Health Organization for Pudendal Education

I'm also wondering if standing could be an additional factor to the pain I am experiencing. After realizing that sitting is no longer an option for me. I tried standing as much as possible - if I could not lay down. I'm now getting extreme cold sensation in my legs and feet. My Potter MRI said that my SS ligament is thickened along with many other possible factors that could be adding to pudendal nerve pain. But I'm trying to get an understanding if the SS ligament could interfere with the sciatic nerve and maybe perhaps this is why I am now experiencing pain in my legs?

This is a message for desperate I wrote this as a PM but it won't leave my outbox to send sorry hope you get this message.
I will try and answer your questions and tell you honesty what my TG surgery involved. I had a definite diagnosis of bilateral PNE due to a failed CT guided nerve block, my actual systems and ultra sound diagnostic test that revealed both arteries were sluggish.
Had bilateral TG surgery Jan 2014 in the UK.
The surgeon under General anaesthetic had my lying on my front on a table but my legs were dangling down from waist down. He made 12cm vertical incisions down the middle of both buttocks and cut through muscle and fat until he came to SS ligament, he severed and removed both right and left ligament to visualise the pudendal nerve. My left pudendal nerve was bloodied, squashed and tightly tettered to my left SS ligament so by removing the ligament he was able to decompress it. My right pudendal nerve was trapped in a mass of scar tissue so he cut away the tissue to decompress the nerve. The procedure took approx 2 hrs. I remained in hospital for 2 days on a ketamine infused drip that is meant to help calm nerves.
First 4 weeks of recovery is sore and painful as the incisions hurt when you sit , lie down etc but they are bandaged.
I am now 14 weeks post surgery and while have no doubt surgery was right for me due to the state of my nerves I am still in pain and have flare ups. I am on 600 mgs prevailing daily and tramadol to ease pain. I am able to gently swim several times a week but not driving or back in work yet a long way to go.
Surgery is a big decision and not right for everyone but the actual procedure is not too traumatic. Do your research as some surgeons believe preservation of the SS ligament is vital while others don't.
If I can help at all then I'm happy to and hope I have answered your questions.
Don't lose faith there is help out there but sadly there is no quick fix with this condition.
Good luck and happy Easter


Last edited by Positivepoppy on Sun Apr 20, 2014 8:53 am, edited 2 times in total.
Positivepoppy

Posts: 80
Joined: Mon Feb 24, 2014 2:49 am
Location: uk

Hi Poppy,

The message will stay in your outbox until Desperate checks his mail. If he reads the message, then it will leave your outbox.

Hope this helps!
Stephanies

Desperate,

I think I read that an accident led to your PN pain. What kind of accident did you have? Is your pain completely one-sided or is some pain on the right? I do not think the sciatic runs anywhere near the ss/st ligaments.

I had TG surgery twice but I do not believe surgery helped me get better. Entrapments showed on my MRN (I believe at Alcock's, I don't have the report anymore) and I had surgery in 2006 with Dr. Filler and in 2007 with Dr. Campbell (now retired). I went to PT for 2 years, mostly internal work.

I feel how anxious you are to move on and put this behind you -- that is why all of us are here too and hopefully we can support each other through this difficult journey. I wish you much less pain.

Sincerely,
Stephanies

desperate wrote:I'm also wondering if standing could be an additional factor to the pain I am experiencing. After realizing that sitting is no longer an option for me. I tried standing as much as possible - if I could not lay down. I'm now getting extreme cold sensation in my legs and feet. My Potter MRI said that my SS ligament is thickened along with many other possible factors that could be adding to pudendal nerve pain. But I'm trying to get an understanding if the SS ligament could interfere with the sciatic nerve and maybe perhaps this is why I am now experiencing pain in my legs?

Often pudendal neuralgia does not occur all by itself. If you were in an accident it's possible you have SI joint dysfunction, ligament strain, and other musculoskeletal involvements. I'm not sure what could be pressing on your sciatic nerve. I know for me it was the piriformis muscle in spasm and it made my right leg numb and tingly, especially the foot, but I don't remember feeling coldness. The pudendal artery typically runs next to the pudendal nerve so if the nerve is compressed the artery likely is too. I haven't really studied the blood vessels to the leg and foot but if they follow the same course as the sciatic nerve it's possible they are both being affected. You might want to see a manual therapist who knows the Hesch method. You can go to our list of US PT's to contact Jerry Hesch (he's in Nevada) to see if he knows any manual therapists in your area who could check out your alignment. Can't remember if you had other stuff like cauda equina ruled out?

Violet

I know for me the glutes get tight as the week goes by, and can tense up on the sciatic nerve. This happens routinely every month or two for me, and my legs and feet get numb with some shooting pain.

My PT works out the knots over the siatic nerve and its much better.

Desperate, I forgot to mention that slowly after PNE surgery as the nerve pain settled down so did the piriformis muscle and I have no more sciatica on that side. Oddly, I do get it occasionally on the other side now if I exercise heavily or if I don't exercise at all. I just have to be careful, but with the proper strengthening/exercise program I rarely have sciatica on either side.

Violet

Hi all, thank you once again for your compassion and thoughts!

PPoppy, I do check my inbox frequently and I also noticed that I have some messages still in my outbox - I did just PM you but I'll ask again here. Is there a specific reason why this surgeon recommended the TG approach? I personally do not feel comfortable with removing the ligaments, do you believe this is the cause of your flare ups? Or perhaps is it because of the severity of the state your nerves were in? I wish you nothing but a painless recovery, please keep us posted!

Stephanies, for the most part my pain is on the left however, I do get pain on the right but - I do not know if this is just "reflective" pain. You had mentioned that you had TG surgery twice, is there a specific reason as to why? Was your MRN read by Dr. Filler? Did you still do PT after knowing there was an entrapment? I've heard that you should avoid PT if in fact the nerve is entrapped...could you share some of your thoughts on this? Thank you.

Violet I also agree that this is a multiple-factor injury. This is why I'm trying to find the relation between the thickened SS ligament and the pudendal nerve. I should also mention that I had prominent pelvic floor varices that were found. According to my Potter MRI - "the sciatic nerves lie anterior to the piriformis muscle and do not pierce the piriformis muscle." So I guess I can rule out that...Do you know of anyone that has done the Hesch method and what symptoms they had? Did they have an entrapment? As for ruling out cauda equina, I did research about this and without embarassing myself of what my accident specifically was/the cause of this - I feel strongly that this is not a spinal problem...

I can however note that i have done kegel exercises when i was young (around 16- for a couple of years) which may have caused tight pelvic floor. In addition, i am usually a pretty stressful person so i can see why my muscles would be tighter than normal. I am aware that PN/PNE can be caused by multiple factors and one event could trigger it. Possibly the kegels that i had done in the past (done incorrectly and too much) put too much pressure on my pelvic floor and the years of stress could have contributed. However, the event that triggered it was a trauma which was a result of an improper reverse kegel. I had thought a reverse kegel was done by pushing out (like when straining to urinate) but when i pushed really hard i felt pain and loss of sensation almost immediately. I pushed out for a total of 5 mins but right after that i felt an immediate lack of sensation etc. This was my trauma that had triggered PN/PNE.

Any thoughts on this anyone?????

Dominick, if you do an advanced search (upper right) you can type in keyword Hesch and author Hermajesty (another nurse) and read her posts about the Hesch method. She had The reason I had suggested it is because I was thinking in terms of accident such as car accident or fall, etc. But still, the fact that you have more pain on one side than the other seems it might be worth at least ruling out a pelvic misaligment. According to the Nantes criteria article, pain more on one side than the other is suggestive of pudendal nerve entrapment.
http://www.pudendalhope.info/sites/defa ... iteria.pdf

Just brainstorming here and thinking of possibilities based on additional info about your accident. I don't know if there could be a straining of accessory ligaments from a reverse kegal. Your PT might know what ligaments would be involved. Dr. Bautrant and Dr. Filler's office told me that some people have enlarged pelvic floor muscles (obturator internus in particular) and that this muscle can impinge in the pudendal nerve in the Alcock's canal. Sometimes in PNE surgery they have to cut away part of this muscle or release the nerve from fascia (the tissue covering the muscle). Your PT might be able to tell you if your OI muscle is enlarged and could possibly be impinging on the nerve. I was doing 300 kegals a day to try to correct a pelvic floor prolapse when I developed PNE but I was also weightlifting. Pelvic floor muscles were very tense. Do you exercise much?

By the way, when I throw ideas out there, you don't have to reply or answer them specifically -- especially if it's embarrassing. Typically I just like to brainstorm everything I can think of hoping that something I say might spark an idea for you that will solve your issues and bring you healing. Not trying to diagnose or advise you on what to do. Just throwing out information that I've gathered after moderating the forum for 10 years. Please take or leave anything I say -- I will not be offended.

Violet

Violet,

I had just PMed you right now, not sure why my messages are not going through to you. But definitely keep sending me info. I appreciate anything you have to say! I would rather us spit ideas off one another to help me in my case and others.

Also, you had mentioned an enlarged OI muscle which could be impinging on the nerve, My MRI says "the obturator internus muscles appear symmetric.. Not sure if this means it is not enlarged or not. Any thoughts?

Also, you had mentioned nerves being compressed by fascia, do you think myofascial release therapy would possibly help? or can fascia be developed deep in the muscles (kind of like varices)? Again, if you dont have any thoughts or opinions dont worry. Just bouncing thoughts off of you. Very unbiased opinions.