HiI am scheduled to have Pulsed Radio Frequency denervation on my Pudendal Nerve in a months time. Really nervous about whether I should get it done as I've not heard much good feedback regarding the results. Anyone out there who's had it? I'm hearing mixed reviews from 2 different neurologists. One thinks I'll permentantly lose all feeling down there and I'm wondering if this will effect my bladder and bowels too and on the other hand I've heard the nerve can grow back and regain sensation.
My situation is that I haven't been able to sit down or drive now for nearly 2 years, walking causes pain and nuerolgist has said this will not go away so the operation/PRF is the only hope for some pain relief.
Any experience of this procedure bad or good would be most appreciated.
I've been holding out hoping the nerve my heal over time!
Jo x x x
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Jobie18
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Hi I haven’t had any experience of this but I just wanted to wish you all the very best. Such a hard decision to make when so much is at stake for you.
HiSorry to bother you but may I ask when you had the PRF did you have permanent loss of sensation in your privates or did the nerve grow back and you regain sensation?
And any effect on your bladder and bowels. I've seen 2 neurologists and I'm hearing different things. Also was the pain relief immediate or did that take a while?
Post PRF very little discomfort done strange sensations for 10 days but they wore off. No numbness after 24hrs and no pain no loss of sensation long term. Your muscles will be tight for a few months post treatment and you should start physio after six weeks or so. It’s not a cure but it did make most of the pain go away. I am glad I had it.
I also couldn't sit or drive for 2 years but found complete relief from long-term pelvic floor rehabilitation (an internal physical therapy which slowly released the spasming muscles). If available, try that first. No side effects. Good luck!
How did they diagnose you? Was it seen on mri? I've just had 3 nerve block injections in my pelvic floor and pubic but its worse which they said could happen. Im in Australia as in the UK there was no-one left to help me as neurologist said it wasn't a nerve problem. If I were you I'd gather more info on that procedure as you've got time. Good luck. Norma
Hi there, I havent heard of this procedure but have just had 3 nerve block injections in my pelvic floor and pubic bone. Still waiting after 3 days to see a result. I have what my son thinks is pudendal neuralgia although back in the UK the neurologist said its not a nerve thing because it stops by the morning but starts up again on waking. I'm see a Reiki master here in Australia and I'm getting huge emotional and trauma release. Will keep in touch with results as they happen. Good luck with your research and I think I'd chance it if it stops this incessant pain. Norma
Sorry to hear your nerve blocks didn't work, it seems to be generally the case with nerve blocks and if they do they don't tend to last long. The procedure I'm having is a combo of a steriod nerve block and Pulsed Radio Frequency at the same time. Where they pass an electric current through the nerve to kill it with the hope that it grows back better, I'm dreading it tbh but I've tried everything else so I guess I have to try it now as I can't manage to do much of anything these days with the pain.
So I don't know if you've heard of the Nantes Criteria for Diagnosing Pudendal Nueralgia but thats worth looking up. I got this about 2 and half years ago and saw 4 or 5 doctors, none of them had a clue what was wrong with me and in the end I printed out a ton of information on Pudendal Nueralgia and took it in to them, I believe it was a paper on the NIH website which listed all the info and the diagnosing criteria and they agreed that's probably what it was. This was then verified by a gynocologist and neurologist. I really had to bother them to get anywhere and it was an appointment with Pain Management team that got me on the list for the Pulsed Radio Frequency Nerve Ablation. If your doctors told you you don't have PN because your pain goes away when sleeping they don't know what they're talking about, this is actually one of the criteria, pain subsides on sleeping and laying down flat but returns in the morning and worsens throughout the day. Shooting pains up the bum and vagina and sometimes abs and public bone are common.
If I was you and you haven't already pushed for a pelvis physical therapist and an app with the pain management team. I hope the therapy really works for you.
Unfortunately I've tried the works but nothing is helping, I also got nerve pain everywhere else (peripheral nerve disease) although the pudendal nerve is 100 times worse, the only thing I've found works for me somewhat is a ketogenic diet and not sitting down at all.
I hope any of that helps, I'm keeping my fingers crossed the procedure helps me as right now I can't drive or sit or even stand for longer that 10mins without serious pain.
Sorry it's such a life changer this condition and I pray you'll recover and feel better soon.
Do you notice that you have anxiety about the future and are emotional. This treatment sounds radical and have they shown evidence that it works? Norma
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