Pudendal Nerve Entrapment/Neuropathy/Damage

Posted by mandiPNE @mandee, Oct 5, 2018

Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I’m very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want – for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.

Interested in more discussions like this? Go to the Chronic Pain group.

Thank you so much! Good luck.

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@olivedog

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!!!

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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.

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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!!!!

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@olivedog

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!!!!

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@olivedog, I know it has to be a terrible feeling when you have pudendal nerve problems. I also hope there is an answer one day…soon. Here's some information I found that was last updated April 7, 2021.

" It typically requires permanent lifestyle changes and physical therapy. The treatment options include pharmacological therapy, CT guided blocks, …" — Pudendal Nerve Entrapment Syndrome: https://www.ncbi.nlm.nih.gov/books/NBK544272/

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Hi,
Just wrote note…went poof. I use this article to take to every single place I have to go. I have never in my life been on pain pills in my life!!!! The pain is incidious. I blame the urogynecologist who gave me unguided kenelog injections to all 3 branches of the nerve transvaginally…right after that on July 5th. It started…pft got way too agressive also. The injections went through every single part the nerve is. It was only confined to the rectum where I just had repair surgery
In March, from a botched hemorrhoid banding. I needed rectopexy, cystocele, & rectocele repair. This was the 10th colorectal surgeon who finally listened. He advised me he could repair the rectum, but not the pain after defacation, which is the pudendal nerve. He said to start pft…was doing well, she got too aggressive, admitting to it. I was told to get triggerpoint injections, so I go, this is when the nerve was injected instead,. This doctor will not call…left me in the dust,. Recently in this pain went back to original urogynecologist who discovered scar tissue proving I was over dilated
In the hemorrhoid banding…he would do nothing but refer me out…&`this person, opted out of Medicare, charges
1000.00 cash for a consult!!!!! I left there so disappointed not to be helped again. My husband found a guy who does mri
Of the pelvis, radiologist out of UCLA…I have found a Cedar Sinai doc whose passion is pelvic floor pain…I'm not gonna give up., but to have even your own PCP, act awful, and these other urogynecologist fools.is insane. On alot of forums and most get worse after injections…kenelog..this is crazy stuff…no joke..Doctors need to be re educated, as this is not rare at all. Thank u for reading and the article…I know it well. God Bless you!!!

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I have been diagnosed with pudendal nueralgia for 10 years. It is in the vaginal area which like you said no one likes to talk about. I also have fine fiber pheripheral nueropathy. . Pain Drs are now starting to advice I do spinal cord stimulation. I have been going to a pelvic floor therapist for 5 months which has not helped at all. Would like to hear what you have tried. At last found someone with a diagnosis of pudendal neuralgia.

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@olivedog

Hi,
Just wrote note…went poof. I use this article to take to every single place I have to go. I have never in my life been on pain pills in my life!!!! The pain is incidious. I blame the urogynecologist who gave me unguided kenelog injections to all 3 branches of the nerve transvaginally…right after that on July 5th. It started…pft got way too agressive also. The injections went through every single part the nerve is. It was only confined to the rectum where I just had repair surgery
In March, from a botched hemorrhoid banding. I needed rectopexy, cystocele, & rectocele repair. This was the 10th colorectal surgeon who finally listened. He advised me he could repair the rectum, but not the pain after defacation, which is the pudendal nerve. He said to start pft…was doing well, she got too aggressive, admitting to it. I was told to get triggerpoint injections, so I go, this is when the nerve was injected instead,. This doctor will not call…left me in the dust,. Recently in this pain went back to original urogynecologist who discovered scar tissue proving I was over dilated
In the hemorrhoid banding…he would do nothing but refer me out…&`this person, opted out of Medicare, charges
1000.00 cash for a consult!!!!! I left there so disappointed not to be helped again. My husband found a guy who does mri
Of the pelvis, radiologist out of UCLA…I have found a Cedar Sinai doc whose passion is pelvic floor pain…I'm not gonna give up., but to have even your own PCP, act awful, and these other urogynecologist fools.is insane. On alot of forums and most get worse after injections…kenelog..this is crazy stuff…no joke..Doctors need to be re educated, as this is not rare at all. Thank u for reading and the article…I know it well. God Bless you!!!

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I have had pudendal injections which have made me so much worse. Gastrointestinal cannot believe the pain a bowel movement causes me and want to keep giving laxatives. Have given up on gastroenterologist.

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@user_ch98d0b5c

I have been diagnosed with pudendal nueralgia for 10 years. It is in the vaginal area which like you said no one likes to talk about. I also have fine fiber pheripheral nueropathy. . Pain Drs are now starting to advice I do spinal cord stimulation. I have been going to a pelvic floor therapist for 5 months which has not helped at all. Would like to hear what you have tried. At last found someone with a diagnosis of pudendal neuralgia.

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Hi Ann, You will notice that we have removed your email address from your post to protect your privacy and prevent spammers from getting your email address. We encourage members who want to exchange personal contact information like email addresses and phone number to use the private message function of Connect.

How to Send a Private Message – https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

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@user_ch98d0b5c

I have had pudendal injections which have made me so much worse. Gastrointestinal cannot believe the pain a bowel movement causes me and want to keep giving laxatives. Have given up on gastroenterologist.

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I am in the midst of setting up appointment at UCLA with a protégé of Dr. Villablanca, a radiologist who does an MRN mri, of the path of the pudendal nerve. He then does know exactly where it is. I am conversing with Dr. Rapkin's nurse…and will be in the back of an uber soon. She will do a televisit first. I also have a new pain management group, who are real doctors, and care. It has been a very difficult road finding any doctor who even gets this. I have no clue why urogynecologists are even used??? Nuerologists, radiologists and anesthesiologists know more than them ??? I think hopefully soon this will change as more people come forward with their debilitating issues.

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@bkruppa

Sorry to hear about your PN pain. The pudendal nerve affects the anus as well as other areas of the pelvic floor so what you are experiencing is probably due to an entrapment issue with this nerve. There are clinics that try to stretch various muscles that could entrap the pudendal nerve. Some people get relief within a couple of weeks, some in a year or two, and some never experience relief. From what my wife has gone through you just have to keep searching to find the cause of the entrapment otherwise the only help doctors will give you is pain medication. My wife's pain levels like yours has intensified also. No one can say why but the pain has increased.

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I have nerve entrapment , severe burning pain in anus. I've seen 17 doctors and had nultiple procedures. Have you found anything to help the pain. I can't sit at all

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@clashganny

I have nerve entrapment , severe burning pain in anus. I've seen 17 doctors and had nultiple procedures. Have you found anything to help the pain. I can't sit at all

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Welcome @clashganny, I'm not sure if @bkruppa is still following this discussion but hopefully the member will see your post and respond. I know you must be frustated having seen many doctors and having multiple procedures without any relief. There is a discussion started by @jenniferhunter that talks about all of the different conditions that can be helped by Myofascial Release Therapy (MFR). One of the condtions listed is pudendal nerve entrapment. Here is a link to her post in the discussion that has a Lumbo Sacral Decompression video with John Barnes — https://connect.mayoclinic.org/comment/247117/

Have you heard of or tried MFR therapy?

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@clashganny

I have nerve entrapment , severe burning pain in anus. I've seen 17 doctors and had nultiple procedures. Have you found anything to help the pain. I can't sit at all

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Have you been to a colorectal Dr. The gastroenterologist does not do that area. I am 11 years into gastro pain and 6 gastroenterologist said I had nothing wrong in my colon. Went to UCDavis and Stanford. They called it pelvic floor dysfunction. 2 years at a pelvic PT and dozens of nerve blocks. I was having dysfunction of constipation and diarrhea with pain. After 8 years of suffering my pill doctor said let’s do a Celiac test. Yes I have it. Also the genes. It explains my different medical problems for 72 years. You have to go gluten free, very hard, but helpful. My rectal pain stayed because I had a damaged intestinal system. Now it is my anal canal. I think an anal fissure from the hard feces. I finally realized I needed a colorectal doctor. The gastroenterologist does not study that area. I am laying down using Recti Care 5% lidocaine in my rectum and acetaminophen suppositories. I finally got through to a colorectal Dr. And hope he takes me. It can be a fissure or sphincter muscles dysfunction. Both can be worked on easily. I am tired of crying everyday with pain. I know your pain. Oh they worked on my pudendal nerve as well, I have interstitial cystitis as well. That nerve is very tricky, they could not get to it with a nerve block. I cannot take any meds for pain.

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