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.

@dmburns54

Hi @lorid,
I injured my Pudendal Nerve in 1995 and had surgery in 2001 at the Mayo
Cinic that was extremely effective. I don’t believe the Mayo Clinic treats
this condition currently. Please tell me where you are located and I will
try to help you find a doctor that can help you.
Take care,
Darrell Burns

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I heard Stanley antolak at Mayo did the surgery but he is mostly retired now I think. I tried mayo and they do pudendal nerve blocks through their pain clinic. The pudendal block did nothing so now I’ve been searching the country for the best people who really know how to treat PNE. Could we make a list together on this site?

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I have the same problem with the patch. It won't work in the area where my pain is…

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@cheryl1468

Same question — I put lidocaine cream but that does nothing. Pain patch wouldn’t stay on in that area?

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This is my first post on this site, I just joined. I have pudental neuralgia now for eight years. The two post above pretty much say everytghing for me too. I am in excrucisting pain now that seems to be permenrnt, no let up. I have been & tryed everything. I got PN from a surgery for a spinal cord injury. Just recently broke my hip and the fx and
and surgery caused more spinal damage. Pretty much home bound now. I am at a point of giving up. I trust God but pray daily that He will take me home! My worst pain is rectal and vaginal where the nerves are and can take no more. Excuse spelling—blind in one eye, Have neurogenic bowel & bladder from spinal injury. I have no life.

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I have it too and it is the worst ! I’ve tried injections , nerve blocks, radio frequency ablation all with no help! I recently had to quit my job because of this ! I am in Houston tx

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Can you tell me if you are in constant rectal burning pain—-feels like butcher knife sticking in me–up all night it is worse—-have been to rectal-colon and they keep saying nothing is there—I could scream!!! 3am now in agony!!
I live in Phila. Pa—–Cannot lay on back—or stand or walk too much. Ice on butt. Sorry for your pain!

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@trishj46

Can you tell me if you are in constant rectal burning pain—-feels like butcher knife sticking in me–up all night it is worse—-have been to rectal-colon and they keep saying nothing is there—I could scream!!! 3am now in agony!!
I live in Phila. Pa—–Cannot lay on back—or stand or walk too much. Ice on butt. Sorry for your pain!

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Yes, this is exactly what I've been going through for nearly 40 years….and no end in sight!!!

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I'm in pain everyday from serve nerve damage to the point it's driving me crazy. Doctors can't seem to figure out whats wrong with me ! Really! I'll pray for you everyday! And know your not alone

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@resawaller

I'm in pain everyday from serve nerve damage to the point it's driving me crazy. Doctors can't seem to figure out whats wrong with me ! Really! I'll pray for you everyday! And know your not alone

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Where do we find profile??

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@lioness

I also have nerve entrapment from lower back to growth n and use ice bags that help I have Gabapentin for it but that doesn't work 24/7 we are all pain warriors here

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Yes, nerve pain is HE'LL! And no one seems to understand,and it's hard to explain. The burning stabbing,needle sticks,and numbness is so bad! And taking care of family is a chanellege everyday! I will pray for you as I know your pain!! God bless all you pain worries!

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@trishj46

Where do we find profile??

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@trishj46 If you click on the blue hyperlink under the avatar symbol on the left, you can go to a person's profile. If it is your own, you can edit it if desired.
Ginger

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@gingerw

@trishj46 If you click on the blue hyperlink under the avatar symbol on the left, you can go to a person's profile. If it is your own, you can edit it if desired.
Ginger

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Thank you Ginger!

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@trishj46

Can you tell me if you are in constant rectal burning pain—-feels like butcher knife sticking in me–up all night it is worse—-have been to rectal-colon and they keep saying nothing is there—I could scream!!! 3am now in agony!!
I live in Phila. Pa—–Cannot lay on back—or stand or walk too much. Ice on butt. Sorry for your pain!

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@trishj46 Hello, I had some discomfort and some sitting pain in that area. It was in the whole glute region, too, as well. I am convinced for me tight muscles / myofascia were causing nerve compression (not quite "nerve entrapment" but close). I found the enzymes nattokinase (Drs. Best, 2000 U), serrapeptidase (Biomedix Lab) and lumbrokinase (Drs. Best) – all available on Amazon helped me a lot. It took a while (several months). You take those on an empty stomach between meals. They may help digest scar tissue / adhesions / relieve some tension and relieve nerve irritation. That is definitely "alternative medicine". However, barring it causes you stomach/digestive issues the only other side effect of those generally reported is to avoid if you have a blood disorder or are on blood thinners already and perhaps discontinue if you get an infection. Otherwise, these enzymes have been used by many for years.

For me, stretching and exercising along with the above enzymes helped my tension go away along with other supplements (resveratrol, quercetin, higher vitamin C with several meals up to the maximum limit (<2000 mg/day)). While speculative, these supplements may work in aiding proper tissue remodeling and lessen the nerve pain somewhat if it is caused by tight muscles. For exercise, I also use a vibrating platform as well as lift weights, do pilates exercises and TRX suspension exercises. Also, have you seen a pelvic floor physical therapist? Tried to relieve internal trigger points (like described in the book "a headache in the pelvis" by Anderson and Wise)? Tried Kegels while sitting? Trigger points can often cause this type of pain internally. That could be the source of the pain. Obviously, work with your physical therapists and follow their recommendations, too, and do things you can tolerate. Some exercises may not be agreeable to you. Those are some options if you are able to do those. Good luck.

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@richman54660

@trishj46 Hello, I had some discomfort and some sitting pain in that area. It was in the whole glute region, too, as well. I am convinced for me tight muscles / myofascia were causing nerve compression (not quite "nerve entrapment" but close). I found the enzymes nattokinase (Drs. Best, 2000 U), serrapeptidase (Biomedix Lab) and lumbrokinase (Drs. Best) – all available on Amazon helped me a lot. It took a while (several months). You take those on an empty stomach between meals. They may help digest scar tissue / adhesions / relieve some tension and relieve nerve irritation. That is definitely "alternative medicine". However, barring it causes you stomach/digestive issues the only other side effect of those generally reported is to avoid if you have a blood disorder or are on blood thinners already and perhaps discontinue if you get an infection. Otherwise, these enzymes have been used by many for years.

For me, stretching and exercising along with the above enzymes helped my tension go away along with other supplements (resveratrol, quercetin, higher vitamin C with several meals up to the maximum limit (<2000 mg/day)). While speculative, these supplements may work in aiding proper tissue remodeling and lessen the nerve pain somewhat if it is caused by tight muscles. For exercise, I also use a vibrating platform as well as lift weights, do pilates exercises and TRX suspension exercises. Also, have you seen a pelvic floor physical therapist? Tried to relieve internal trigger points (like described in the book "a headache in the pelvis" by Anderson and Wise)? Tried Kegels while sitting? Trigger points can often cause this type of pain internally. That could be the source of the pain. Obviously, work with your physical therapists and follow their recommendations, too, and do things you can tolerate. Some exercises may not be agreeable to you. Those are some options if you are able to do those. Good luck.

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Lots of good suggestions for me to consider….Thanks!

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@richman54660

@trishj46 Hello, I had some discomfort and some sitting pain in that area. It was in the whole glute region, too, as well. I am convinced for me tight muscles / myofascia were causing nerve compression (not quite "nerve entrapment" but close). I found the enzymes nattokinase (Drs. Best, 2000 U), serrapeptidase (Biomedix Lab) and lumbrokinase (Drs. Best) – all available on Amazon helped me a lot. It took a while (several months). You take those on an empty stomach between meals. They may help digest scar tissue / adhesions / relieve some tension and relieve nerve irritation. That is definitely "alternative medicine". However, barring it causes you stomach/digestive issues the only other side effect of those generally reported is to avoid if you have a blood disorder or are on blood thinners already and perhaps discontinue if you get an infection. Otherwise, these enzymes have been used by many for years.

For me, stretching and exercising along with the above enzymes helped my tension go away along with other supplements (resveratrol, quercetin, higher vitamin C with several meals up to the maximum limit (<2000 mg/day)). While speculative, these supplements may work in aiding proper tissue remodeling and lessen the nerve pain somewhat if it is caused by tight muscles. For exercise, I also use a vibrating platform as well as lift weights, do pilates exercises and TRX suspension exercises. Also, have you seen a pelvic floor physical therapist? Tried to relieve internal trigger points (like described in the book "a headache in the pelvis" by Anderson and Wise)? Tried Kegels while sitting? Trigger points can often cause this type of pain internally. That could be the source of the pain. Obviously, work with your physical therapists and follow their recommendations, too, and do things you can tolerate. Some exercises may not be agreeable to you. Those are some options if you are able to do those. Good luck.

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Thank you Richman for all your information. I don't think my stomsch would tolerate thosesupplements or exercise. Thats why I have such a hard time staying on other meds because I seem sensitive to everything! Exercise sets off the pn nerve with me, even walking. I did try physical therapy, but same problem,. Do you have PN or not sure?? Your doing a lot of work to help youtself, and I admire that, its not easy! After 8 years I have done so much, and
feel like I have accomplished nothing! I hope you have good results! Thanks for thinking of me!
I will keep you in my prayers and let me know how you are getting along! Good Luck to you too.

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@trishj46

Can you tell me if you are in constant rectal burning pain—-feels like butcher knife sticking in me–up all night it is worse—-have been to rectal-colon and they keep saying nothing is there—I could scream!!! 3am now in agony!!
I live in Phila. Pa—–Cannot lay on back—or stand or walk too much. Ice on butt. Sorry for your pain!

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I had rectal repair surgery in 2006 which left me in agonizing pain. The surgery also caused peripheral nerve damage in both my feet. I didn’t find a good neurologist until 2017. He usages injections of a steroid and so far they work for me. The injections usually last for about 7 months at a time with little to no pain. I maybe somewhat different in that I was diagnosed with Central Sensitization Syndrome and have become chemical sensitive. This Dr. name is Zhao and you can find him in San Gabriel California. He owns the California Headache and Pain Center.

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