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.

@olivedog

I have an appointment with UCSD's Woman's Health, Dr. Charles Nagar, Oct. 19th, seeing a Nuerosurgeon b4 this with fresh Lumbar Sacrum Mri. Dr,. Nagar, whom I have not seen, but did talk to nurse, repairs the pelvic floor, knows of all ligaments, and about entrapment of the pudendal nerve. He works with this directly. I have tried all the shots, made me worse and extremely painful. The pelvic floor therapist brought this all on 2 months ago, by being too aggressive, and admits to it. This is a very difficult thing too deal with as no ER can help you, doctors do not get it, only urogynecologists
and we do not have one where I live. I have been diagnosed with Pudendal nerve entrapment or PNE. I believe I finally located the proper place to go. The pain after defacation is off the charts, now affecting urine flow and sitting. I believe this is more common than people know, and doctors need lots more study in medical school…why should only urogynecologists get this. This create so much stress having the pain, and your regular pcp has no clue…pretty crazy.
This is very real, and extremely painful, very underestimated and over looked. I think I found a very good Doctor finally, I'm hoping…been in practice for over 30 years…now to get there in this pain. The Nuerosurgeon I see Tuesday will obviously be made fully aware of this, to set my pcp straight, along with her never requesting the records of diagnosis.
I have to be my own advocate, as this really needs a lot more attention. You should read the Pudendal Nueralgia Forum,
Many suffer from this…pills again seem to be doctors answers…sorry but I want the root cause, not to be put on some ssri drug, only to cause more problems. Let us hope I am finally after 5 years going to get an answer…it has been there since being over dilated in a hemorrhoid banding 5 years ago. It took me 10 colorectal surgeons to listen…I wasxin 3rdcdegree rectal descent with this nerve pain after defacation. It was after having my rectum repaired, the colorectal
surgeon told me c he could repair my rectum, but the pain would still be there. I needed pelvic floor therapy after…well I did what was told…he had no one to refer to, I found the one…she had lots of knowledge…but as I started this …she aggravated the problem leading me to where I am now. I surely pray Dr. Nagar can give me help. This has been a long journey that is not over yet. Again much more important medical study needs to be done in this area…ugh!!!! To any fellow sufferers reading this, good luck, I know this is not easy.

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I, who have a different kind of spinal pain, believe that you are now on the right path with this new MD, who has more knowledge than anyone you have so far seen. Good luck to you.

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@marilynnovak

I, who have a different kind of spinal pain, believe that you are now on the right path with this new MD, who has more knowledge than anyone you have so far seen. Good luck to you.

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Thank you for your most positive feedback. I know someone who has endured this amount of pain for 8 yrs getting too many things done. I have had pain after defacation for 5 years, never reaching this pain scale, until the PFT went into the eye of the storm with her finger, two months ago. This is now relentless…and I during this time searched. I want the root cause…and I think you are correct…God guided me…this man can go in laprascopically and if the pudendal nervecis entrapped find it, even in a ligament, I guess which is common. This appointment can not come soon enough. I just got healed from rectopexy, cystocele and rectocele surgery. I was doing great,
Till the therapist got too aggressive admitting to it. So thank you for your kind words…much appreciated…hoping for this journey to be over. GOD BLESS!!!

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@expat49

I realize this is an old thread but I too suffer from nerve entrapments all over my lower body. I too have had decompression surgeries and am desperate to connect with others who have this condition. @ahayes are you still around?

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Have you done the Carnett test for ACNES? If it appears to be next step is cortisone shots to the area which is usually temporary relief. A few weeks ago I had 3 nerves cut via robotic laparoscopic surgery. I am amazingly now pain free. BTW, went home same day. Dr Gillespie of St Joe’s in Phoenix has perfected this futuristic technique.

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I had a motorcycle accident in 2018 that caused serious injuries. After a full year, I was healed. Then one year later I started having problems with pain on sitting. After 18 months of misdiagnoses, an MRN showed scar tissue compressing two of my pudendal nerve branches. I am having decompression surgery with removal of the scar tissue in a few weeks. Curious if anybody has had this procedure and the outcome.

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@dcdusek

I had a motorcycle accident in 2018 that caused serious injuries. After a full year, I was healed. Then one year later I started having problems with pain on sitting. After 18 months of misdiagnoses, an MRN showed scar tissue compressing two of my pudendal nerve branches. I am having decompression surgery with removal of the scar tissue in a few weeks. Curious if anybody has had this procedure and the outcome.

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I sat on a donut for 14-1/2 years. The only thing that worked for me was Topamax, an anti-seizure medicine that I took off-label for an unrelated issue. I only took it for a short time – maybe 2 weeks. My PT said she had heard it works. What have you got to lose? Mikayla

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@mikaylar

I sat on a donut for 14-1/2 years. The only thing that worked for me was Topamax, an anti-seizure medicine that I took off-label for an unrelated issue. I only took it for a short time – maybe 2 weeks. My PT said she had heard it works. What have you got to lose? Mikayla

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Actually, I am asking my pain management doctor about that med today. That’s awesome that it helped you. What was your original issue?

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@dcdusek

Actually, I am asking my pain management doctor about that med today. That’s awesome that it helped you. What was your original issue?

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I have had a daily persistent headache for 26 months. This was treatment off-label.

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@dcdusek

I had a motorcycle accident in 2018 that caused serious injuries. After a full year, I was healed. Then one year later I started having problems with pain on sitting. After 18 months of misdiagnoses, an MRN showed scar tissue compressing two of my pudendal nerve branches. I am having decompression surgery with removal of the scar tissue in a few weeks. Curious if anybody has had this procedure and the outcome.

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I have peripheral neuropathy that is considerably worsened by sitting. There seems to be compression of the sciatic nerve by the piriformis muscle. Hopefully, it can be fixed by physical therapy. Has anyone experienced this? Amitriptyline has worked the best for controlling the nerve pain.

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@dcdusek

I had a motorcycle accident in 2018 that caused serious injuries. After a full year, I was healed. Then one year later I started having problems with pain on sitting. After 18 months of misdiagnoses, an MRN showed scar tissue compressing two of my pudendal nerve branches. I am having decompression surgery with removal of the scar tissue in a few weeks. Curious if anybody has had this procedure and the outcome.

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PT and a good program of home stretching works on my sciatic pain. My friend did not have coverage for PT, so I showed her my routine, and it helps her as well. The other thing that helps is laying on ice placed at the site where the piriformis and sciatic nerve converge.
Finally, sitting is a horrible culprit for me as well. I can ease it by moving – I even do some normal seated activities while standing up (typing, running my sewing machine) or lying down (reading.)

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@dcdusek

I had a motorcycle accident in 2018 that caused serious injuries. After a full year, I was healed. Then one year later I started having problems with pain on sitting. After 18 months of misdiagnoses, an MRN showed scar tissue compressing two of my pudendal nerve branches. I am having decompression surgery with removal of the scar tissue in a few weeks. Curious if anybody has had this procedure and the outcome.

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I am so sorry about your diagnosis and scar tissue
I was diagnosed with scar tissue in the spinal cord, the lowest part, the causa equina. It’s been 18 years. The Mayo Clinic doctors called that scar tissue arachnoiditis. It causes among other symptoms, serere pain in the pelvic floor. ( Mayo Clinic calls it pelvic floor tension mialgia )
I wrote about this on this site several times. As far as I know, any invasive procedure on the spinal cord scar tissue can cause more scar tissue.
Before jumping to surgery would you be able to get a second opinion ?
Maybe ay the Mayo Clinic itself?
I had epidurals, taken those meds, with no relief
Last wee I had Botox injections to relax the pelvic floor but so far, again, no relief
I ended up using a wheelchair and seating on memory foam pillows that I take everywhere I go
Good luck! I do hope you get relief sometime soon ! 💓

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@dcdusek

I had a motorcycle accident in 2018 that caused serious injuries. After a full year, I was healed. Then one year later I started having problems with pain on sitting. After 18 months of misdiagnoses, an MRN showed scar tissue compressing two of my pudendal nerve branches. I am having decompression surgery with removal of the scar tissue in a few weeks. Curious if anybody has had this procedure and the outcome.

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@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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I would love to hear from others who have had a successful surgery and how long it took to heal.

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