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 Support Group.

@cake

I'd love to converse. This is such a lonely condition. I'm in Wisconsin. I'll email you later or tomorrow.
Helen

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Sure..hope u got my e- mail before they deleted it. They are right..it's not safe,!

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@1mepnurse

Sure..hope u got my e- mail before they deleted it. They are right..it's not safe,!

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I did. I'll send a message tomorrow. 😁

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@cake

I did. I'll send a message tomorrow. 😁

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Ok, sure. At 2:15 pm I will b getting ready & leaving for my 1st Pelvic floor therapy. They say some of their treatments may b uncomfortable...oh we, ANYTHING to help !!!😜😜😍😍

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@1mepnurse

Ok, sure. At 2:15 pm I will b getting ready & leaving for my 1st Pelvic floor therapy. They say some of their treatments may b uncomfortable...oh we, ANYTHING to help !!!😜😜😍😍

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It's not as bad as it sounds. 😉 If it hurts let them know right away and they should proceed more gently. Good luck!

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@1mepnurse

After 8 weeks of all these monster symptoms, I had a Nerve Bock of the Pudendal Nerve, under CT scan guidance. Cortisone & lots of numbing meds were injected.
I got NO improvement, SO....it is ruled that I do NOT have PNN.
In researching & with my Dr & chiropractors help, tomorrow I go to an highly recommended Pelvic Floor Therapy! I spoke with one of them. It's MORE THAN LIKELY something triggering these pelvic floor symptoms.
Some of their therapy is uncomfortable, but she says I should start getting some relief with these treatments. I am VERY hopeful!!

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I've had many back operations including injections and nerve blocks. Surgeries cause an incurable disease called arachnoiditis which is caused by spinal leak from the bad surgery here at the Mayo Clinic. Haven't slept for years all night ain't gone too many doctors to try and figure out what's going on with my pelvic area. Finally got you a great pain doctor says look at you want to sleep at night? I am taking oxycodone 5 mg at night and I sleep like a baby now. I've given in cuz there is no cure and there's no fix. Opioids aren't bad you just got to know how to take him and get the right kind of doctor to give it to you. Just be careful don't overdo it control it exercise like you're doing but stop the injections and nerve blocks. Just stop the pain. 5mg Oxycodone is not going to hurt you once or twice a day.

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@1mepnurse

Ok, sure. At 2:15 pm I will b getting ready & leaving for my 1st Pelvic floor therapy. They say some of their treatments may b uncomfortable...oh we, ANYTHING to help !!!😜😜😍😍

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@cake @1mepnurse

Cake, I think we have talked a little bit a while back. I apologize to both of your for butting in on your conversation. I was checking out another forum for pain sufferers and there were numerous people mentioning Dr. Forest Tennant. Of course I had to check it out and I'm glad I did. He owns/runs http://www.arachnoiditishope.com and http://www.intractablepain.com I urge anyone that is in pain to check those sites out. He provides questionnaires to fill out and lots of other info. for you to take in to your doctor in hopes that they are willing to be open minded and try a few other things to help your pain. He also provides a self help protocol. I think I read everything on both sites. It validated so many of the symptoms I've suffered for so many years!!

I started to use a couple of the things he recommends and I have to say... my hip pain has gone down considerably and I've only been using these things for about 3 weeks. Sometimes you have to wait up to 3 months for the full affect of the supplements to kick in. I ditched the 500mg of Naproxen and started taking 1500mg of Tumeric per day and I started taking Palmitoylethanolamide (PEA) 600mg 2X per day. Here is an eye opening article to read about the Palmitoylethanolamide. It really makes you wonder why doctors don't recommend this for pain instead of opioids and other prescription drugs? They are finding it to be just as effective, if not more effective than high dose opioids! If you read this article, please don't lose interest skimming through all the scientific lingo. The results of their patients is what you want to see! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/

You may or may not have arachnoiditis but it goes hand in hand with nerve pain and neuroinflammation. If you can start to control the inflammation it will help curb the nerve pain and improve your over all health. I hope you two find some pain relief!!

@cake I think we talked about integrative pain specialist I was seeing. She moved her practice from Wausau down to Milwaukee. Is that closer to you? If not, she is also seeing patients from all over the U.S. via televisit. I just found out that she and Dr. Tennant know each other pretty well. They specialize in treating many of the same conditions. If you want to look her up, her new website is https://www.hypermobilitymd.com/medical-services If you scroll down and click on "Learn More" under "Office Policies and Procedures" it will; show her phone number.

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@qball2019

@cake @1mepnurse

Cake, I think we have talked a little bit a while back. I apologize to both of your for butting in on your conversation. I was checking out another forum for pain sufferers and there were numerous people mentioning Dr. Forest Tennant. Of course I had to check it out and I'm glad I did. He owns/runs http://www.arachnoiditishope.com and http://www.intractablepain.com I urge anyone that is in pain to check those sites out. He provides questionnaires to fill out and lots of other info. for you to take in to your doctor in hopes that they are willing to be open minded and try a few other things to help your pain. He also provides a self help protocol. I think I read everything on both sites. It validated so many of the symptoms I've suffered for so many years!!

I started to use a couple of the things he recommends and I have to say... my hip pain has gone down considerably and I've only been using these things for about 3 weeks. Sometimes you have to wait up to 3 months for the full affect of the supplements to kick in. I ditched the 500mg of Naproxen and started taking 1500mg of Tumeric per day and I started taking Palmitoylethanolamide (PEA) 600mg 2X per day. Here is an eye opening article to read about the Palmitoylethanolamide. It really makes you wonder why doctors don't recommend this for pain instead of opioids and other prescription drugs? They are finding it to be just as effective, if not more effective than high dose opioids! If you read this article, please don't lose interest skimming through all the scientific lingo. The results of their patients is what you want to see! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/

You may or may not have arachnoiditis but it goes hand in hand with nerve pain and neuroinflammation. If you can start to control the inflammation it will help curb the nerve pain and improve your over all health. I hope you two find some pain relief!!

@cake I think we talked about integrative pain specialist I was seeing. She moved her practice from Wausau down to Milwaukee. Is that closer to you? If not, she is also seeing patients from all over the U.S. via televisit. I just found out that she and Dr. Tennant know each other pretty well. They specialize in treating many of the same conditions. If you want to look her up, her new website is https://www.hypermobilitymd.com/medical-services If you scroll down and click on "Learn More" under "Office Policies and Procedures" it will; show her phone number.

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@qball2019

Thanks for the link to the article about PEA (Palmitoylethanolamide). I will look at it.

My wife Linda, who has severe PN burning in her feet, started taking PEA a few weeks ago. So far she tells me that she thinks it is giving her energy. I'm not sure about what it is doing for her pain, but it seems like (and I know this is too early to come to any conclusions whatsoever) she is in less pain overall. Just my impression, not her statement, although she and I have not discussed it in depth yet. She did stop it for 2-3 days because she thought it was making her tinnitus worse. But I think she is back on it again. She takes four 400 mg pills per day. In case anyone wants to try it, here is the link to the kind she is currently taking:
https://smile.amazon.com/gp/product/B01HFN5R9I/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

Best, Hank

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@cake

I hope you get some relief. What country or state are you located? I've had pudendal neuralgia symptoms for 20 months now.

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I'm in the Chicago area. You can get relief to a life extent but it takes time.

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@cake

I'd love to converse. This is such a lonely condition. I'm in Wisconsin. I'll email you later or tomorrow.
Helen

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Hi Helen. It is but you can get relief it takes time.

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@angellagalante

Hi Helen. It is but you can get relief it takes time.

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Hi Angella, what have you done to get relief? Thank you!

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