Pudendal Nerve Entrapment/Neuropathy/Damage

Hi,
This site has me quite confused, I am in the midst of trying to find a doctor who will communicate with me about this debilitating stuff. I was seeing a urogynecologist at RUHS, after injecting my pudendal nerve, the 3 branches unguided with kenelog it has moved to my whole pelvic floor, involving now everywhere the pudendal nerve is! I try to write, and call
but get no replies. The pain from this is horrid. I contacted my first urogynecologist yesterday and am waiting for a reply from him. This year I've had to have major rectal descent surgery, requiring a rectopexy, cystocele & rectocele repair. The nurse at my first urogynecologist told me the kenelog can take 6 months to wear off, as this pain after defacation was only confined to the rectum, now all over. I had an appointment for a nerve conduction study on Tuesday, with a nuerologist who can do this study in the rectum. Right now I could not even fathom the flaring this would cause, on top of where I am. I am on pain meds by PCP, but she has no one to refer me to. I'm in Temecula CA, and urogynecologists are unheard of here. I guess I'm asking, how and where do you go to get help. I do not want to be put on drugs, pain pills are even not me. How did you get help? Thank you for reading, any information would be greatly appreciated...as I am at a total loss. Thank you!!!

I have read somewhere in these post regarding nerve entrapment, there is a Dr Anthony Gillespie at St Joes in Phoenix, AZ. that is very successful with nerve entrapments surgeries. .

Yes, I had to stop the medicine too because it made me feel awful. But I took it long enough for it to help me which was only about 2 weeks, I think.

Hi Olivedog, I strongly recommend a test to indicate if you have ACNES (abdominal cutaneous nerve entrapment syndrome. Take the Carnett test. Lie flat on you back on a hard surface. Next with legs together lift just your legs up a foot or so. Most of the time the pain is below the lower right rib cage. Next try just lifting your head and upper body. If you have extreme pain from this there is real possibility your have ACNES. Next you need to find a pain management clinic that has a doctor who knows what ACNES is. Almost all doctors are not familiar with it. He should trigger point cortisone into that area. You can find this procedure on Youtube. If you have immediate relief this is the clincher. Problem is this will not last long. My lasted about a week or so. I had 4 more shots with less and less relief. I fortunately found an amazing surgeon at St Joe's in Phoenix who robotic laporoscopicly cut my T8, T9 and T10 nerves. I was pain free from the ACNES when I left the hospital that afternoon. Prior to surgery my pain level was horrific! Jeff

Does this prior pain affect your rectal, and genital area? As I was told I have pudendal nueralgia with possible entrapment of the pudendal nerve. Could you please give me the name of the surgeon, so I can call them? Thank you Jeff, I think I might know who this surgeon is, but need to make sure.i really appreciate your time in answering as the pain is sooooo bad. The nerve injections I did have to the pudendal nerve made this worse, as it was confined to my rectum, and is now all over, this nerve is. I wish I never got those shots. I was told the kenelog takes 6 months to wear off. Right now I'm writing in complete pain, and couldn't remember if I took my recent pain pill. I have never been on them...started needing them after the shots. There are a lot of scammers out there too, I actually drove 2 hours to see one...I was lied to when I called, and he was not the doctor who did any surgery...
Him going in there now has made the pain worse...I'm telling you, my life feels ruined,
and no doctors even get it. I'm in a rather dark hole...not knowing what to do.
Have an appointment set up for a nerve conduction but I can not even imagine what the flares or horrid pain would be after that. So I'm waiting to talk to them to see if there is another way of seeing, there must be...this not only causes bad pain, but anxiety too. Thank you, a name and number would really help!!!
My best to you, and very glad u got help...
So many have these horrid issues, and do not know what to do. Again thank you!!!!

No this had nothing to do with my rectal or genital area. ACNES is very specific. You need to go on You Tube and start with the Carnett test. Wish I could've helped. Jeff

Thank you Jeff, so,kind of you, but my stuff is in a totally different area. Thank you so much for trying to help! Very much appreciated, I'm so glad you got help!!! Continue on !!!!

Thank you so much! Good luck.

I have a physiatrist for pain management. This is his specialty. However, only having minor positive results. It appears that there maybe little that can be done for this pain.

I have had this issue for 5 years now, from a botched hemorrhoid banding...not one doc I have gone to has helped. I'm now having to take pain medication and treated like a criminal. I do not understand WHY the pudendal nerve is so misunderstood!!!! It ruins so many lives, and the pain is undescribable!!! It is just not ok that so many suffer, and no one to treat it. It's a nerve that can be seen in special MRIs...specialized radiologists can see. Why is this nerve so overlooked
when it is part of your urinating and defacating processes???? I'm sorry but that is a big part of everyone's life. This pain is incideous and I'm tired of looking ...when all I read are bad results. This needs to be researched & taught in medical schools everywhere. It is not rare, men & women have it. I'm disgusted with lots of scammers and greed too. This has made my life no life, full of pain and pure frustration. If we can get to Mars why can't we figure out a nerve that can be seen on a pelvic MRI, by specialized radiologists???? Shoving us aside and giving pain pills is not the answer. This is just so sad for all who have Pudendal Nerve Entrapment & can get no help, including myself. I hope there is an answer one day!!!!