Health Organization for Pudendal Education

I received a 'copied in' letter to my PCT from Dr Greenslade today and I am over the moon.
As many already know I have had the most ridiculous contretemps with almost everybody medical, from my own GP to my county PCT (governing medical body for the NHS)
It has been a fiasco.
However, I may be getting somewhere at last and it will ALL be down to Dr Greenslades input.
In his letter he noted that Bristol have 'problems coping with our surgical load and we are not listing any further patients' for decompression surgery.'The best approach is going to be for her to see Professor Robert in Nantes France'. (under E112 funding) WOW!!
He goes on to say, and I think we will all be able to relate to this. . . . .
'My main concern here,is the fact that Mrs H is getting onto a veritable medical merry-go-round. Unfortunately this is something we see happening a lot and it is a mark of how horrible the pain is and how desperate the patients become in their search for relief from the pain .This feature will not be a surprise to your local pain team, because a lot of our patients get into this kind of pattern. In many cases the pattern of doctor shopping, as it is often termed, saps the patients life as much as the actual pain. For this reason I think it is important that we do everything possible to get her through the diagnostics and treatment options that are available so that she can settle down to reconstructing her life.' DOUBLE WOW!! I keep reading it and shaking my head, as I still can't actually believe it.
I await my PCT's response to this. I should hear next week.
Helen

Finally I'm so happy for you! everything crossed!!!

Helen, that is so good! Lets hope that the PCT come back to you promptly with some positive news, fingers crossed for you.

Helen,
How wonderful for you, I am so glad to hear the good news! I hope they get going as noted in the letter and you are soon in less pain. Thanks for making the plea for the petition. Take Care,
Janet

Oh thank you ladies, you have made my smile even wider
H x

OMG, Helen!!!
I'm so very excited for you!!!! I'm so heartened by Dr. Greenslades letter. Everything he wrote is TRUE - Finally, finally having someone advocate for you. It's about time!
Please let us know how your PCT responds. The suspense is killing me!
Hugs,
Karyn

Me too Karyn
Seems I'm up to 5 pelvic nerves that have been named by doctors now! although I really don't think I have any trouble with the superior gluteal nerve that Dr Filler mentioned (ages ago). That nerve travels up and across (I think) from the piriformis and I have no pain above the muscle at all, so I'm down to 4 (that I think may be involved too, given the areas involved and particular paths of nerve pain)
So when I get my pudendal, sciatic, PFCN and cluneal nerves sorted I'll be fine
I'm still not convinced about the cluneal nerve either actually but I think he has mentioned this because my bum is numb, so that may make it the middle and inferior but not the superior cluneal. Will need to look into that one a bit more to be convinced. Obviously I know a LOT more than he does
No!! The man is now officially my hero.
Dr G did mention that Prof Robert has done decompression surgery on the cluneal nerve too in case anyone has problems with that one.
XOX

helenlegs 11 wrote:Dr G did mention that Prof Robert has done decompression surgery on the cluneal nerve too in case anyone has problems with that one.

Yes - I've heard that as well, Helen. Gosh - sounds like you're a lot like me as far as the "multiple neuropathies" go. Almost makes me wish I could go back to my old way of thinking: Pudendal Neuralgia is the root of all evil .... Come to find out .... it's not! I can't tell you how many doctors I've seen since my bilateral PN decompression and they're all like, "but you just had surgery and you're still in pain. The surgery must have been a failure". I try to explain that my PN SYMPTOMS are much better, some completely resolved, but the PN isn't the only nerve that runs through the pelvis. Then I get "the look", followed by a discussion of nerve cross talk, CNS, blah, blah, blah, followed by orders for yet more labs trying to nail that ever elusive auto-immune disease, inflammatory disorder, rhuematological disease, etc ....
Yes! Dr. Greenslade has most certainly earned that hero status! Add me to the fan club!!!
Hugs,
Karyn

This is great news Helen, to have Dr G recommend you to to Nantes is great fo ryou as you will be with very qualified doctors for diagnosis and treatment.
Yes I know of several patients who have had cluneal decompression with Robert.
The E112 process is not easy to get through but if you persevere with the application hopefully you will be successful.
Ive had 12 so far and am on no 13, if you want any help filling out the forms etc let me know.
Sorry I didnt get a chance to ring you this morning, an unexpected event meant I had to go out.

No problem Amanda, I had an extended family crisis tbh.
Thanks for the offer I have no clue about any of it, didn't even think I would get this far. Well I guess I haven't. . . yet! But I hope that the PCT realise their mistake and really try and help me now. I can't really blame them, it's just because my GP has had such a negative, despondent attitude all the way through that has really caused the set backs.
OOOh! there may be a time when I won't have to whinge on (and on) any more