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.

kenyalama | @kenyalama | Sep 17, 2021
In reply to @marjorielyn1 "Just joined the group this minute. I suffered from this problem since my late teens but..." + (show)
@marjorielyn1

Just joined the group this minute. I suffered from this problem since my late teens but it became worse as I got older. I had surgical procedure for nerve entrapment in my ankle but had no idea what this pain was from since it was never the same kind or in the same place - just in any place that was usually covered with underwear. In 2016, after suffering and being unable to sit for more than 15 minutes at a time, a Pain Specialist suggested that it was a GYN problem & suggested a few diagnostic tests. I'm an RN but knew nothing about this so I went online & found a gynecologist who specializes in minimally-invasive gynecology. After listening carefully to my history & nodding without interruption, she attempted to examine me but it was too painful. She scheduled an exam with light sedation & did a Pudendal block test:& Pudendal motor latency test. Once they were positive, she scheduled me for regular blocks & pelvic PT. It's a chronic condition but it is being managed pretty well now. I stopped taking Gabapentin or any other pills in 2016.

Jump to this post

I am having trigger point injections with sedation in a few weeks. It’s Botox to relax the pelvic floor
Not sure it will help but I want to try
Has anyone tried Botox trigger point injections?
Not sure why no doctor offers me the pudendal nerve block
If this does not help I will ask for the block
I don’t know anyone helped by gabapentin and it caused me amnesia ( horrible!! )
Don’t take it!
Just yesterday I screamed twice when I felt the shooting pain you know where
Had it for twenty years
Added to trigeminal neuralgia and rheumatoid arthritis I get the work ups haha
I have pain pump for TN but does not help the pelvis and Humira and methotrexate for RA
I still survive
Meditation WORKS!

REPLY
2 replies
mikaylar | @mikaylar | Sep 17, 2021
In reply to @rkbunn "What medication was it that you started? Which doctor prescribed it for you?" + (show)
@rkbunn

What medication was it that you started? Which doctor prescribed it for you?

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Topamax. It was prescribed off-label for Migraine and Daily Persistent Headache.

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mcd123 | @mcd123 | Sep 17, 2021
In reply to @johnbishop "Hello @marjorielyn1, Welcome to Connect, an online community where patients and caregivers share their experiences, find..." + (show)
@johnbishop

Hello @marjorielyn1, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your experience and what has helped you. It's good to hear that you have it pretty well managed even though it's a chronic condition.

Do you have any other suggestions you can share with members that has helped you?

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John, I have a general,question for the neuropathy group but don't know how to post one. I was hoping you could pass it on. Three days ago my neurologist prescribed Cymbalta to accompany the Gabapentin I've been on for a few months. The first night I took it my RLS was augmented. I haven't slept in two days because of the increased RLS. I notified my doc this am that I cannot take Cymbalta. I wanted to know if Anyone else has had similar experiences with Cymbalta and have they had success with any other drug similar to Cymbalta. Thanks.

REPLY
1 reply
Moderator
Amanda Roe | @amandajro | Sep 17, 2021
In reply to @mcd123 "John, I have a general,question for the neuropathy group but don't know how to post one...." + (show)
@mcd123

John, I have a general,question for the neuropathy group but don't know how to post one. I was hoping you could pass it on. Three days ago my neurologist prescribed Cymbalta to accompany the Gabapentin I've been on for a few months. The first night I took it my RLS was augmented. I haven't slept in two days because of the increased RLS. I notified my doc this am that I cannot take Cymbalta. I wanted to know if Anyone else has had similar experiences with Cymbalta and have they had success with any other drug similar to Cymbalta. Thanks.

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@mcd123 I have tagged you in this discussion so that you may ask this question to the group.

- Member Neuropathy Journey Stories: What's Yours?
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

REPLY
mikaylar | @mikaylar | Sep 18, 2021
In reply to @kenyalama "I am having trigger point injections with sedation in a few weeks. It’s Botox to relax..." + (show)
@kenyalama

I am having trigger point injections with sedation in a few weeks. It’s Botox to relax the pelvic floor
Not sure it will help but I want to try
Has anyone tried Botox trigger point injections?
Not sure why no doctor offers me the pudendal nerve block
If this does not help I will ask for the block
I don’t know anyone helped by gabapentin and it caused me amnesia ( horrible!! )
Don’t take it!
Just yesterday I screamed twice when I felt the shooting pain you know where
Had it for twenty years
Added to trigeminal neuralgia and rheumatoid arthritis I get the work ups haha
I have pain pump for TN but does not help the pelvis and Humira and methotrexate for RA
I still survive
Meditation WORKS!

Jump to this post

I have told others on here and it really worked for me.............I took Topamax (an anti-seizure med) after sitting on a donut for 14-1/2 years. Ask your doctor.

REPLY
kenyalama | @kenyalama | Sep 19, 2021
In reply to @marjorielyn1 "My Gyn has ordered Valium vaginal suppositories because I get spasms of the pelvic floor muscles...." + (show)
@marjorielyn1

My Gyn has ordered Valium vaginal suppositories because I get spasms of the pelvic floor muscles. They are severe & random & wake me up sometimes. The suppositories probably help but I'm not sure. I also have an extensive repertoire of relaxation methods from the physical therapist.

Jump to this post

Thank you all for your suggestions/comments
I do use the suppositories but it’s a temporary relief
PT is hard due to all other issues, I will post my experience with trigger point injections due on sept 28th
My very best to all !

REPLY
1 reply
sunflower1 | @sunflower1 | Sep 19, 2021
In reply to @ahayes "With nerve entrapment, what I am experiencing is that for true nerve compression or entrapment, the..." + (show)
@ahayes

With nerve entrapment, what I am experiencing is that for true nerve compression or entrapment, the only permanent relief is surgical release/decompression of the nerve.

I had a terrible tibial nerve entrapment that caused me so much pain I wanted to die. When I had surgery to release that nerve in October, it felt better quickly. Now, I need to go back to the surgeon and have more nerves decompressed to fix my other "pain spots".

I got this problem from a surgery, too. It took 4 years, failures, trying every conservative option possible, in order to find the right doctors to fix my problem. Doctors who did believe me. And to get to a point where I believed what I was told, that surgery would help. To rule out all other options.

There are doctors who specialize in peripheral nerve release surgery and others who dont sub specialize but at very good. I have seen several sub specialists but ultimately went with a plastic reconstructive surgeon closer to me for many reasons.

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Hi @ahayes. I know this is an old post, but thought I'd take a chance. How are you doing now? I've been told a couple branches of my tibial nerve are damaged (motor function of medial plantar and lateral plantar nerves aren't working well). Still trying to find answers/solution, and trying to find a doc who can help before it's too late to save the muscles. Interested in learning what others have experienced.

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1 reply
marjorielyn1 | @marjorielyn1 | Sep 20, 2021
In reply to @kenyalama "Thank you all for your suggestions/comments I do use the suppositories but it’s a temporary relief..." + (show)
@kenyalama

Thank you all for your suggestions/comments
I do use the suppositories but it’s a temporary relief
PT is hard due to all other issues, I will post my experience with trigger point injections due on sept 28th
My very best to all !

Jump to this post

The truth is that the only real relief I get is from the trigger point injections and nerve blocks every 3 months. Everything else just makes life bearable. I hate that I have to do that for the rest of my life.

REPLY
1 reply
greenacres | @greenacres | Sep 20, 2021
In reply to @marjorielyn1 "The truth is that the only real relief I get is from the trigger point injections..." + (show)
@marjorielyn1

The truth is that the only real relief I get is from the trigger point injections and nerve blocks every 3 months. Everything else just makes life bearable. I hate that I have to do that for the rest of my life.

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If you don't mind sharing where do they inject you or place the nerve blocks?

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1 reply
mikaylar | @mikaylar | Sep 21, 2021
In reply to @greenacres "If you don't mind sharing where do they inject you or place the nerve blocks?" + (show)
@greenacres

If you don't mind sharing where do they inject you or place the nerve blocks?

Jump to this post

I am so glad the nerve blocks are working Marjorie. I had only one treatment of several needles and it just aggravated it. They inject in the vaginal/rectal area where you direct them to the pain. Mikayla

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