Prudandal nerve pain

[Scfx]

Hi all!

I’ve suffered with prudandal nerve pain for over 2 years now. I’m on gabapentin codeine paracetamol and duloxetine Yet I am still having lots of problems. I’m 28 I feel I have no quality of life. Can anyone recommend anything at all?

[kalecolbe12]

Go on pudentalhope.com also go on facebook pelvic floor dysfunction group...where is your pain and what issues are you still having??

[willemine]

I have it for 5 years now oxycodon helps a bit but the don t hand it out often these days. No tips only try not to sit . I sit on my knees on a yoga bench with a swimmingboard on it with a hole in it .Compassion for your pain.

[anna1234567 in reply to willemine]

I still can’t picture that. Lol

[Pipsysqueak]

Hi do sorry you are suffering like me it will get better but will take time . They put me on pregablin which did help but I wouldn’t recommend it as it’s not a good drug and I’m slowly weaning myself off of it . I waited a year for gynae physio and now it’s cancelled because of the CV19 virus. But another when all lockdown has finished is acupuncture which really helped me . Heat also to sit on was a life saver for me too xx

[Scfx in reply to Pipsysqueak]

Thank you for your reply! Oh I’m sorry you’ve waited for that for so long to have it cancelled! That can’t be great for you! Hot and cold annoy mine even more if anything I’ve had to sit firing pressure to the are for sometimes a few hours and even then that’s lasted the whole of 20 minutes when I’ve stopped. The whole situation is difficult to deal with as I guess it is for everyone suffering. I really wish it would just stop even just for a few months xx

[Rxmom]

after 6 yrs of PN- there's the first part- conservative (injections, nerve blocks to diagnose, meds, Botox, Ganglion impars, plus rule out other conditions like fissures/hemmeroids, PT. endometriosis, pelvic congestion,,, once I tried it all (twice in most cases), i tried hydrodissection injection series with Shrikhande in NYC - unsuccessful. the pelvoc floor specialist reco'd spinal modulation - either dorsal root ganglion (DRG) stim or spinal cord stim (SCS) (you trial for a few days prior to permanent implant) - i did not get relief from the drg trail, but successfully had an SCS trial with reduction of pain(about 60% + ), i had the SCS implanted- it requires post surg trial and error to program with the mfg rep. along with surgeon (in my case, Dr J Rowe in King of Prussia), and recovery is 4-6 wks with restrictions in movement for months as the leads heal in place.

- i still have pain, with the same pattern (low in am, increases late afternoon) but the intensity and average has reduced. I can drive a bit longer, i can eat an entire meal sitting down, and i am not in bed constantly. I still need the meds- but that's next after i optimize program. i need to get reprogrammed to optimize now but the virus has prevented me from in person reprogramming.

- i know there are other options - stem cells, cryo, and decompression surg but I have decided not to pursue these options at the current time, fr a number of reasons.

feel free to Priv message me if you want to talk about this unimaginable condition.

Peace, Anne

[Scfx in reply to Rxmom]

Thank you for your response! I’m lucky enough to work in operating theatres and my general/gynae surgeon has done surgeries and explored the problem internally but he says it’s very rare what I have (as we all have on this group) and there’s nothing more he can actually do. I’ve requested to be referred to the correct specialist but I’ve had no luck finding the right person. I’m from the UK so we’re limited. I’ve also found warm and cold compresses don’t work. I’ve had initial tests done to rule out any STIs and STDs as precaution as most of my problems are in the genitalia area. I even thought I was going crazy and making it up in my head because no one really knew/knows what’s going on. It’s embarrassing. I’m just super fed up.

[Konagirl60 in reply to Scfx]

Have you contacted Dr. Garett Greenslade in Bristol? What about the experts in London?

I had entrapment and only decompression surgery helped. No medication touched the electrocuting burning pain I felt when I sat, lay down, lifted objects, stooped etc.

If I’d had the surgery sooner I would healed far better. No doctor in BC, Canada who I saw would help me. It’s been a long tortuous road but I’m still alive.

[willemine in reply to Rxmom]

I want to congrad you 60 % reduce is mayer i am so happy for you !

[rozamond]

Try ice packs it helps

[willemine in reply to rozamond]

You have to really look out with ice packs i ones freezed my but so much that my perastaltic bowel movement was away for 4 days and had to wear dipairs. So don t cool longer then 30 min

[rozamond in reply to willemine]

Thank you so much for information On ice, I certainly will be more careful

[AdeleS586]

What saved me from Pudendal Neuralgia pain/numbness is going to a skilled pelvic floor physical therapist. I am not on medication, never have been. I also have a sit/stand desk for work, as no amount of PT helps if I spend too much time sitting and putting pressure on the nerves. My main issue is that my pelvic floor muscles are too tight.

[AuntieH in reply to AdeleS586]

Does your pelvic floor specialist think she can make your pelvic floor muscles less tight so you can sit longer?

[AdeleS586]

I have been able to sit in a lecture hall and then class for anywhere from 2 to 3 hours at a time without it bothering me. I stand for probably 7 hours a day when I'm working. My main issue now cuz I still have numbness and the feeling has not completely returned. I'm not back to what was my normal 5 years ago.