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Chronic, severe pain due to pudendal neurolgia

Posted by sapphiregirl @sapphiregirl, Apr 26 7:50am

Does anyone know or have pudendal neurolgia? I have lived with it for 6 years, 24/7, every single day, seen many specialists, had many tests and was misdiagnosed in the beginning. 3 years ago, I had a pudendal nerve block and it was botched so now I have numbness and more pain. Been on gabapentin for a few years but am now weaning off because it’s useless. My life has been put on halt cos I rarely leave the house. Bedridden mostly. Doctors don’t know what to do with me.

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sapphiregirl | @sapphiregirl | Apr 30 1:23pm
In reply to @rosac "Hi Sapphiregirl, Yes I have PN 24/7 I suffered for 3 years being misdiagnosed and mistreated...." + (show)
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Hi Sapphiregirl,
Yes I have PN 24/7
I suffered for 3 years being misdiagnosed and mistreated. My last nerve block left me bedridden. Maybe we had the same bad doctors? I live in FL.

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@rosac
I live in MS. Maybe our doctors went to the same medical school in which case were taught nothing about PN.

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sapphiregirl | @sapphiregirl | Apr 30 1:27pm
In reply to @dcdusek "What other procedures have you done?" + (show)
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What other procedures have you done?

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@dcdusek
Just a lot of tests. The usual, MRIs, ultrasound, etc. now just started physical therapy. See how that goes

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tracey1327 | @tracey1327 | May 3 8:59am

Hi, i live in Australia. I also have PN, although undiagnosed as doctors won't listen and I have many other chronic pain issues. I have recently been started on Clonadine for other pain issues. It is not usually a pain medication, it is used for high blood pressure, however, recently it has also been used off label to treat chronic pain. I am finding that it is working much Bette than some strong pain meds that i have tried over the years. I know it is available in the US as well. If you can get your doctor to let you try it, I recommend it. My pain certainly hasn't gone away, but it is much better than it was. Good luck to all of you, my heart goes goes out to everyone with chronic pain who can't get the answers we do desperately deserve 💙

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sanasamawi | @sanasamawi | 6 days ago
In reply to @tracey1327 "Hi, i live in Australia. I also have PN, although undiagnosed as doctors won't listen and..." + (show)
Profile picture for tracey1327 @tracey1327

Hi, i live in Australia. I also have PN, although undiagnosed as doctors won't listen and I have many other chronic pain issues. I have recently been started on Clonadine for other pain issues. It is not usually a pain medication, it is used for high blood pressure, however, recently it has also been used off label to treat chronic pain. I am finding that it is working much Bette than some strong pain meds that i have tried over the years. I know it is available in the US as well. If you can get your doctor to let you try it, I recommend it. My pain certainly hasn't gone away, but it is much better than it was. Good luck to all of you, my heart goes goes out to everyone with chronic pain who can't get the answers we do desperately deserve 💙

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@tracey1327 hi Tracey my heart goes out to you. I have the same thing for over 3 1/2 years. Nothing have helped me. I make an appointment at Cleveland clinic not till the end of July. I’m praying for a solution. You will be in my prayers. Thank you for sharing.

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maka1104 | @maka1104 | 6 days ago

So many of us out here that are in stunning pain. We have all done ‘all the things’. I haven’t seen any success stories. In fact for the most part medicine eludes us. They just don’t care. Manage the best you can, love yourself and let’s never give up hope.

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sapphiregirl | @sapphiregirl | 3 days ago
In reply to @sapphiregirl "@dcdusek Just a lot of tests. The usual, MRIs, ultrasound, etc. now just started physical therapy...." + (show)
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@dcdusek
Just a lot of tests. The usual, MRIs, ultrasound, etc. now just started physical therapy. See how that goes

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@sapphiregirl
I just started physical therapy too but I’ve had to cancel more appointments than I’ve been due to extreme pain

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sapphiregirl | @sapphiregirl | 3 days ago
In reply to @maka1104 "So many of us out here that are in stunning pain. We have all done ‘all..." + (show)
Profile picture for maka1104 @maka1104

So many of us out here that are in stunning pain. We have all done ‘all the things’. I haven’t seen any success stories. In fact for the most part medicine eludes us. They just don’t care. Manage the best you can, love yourself and let’s never give up hope.

Jump to this post

@maka1104
Pudendal neurolgia is incurable. The doctors don’t know much about it which is insane. All we can do is find any way to deal with the pain. Prayers to all going through this

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