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.

@amandajro

@dcdusek you will notice that I have moved your post and the responses to it into an existing discussion on pudendal nerve entrapment so you may benefit from past conversation as well as to have a central discussion for you and others on this topic.

You've heard from several members already! What are your main questions/concerns going into your surgery in a few weeks?

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Where do I find my original post?

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@dcdusek

Where do I find my original post?

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Here is a direct link to it in this discussion: https://connect.mayoclinic.org/comment/642177/

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I would too. I was trying to share the difference between pain relief for sciatic pain which is not to hard to achieve and the pain from scar tissue. The latter i believ tends to be more difficult to treat.
Please continue posting the latest about this issue!.
And thanks a million!

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I've told others on here that the only thing that worked for me after 14-1/2 years of sitting on a donut was Topamax, an anti-seizure medicine that I took off-label for another medical problem. It worked quickly too – within 2 weeks. Ask your doctor.

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I read your post and my doctor wrote the prescription but it has made me feel sick and had major loss of appetite and very tired. Did it do that to you as well?

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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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@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 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. .

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@dcdusek

I read your post and my doctor wrote the prescription but it has made me feel sick and had major loss of appetite and very tired. Did it do that to you as well?

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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.

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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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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

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@jgroudan

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

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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!!!!

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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

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@jgroudan

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

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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 !!!!

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