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.

@tullson

I suffer from pudendal neuralgia, loss of penile sensation. I would very much like to have conversation with you
can you contact me? ***

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So, tell me what is going on with you and how you are suffering?

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@mikaylar

Good idea, John. It is probably best to stay on this site. What is the secure personal contact information?

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Hi @mikaylar, Connect has a send private message feature that can be used to share personal contact information so that it's not out in the public domain. The Help Center (link at the top right of Connect pages) has step by step instructions for how to send a private message along with other tasks on Connect. Here's the link - https://connect.mayoclinic.org/help-center/.

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@johnbishop

Hi @mikaylar, Connect has a send private message feature that can be used to share personal contact information so that it's not out in the public domain. The Help Center (link at the top right of Connect pages) has step by step instructions for how to send a private message along with other tasks on Connect. Here's the link - https://connect.mayoclinic.org/help-center/.

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Thank you, John.

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Can you describe the symptoms. Mine has been labeled idiopathic.

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@tullson

I suffer from pudendal neuralgia, loss of penile sensation. I would very much like to have conversation with you
can you contact me? ***

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So, tell me what is going on with you

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@jplwilson1

Can you describe the symptoms. Mine has been labeled idiopathic.

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Welcome @jplwilson1, I'm not sure who you were asking about the symptoms but thought I would share this reference that talks about the condition and it's symptoms while we wait for other members to respond.

--- Pudendal neuralgia: https://www.nhs.uk/conditions/pudendal-neuralgia/.

Can you share a little more about your diagnosis and how long you've had it?

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@dorcee

@bkruppa, I have been through now 20 plus years of this. I havent read all of the posts, but I dont see anyone suggesting what has worked best in my case; which is a combination of cymbalta and lyrica. I HATE to be on these drugs, especially cymbalta. But the synergy of these two drugs together has been the ONLY thing that calmed the nerve pain.
I would be very interested to see if anyone else has tried this. It has worked successfully for diabetic nerve pain as well -- both are peripheral nerves.

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After I was in a car accident I had a bad nerve pain in my arm/hand that was coming from the nerve going through the shoulder which had a partially torn ligament. I was on lyrics at a very high dose and it did not stop the pain They took me off of the Lyrica and put me on cymbals at a high dose and after two months the pain was gone. I still have to be careful with the shoulder not to throw things. Now I am having pudendal neuralgia and Pt, healing has helped and am now on cymbalta and my pain levels are the best they have been. My nerve is still active (hypersensitive) causing urinary frequency urge/reflex incontinence but the extreme pain and fecal incontinence is gone and I am able to sit with minimal pain. I had pelvic pain prior and some incontinence to my prosectomy and some of the pain was probably due to surgery but the nerve sensitivity was there previously giving me pain

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Has anyone been diagnosed/treated for Pudental Nerve Entrapment ( neuropathy)? ,
I have had more than a decade of medical diagnoses of spinal issues/treatments with no relief for severe burning, pins/needles in the pelvic area. Awaiting an appointment with a Uro-Gynocoligist in May.

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@moverland

Has anyone been diagnosed/treated for Pudental Nerve Entrapment ( neuropathy)? ,
I have had more than a decade of medical diagnoses of spinal issues/treatments with no relief for severe burning, pins/needles in the pelvic area. Awaiting an appointment with a Uro-Gynocoligist in May.

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Yes, I’ve had pudental nerve entrapment on the left side only since about 2010-12. I cannot sit with comfort. They first diagnosed it as sacroiliac joint syndrome but none of the cortisone injections ever worked at all. Then I had an EMG test that was positive for PNE on the left side only. I don’t think they do that test anymore. So I have extreme burning pain in the left perineal area much of the time. I also have low back pain, left hip pain (though several doctors say the hip joint is ok) and tailbone pain. The good news is, I had the Nevro Spinal Cord Stimulator trial recently. It was for my degenerative disc disease and back pain. But it did help the PNE as well as all the other back pain. I will be getting permanent placement of the stimulator soon. However, I am not getting my hopes up yet as people on here have reported mixed results after permanent placement. On the hopeful side, my friend has had the Boston Scientific stimulator for about 4/5 years and says she probably couldn’t get out of bed without it. So here’s hoping! Gayle

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@moverland

Has anyone been diagnosed/treated for Pudental Nerve Entrapment ( neuropathy)? ,
I have had more than a decade of medical diagnoses of spinal issues/treatments with no relief for severe burning, pins/needles in the pelvic area. Awaiting an appointment with a Uro-Gynocoligist in May.

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I have had PN for about two years. It started out with a cold, cold cold feet but now my feet are cold one day and burning up the next. Anyone else have these mixed symptoms? Appreciate all the info that I get on connect.
Peace to all, Bcool123

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