Anyone out there diagnosed with Pudendal Neuralgia?

Posted by LeighO57 @leigho55, Jun 5, 2018

I have not been on connect for quite a while since I have only recently received a diagnosis (one of many probably to come) I am looking for someone/anyone who has the pain from a surgical injury of sorts to this nerve to talk to. Is there anyone out there with Pudendal Neuralgia on connect? Thank you!

Interested in more discussions like this? Go to the Chronic Pain Support Group.

I was diagnosed with left pudendal nerve entrapment via an EMG or similar test. There has been no treatment except opioids and those cause so many problems I can’t take them. However, I just had a spinal cord stimulator implanted. I am still in the phase where they work with different settings to find the best location and intensity for pain relief. I will update if I get any relief in this painful area.

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In reply to @nickyfriskel "Dr Michael Hibner" + (show)
@nickyfriskel

Dr Michael Hibner

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I am not sure if you are still on this site but if so I would love to know how things went for you with Dr. Michael Hibner. They don't take insurance and require $875.00 for first visit and botox/nerve block would cost $8,500 out of pocket. Was this your experience. I am desperate.
Ross

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@nickyfriskel

I can relate.. I’m on anti depressants too... I am so lucky to be in AZ.... I'm seeing one of the top 10 doctors/surgeons who deal with this on Wednesday and I'm hopeful he can help. Thank you for responding to my post... It's hard to stay positive but I try.... I hope you find some relief.

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Who is the doctor?

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Has anyone had the pudendal nerve burned to help the pain? I am scheduled to have this done, just wondered has anyone out there had this procedure for the pudendal nerve? (ablation of the pudendal nerve).

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Has anyone had an ablation of the pudendal nerve? And if do what were the results?

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@bunnybear

I was diagnosed with left pudendal nerve entrapment via an EMG or similar test. There has been no treatment except opioids and those cause so many problems I can’t take them. However, I just had a spinal cord stimulator implanted. I am still in the phase where they work with different settings to find the best location and intensity for pain relief. I will update if I get any relief in this painful area.

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Yes to the pudendal nerve question: The spinal cord stimulator is working and is very effective in removing pudendal and other pain! The only warning I have is that people must know that they must be patient in trying locations and stimulation levels. And it does NOT remove every trace of pain, it simply makes a huge difference. However, if you really overdo it will continue working but does not remove all your muscle pain in addition to your nerve pain. For example, one day I sat 3 hours on a hard chair, no pillow, playing games and the next day walked all around the our downtown area for several hours with guests. The next day, I was bedridden and nothing helped. But now I’m back to normal and getting so much relief from the stimulator. Also, reducing pain increases my energy and makes me hopeful again.

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@bloom3309

Jenna Miller has no need to talk so fast. She should slow down by at least 2 words per second to be understood on screen.

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I used the Closed Caption

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@bunnybear

Yes to the pudendal nerve question: The spinal cord stimulator is working and is very effective in removing pudendal and other pain! The only warning I have is that people must know that they must be patient in trying locations and stimulation levels. And it does NOT remove every trace of pain, it simply makes a huge difference. However, if you really overdo it will continue working but does not remove all your muscle pain in addition to your nerve pain. For example, one day I sat 3 hours on a hard chair, no pillow, playing games and the next day walked all around the our downtown area for several hours with guests. The next day, I was bedridden and nothing helped. But now I’m back to normal and getting so much relief from the stimulator. Also, reducing pain increases my energy and makes me hopeful again.

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I had this monster for 14-1/2 years. Anti -seizure medicine was the only thing that helped me in the end.

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I probably have pudendal neuralgia and/or cluneal neuralgia for 5 months now and it's ruining my life , feels like it's getting worse too .

I am doing pelvic floor therapy at the moment but this gives minimal relief and sometimes even seems to make it worse, what did help was dry needling of the piriformis muscle .

Doctor Renaud Bollens in Belgium performs laparoscip (minimally invasive) surgery for pudendal nerve entrapment and has great results, 80 to 85% succes rates but it's important that it's done sooner rather than later , if the nerve is truly entrapped and not just irritated . He says to try Pt first and if that does not help surgery, pain clinics only treat symptoms and according to Dr. Bollens this is a bad long term strategy .

He has a podcast on youtube that is very informative. Please check it out. I can not seem to be able to place a direct link here but search copy and paste this in youtube : Lap approach of pudendal pathology: a new understanding of functional pelviperineal syndromes .

It's highly recommended and informative.

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I have a pudendal nerve block scheduled in a few weeks. I’ve read that most are done guided by CT. However, my Pain Doc uses X-ray guidance instead. I’m wondering if anyone has had this type of block and how successful was it?

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