Male pudendal nerve décompression surgery

[Humming]

I am hoping that there are some men out there that have had this surgery and would like to share their experience whether good or bad. I have seen five specialist pelvic floor physios over the past 3.5years and none of them have met clients who have had the surgery yet they are quick to suggest success rates are low. I would really love to hear from men that have had this but I am struggling to find anyone. I am going to Nantes in a few months to have a diagnostic nerve block and if positive will decide upon surgery. I have seen all the stats on the Internet but have yet to speak to anyone that has had this procedure- it would be great to hear from a real live person - hopefully you are out there. Many thanks

[kalecolbe12]

Go on the Pudentalhope.com site and also the Facebook pudental neuralgia support and I know for a fact there are men that have had this on those groups that will reply to you

[Humming in reply to kalecolbe12]

Thanks

[COZNA]

I had Pudendal Nerve Decompression surgery from Dr. Hibner in AZ in approximately 2009, one of the early few males. He was a gynocologist there who repaired one of the 2 ligaments they cut (sacrotuberous and sacrospinous ligamements.)

I can answer any of your questions. I researched this issue heavily back in the 2000's, and was also seen by the Texas Team set up by Dr. Rinney. I've had botox injections, and just about every treatment for pudendal nerve issues..

[pinkfluffyclouds in reply to COZNA]

How are you now was anything helpful or just same .I sincerely feel for you and anybody whom may have succumb to this cruel torturous condition . Only know have read ganglion impar injection for others have been successful, but other treatment have read may fail yet some have success. It is a real mystery this one very complicated and yet so hard to find the right treatment . One can only keep trying ,I call myself a Guinee pig as that is all I can do is try what ever there is as the condition is so debilitating that only people who have it know one word cruel pain no-one will know as it is out of human description debilitating , hope for success to all my pudendal sufferers. PS still think there is hope just finding the needle in the hay stack hopefully be found for others , oh and for me too😎

[COZNA in reply to pinkfluffyclouds]

The surgery essentially ended my pudendal pain. However, the surgery has caused other issues associated with scar tissue and muscle dysfunction.

[Humming in reply to COZNA]

Hi cozna thanks for replying. Did you have the original surgery in Nantes and then the ligament repair in the states or all in the states? Did the surgery cure you and how long did it take for you to recover?Are you able to sit pain free? It's good to find a male that has had this procedure. I do stretching and meditation on a daily basis and have seen 5 specialist pelvic floor physios over the last 3.5years and have had three pudendal nerve blocks and pulsated frequency neuro modulation but unfortunately none have helped. Also been on a pain management course. I have now come to a point where I need to to consider alternatives so any advice on surgery would be welcomed.

[COZNA in reply to Humming]

I did it all in the states, having chose Dr. Hibner because he was the only one who reattached the ligament, Nates style.

It's hard for me to recall how long before the pudendal pain went away. But I believe it was shortly after healing from the surgery.

I am not able to sit pain free. I have a lot of gluteal pain these days, which replaced the pudendal pain.

I too still do stretches and some exercise. There is almost nothing I have not tried.

Only you can decide on the surgery. I have not kept up on the surgery these days. I would not likely repeat my surgery if I had it to do over. The problems created by the surgery are also painful. I seemingly traded pudendal pain for other things. It seems that cutting through the gluteal muscle and whatever else they cut, ultimately caused muscle dysfunction in that glute. I had only 1 side affected, so surgery was only on one side. Anyway, I have yet to be able to get the dysfunction lined out. This has created hip, gluten, and low back pain. Sitting has always been an enemy. If someone is doing the surgery in a way that does not sever all those gluteal muscles, it may be worth considering. I know there were several styles of the surgery back when I did it, but I am no longer current of who is doing what surgically these days. I have a female friend who also had the pundendal surgery I had with same doctor. She is doing ok.

What surgery choices have you considered? I mean who would you see and what is their method of pudendal release?

[Humming]

Hi cozna - sorry to hear your pain has been replaced by another pain. I'm not quite sure about the type of surgery they perform but I think it is similar to yours but maybe they have modified since then. I'm sure they do cut the ligament to free up the nerve. The surgeon is Dr Ploteau who replaced Dr Roberts when he retired. I will ask lots of questions when I have the diagnostic nerve block before I decide to have surgery It's really good to hear people's real life experiences like yourself so much appreciated. Its such a terrible condition not do be able to sit and live a normal life, I just hope I can get some reduction in pain.

[jim32]

Hello Humming. I am a male with Prudential neuralgia (8 years now) living in Milton Keynes. I just came across your posts from a few years back when you were looking at visiting Nantes in France. This is something I am looking into doing myself right now and I am in a dialogue with Judy from pelvicpain.org.uk currently. Did you ever proceed going over to France or did you in fact get a cure for your condition? Hope you're doing well and would love to hear from you

[VFR1200 in reply to jim32]

Hi Jim32, I have had surgery in Nantes, I found that it has been beneficial for me, I still cannot sit down conventionally for long periods, but I am no longer in pain and have very little associated pain. I know the triggers for my pain, I am still active and can do almost everything I did pre my condition except Running and Cycling. I registered with Dr Gareth Greenslade at the Bristol Pain Clinic, who assessed my suitability for the surgery initially, after 1 year of Nortryptaline, which I still take. He arranged the surgery. Overall my condition is now effectively managed, not cured and both Dr Greenslade and Professor Ploteau (in Nantes) have been instrumental in supporting me.