Health Organization for Pudendal Education

Thank you for your post. We are trusting for our healing for my little girl. So glad you were lead back here to share HOPE!!!!
MOM

Thanks, Larry for telling your inspiring story. I am one year postop and reading this has made my otherwise painful day more bearable. Is Dr Bishop the person who is now in charge of the pain clinic in Nantes? Did he take over after the death of Dr Bensignor?

Best Wishes,
Jeanie

Hello Jeanie: Regarding Dr. Bensignor's pain clinic the last I heard & this goes back a number of years they were building a new clinic just outside of Nantes -- the clinic that Dr. Bishop is connected to was not related to my prior experience at the clinic in Nantes. Dr. Bishop's clinic is near where he practiced. What I really liked about the French pain clinic system is that they take you in for a period of days and you have care 24/7. At the time I couldn't find this type of care in the U.S. I lived for these weeks in France, as through Ketamine the French doctors were able to bring my pain level down to almost zero while under the influence. I'm not at all claiming that once they took the IV out the pain didn't return because it did. But I do wonder (emphasis on wonder) if it wasn't the cumulative affects of the Ketamine treatment that finally made the difference? Or was it just time? I have no proof other then how I feel. But, maybe someone can benefit from the journey I took...Larry

Hello Shawn: Sorry that I wasn't a bit clearer in my writing. I had the one surgery with Pr. Robert. I went to see Dr. Bishop purely out of desperation. All he could do is tell me there was nothing more that could be done for me & that I just had to wait it out.

Thanks, Larry, for answering my question re for how long post-op you were in significant pain. It was interesting that you were told improvement could take as long as 3-5 years. Perhaps the time-line for recovery is longer than was originally thought.

larry91555 wrote: Hope -- just never gave up hope. I believe hope is just about everything.

Larry, your story is making me cry -- I am just so happy for you. I was wondering if we could use your words as a quote on our home page. Right now we have a quote from Christopher Reeves but a quote from a "former" PNE patient would be so inspiring, don't you think?

Hi Violet: Yes, I do agree. I would be pleased if you would use the quote on the home page. As I look back I often wish that somehow there is a way to put in words the true meaning of what people go though who have PNE pain; how can you explain that you can't sit or if you dare try to sit the pain - the burning pain increases that much more. How can you express pain that is 24/7 never, ever easing up no matter what the time of day? When you are in suicidal pain and are literally fighting to survive what is the only thing that can get you through that particular day only to have to face it all over again tomorrow - the answer truly is Hope. The word Hope itself can seem so simplistic depending on the context. But, as Hope relates to PNE it goes beyond a higher power - goes beyond a belief in God. However one would attempt to define that level is what Hope meant to me.

Very well said, Larry. I vote to include the whole of your last post on our Home page!

Thanks once again for thinking about us. It is very much appreciated.

I second that, Lernica!

Hello all
I wish I could say all was well but instead ,despite research research and research ...heeding and taking advice, changing and increasing medication, I seemingly do not respond to anything that might give me even an hour pain free...I have manageble pain at times (not enough times though) and then go like a white tornado with household tasks and such and oh boy what a happy bunny I am then, but youve guessed ...the day after is pay for it day...
Actually this wasn't what I wrote in for but whilst I'm here...I have new symptoms appear ..dead hands or rather pins and needles, for the first few hours every morning I am totally not workable....I think I may have caused more nerve damage (as if I needed more!) by the many times I fell as a result of falling asleep standing up in the early hours of the morning, every morning for nearly two weeks....I am truly surprised I haven't broken every bone that could break although on different occasions I totalled four finger breaks,that got me out of the washing up!! no seriously it was a real scary time for me and my partner...I could not convince my gp it was the combo of medication so I meddled around myself for a further two weeks and found I was right..taking amytriptline with Lyrica at the same time in the evening caused the "sleepwalking" nightmares for me.I now keep them hours apart but as I said I think the damage has already been caused...the situation for me at the moment is grim, I have a new pain consultant(when the appointment comes) and have been on an NHS list to see Dr. Andrew Barawanski, hoefully before I recieve the telegram from the Queen! ( does that still happen for 100th birthday) well that's cool here I am in UK asking you guys in the states..whatever next!! so, what I really felt the need to say was.. or rather my input on quotes....Yep a great idea to use Larry91555's quote but might I suggest that instead or replacing one for another but to add, and whenever a personalised quote appears and we all think it has some everlasting meaning that could be added also ...we would eventually end up with perhaps one whole 2nd home page of meaningful quotes, could start a quote war with the chinesse! (that was said in the nicest possible way ..after all where would we be without every cloud has a silver lining? just a thought.
love from little moxx