symptoms and he said none.) For some strange reason, my sitting and walking pain always resolved itself after my surgeries, and I never questioned why.

My last surgery (hysterectomy actually) was in November, 2010, AFTER I received a diagnosis of pudendal neuralgia. Again the endo lesions in my pelvis were removed but the sitting and walking pain persisted well beyond my usual recovery time (of 2 - 4 weeks). Only now, after four months, am I seeing some change in that pain. So my theory is that the endometriosis pain was resulting in pelvic muscle spasms which were constricting the pudendal nerve. Now that the endo pain has been resolved, there is less pressure on the pudendal nerve and it is now slowly recovering. So I am hopeful that my recovery will continue apace.

I will keep you all informed of my progress.

All my best,

Lernica

Hi Lernica,
Thank you for the update! I'm so happy you're feeling better!
I sincerely hope your theory is correct and your symptoms continue to diminish.
Warm regards,
Karyn

That's great that you are feeling better Lernica. It's always nice to hear stories where the pain resolves without having to go the surgical route!

I had an SI joint steroid injection last week and it did nothing for my pain. The lidocaine didn't even help short term for my sacral pain. So I feel pretty confident that my sacral pain is related to my PN. Just wanted to update this for others. I am glad I had it though just to rule things out. I still don't really understand why the PN causes sacral pain in some and not others. Maybe it has to do with the location of entrapment.

Faith,

In our condition, taking steps to rule things out is important. So I agree that you didn't waste your time with the injection, although I'm sorry it didn't give you any relief.

It would be interesting if sacral pain was indeed related to the location of the entrapment. Interesting theory.

Hello All,
As my signature says, I have had PN for over 3 years and about 2 weeks ago I developed a burning bilateral sacral pain that I didn't have before. Previously, my pain was all in my perineal/scrotal area or in my ischial tuberosities and radiating down my inner thigh if I sat too long. This pain is aggravated by prolonged lying down which is my favorite liesure time activity on my days off (I am an x-ray tech). I have taken to laying down on two pillows when I am not asleep and suspending my sacrum to lessen the pain. Laying on my side also helps. I tripped and fell down on the sidewalk right before this pain started so that may be the cause but who knows. I was thinking about seeking PT for the sacral pain but after hearing about Faith's experience, I am apprehensive about making it all worse. No easy answers, that's for sure.

Best Wishes,

Don