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.

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@dhc684

Has anyone tried or heard of using Sprint PNS for pudendal nerve pain?

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I’m not 100% sure , but I think the sprint device is a short term thing , or at least it was when it first came out.

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The Sprint goes in for 60 days and then the claim is the nerve signal to the brain is reprogrammed so the relief continues after it is removed. However there research is for more common issues like back pain and not for pudendal nerve pain.

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No one has told me I had what you have. My GYN said I have Vulvodynia. He sent me to a nerve doctor who gave me a Pudendal nerve injection which worked for 12 hours. He then did a Cyroablation of the Pudendal nerve which didn’t work. My female area starts to hurt when I start sitting and then it lasts all day and every day. I take lyrica and I hope when the dose is high enough it will help. I have had this pain for 4 years. My GYN referred me a pain clinic because nothing helps.

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@dhc684

The Sprint goes in for 60 days and then the claim is the nerve signal to the brain is reprogrammed so the relief continues after it is removed. However there research is for more common issues like back pain and not for pudendal nerve pain.

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You are correct. 60 day implant of small like fish hook that is inserted near the nerve causing the pain. Not inserted into the spine as others. The theory is that nerves will be re programed with the brain to block the pain. I am scheduled to have the procedure done in September. My pain Dr. claims that his sister who is also a pain DR has completed many of these types of procedures in the Chicago area with great success . I have been trying to connect with someone who has had the procedure done but to no avail.

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I have burning in my female parts. They really never named it. I had a Pudendal nerve injection which stopped the pain for 12 hours. They the doctor froze my Pudendal nerve but that did not work. Now I am taking Lyrica which calms the pain dow n by 10%. Where is your pain?

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@mm1

You are correct. 60 day implant of small like fish hook that is inserted near the nerve causing the pain. Not inserted into the spine as others. The theory is that nerves will be re programed with the brain to block the pain. I am scheduled to have the procedure done in September. My pain Dr. claims that his sister who is also a pain DR has completed many of these types of procedures in the Chicago area with great success . I have been trying to connect with someone who has had the procedure done but to no avail.

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What is the fish hook procedure called. I would like to ask my doctors about it. I am in Atlanta but willing to come to Chicago if the procedure is successful.

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@mm1

You are correct. 60 day implant of small like fish hook that is inserted near the nerve causing the pain. Not inserted into the spine as others. The theory is that nerves will be re programed with the brain to block the pain. I am scheduled to have the procedure done in September. My pain Dr. claims that his sister who is also a pain DR has completed many of these types of procedures in the Chicago area with great success . I have been trying to connect with someone who has had the procedure done but to no avail.

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Please let us know how the sprint procedure goes. I have a trial of Stimwave in October.

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@francesmharris123

I have burning in my female parts. They really never named it. I had a Pudendal nerve injection which stopped the pain for 12 hours. They the doctor froze my Pudendal nerve but that did not work. Now I am taking Lyrica which calms the pain dow n by 10%. Where is your pain?

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I have pudendal nerve damage. The damage started in my feet and spread up the backs of my legs to my glutes. It caused sexual distinction as well, plus slow bladder. I take Lyrica. All this was caused from lupus. Winsantor just sent me an email about the third Pirenzepine (WST-057) trial enrollment. I was shocked. I hope I get accepted because this cream reverses pn in people the first and second trials. It has a good safety profile.

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@lupusgirl

I have pudendal nerve damage. The damage started in my feet and spread up the backs of my legs to my glutes. It caused sexual distinction as well, plus slow bladder. I take Lyrica. All this was caused from lupus. Winsantor just sent me an email about the third Pirenzepine (WST-057) trial enrollment. I was shocked. I hope I get accepted because this cream reverses pn in people the first and second trials. It has a good safety profile.

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Disfunction*

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In reply to @lupusgirl "Disfunction*" + (show)
@lupusgirl

Disfunction*

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I had this monster for 14 years. The only thing that cured it in the end of was anti-seizure medicine that I took for an unrelated condition. And it worked quickly.
Mikayla

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