Health Organization for Pudendal Education

I had PN decompression surgery in Sydney 17 months ago and have had only minor improvement. I have been back for a follow up injection and also a PRS (Pulse Radio Frequency) procedure both which did nothing. This is so disappointing. I am now second guessing everything. Was something missed? Should I have another mri? etc.
Is there anyone else in this situation? I don't know whether to keep seeking treatment or give up! Please help if you can...

3 decompression surgeries for me in the past 4 years.I hear you. Somtimes our nerves are too damaged to ever heal. It is coming to terms with this nasty misersble pain the best we can. My pain started 7 yesrs ago I believe from a previous fall on my back. Have been through it all. Waiting patiently for a nuro stim. Will see the Dr.this month again to discuss the pretrial. Must go through their steps I have been told. If that proves to be unsuccessful, will hopfully try the pain pump. One day at a time.

Hi,

This might be a silly question, but I assume you have tried what you can medication wise for pain management?

Not a silly question at all. I am on 3000mg of gabapentin daily. Tylonal ,8 a day. I was on oxycontin for 6 years,had my last the 8th of June this year. If you are on narcotics ,it helps one to cope better. I am not sorry I was on them. I was just getting too dependant,and they were not working well . Not much hits nerve pain. Gapapentin probably helps the most. I really do wish you well. Ellie

Hi there, I feel sorry that you're not doing better after surgery. Could it be the case that you did not have PNE at all and there's some other cause for your pain? What are your symptoms? What was your diagnostic process like?

I am on narcotics myself. My pain is mostly rectal. Much like an anal fissure actually except I don't actually have an anal fissure ruled out after multiple scopes from colorectal surgeons. It is a constant burning rectal pain.

I take targin and 25mg of endep at night. I also have endone for breakthrough pain when I have those severe flare ups. My pain specialist is the one recommended for QLD by Thierry vancallie.

So far I have tried pudendal nerve block, 2x caudal epidural, a peripheral nerve stimulator trial and pelvic floor physiotherapy.

I have seen 4x colorectal surgeons, orthopedic specialist to rule out hip Labral tears, 3 x urologists including urodynamic studies. At least half a dozen MRIs of my spine, sacrum, pelvis etc.

Physiotherapist has said I have a severely spasmed pelvic floor. Tried physical therapy but the relief only seemed to last a few days and my pelvic floor went back into spasm.

Treated for chronic prostatitis with antibiotics and flomax. Of course that failed to fix my chronic pain as well.

Next step my pain specialist wants to try is a tibial nerve stimulator placed in my heal.

Up until I developed my chronic pain in 2012 I was an extremely fit and healthy male. I could run 5kms, ride a bike regularly. I used to do triathlon style training. I have had this condition since my early 30s and very frustrating to be held down by it while still relatively young.

Hi G Walker. It was 3 years following PNE surgery before I began to recover. I know how disappointing it is to get to 17 months and have no change. Nerve pain can take years to recover. Don't give up hope that things will change in the future. Try and manage the pain as best you can. It's easier said than done but I've been in your shoes. 10 years now since I had PNE surgery and I've recovered extremely well. Never quite 100% but pain is never an issue any more. It's mild and always the last thing on my mind. I began to notice significant recovery after the 3 year mark but recovered a little bit more each year. I gauged my recovery on an annual basis after a while.

Most members on here will have followed my PNE journey through these forums. I like many others was one of the most severe cases of entrapment possible. Take life slowly and calmly. Don't rush into a second surgery too soon. Give yourself more time to heal. Everyone's different. I thought I'd never see light at the end of the tunnel but I did and I've been doing really well now for the past 3 years. Travel, work, socialize etc. Nothing stops me now from living a life I thought I'd never see again.

Catherine

I am still waiting. LOL

Ray,

Have you tried some botox injections into the pelvic floor? You are based in Australia?

Pafen wrote:Ray,

Have you tried some botox injections into the pelvic floor? You are based in Australia?

I have had botox twice and it has done nothing I wonder if it was placed in the correct area .Mine was puborectalis muscle.My physio says it seems to be very relaxed but it has not been the answer