Health Organization for Pudendal Education

I would like to raise one last point and I hate to bring it up, but a 13.5% success rate is very much in line with well conducted sham surgery studies that have been performed experimentally (sham arthrospcopic knee surgeries). Not better than a placebo.

http://en.wikipedia.org/wiki/Sham_surgery

Hello everyone... I am 11 months post op TG surgery Dr Hibner. I developed PNE 3 years ago after two gynecology surgeries... Anterior and Posterior repair with mesh (very deep incisions). I woke up in horrific pain. I later found a doctor that was "PN" aware and had a positive nerve study, 3 nerve blocks and failed months of physio. Since having decompression surgery I am about 75% better. I say 75% because most days I have 0 pain and few days I have 4/10 pain. Sometimes I sit too much and do too much.... I have 4 kids! See my point? I have my life back..... I am happy I had surgery. I would do it all again. I lived in a 10/10 everyday. I knew I was entrapped. I knew the scar tissue had entrapped my nerve from the 2 Gyne surgeries. I tried everything else. Dr Hibner said the diagnosis is all in the "history".... And my history was right on positive for "PNE". I hope my story may give someone out there some hope that surgery does help those of us that developed PNE this way.

Much love
Blossum

I have to agree with Blossum, my surgery has given me a chance for a better life. I have gone weeks without pudendal nerve pain, unlike before surgery. I do still have the irritation of the PFCN, but it is getting better. When I do too much, I still get flares, but they are not as bad and don't last as long. I am hoping they will get less and less over time.

Like Blossum, my damage was done because of pelvic mesh.......a sure reason for pudendal nerve damage and entrapment. Surgery is a very hard decision and comes with no guarantees. As Violet always says.......do your research! It is a very personal decision. I hope for everyone with this horrible condition, you may be able to find something that gives you some relief.

Barb

Barb and blossum,
My best wishes for a complete recovery. Let me make clear. My set covers PNE surgeries performed between 2003 and 2011. As far as I know nobody in that group I surveyed had pelvic mesh repair.

There is nothing wrong with a placebo response. If you look at the results of sham arthroscopic surgeries, many patients show significant improvements that last indefinitely. Good for them.

I do stand by my numbers (a non-prolapse repair group) and I think patients need to know about the risk and not simply rely on grossly inflated success rates published by surgeons. Placebo response and statistical analysis do matter when you look at any medical intervention. Please do remember that I had 2 PNE surgeries myself and it is not exactly pleasant for me to revisit that period and realize that I was extremely gullible believing those absurd imaging PNE diagnosis claims and ludicrous surgery success rates.

Jo Dispenza in his book talks about sham surgery where just a small incision cut is made and nothing else but the outcome is the same as real surgery - any thoughts Ezer ?

I have now read his book - not sure about it and haven't been able to take to his style on the accompanying CDs for mindfulness.

Rosemary X

Positivepoppy wrote: I am yet to find someone that has had decompression surgery in bristol in the UK and they are now pain free. If you are out there or similar stories regardless of location please post some hope! Thanks

Positive Poppy, I was a patient of Dr Greenslade , he performed a nerve block on me and he also arranged an MRI. I also had one appointment with Dr Wong to discuss surgery. I did not have surgery in Bristol but did have TG surgery with Dr Dellon. My sacrotuberous ligament has been severed on both sides.

I made a full recovery with Restorative Exercise. I think it is perfectly possible to make a full recovery even if you have had failed TG pudendal nerve surgery. Your body is not broken , it can heal.

I have been following about 4 other forums, neurotalk, vulvodynia support, ic network and pelvic pain section at healthunlocked. From all of the things I've been reading, it seems that the number one reason why surgeries DO NOT usually work is due to the fact that chronic pain is complex in nature and once certain changes have taken place in your CNS the pain will simply migrate towards a new area even IF you do decompress said nerves.
This is also what Dr Baranowski in London has told his patients. This would explain such low success rates

Hi Dave m
Thanks for your post and delighted to hear you have recovered really gives me hope. If possible can you explain what you did to recover as I'll try anything . Thanks

Positive Poppy I posted more about my recovery in the success stories section here

http://www.pudendalhope.info/forum/view ... =74&t=6334

I just read it thanks for sharing' are you based in USA if so how did you hear about bristol?