Decompression surgery

[jomoney]

Hi, I'm a Pne sufferer I'm just wondering if you ladies who have had decompression surgery in Bristol/france , are you pleased you have gone through with it? I'm considering having it done I flared for around 6 weeks or so recently aftera ultraultrasound guided nerve block and I'm ok now as long as I don't sit or do much , just considering if its worth it after reading posts on here

[Poppy26]

If more conservative routes work then go for it, surgery should really be your last option. I had surgery in Bristol 5 months ago and still in chronic pain. Do all your research there is a helpful forum pudendal hope that just deals with PNE suffers so read their posts.. it has to be the right decision made for you. Good luck I really appreciate how frightening it can be

[FKSW]

Hi jo - I am glad I went for surgery. I can sit and do a lot almost two years post surgery, my quality of life is almost that of a healthy person. I am still taking medication, but hope to come off it eventually. The surgery isn't a quick fix, I only began to feel any improvement six months post op, and the real improvements were 9-12 months later. Still improving all the time.

[Argonne in reply to FKSW]

Hi there. Can you tell me what meds you are on now that you are 12 months post op

[sweetpea02]

Hi Jo!

Well as you know I had the op in January and was in the dilemma that you're facing so again I can only speak for myself but I have no regrets at all. I had hydrotherapy on Thursday last week and felt better after just one session so am hoping that the next lot ( five more) will help even more. The hardest part is deciding what to do honey. Big hugs Jo, xxxx

[Edenborough]

Hi, I had bilateral decompression surgery in Nantes in 2012. The cost was about 6,00 euro and yes they did speak English but I would suggest that you word your questions in a simple manner as they do not understand everything. They were very helpful once you got past his secretary who in our opinion is anti Brits. I wrote a letter in English then waited several weeks for a reply which never came and Prof Robert said he had no knowledge of it.

I expected to go to France for tests and Steroid injections first but they do not use the steroid treatment any more and go straight to surgery so 1 week after we arrived I was in theatre and it all came a bit too fast for me. The success rate was explained as lower than I had first been told. I was not one of the lucky ones but I have a complex problem which involves the cluneal nerves as well which means walking also brings on my pains.

Gather all the information you can before making a decision about surgery. It appears that there are doctors and physios in UK who do understand our problems, I was not aware of this when I went to France.

[Edenborough]

Sorry missed the last bit, hope you find the right treatment but take it slowly there is no quick fix I'm afraid.

Good luck, Marion

[catfish]

Hi , I had decompression surgery 2 years ago this June. Thanks to Fiona & Judy who helped me with questions & contacts for France , I got a quick reply from prof Roberts but would recommend to use Google translate & change any correspondence to French for his secretary . Prof Roberts can read English well . I have no regrets about the surgery but it took at least 12 to 18 months before any significant improvement . I am now 80% better and off all medication. I cannot believe it ! I did try every possible avenue prior to surgery but realised nothing was working . The worst thing about this condition is that you are perceived as a neurotic . Nobody can understand how uncomfortable this condition is unless you severe with it . good luck & please don't b afraid of going to France as they understand this condition well . Regards Caty

[Barbara9 in reply to catfish]

Hi,wondering which symptoms you had that improved?ive been told 50% improvement (if its entrapped I assume).i had gynae surgery,have tried so much,just lyrica helps with vaginal pain,nothing else.

[jomoney]

Thanks for all your info girls I really appreciate your experiences , Ive had it a year now and i have improved dramatically due to time/not sitting/Physio , but need to go one step further and get my life back sure I'll go backwards for a while but its thanks to your experiences that I will expect this so should make it easier , thank u and lv to u all we all know how hard it is xxxxx