treatment in nantes france



after 4 years of trying to get a correct dianosis and treatment in the uk, i have seen numerous doctors and been to various hospitals but no one has been able to help, i have had pudendal decompression surgery, trials of scs and sns, nerve blocks and am also on various pain medications, all have not reduced my pelvic pain to managable levels, i have now decided that i want to try to see professor robert and the team in france, how do i go about contacting them

thanks to anyone that can help


33 Replies

  • Hi Andrea,

    Contact Judy ,one of the administrators on the network and/or use the search box and type in "Nantes"; this will come up with a lot of information on having surgery done in All the best! Have you been to see a specialist PT?

  • thanks for replying quickly, how do i contact judy as i have been told she can liase with france on my behalf to help get an appointment

  • You can contact her at You are right that she can help to liaise.

  • There's a dr Aszmann in Vienna, please check him out

  • I can send you Prof Roberts email and phone number, I would suggest you try and speak to him directly. His English is very good. I have heard from Judy that he rarely does a re-op, but as he did not do First one maybe he would consider. Surgery is risky, my left side came out better , my right side came out worse, a year later and I am still having problems with right side. I did go back after 5 months, but was told " it is just pain, sometimes we see patients present with these symptoms and we do not know why" I think my muscles go into spasm now at lots of triggers, these nerves have a motor component as well as sensory. Can you pm me and I will send you details.

  • Hi Andrea

    So sorry to hear about your continuing pain, it must be so debilitating. I can't help you in regard to the Nantes treatment but I can understand your desperation to go to any lengths to get relief from this life limiting condition.

    I wonder if you wouldn't mind telling me about the outcome you had for the pudendal nerve decompression operation. I know this is not why you went onto this website but it would help me if you can give me some idea of how it went and why you think it failed.

    I have already had a rectopexy for an internal bowel prolapse and a pudendal nerve block and am now considering decompression surgery in Bristol with Mr Dixon who has been recommended to me. I am having to go privately but my insurers will only pay for my initial consultation and tests and not the procedure as I believe they are wrongly suggesting this op is experimental.

    If you would just be able to let me know how your decompression surgery went that would be a great help to me.

    I know that others have been to Nantes so I am sure you will get lots of info from those who have been there, loads of luck. I too will consider this as well if it becomes necessary. Unless you have experienced pelvic pain you just don't know how awful it is.

    Have you found a pelvic physio? I have a very nice woman who I go to every couple of weeks and this does give some temporary relief. This could help while you make investigations into Nantes.

    Kind regards


  • hi sue

    my story is very similar to yours, i had a prolapse rectopexy done by mr dixon, he also did my pudendal decompression surgery, but my insurance company paid for all of it, as first there was a problem with the insurance to cover the surgery part, but mr dixon sent a letter to them explaining it wasnt experimental and also the surgery in detail and they paid for it, to be honest the surgery was a breeze, nowhere near the pain scale of the rectopexy or the hysterectomy i had many years before, and the recovery for me was very quick, initiallly for the first couple of weeks i had a pain flare, but after that it went back down to the pre op levels, unfortunately, it didnt go down anymore and no extra relief 3 years later, but maybe you will be lucky


  • Thanks Andrea, sorry to hear it has made no difference. If I decide to go ahead with it I will get him to write to my insurers as well. Good luck with Nantes if you decide to try that. Keep me in the loop.


  • i really dont have any other options left, i have tried everything available to me under the nhs, and i am still looking for the same answer, is it the pudendal nerve or not, there is still a nagging doubt whether it is

  • You and me both - I am determined to have every test imaginable before I submit myself to another big op.

    It is hard to know who to go to or what to believe isn't it? Whilst Mr Lindsey in Oxford believes it is the Pudendal nerve I still can't help thinking it could be the recto proxy which has come adrift and causing the pain. That may well need revising so I will have that looked at again before the pudendal nerve decompression if necessary - goodness this is not easy is it? Goodness knows how folk who are not savvy manage the system!


  • no its not, the only time i have ever been examined in the 4 years i have had this problem was dr greenslade at the very beginning, he made the diagnoses, i have seen many other drs since then all over the country, and they have all taken the first dianoses as correct and non of then have ever examined me, they all say there is nothing that can be done for me except pain management and that i should stop searching for other things to cure me and accept the decision, but how can i do that when i am not 100% sure the diagnoses is correct, would they give up? i have not been able to sit down or bend from the waist without have burning pain made worse by doing this

  • I will make sure I am examined inside and out before I go ahead with anything! I have to admit the last couple of times I have been to Oxford they have not examined me which I think is very odd. I don't enjoy having all the embarrassment of rectal exams but I do think they should be carried out with other tests every time in case things have changed since the original diagnosis. As we all know doctors can be wrong .....


  • yes thats exactly what i think as well, i need to know 100% that the diagnoses are correct

  • I will question everything from now on until I am completely satisfied they have looked into all possible causes for the pain. I will ask about implants which block the nerves as well as these seem to have good results in some cases. My appointment is next Thursday at the Spire so I will let you know how it goes.


  • yes please do, have you met mr dixon yet?

  • No, I gave not met him yet, how did you get on with him?


  • he is very different, with a very dry sense of humour and very, very blunt, he comes from cumbria and to be honest, sounds rather like a country bumpkin, no offence intended, but i liked him, what you see is what you get, no rose coloured glasses here!

  • Hi, Suzy, be careful with Mr. Dixon, he does three surgeries - mesh rectopexy, STARR and pudendal release; I don't know about the last one but I was unfortunate to agree to the first two; mesh rectopexy causes scarring and twisting of the rectum and other pelvic organs and excrutiating pain, Dixon usually does STARR after this which is simply excision of your healthy normal rectum that carries no purpose and intuitivly makes the pain from the mesh rectopexy unbearable; it is unclear if he is in denial about all the consequences of what he does

  • "Goodness knows how folk who are not savvy manage the system!"

    They don't manage it. There is no system in place for people who aren't "savvy". There's barely a system in place for those who are. If someone was very mental ill, had learning difficulties, no access to the internet, dementia etc. and couldn't do their own research or explain their problem well enough to someone who could research on their behalf, they're stuck. And that's just in the "developed", world where medical treatment is more accessible. If you're in most of the developing world I would imagine there's very little chance of ever getting diagnosis or treatment for this kind of problem.

  • Hi, what caused your pain? Mine was caused by Mr Dixon, who did various surgeries on me, I almost died from his surgeries, but then another surgeon simply undid his mesh rectopexy and I am pain free.

  • Hi

    This so shocking and so sorry to hear of your dreadful experiences. I originally had the rectopexy for rectal prolapse and rectocele. This was carried out by Mr Cunningham in Oxford and did help the pain but I was not pain free entirely. I was recommended by another Oxford surgeon to see Mr Dixon as a diagnosis was made of pudendal nerve compression and he is one of the few surgeons who carry out this procedure in the UK.

    Having read about your experiences I am now thinking I may go to this appointment and take this opportunity to have further tests to confirm the diagnosis and then make a decision as to where I go after this. My insurers will pay for the consultation and tests so I will get as many diagnostic tests done as possible and then once I have all the information I will make a decision. I actually think I need a mesh repair or removal but my Oxford surgeon feels I should have the nerve done before which I don't entirely agree with. There is a peripheral nerve specialist who works in Stanmore who works under the NHS so I may leave this to him carry out the decompression if it is necessary.

    Are you completely pain free at the moment or do you have residual pain from anything Mr Dixon has done?


  • no, mr dixon did all of my surgery including rectopexy, initially had a pain flare after the decompression surgery, but this subsided after aprox 2 months, and now it is no worse than before the surgery, but no better.

    i have contacted judy and i am going to go to france to at least see if the original diagnosis is correct, if nothing more, i cant live with the "what if" thing and doubt, i need to know, i am sure i can settle down if i know this, its the not knowing


  • the most horrible unbearable pelvic/rectal/vaginal pain that was going down my legs and was incompatible with life is gone; I still have rectal pain with BM and even gas from the STARR - 2 years after Dixon did it, but this is different - just from the scars and staples in the rectum and shortening and mutilating it, most horrible is fecal and gas incontinence since I don't have enough rectum to hold it; obviously nothing could be done about it unless some sort of rectal transplant (?); this is important for you to know since Dixon will tell you that wrong people are doing those surgeries and that's why the patients have side effects and in his hands those surgeries don't have side effects

  • the answer to this is nobody knows , it could have been a hysterectomy i had many years ago

  • I read most people with pelvic pain and levator muscle spasm had surgery in the past

  • hi everyone,i have just read down this whole back and forth and I am crying,not just because of my pain but for each and every one of you,it is dreadful unrelenting pain isn't it, like a lot of you on here I have been back and forth for 5.5 years trying to get relief, I also have fibromyalgia & widespread myo-fascial pain and I am expected to cope with all this pain with NO PAIN RELIEF!!!

    I do have overactive sensitivities to a whole host of meds ,and the ones I have tried ,strong ones do not help any of my pain

    I have suspected right side pudendal nerve pain /entrapment

    I have seen a whole host of "specialists" ,one said "it is not pudendal nerve entrapment as it cannot possibly be on one side ,it has to be unilateral!!!!

    he obviously doesn't have google!!

    I did see dr greenslade in Bristol three years back,he examined me ( I had to be pulled off the ceiling it hurt so much!)

    he said he thought I had a rectal intersuseption up inside the bowel ,I asked him if I had right sided pudendal nerve entrapment and at that time he said he wouldn't definitely rule it out but I needed to have the intersusseption sorted out

    I found a dr david Jayne in leeds and I paid for a initial consultation , and I had to go for a proctogram and wait forever for the op on the nhs

    had the op for the intersusseption dec 2015 (it is called the STARR PROCEDURE)

    in a lot of pain after ( probably be better & less painful for someone who isn't as limited as myself for pain meds)

    was in hospital 3 days (came home as the hospital was a nightmare!) after that I couldn't hold my bowels for quite some time ,it is only since april this year things have settled more

    If you have the starr op you can never really "hold "yourself and when you need a number two go straight away don't delay! "reason for this is they take a bit of your bowel away ,so there is nowhere to "hold" your poop

    so I have had that done ,but still have this incredible right sided nerve pain and don't know how the hell to get relief from it

    I am in pain with it 24-7 ,whether I am stood,laid etc

    I am waiting for some mri results of my low back and sacrum ( should have had results by now as the scan was 22nd april! rang up about them and they have only sent my results to a g.p practice in Cumbria!!!)

    I live in York!!

    so desperately searching for somebody in the u.k who can perform a c.t guided injection and say yes it is pne or no it is not pne

    so feel free to drop me anymore dr's names that can perform one of these, I will be extremely grateful

    or any pain meds! I can't have anything opiod based

    I am thinking of trying something as someone told me that arnica Montana 200C 3-5 daily help them

    someone on a different pne site ,suggested medicinal marijuana ,which seemed a good idea til I realised she was in the USA and I was in U.K ! I don't think it would clear customs to send me some!!

  • it is really strange isnt it, that most peoples stories are very similar, i to am very sensitive to pains meds, i have over the years , little by little to take amitryptaline, when i tried it years ago it gave me very severe side effects, so i didnt take it anymore, however this past year , desparate for a little relief from the widespread pain, i tried again, this time, 1 started with a 1/4 of a tablet at night, it means cutting up the tablets, but it worked, i am now up to 40mg at night , which gives me a little relief from the fibromyalgia and tmd, but i cant take any more as it gives me hallucinations, maybe you could try this


  • I am wondering - why don't you complain about Mr Jayne and Greenslade? I see this story all over the posts - Greenslade diagnoses "intususception" and sends to the surgeons (usually Dixon, but you got a different one), the surgeons make money on the patient doing STARR and mesh rectopexy, cause fecal incontinence and more pain and still nobody complains? If you don't complains they will be mutilitaing more women

  • in my case Dr Greenslade wrote to my g.p saying he felt I had a intersusseption ( and because of that wasn't sure if I had pne on the right side)

    I went to my g.p and Dr Greenslade recommended a mr mercer for surgery , when my g.p contacted mr mercer at my request , ( can't remember without reading paperwork where!) my g.p rang me to tell me mr mercer had had a car accident the day the g.p rang!!and would not be available for a long time!!!

    That was the end of that and you won't believe this but I had to find another bowel surgeon who did this kind of stuff!!! I had to take the info I gleaned from the Internet about this prof Jayne, then my g.p wrote to him, and because the wait was so ridiculously long , I had to pay £180.00 for my first private consult , I tell you if I could write a book about the lack of proper NHS care since I move to York , it would be a best seller!! Don't get me started on the botched surgery I also had to go through etc...

    I mean this in all honesty , you would get better healthcare if you were in a mud hut in the tropical rain forest!!!!

  • You HAVE to complain to GMC, there is a website of General Medical Council, all you have to do is to submit the details of what happened to you online and they will investigate for free; these surgeons publish faulse data that those surgeries help and if you don't alert GMC the next could be your sister or your daughter

  • just to keep you all informed where i am going from, here, my local pain dr, is now going to try a caudal epidural, to see if that can help, never had one of these before, but i am willing try anything that i am offered, also judy has been very helpful to me and is arranging for me to go to nantes, france, so that i can maybe get my diagnosis confirmed, i know i would cope better if i knew as i am always unsure if the original diagnosis was correct, peace of mind is what i need to get closure and carry on with my life, if that makes sense


  • Hello. I am late in replying to your post. I have had, like several other people on this site, Decompression surgery performed by Professor Robert in Nantes (my operation was 14 months ago) I am still in recovery. Only very recently have I started to be able to sit for longer without taking pain killers. I continue to take my original medication which I have been on for 11 years now. I am due to have a year and 1/2 year appointment (check up) with Professor Robert and his Pain specialist Dr. Riant at the end of September. Everyone seems to take their own time in healing and some it seems, do not heal quickly or at all. There seems to be few total cures from any form of surgery, but a lot of people have been helped enormously by surgery in Nantes.

    I have never heard of 'redoing' Decompression surgery!! I asumed it could only be done once. I certainly would not want to have it done again.. that would only be confirmed by speaking to him. He does speak good English. He is very straight forward and has done the operation thousands of times.

    I have all his details if you wish to contact him.

    I continue to hope that his operation will have helped. I certainly do not take so many paracetamol tablets as I used to!! :-)

    There is also a girl on this site who was operated on after me but she had double Pudendal Nerve Decompression surgery (both sides) and told me she had other surgery done at the same time operated on by Pr. Robert. She wanted to pm me rather than discuss her operation on this forum. She has stopped her emails and therefore I presume she is much better ( I hope).

    I wish you all the best,

    Take care.


  • After a biological mesh rectopexy,collapse I have symptoms of PNE and am deciding the way forward.can anyone tell me if they have had the mesh removed and symptoms improved?Also I have options of piriformis Botox injection or ganglion impar block.have either of these improved the pain for anyone?

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