Please can anyone let me know if they have been operated by Prof. Roger Robert /and or his team to release the Pudendal Nerve ? I would like to know how people have reacted to the Op; how long it is taking to recouperate, if it has helped for the better etc...; any advice would be so helpful as i am seriously thinking about having the Op after nearly 10 years of having suffered from the pudendal nerve pain/s
look forward to hearing from you. 
Several people in the Uk have had the surgery and retained their jobs. Some are on this message board. I see you are in France. There are many more patients in your country who have had this surgery. Have you made contact with them ?
Are you male or female ?
Hello PPSN Judy. I am female and just 50 yrs old. I cannot find a French site like this with Pudendal patients blogs!! I will have to keep searching.
Thank you for your response - if you and your team know of a French site then that would be wonderful.
don't do this stupid surgery..pudendalhope forum is filled with people who've had the surgery and barely got 2-30% improvement after ages and ages ....oh, and by the way, this surgery can make you worse and add incontinence to the pain
and be weary of people who say this surgery worked for them ....how exactly does it work when improvement is 20%...you can achieve that through other ways
go and read a blog called madpeach: her doctor recommended aquatherapy
and you need a PAIN LOTION ! it works better than anything else, there is a lady on the interstitial cystits forums who had PN and her pain doctor made a pain lotion for her, with bupivacaine and other things...
I am pain free using medication: elavil and lyrica
I also take magnesium, it seems to be the only supplement that calms down the nerves
Hello there, well all i can tell you is my experience . I had decompession surgery in 2012. i had horrific pudendal nerve pain. i however had only suffered with it for 9 months. i got a diagnosis quite quickly & opted for surgery (gut instinct) .im now 90% better. no bad days. work full time but take care not to push my body with extreme exercise which caused it in the first place. Prof Roberts understands this condition & will be very honest with you about the potential recovery percentage. just my experience.
good luck, caty
Hi, could you please tell me where you had your surgery done and how to contact the team. I am really suffering now. Thank you.
Hi sally , I’m so sorry to hear you are suffering . I had my surgery done in Nantes . I unfortunately don’t have to new contact details but they will be on pudendal hope . It’s not a perfect surgery & I had a set back 18 months ago . Luckily things are settling. I would 100% see a pelvic physio regularly before having any surgery & get the book headache in the pelvis . There is no quick fix but physio / yoga / relaxation helps immensely. Good luck
Thanks for the reply and advice. I had an anorectal surgery 2 years ago left me with burning sensation in the rectum and gradually getting worse and causing a lot of pain. I am going for a nerve block in 2 weeks time. Hopeful it will give me some relief.
Maryjane, thank you for your imput. I shall look into the 'hope' site and see exactly which surgery these people have had. Naturally I am very confused at this point in time. Will look into the situation more thoroughly. bye for now.
MaryJane, I suspect that most of those you refer to are patients in the United States who have been operated on by various surgeons mainly gynaecologists. This is certainly not our experience of patients from the UK who have had surgery by a neurosurgeon in Nantes. I know many of these patients personally and can tell you the difference it has made to their lives. It is very specialized surgery which needs considerable training and experience. It is easy to frighten people but please look at the published evidence and try to be objective.
getting more good feedback about Nantes. I have met Prof Robert. It is jst up to me to calm down and let him know when I am ready. Thanks JudyB.
Hi, I also had surgery in 2012 which helped a lot with my pain levels, but then I a year ago I started with a new pain in the labia/vulva area. I told myself it could have nothing to do with pudendal nerves. However gynae have ruled out any problems by MRI scan as it was too painful to even touch the area and an internal examination was not possible. and after a lot more reading it seems it most probable is pudendal. This is also the opinion of my Mactimoney chiropractor who is doing low level laser treatment simply to help with the pain.
If you have PNE type symptoms in this area please reply and tell me of your pathway through the maze of doctors who say "I cannot help you except to give you even stronger pain killers". I think I am on the main ones for PNE, Pregabalin, amitriptyline, tramadol, ibuprofen and laxatives.
I am very frightened about the future as it is now too painful to lay on my side to sleep even with foam and pillows between my legs. I have been laying on my back to sleep for a week and now the base of my spine is becoming very tender.
I am so angry about all the UK doctors who will not acknowledge that PNE exists and will not listen to me properly about the rate of deterioration in my symptoms. I have nowhere else to go to get my through 24 hours I do stand up all day but cannot do that for any longer. If they do acknowledge PNE they seem to think that I am the only person suffering as it is extremely rare. I have started to tell them to look on this website but I bet they do not.
If you or anyone else that you know of suffer with PNE or PNE type symptoms please please send me a quick reply as I want to prove to them all that PNE is very real and not a rare condition.
I have been fighting this condition for three and a half years with no help from the NHS and now I need help from someone as I have no more ideas of my own.
Many thanks, Marion
Dear Marion, one thing for sure is write down the address of this websiteand give it to your G.P. and a Gyni (send it to them as well if you can not see them in the next couple of weeks) and also see if you can be referred to Nantes or to the Britis Professor who trained under Prof. Roger Robert - try and look his name up through google and maybe you could get some names and start there. You will have to really push like mad for help. Have warm baths and put some lavender into the water to relax you - do it every day and I shall be thinking of you and hope that you can get some help. Can you ask if you can have a medication called RIVOTRIL or Lyrica + panadol ? PNE as you see from this site does most definately exist and that is why this site is so very important to be ciruclated.
The main board memebers may be able to give you some valid advice.
I wish you very much luck on your journey. You will find someone out there to help and get a member of your family or some friends to help you on your way.
i'll see from the other's if they can give us the name of the Prof who deals with PNE pain and surgery in the UK. Also they do ops in Bristol (I think).
2cv1964
Do you want an address or info on the team in Nantes, France? let me know if i can help then you can look him up. From being on this site for a month now it seems that some people are transferred to France via the NHS...
2cv
Judy I would be very interested in reading the published evidence,could you tell me where to find it,
We have a leaflet about diagnosis and management with Information Standard ceritfication which includes the references.
It can only be sent by post from info@pelvicpain.org.uk
Thank you Judy I will do that ,could you tell me the name of the leaflet to ask for . Thanks ,
There are two : one on diagnosis and management, the other is about nerve blocks
Thanks very much I'll ask for both of them.
ps i dont take any pain killers either. used to take lyrica but i dont even need a paracetamol. x c
hello catfish, Thank you for your reply. I am very happy for you that your operation has been successful. Please can you tell me how you were able to recover immediately after the operation... did you stay in hospital for 3 to 4 days and after that did you stay in France, as i presume you would not be able to sit down for a week or two??! Were you on pain killers following the operation and then gradually able to come off them? I would appreciate more detail in the recovery period. I'm so glad you are back at work.
I did discuss my anxiety about having the operation to Prof Robert, and he did explain that there was a 70% chance of it working, but it would take at least 6 months to see if it had actually worked - please can you clarify if this is what he explained to you. Thanks so much.
Hi catfish,
I have written to Robert's secretary and still waiting for a reply on where to stay - my husband wants to come up to Nantes with me. Please can you let me know where you stayed after the op to recouperate before your departure?
many thanks.
2cv
Hi, could you please tell me how to get in touch with DR. Robert’s secretary? Many thanks.
Depending on every single case, results could be from excellent to useless, my advice is : go on start the process ...... an expert patient.
Hi again , I'm so sorry that you have suffered this condition for so long . I know how u feel 
I stayed in France for seven days in total . This included a day of nerve blocks & assessment followed by surgery & a 3 day stay then a post operative check on day 7 . Then I flew home . It took a long time to feel any improvement but I returned to work after 6 weeks ( torture!) sat in a kneeling chair . I tried to keep 100% positive believing my nerve would heal . It did ! But very subtly . I took a high dose if lyrica but honestly it numbed my brain more than my rear end . But I took it & I'm sure it helped . I slowly weaned off it 6 months ago . It's been THE hardest time of my life but I made it x praying for everyone who suffers with this . In my opinion it's one of the most humiliating , soul distroying conditions a person can have x still bitter about how very little is know about it in the Uk amongst the medical profession
Dear Catfish,
Thanks for being honest. It is all about being courageous and brave. I don't feel so alone now that I have found this support network, although I still feel anxious about having the Op. I'm still taking Rivotril which is what they gave me as Lyrica did not seem to do the job.Prof. Roberts has asked me to get in touch with him the moment I feel I am ready.
I was diagnosed after having a hysterectomy here in France and that is why I am totally nervous about being operated on again, and still very angry that I came away from hospital in more pain than before going in. Yes it is absolutely horrid, and still to this day many of my friends and family don't actually know the finer details of PNE. Thanks so much for your support and I really hope you continue to be well.
I am in Nantes now, I have done the surgery 3 days ago and I will fly back home tomorrow.
I hope so much you have got home safely and will recover well. When you have the energy and time, I would like to know how you are getting along. Take great care.
best wishes
I will tell you everything in a few days.
I am ready to answer your questions.
How are you now?
Hope op went well, and you have a safe journey. Can you keep me posted on your recovery as I am seriously considering going to Nantes, and would like to know what to expect after the op.
Kind regards
Sure, I can also give you information about cheap hotels and living, in general I didn't feel pain after the surgery.
I'm so pleased for you, and it will be great if you can give me as much information as you can. I'm like a hamster on a wheel going round and round looking for a solution to get me out of this debilitating pain. Was your PNE diagnosed before you went to Nantes, or did they do the diagnoses while you were there.
Take care and Best Wishes
Nobody ever diagnosed my condition, I diagnosed myself based on my readings through several years (I have been ill for 15 years), it can take you about 10 days in Nantes to get finished with the diagnosis and surgery and fly back, i went there all alone ,surgery and living are not expensive indeed, I managed to cover them though my bad economical condition.
You have been very brave doing it all on your own. How are you feeling and is the prognosis good? How did you go about getting to see Prof. Roberts in Nantes?
Thank you for replying,
Best Wishes and take care.
Dr R.Robert told me that I will start feeling good after 6 month, all the arrangements were done by PPSN_JudyB the co-founder of this website, she arranges the consultations and the surgery.
How are you feeling? If you are up to it can you tell me where you stayed in Nantes, cheap hotels etc. and was yours ok? Also any other information that you feel would be useful. Hope you are continuing to improve.
If you would prefer me to send you my email address I'm happy to do that.
Best Wishes & take care.
Is it ok to travel on plane, a week later, did they worry about clots and also how did you sit on the plane
How are you getting on after the surgery? I have suffered from the pain for a long time . Thinking about going for surgery. How can I get in touch with the team? Please help. Thanks.
Hi 2cv. Well I'm happy to tell you that I had bilateral pudendal nerve decompression in January this year after enduring PN and all that goes with it for nearly 3 years continuously and intermittently for many years before.
I was fortunate enough to find the ppsn site and so my journey began.
4 nerve blocks, visits to two consultants in the UK who have trained with Prof Robert.
I was told by one that I had chronic pain that just happened to be in my pelvis and advised by the other to go straight to Nantes.
I had myofascial release of trigger points in my pelvis and this did reduce my pain, but only temporarily.
The best advice I was given was to have a plan and so I did just that.
I'm a single parent with a mortgage, a carer for my elderly Mum and was desperately trying to hold down my job.
I read the utter horror stories on pudendal hope and wrestled with the decision about whether to have surgery or not.
And this was after meeting the wonderful team in Nantes. As soon as I met them I knew they were true experts in this horrific condition.
I was a nurse for 20 years and so researched the outcomes, the genuine outcomes, not just those awful percentages you will no doubt see on 'hope'.
My advice would be to avoid that forum and focus on what you feel is the right thing yo do. This has to be your decision, don't let anyone influence you.
I'm very lucky, I have a French friend who supported me all the way and took me there on both occasions.
I had 8 months off work but I'm pleased to say I returned on Monday and yes I ache a bit but I'm on the mend.
I also met a wonderful man 3 months ago who is very supportive and unbelievably I've been able to have a physical relationship with him with no pain.
The best thing of all is that I have my life back and no longer have to get up every day thinking " what if I am entrapped'?, "what if I get worse?" Etc, etc. And yes there is a 1% chance you could get worse but there is also a 70% chance of improvement.
I really wish you all the best in your decision, I completely understand your very rational fears, its the hardest decision I ever made and 3 days before I was due to go to Nantes I almost cancelled but I'm so glad I had my very assertive French friend to ensure that I made that journey.
And as soon as I got to the hospital and met Prof Robert again, all my fears went. I knew instinctively that I was in safe hands.
Gosh sweetpea02, what a journey for you too. Yes I am pretty nervous about the procedure due to the fact that I have PNE due to suffering from post operative pain from having a hysterectomy via the vigina ( a method they use often in France) meant to be less obtrusive but infact it turned out to be terrible. It is cut out and then pulled out - I have lived with the pain for 10 years with no back up Forum in France and as you will have read I have only recently seen Professor Robert. we are in the process of packing up house to move in December - what a stress, but after Christmas i think I shall go for it. How long did it take you to start to feel you 'might' be getting or feeling better. You mentioned 8 months? How on earth can you sit down on a plane or in a car after the operation. I just don't understand that very important bit. Do you also have a special cushion and a stool to sit at now? i am still taking Rivotril which i could not exist without. Unfortunately they are removing it from the medical circuit within the next two yers. I have tried lyrica and tremodol and some others with terrible side affects.
Can you give me any feed back as to the post operative time etc. many thanks. Everyone on here is so kind and helpful.
2CV1964
So please your operation was successful. In a lot pain and want to go to Nantes. Would mind sharing the contact details? Thank you.
I need these too. Thanks x
Hi 2cv
I really empathise with your dilemma, I had a routine hysterectomy in June 2013 that sadly left me with bilateral PNE. I then had decompression surgery Jan 2014 under the care of a UK based surgeon who had trained with the prof.
Sadly for me the entrapments were too deep on the right side and stuck in scar tissue so still in pain. I feel positive though and I hope in time the pain will ease.
Only you can make the decision about surgery but scaremongering responses do not help at all.
I found the surgery itself far less invasive than the hysterectomy and stayed in hospital for two nights on a ketamine drip.
If you do have the surgery you will need lots of love and support and a huge dollop of patience!
I wish you luck with your decision and if I can help at all please let me know
Kind regards
Dear Poppy, how kind of you to reply. I am so sorry that the entrapments were too deep and stuck in scar tissue - which is of course what i am so afriad of after suffering for 10 years.
I will have love and support to help me through to the other side. Is there anyway you could see someone in France or are you to be on medication for the future? I shall pray for you that the pain will somehow lessen with time and hope that there will be more technology and improvements in the success rates of this op.
Thank you for replying to me. I must get off this chair as it is too painful to continue. Best wishes
2cv1964
Hi, can I please ask you if the team you had your surgery was based in Bristol?
Hello brave people!
I am new and have just joined this forum today. Any advice would be very much appreciated. I have suffered with what I and certain doctors so far believe to be Pudendal nerve problems (entrapment is the most likely) which has become excruciating daily pain for the past year following an anterior wall repair and perineopaphy (perinium reconstruction) on the NHS. I came round from the anaesthetic in agony, the very typical shooting nerve pain in my left buttock. This has increased and spread and now shoots down my whole leg, across sacrum and elsewhere.
My first question is - If the pudendal nerve entrapment was caused by surgery performed in the UK under the NHS what are the chances (and is there any chance) of going down any legal routes to get further corrective surgery (pudendal nerve blocks/decompression etc) paid for by the NHS? I am aware the NHS do not fund this normally. I am not in a position to pay privately for this treatment at present. I am very reluctant to have any further treatment through the NHS after some awful experiences as a result of medical negligence!
I am desperate to start the ball rolling and will happily go to London/Bristol and later France to get the right treatment but I would like an expert diagnosis first aswell as finding out where I stand in terms of being able to get any financial assistance with this. I am only in my thirties with 2 young children and it has got to the point where I am really really desperate.
Thank you in advance for any advice/replies.
Pud pain I do believe that one of the ladies got her surgery paid for by the NHS and had it done in France, she had a very supportive gp and there is some sort of legal reason she got it paid for, because it is not available on the NHS therefore they funded it to be done in France.
I am also considering going over to France, I have had my diagnosis privately by Dr Baronowski in London. Don't let any of the English doctors operate they just don't do enough, where as from what I have been told the French team do about twenty a week, my physio said if she got PN that was bad she would only have it done in France, and she has got ladies who have had it done and are doing well, however it's not a walk in the park, with two young children to look after as well, you would need lots of help for a long time I would imagine.x
Dear Pudpain.
The more I read about pain post operative, it makes me want to scream. I am sorry but I cannot advise on methods of transferals from the NHS to France. I live in France so that is where I am 'hopefully' going to be helped with my PNE pain.(post Operative) not that the Surgeon who performed my op, nor his team will take responsibility for it, (nearly 10 years ago now). I hope so much that the Pelvic Pain support Network board can help you on the above questions you have.
We are all courageous and brave on this site and I shall pray that help can be given swiftly and more directly by promoting this site.
Bless you,
2cv.
Thank you 2cv and 66crusader. It feels so nice to be able to chat to other people who actually understand and really wholeheartedly get it. Finding this forum feels like a bit of a god send! I have felt like a complete freak for a long time and wondered if I was the only person out there experiencing these things!
Do you mind me asking what surgery you had 2cv that started your PNE? I had an anterior wall repair aswell as a perineorpaphy (basically trying to make a periniem where there wasn't one), this was after turning down cystocele and rectocele mesh operations that were being advised. I awoke in agony with the left buttock pain shooting down my leg, really deep and into the pelvis. Even though I was catheterised and bleeding heavily it was this pain that really hit me. I assumed it would go and might be related to the surgery but it has continued every day since. I had serious complications with bladder retention and very nearly died due to medical negligence following the op so I think this 'other' pain went largely ignored.
I am so desperate and just want to be able to do something to start feeling better. The psychological/emotional toll of this is huge isn't it. Not to mention the huge impact on my relationship as we have no sex life at all.
Thank you both for your words of advise, any ideas gratefully received. Keep pooling the wisdom ladies! X
Pud pain.........the physiological pain is as great as the physical pain, it really plays with your mind.......I am on amitriptyline only 20mg but it seems enough to lift my mood and sleep, it does not make me drowsy the next day........but if you can sleep and have your mood lifted that helps.
Also when I was at my worst I wore a TEN machine a lot, it just diverts the mind ...I also use mini electric heat pads by Dreamland, that really helped me in the evenings, I have two one for the lower back and one for the lower tummy.
When my vagina was also really burning I used ice packs rolled up in a small towel for between my legs.
Regards sex ........you just need to tell your husband how you feel........and be close in other ways........I personally feel having sex regardless only makes the problem worse with the nerve damage, sex is the last thing from my mind.
Are you on any drugs? have you tried physio? There is a book by Ami a Stein about pain in the pelvis via Amazon it's worth buying, so you understand what's going on.
I feel for you with young children........does anyone help you?xx
Hello everyone. I am 52 and in January last year i had 4 gynae procedures at the same time one being a vaginal lift. My surgeon told me the fixation was to the main ligament in my rectum. As soon as i woke up i complained of severe pain in my right buttock which strangely also felt very cold, i also had a excruciating 'tearing/burning' pain in my rectum. I spent 15 months in agony, up and down the hospital, going to the pain clinic etc and most of the time with suicidal thoughts as i could not see an end to the pain, i was doped up on Tramadol, Gabapentin & co codamol 3/4 times a day , i also had to use Lactulose and Movicol morning and night, and anusol suppositories which have a soothing effect? i do not have piles the suppositories were used in place of Voltarol suppositories which made me climb the walls in agony, turns out i am allergic to the anti inflammatory in them. In March this year i had surgery to release the sutures from my rectum, had steroid and local anesthetic injections in the rectum ligament, and fixation was then made in my tummy. I was pain free at last and felt i could start living again.
I have little or no memory of 2013 due to being 'dosed up', i don't remember my twin granddaughters being born, my 20th wedding anniversary even Christmas day!!! 2 months ago i had a problem with my achilles tendon and could not put weight on it. As a result i had to sit down at work(checkout operator) for about 5/6 hours a day something i do not normally do. I am a runaround person never keeping still long enough to sit down. After the first week of sitting down at work the pain in my buttock returned, it felt cold too, and it also affected my leg down to my knee. By the end of the second week the pain in my rectum returned also and i just broke down in disbelief. The pain got so bad that when i walked up stairs i could not lift my left leg, i had to physically hold my leg and lift it stair by stair. I always sleep on my left side but one morning woke up lying on my right side? the same thing happened, i could not lift my right leg to walk up the stairs but my left leg 'worked' it wasn't just pain that i couldn't lift my leg it was also weakness? it just would not 'work', the pain all around the pelvic area was just too much to bear. I have been off work 'sick' for three weeks now and although i want to try and go in to work tomorrow (on meds of course) i am doubting i will get through my 7 hour shift. I started googling my symptoms. I soon discovered my symptoms, the same symptoms i had been telling my health professionals since January actually had a name!!! EUREKA!!! i finally found out what is wrong with me! Pudendal Neuralgia, caused by Pudendal Nerve Entrapment which happened during my surgery. I printed off all the information, highlighted the symptoms i had (which was all of them) and went back to my GP demanding someone listen to me. She did, she read the information i presented her and she agreed i most probably do have PN caused by PNE, she has referred me back to the surgeon. I have to wait till 14th November to see her and in the meantime i am back on all the meds plus Amitriptyline. In August of this year my husband and i tried to have intercourse for the first time in almost three years. It hurt so much i cried and actually felt that hot sick feeling you get when pain is too much to bear, we couldn't continue and i have no idea when we will be able to try again. I have read so much about PN & PNE, and all the information is the same. There is no 'real' cure? and the best way to handle this ailment is lifestyle changes! Do not sit down( which i did for 2 weeks!) if you have too then use a donut cushion, do not bend, make sure you open your bowels every day, do not exercise, do not ride a bike etc etc etc Before my surgery i used to go Thai boxing Mon & Wed, Boot Camp Tues & Thurs and often walk the 5.9 miles to work. Now i do...... NOTHING!!! I just shut myself in my bedroom so not to 'bring the atmosphere down'. I am as fed up as everyone here and can empathise with all of you. I am also very, very angry that my surgeon has done this to me, according to her she performed 30 of the same surgeries as what i had and i am the only person who has 'this' problem! Like i am making it up or something? I am not, she dropped the ball!!! And it looks like i am going to spend the rest of my life having this Pudendal Neuralgia flare up periodically. I just don't know what to do.
Things improved in the clamp region (between the two ligaments) but still bad at the alcock's canal and dorsal nerve of penis, There is a nice apartment hotel in the middle of the city near Hotel Dieu hospital called ApartCity (Cite De Congres branch), it for €57 per night , accross the street there is Carfourr super market, you can buy very cheap food and cook it in the mini kitchen in the room, you can book the room on "booking.com", I will be happy to give my email for further help.
Thank you that's been most helpful will be back in touch when I have an appointment in Nantes.
Best Wishes & take care.
Hello, been thinking about you and just wondering how you are getting on, and has there been any improvement in your pain. My plan is still to go to Nantes.
Best Wishes & take care.
Hi i know your post is old but I wondering if you had the surgery. I need information please please contac me.
Please see my notice that I just posted - PNE uccess
me.
SURGERY IN NANTES FRANCE BACK ON
Anyone going to Nantes for pudendal nerve damage?
Pudendal neuralgia burning pain 
Control PNE / PN with phisio / chiro or osteopath?
Does anybody know how much a pudendal nerve block costs privately in the UK?
