Health Organization for Pudendal Education

Hello .... it's been at least 15-16 years since i sought post-surgery help in France .... goes back to when Dr. Bensignor was alive .... it's extremely unfortunate that i still have friends who years later post surgery are still suffering .... am looking for more recent post surgery experiences with the doctors in France or elsewhere for that matter ... treatments ... protocols etc .... when i talk about my own experiences am unsure if things have changed or stayed the same .... for me it was a week at a time of slow drip ketamine combined with targeted injections (multiple visits and week long stays in pain clinics) .... saved my life .... just want to be sure i'm not giving out outdated information .... appreciate the help very much .... Larry

Hi Larry, I think we posted your story on the website didn't we? Is this your story? http://www.pudendalhope.info/node/87

I also loved one of the things you posted and we got permission from you to put it on the picture on the homepage at the top. http://www.pudendalhope.info/node/2

How are things going for you these days?

Violet

Sometimes it's hard to believe that it was the summer of 1999 when i was struck down by pne and my life was changed forever. Although recovered about 13 years ago from pne surgery thanx to the doctors and pain clinics in France (specifically Nantes) - the damage incurred on my body, by procedures i alone agreed to, in dealing with U.S. doctors are taking their toll on my body as i continue to get older. It was mostly the worst decision i made during that time period - agreeing to have a pain pump put in - and the resulting problems that came from terrible side effects - that i am mostly paying for today. Nothing, ever will compare with the pain of pne .... but still I made decisions along the way that i wish i could take back ... but, such is life .... there are no 'do-overs' ... All in in all i find it amazing that i survived the pne journey but there was damage done along the way that i am paying for as the years go by ... grateful to be here .... but, i won't say that life is all roses .... life can be really tough day to day....

Hi Larry,

I'm sorry to hear things aren't all roses for you and that you are suffering from the consequences of some medical procedures. I don't regret any of the PNE treatments I had but there are other medical treatments/ procedures related to other health concerns that I do regret, so I can relate to what you are saying. The unfortunate thing with PNE is you just don't know if a particular treatment is going to help until you try it and when you are in such desperate pain you become willing to try just about anything.

Violet

Violet --- you are absolutely correct in that pain at the pne level drives desperate moves ... desperate decisions ... perhaps from the experience of having gone thru this ordeal others can learn and maybe not repeat the same mistakes. If i had to go thru this all again I would of made the decision to stay in France long-term post surgery under the care of the Nantes doctors. I realize to some this may sound fairly radical but at the time if i could of stepped back enough to realize and appreciate that Nantes was where the best after-care was - combined with a desire to somehow beat this thing - then it would of only made sense to stay under the care the best doctors. Of course, it's easy now to look back and I'm only commenting on how it was back in 2001 ... it's very difficult to think logically when you're in suicidal-pain ... but, given the same circumstances i would have made no plans to return to the U.S. post-surgery ....

That would be a pretty radical decision to stay in France. What's unfortunate is even after this many years there aren't that many docs in the US who treat this -- especially men.

Violet