Hysterectomy and negligence

I was wondering if anyone has developed PNE as a result of a routine hysterectomy? I have been told on numerous occasions by specialists that a hysterectomy cannot be the cause but I vehemently disagree as I have never ever suffered nerve pain but since the hysterectomy have been in chronic pain and consequently diagnosed with bilateral PNE. IF you have had a s similar experience then be really good to hear from you. Also has anyone considered exploring medical negligence as a result of poor positioning during the hysterectomy. Would be good to talk to anyone with this experience as Fed up of being made to feel that PNE and a hysterectomy are not linked! Thanks

34 Replies

  • My surgeon denies that anything he did during my prolapse repair is associated with my chronic pain. As I said to my GP - didn't have it the day before but had it ever since, didn't do anything else that day to cause it! In his 30 years of practice he has never seen a case of PN and wouldn't ever consider it a consequence of surgery! Not having much luck at pursuing a case, although have looked at it from every angle yet. If you have no success with a private case, you can report it to the NHS ombudsman and they will investigate, however this takes a long time. I am determined that someone has to accept responsibility for me losing my career and half my salary since I had that operation. I had no idea a 30 minute operation could have such life changing consequences. Doctors will stick together though, no-one will agree to point a finger at another doctor and say it 'went wrong'. My doctors all seem to believe I should just live with this! Shocking in this day and age that patients should just have to accept chronic pain caused by the nhs when there is treatment available, but not accessible from different areas because of funding issues! It feels like you one person against the whole system, where you are made to feel like you are the difficult one. I empathise with you. Would be nice to hear if anyone has had a successful case. Take care.

  • I agree, you are very much alone with this condition, its very sad, if we were an animal we would be put out to grass and stay there. In the ten years Suebooo I cant say there has been any treatment that has helped me. The other issues that occur if you are menopausal or hormone deficient is the sensitivity to hormone replacement, with me its one step forward two behind. I wont give up though, I cant.

  • This sounds like I just wrote it myself. Finally finding people just like me! Have you found anything out about this?

  • I was not successful in pursuing a claim. I decided I needed to move on, look forward not behind me as the only person it was affecting was me. You can't spend your life being bitter. It happened, so deal with it. I have pudendal nerve decompression 16 weeks ago and am still recovering.

  • Hi !

    I developed pn after a traumatic gynaecological examination, the gynaecologist could,nt work out what was causing the pain ,so proceeded to hysterectomy, pain went into orbit.

    I was told later that the hysterectomy was totally unnecessary by another gynaecologist I took legal action but got nowhere.

    I don,t believe anyone could prove their pn was caused by surgery even though so many people report this.

    Prof Robert from Nantes has written quite a lot about this.


  • Do you have a link to prof Robert and his thoughts?

  • Hi Poppy,

    I,m sorry I don,t have the link. In the early days of my pn I read loads of articles to become as informed as possible, it was the I found this info. The gist of it was of all contributing factors of reasons why peopled elope pn pelvic surgery was high up then, with hysterectomy being particularly cited.

    I am so sorry you don,t think your surgery has worked but, you still have plenty of time in which to make progress. Some people make gains in the second year or even later. I know this is poor consolation when all you want is your old life back, but do bear it in mind.

    Kind regards lucyp

  • Lucy, I have suffered from this debilitating condition since a routine smear test, that was 10 years ago! I too would like to hear what Prof Robert has written about this. I have it in writing that my condition COULD be related to the examination. Its trauma to the area, but why is it some people suffer and not others. I could write a book about who I have seen and what treatment has been carried out. All sadly without success. I had a hysterectomy after the smear test six years later but my condition didn't worsen. My prolapses were causing pressure on the nerves so I knew I had to get it sorted. However, all my prolapses have returned, four years on and will probably have to get them done again.... bad blimin luck or what! How long have you suffered Lucy?

  • Hi Jacqui,

    I have suffered from this terrible condition for six years, and like so many of us have had numerous treatments including surgery, most of which we have personally financed.

    Whilst no treatments have given me the relief I was hoping for I am more comfortable than I used to be.

    I have had a few small improvements over the years with different treatments and have accepted my condition and limitations. I continue to explore any new ideas and am currently interested in David's story.

    My heart goes out to everyone suffering this ghastly condition .


  • Lucy what has helped or managed your condition better? Last year I had the best year as far as pain was concerned. I still couldn't do certain things, but I noticed I wasn't taking so many pain killers. Then out of the blue, bang, the pain decided to target me in a different area and I am suffering quite badly again. Back to the drawing board, what a nightmare of a condition, it plays with your mind...

  • Jacqui,

    My decompression surgery in Istanbul gave me a small amount of relief.

    Two years which was too long ,physio with Ruth Jones gave me some relief.

    I had a year with a very holistic tai chi therapist that helped quite a bit.

    Recently stopped lyrica and now just use tramadol and amytrptlline this has controlled pain better.

    All these minor improvements have helped. I live under no delusion that at any time for no reason it could revert back. I am thankful for each day which is more manageable tha in days gone by.

    Regards lucyp

  • Hi, when you had the decompression surgery what did they find?

  • At surgery my pudendal nerve was jammed in hard at the ligament grip. The nerve was released and wrapped income talk tissue to protect and lubricate it's movement.

    I suppose It gave me about15% improvement! better than none.

    Kind regards lucyp

  • My hysterectomy in 1996 was the end of my life as I knew it. It was supposed to be routine but turned out not to be as my belly was completely full of endometriosis, misdiagnosed by scores of gyn doctors over the years. It took 8 hours and 2 transfusions to untangle my rectum and organs from the cysts. The doctor at that time who had told me briefly the year before when I went to see her about the bleeding, intestinal problems and terrible pain, "Well if it's bothering you so much you might as well have it out." I was a bit shocked and waited a year until, in desperation I agreed to the surgery. It was supposed to take an hour. Afterwards I had horrible pelvic pain that woke me screaming in the night. Nothing was wrong they said. I could not have a normal BM and finally had some rectal surgery that removed a section where the pain was unbearable. I lost the use of my left leg for a period of three months (I was 55 at this point) and got it back by a strict regimen of swimming but the pain never left. Now I have progressive neuropathic muscle pain and all my joints are constantly inflamed. I cannot walk without my calves cramping up. I suffer constant numbness in both hand terrible pain in my hips and shoulders. I have undergone treatments for CRPS. I am not blaming the hysterectomy for all my symptoms but whatever my physical makeup (and I had had trouble years before after a serious car accident from which I had recovered) the pelvic surgery triggered a debilitating condition. On the Pelvic Pain Website there are hundreds of stories like mine. I know when my crippling pain started and no one will convince me that the surgery was not a trigger.

  • Sounds like you have had a torrid time ... I have also been told, after having issues with a sensitive tooth after root canal, that once you have chronic pain it can target anywhere in the body that has been traumatised. That is so scary and with each procedure I have to try and put things right, I worry that that particular organ/part of my body will also be left in pain. We need rebooting to try and calm down the nervous system. I bet we all come out in cold sweats when the nerves misfire?

  • I was in the hospital for 5 days 6 years ago when the pain got so bad I couldn't walk. They put me on methadone, oxycotin, celebrex, percosets, lyrica (had horrible reaction to that don't believe TV ads), patches while they x-rayed my whole body and stoned to the gills I still cried when they asked me to straighten out my knees for an MRI. I slept mostly and they told me it was all in my mind (pretty much) and I went home with scripts for all that stuff and told "return to normal activities" which I thought was crazy. I don't mind being stoned when I am in the hospital - actually I'd welcome being put to sleep for the week until I went home but being like that at home is nuts. So I stayed at my daughter's home for 3 days withdrawing from all the medicine, sweating, chills, shakes just like you see on TV movies. The week's sleep seemed to be little restorative and I was a little better but that terrible pain returned within two years. I spent another week in the hospital on Ketamine where I discovered what the term "Purple Haze," meant. Even doped up like that numb from top to bottom when I got constipated (2 days into) my pelvis went into agonizing pain which only an enema relieved. The Ketamine did seem to somewhat relieve the worst of the nerve pain and if I took it really easy and made sure I slept I could barely manage. I had had a right knee replacement in 2001 and was supposed to have the left one done at the same time but kept putting it off until last year (both knees undiagnosed by at least a dozen moron orthopedists while the floating patella tore away all my bone cartilage (a genetic condition diagnosed by a brighter surgeon and repaired in my middle daughter before it got to the point she needed new knees - my older daughter now needs new knees since she thought holistic methods would be enough). So in 2013 my right knee was fixated with arthritis in a 40 degree position and I was dragging it behind still unable to stand up straight with the pelvic pain. So shock treatments or rest or even surgery can re-orient chronic pain as I have read but it is only temporary. I am now diagnosed with Peripheral neuropathy which may have a genetic component as my grandmother, brother, and aunt were crippled by something similar and I am fighting to stay out of a wheelchair. But the pelvic pain (which was relieved for almost 2 years by lasis of the scar tissue) still seems the trigger. The only thing that keeps me moving aside from prednisone (which I try not to take) is swimming which I try to do religiously. My advice don't listen to a word most doctors tell you when you try to tell them something is really wrong. If you have money go for 2nd, 3rd ad infintim opinions. Don't expect a cure and demand drugs and treatments which really work. Half of the stuff out there including the new drugs, anti-depressants etc. is just junk making pharmaceutical companies rich. When I felt totally suicidal and doctors were treating me like a baby and I felt I must be crazy I got more out of talking to fellow sufferers on the Internet. If I hadn't heard so many stories like mine I think I would have killed myself. Right now I am having trouble getting my youngest daughter (who is starting to have similar symptoms) to be reasonable and not necessarily expect a cure. I am 70 now and I have a couple of doctors who are reasonable and will give me pain medication, valium for the muscle spasms and pain relieving treatments that do help. I take these drugs sparingly and hate the side effects of Opoids but sometimes taking them for short periods breaks the cycle and I am able to manage my day. I am doing better than my brother (dead at 59) who was doped up with 800 miligrams of serequol while he slept away the years he didn't try moving around by wheelchair or my aunt who spent the last 15 years of her life wheelchair bound and doped up on Clonidine which made her more confused than ever. Both of them had my symptoms, lost their ability to walk and were dismissed by doctors as neurotics (which I feel most of us are but which is not an excuse for most of the pain.) The pain is real. Until my hysterectomy I went to the gym four nights a week, walked 12 miles without trouble, road my bike the length of Staten Island, and sometimes went ice skating and dancing. All that ended in 1996 with a few brief intervals. THE PAIN EVEN IF THEY DON'T KNOW WHAT CAUSES IT IS REAL AND DOCTORS NEED TO GET TRUTHFUL WITH PATIENTS AND ALSO BETTER INFORMED AS HOW TO HELP THEM. These days they mostly seem to have no time but love to bill your health insurance for top dollar while they pass you on to endless specialists and idiot physical therapy at the hands of book learned babies who don't listen when you tell them your body hurts with something and you don't think you should be doing this (this is what happened to me when I lost my leg - I had a young idiot who had me stretching out my legs which were very supple almost to a split and the day after on the way home from work the muscles in that leg went into spasms that lasted months.)

  • I had a prolapse and instead of a repair I was told the answer was a hysterectomy which I had February 2001. I was fine after this surgery and was shocked when 8 years later I had another prolapse. I had a repair and woke up in agony. They insisted nothing was wrong and no one would listen to me. I went back to that hospital 4 times, seeing different drs. I was treated as a liar, in was awful. This was all done at a private hospital in Kent that my husband had subscribed to working for bt. I was referred to Royal Free and saw Prof McLean. He told me what was wrong, he said the stictch that had been out in was too tight and he'd operate on me. However 2 months later Prof McLean sent me a letter suggesting I go back for the treatment at Benenden. How could I go back to Benenden for treatment when they couldn't see a problem! I tried to take my own life, my husband and sons were distraught. My husband spoke to my gp and he sent me to my local hospital. The consultant there said PN is rare but well documented but untreatable. If the stitch had been taken out within the first 10 days then I wouldn't have ended up with PNE! I complained to Benenden and they said I'd signed the consent form and they didn't want to know. Two years later and still suffering, my gp wrote to Prof McLean. I waited a while for the appointment but eventually saw not him but Miss Reid, she referred me to UCHL but I had to wait over a year for that appointment. I've had nerve blocks and attended a pain clinic and they've done what they can but as we all know no one knows what to do with us.

    I recently had a dedicating MRI and I'm waiting for the results. So once again I live in hope that there's something they can do to eleviate this pain.

    This may be a rare condition but until surgeons are made aware of this delicate nerve this will carry on happening.

    I've been told that as well as rare but well documented the surgeon was careless.

  • Thank you for sharing your experiences, it is devastating to hear of such chronic conditions sadly I can relate to it all. This condition is not rare it's misdiagnosed and a lack of knowledge about it in the medical profession. I've had decompression surgery 11 months ago but the surgeon has now deemed it a failure as the entrapment s are too deep so I'm left in this condition and been forced to walk away on a wonderful 20 yr teaching career. I am sending best wishes and positive thoughts to everyone. I am determined that in time we will beat this nightmare!

  • I too had a hysterectomy for fibroids and excessive bleeding in 2009. I was 53 and not quite into menopause. The pain started exactly 2 weeks later. I have had so many treatments and medications but I still have nerve pain. The meds led to Interstitial cystitis and IBS. I had to give up a career and fortunately I was able to go on disability. I am in the US. I did manage to find Drs who acknowledged my condition. After being hospitalized for opioid induced hyperalgesia and withdrawal, I was put on Butrans patch and Suboxone tabs. I still have pain but not too bad as long as I take my meds. Keep trying to find a sympathetic doctor and a good pain management doc. Good luck

  • Keep going Ladies, and men, we need to stay focused, be determined and most of all stay strong... jxxx

  • Surely there is something we can do to raise awareness of this condition? It is so wrong that we are the ones made to feel like malingerers and hyperchondriacs when our conditions are real and mostly misdiagnosed. We are the ones suffering whilst the doctors that treat us see us for five minutes every now and again, judge us and have no understanding of our everyday life battles. I personally would like to see an information leaflet pass every doctors desk in the UK at least. I plan to use my anger in a positive way to prevent this happening to any more people. If it prevents at least one person suffering it would be worth it. No idea what to do though!!!!

  • Hi Poppy I had vaginal hysterectomy in 2010 , 2months later I developd PN symptoms. I also have been told that hysterectomy couldn't cause PNE when did you have yours? thanks

  • I had mine June 2013 and felt straight away something was wrong as I was in so much pain. Are you getting any pain so seeing a specialist?

  • On two tramadol + pregabalin. Booked my first physio for next week. I did complain about my doctor but nothing happend. I wonder what possibly could go wrong as it should be a relatively safe surgery . What about you?

  • I went 2 years in terrible pain before a doctor told me that my mesh that was put in for urinary incontience had to come out. Even after that the pain continued. I had to go see Dr. hibner in Phoenix AZ. He did a nerve block and a MRN which looks at the nerve. What happens in surgeries a lot of the time is they insert the mesh into an area where there are nerves that are damaged and cause terrible pain! I am now scheduled to have a major surgery in January in a hope to relieve me of some of my pain. LADIES THIS IS A REAL CONDITION AND IT CAUSE BEYOND BELIEF PAIN AND DISABILITIES!!!! Look at the mesh news desk website. There are thousands of us. But because some doctors get kick backs from some big medical companies so I have heard and believe in my personal opinion they continue to use these bad medical products and don't care if they hurt us. We are not that far from the dark ages. Women don't seem to count. Tis use to be called a rare injury to the pudendal nerve. Well it is not so rare any more. In my city there are no doctors who will even treat this condition because it takes very specializes training. To quote my GYN the pelvic area of a woman is a nightmare. 3 years later I am dreading a very hard surgery to have and recovery time can be as much as 3 years. I will never again live pain free. I have been told that I could have no relief or maybe a 50% decrease in pain but I will always have pain. Thank you to the doctor and the medical companies who did this to me. I hope when your day of reckoning comes you get back the pain you have caused to thousands of women!

  • My mesh is out and I have tried everything to stop the pain. Can you please please tell me why the surgery and recovery is a night mare! How are you now? You can also email me at beuns_sandy@yahoo.com. I have had no success with anything. But I am terrified to have the surgery too. I have heard it is hell can you please tell me your experience please!!!!

  • Sorry should be bruns_sandy@yahoo.com

  • Decompression surgery is tough, post surgery for me is now 11 months and still no relief. I had bilateral decompression surgery but sadly the nerves were too deeply entrapped and the surgeon could not fully visualise to decompress. There are many situations though where decompression surgery has been a success and given relief. Recovery is slow and oh need tremendous patience and lots of love and support. Good luck

  • My sentiments exactly. My right side was entrapped in a mass of scar tissue, he tried to laser what he could see but told me the entrapment s were deep and he couldn't laser without risk of permanently damaging the nerve. My left side was tightly tettered to my ST ligament. I fully believe it is the positioning we are forced into during these procedures that causes t h e damage. My surgeon has not given up on me but as I have had no relief to date he has spoken to me honestly. I am a very positive, optimistic person and always live life with a smile on my face but this condition could test the patience o f a saint!!!

    I wish you all the best for your personal journey and healing process

  • I got PN after two tiny pelvic bones (inferior pubic rami) got fractured (during sex!) and even though I talked to the female radiologist FACE TO FACE, and paid for the doctor-ordered contrast out of my own pocket, that Dr. wrote "herniated L5 unchanged"! Three more images were done, and eventually the PN was dxed, and I was referred to pelvic PT. That physical therapist called me after reviewing the images herself and said, " I can't work on you until your fractures heal."!!! It was 3 months since the first image was done 3 days after the pain (and blood!! I'm post hysterectomy at that time 20 years!!) and since all the radiologists had missed them, I was not immobilized and the PN followed very fast. I'm in the US, where it's supposed to be easy to sue, right? WRONG. In my state, you have to be a corpse to sue. These doctors, arrogant and horrible, will stick together like glue, claiming you're a hysterical woman, etc etc. I really understand your anger and frustration. Here, there is an MD who could diagnose and treat me, but he takes no insurance, and I can't fly to France. I'm too poor to buy meat, let alone pay $8000US JUST for a correct treatment plan. The nearest surgeon to me who takes insurance is 3000 miles away in Arizona.... I'll have this for the rest of my life. My husband and I haven't had sex since that day 2+ years ago. Why he hasn't left me, I don't know. True love. But we can't even be next to each other, kiss, or hold hands. Any slight arousal sends the pain up like crazy. None of this "there are other ways to be intimate" for us. And all because those radiologists didn't do their jobs. Especially the first one. That's who I wanted to sue. But I've given up all hope. My sexuality was TAKEN from me. If that isn't negligence, then I don't know what is....good luck. Think and plan your trip to France. At least you have that option, so not all is lost for you. Good luck.

  • I understand your pain, I wince when my husband comes near me as the pain is so intense. He often feels rejected and I have to work twice as hard to reassure him! Saying that he's my rock and my best friend and although this condition has stripped me of many things it'll not strip me of my marriage'

    Good luck to you hope you can find a way foward

  • I listened to a great radio 4 programme called Tell the Truth, it was about new legislation that came out last November for surgeons to tell the truth when things go wrong. I'll copy and paste on what the legislation means:

    I listened to a radio 4 programme called Tell me the Truth. It was about new legislation for patients who have been fighting for closure but surgeons refuse to accept responsibility.27.11.14: HISTORY MADE TODAY AS "DUTY OF CANDOUR" BECOMES LAW - MORE ACTION NEEDED TO MAKE NHS COVER UPS A THING OF THE PAST

    Today marks an historic moment for the NHS in England. The statutory Duty of Candour - a legal duty to be open and honest with patients or their families when things go wrong that can cause harm – comes into force.

    Action against Medical Accidents (“AvMA” – the charity for patient safety & justice) has campaigned for such a duty for two decades and together with the recommendation of such a duty from Sir Robert Francis following the Mid Staffordshire public inquiry, helped persuade Health Secretary Jeremy Hunt to agree to it. Successive Governments had refused to go as far as making honesty when things go wrong a statutory requirement. The Duty of Candour applies to all NHS trusts and will be regulated by the Care Quality Commission (CQC), which has severe sanctions available for NHS trusts who do not comply including, ultimately, criminal sanctions.

    Meanwhile I hope you're doing ok x

  • Hello Poppy.

    I have just found your posting 11 months later!! I am naturally wondering what has happened to you !? I was terribly moved and upset about all that you have been through.

    In answer to your posting. I had a hysterectomy via the vaginal passage in France in a small clinic as they said it was less intrusive..............10 years on and after many visits to other hospitals due to terrible pain in the vagina and labia and hot polka pain in the vagina wall and electric pulses between the walls of my vagina and not being able to sit down for long without terrible pain I ended up having Decompression surgery in France Nantes. I had my nerve blocks done in France and then 9 years later after plucked up courage to see someone else as I hated the thought of being poked around any more, never the less went to Nantes this April 2015 to have the Surgery performed by Professor Robert. He is the man to see if you still have not had any help with your post hysterectomy pain. It is very difficult to get any confirmation that the surgeon performing the hysterectomy or his team have caused long term post operative pain....you wont ever get an answer or I did not apart from my gynaecologist surgeon had tears in his eyes when he saw how much pain I was in and he wrote down on a piece of paper what he thought I had ''PNE'' he gave me a simple nerve block which was a pain killer via injection which meant I could get home in the car and lasted for 24 hours . Then I was given perscriptions for Rivotril and anti-inflamatory tabs which I have been on for 10 years! I had two more nerve blocks performed by proper consultants to see for sure whether I had was suffering from Pudendal Nerve entrapment. which \i was.

    Are you okay?

    Where are you?

    I hope you have had a proper diagnosis and are well into recovery.

  • Hello Poppy. Just wondering if you are still on this system and of course How are you?

    Best wishes :-)

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