1. < Chronic Pain

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.

Amanda Roe | @amandajro | Feb 28, 2023
In reply to @moverland "Has anyone been diagnosed/treated for Pudental Nerve Entrapment ( neuropathy)? , I have had more than..." + (show)
@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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Hello @moverland. A decade worth of searching for relief is quite a long time. I am glad to hear you have an upcoming appointment to keep exploring your options for some much needed relief.

I wanted to bring you into an existing discussion on this same topic already happening, so you will notice that I have moved your post here:
- Pudendal Nerve Entrapment/Neuropathy/Damage: https://connect.mayoclinic.org/discussion/pudendal-nerve-entrapmentneuropathydamage/

I did this so you could reply to @gaylerenee and @bcool123 who have joined you already.

Is your upcoming appointment with a provider at the same hospital that you've been seen at the last 10 or so years or is this a new location?

REPLY
mikaylar | @mikaylar | Mar 1, 2023
In reply to @moverland "Has anyone been diagnosed/treated for Pudental Nerve Entrapment ( neuropathy)? , I have had more than..." + (show)
@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.

Jump to this post

This is a monster. I sat on a donut for 14-1/2 years and the only thing that finally got rid of it was an anti-seizure medicine for an unrelated matter. Ask your doctor.

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1 reply
westcom | @westcom | Mar 2, 2023
In reply to @mikaylar "This is a monster. I sat on a donut for 14-1/2 years and the only thing..." + (show)
@mikaylar

This is a monster. I sat on a donut for 14-1/2 years and the only thing that finally got rid of it was an anti-seizure medicine for an unrelated matter. Ask your doctor.

Jump to this post

Would you mind sharing what medication helped you? I believe I am suffering from this Type of neuropathy but diagnosis not definitive at this time. Thank you.

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1 reply
bunnybear | @bunnybear | Mar 2, 2023

I need to know the name of the medication too. Thanks! Gayle

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mikaylar | @mikaylar | Mar 2, 2023
In reply to @westcom "Would you mind sharing what medication helped you? I believe I am suffering from this Type..." + (show)
@westcom

Would you mind sharing what medication helped you? I believe I am suffering from this Type of neuropathy but diagnosis not definitive at this time. Thank you.

Jump to this post

It was Topamax. I only took it for maybe 2 weeks. My pelvic PT told me that she had read that this helps. Good luck!

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1 reply
moverland | @moverland | Mar 2, 2023

My upcoming appointment is with a Urogynocoligist @ a clinic that specializes in women's issues. I was referred to her a decade ago by my PT for another possible cause of my neuropathy. That proved not to be the issue. And pudental nerve entrapment was not even considered for possible cause by thePT/MD/OD/Chiropractor/
MassageTherapist I was seeing! I talked about the "neon organs burning" feeling even. Hopefully I will get a "reason" even if there isn't acute.🤞

REPLY
1 reply
westcom | @westcom | Mar 3, 2023
In reply to @moverland "My upcoming appointment is with a Urogynocoligist @ a clinic that specializes in women's issues. I..." + (show)
@moverland

My upcoming appointment is with a Urogynocoligist @ a clinic that specializes in women's issues. I was referred to her a decade ago by my PT for another possible cause of my neuropathy. That proved not to be the issue. And pudental nerve entrapment was not even considered for possible cause by thePT/MD/OD/Chiropractor/
MassageTherapist I was seeing! I talked about the "neon organs burning" feeling even. Hopefully I will get a "reason" even if there isn't acute.🤞

Jump to this post

Please reply back about your urogynogogy appointment and whether you received new insights. That would be helpful direction for others. What is the “neon organ burning” you describe. I have burning pain 24/7; meds and topical creams provide no relief. The Interventional Pain doctor wants to try an injection in the ganglion of impar to see if nerves can be calmed down before considering nerve blocks. Did you ever have nerve blocks for the pudendal neuralgia?

REPLY
1 reply
mikaylar | @mikaylar | Mar 3, 2023
In reply to @westcom "Please reply back about your urogynogogy appointment and whether you received new insights. That would be..." + (show)
@westcom

Please reply back about your urogynogogy appointment and whether you received new insights. That would be helpful direction for others. What is the “neon organ burning” you describe. I have burning pain 24/7; meds and topical creams provide no relief. The Interventional Pain doctor wants to try an injection in the ganglion of impar to see if nerves can be calmed down before considering nerve blocks. Did you ever have nerve blocks for the pudendal neuralgia?

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For me, the nerve blocks just irritated it more.

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1 reply
moverland | @moverland | Mar 3, 2023
In reply to @mikaylar "For me, the nerve blocks just irritated it more." + (show)
@mikaylar

For me, the nerve blocks just irritated it more.

Jump to this post

My appointment isn't until May unfortunately but I will.post afterwards. The "neon orange burning" describes the extremely intense pins/needles feelings throughout my entire vagina/rectal area.I have to sit on ice pack ti calm it down along with Tramadol/Tylonol combo.

REPLY
2 replies
mikaylar | @mikaylar | Mar 3, 2023
In reply to @moverland "My appointment isn't until May unfortunately but I will.post afterwards. The "neon orange burning" describes the..." + (show)
@moverland

My appointment isn't until May unfortunately but I will.post afterwards. The "neon orange burning" describes the extremely intense pins/needles feelings throughout my entire vagina/rectal area.I have to sit on ice pack ti calm it down along with Tramadol/Tylonol combo.

Jump to this post

I am so sorry for you. I remember the pain. Read my post about the anti-seizure medicine I took that worked.

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