I woke up after prolapse surgery in agony. I was told the operation was successful with no problems at all. It was as if they couldn't hear what I was saying. I'd had two children and a miscarriage but this was worse than any pain I'd endured in my life. The pain was endless and all I was offered was paracetamol. I didn't want to leave the hospital until they had sorted my pain out but they insisted. They told my husband that the pain I was in was quite normal. Because of the surgeon denying any problem, it took me over a year to get anyone to listen to me. I was suicidal but for my young son I didn't want to face another day. This surgeon totally ruined my life and my marriage. I know a surgeon would not have joined this profession if he didn't want to help people but sometimes things do go wrong and in my case it could have been reversed if done within 2 weeks, if only he'd listened to me. I went back 3 times to see him, each time I was polite and begged him to end this pain. He said there was nothing wrong and it must be something else and walked out of the room!
I hope there will be surgeons out there reading this, if so, please acknowledge a patients pain. How would you feel if it was someone you loved was in agony after surgery and even a year later. I have been given some faith back with the doctors that are trying to help me, unfortunately it is too late to reverse this operation. My life is over, that surgeon might just have well cut my throat.
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paulyne
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I have just read your message and I sympathize 100%. I too have the same problem only I had both front and back prolapse done as well as a hysterectomy done at the same time. Please dont feel you are alone fighting this crippling complaint. Are you on the FB site? there are others there who are also suffering and we get support from one another.
Dear Marion, thank you for your message, it helps to know I am not alone, I'm very grateful. This is such a wonderful site, whoever started it must have been a life saver to many women.
I'd had a hysterectomy 8 years before, for a prolapse but didn't experience any problem with pain after. So, when 8 years later I had a further prolapse I was surprised I needed further prolapse surgery, as I didn't think anything else could fall down!
Can you please tell me what is the FB site as I haven't heard of it?
Oh I am so sorry for your troubles. I am in a similar position and am doing pelvic physio therapy. My PT feels very strongly that after any pelvic surgery PT should be a must. I had to leave a job I love and could do very little. The physio therapist has given me back hope. Plus it is so great to have someone take the time to listen, unlike many Dr's who don't take the the time to really listen. Have you tried physical therapy? I really hope things turn around for you. Take Care
As you will know all too well, you get good days and bad days and I've had a couple of very uncomfortable ones, on top of that I've had a heavy cold and have to quickly lay down when I feel a sneeze coming. I'm sure we can all relate to that!
Yes I sure do know about good days and bad. Constant pelvic pain is very draining to live with. Emotionally and physically it is so tough. I hope your cold goes away quickly. Wishing you better days ahead.
My name is Shayne and I am a physical therapist who specializes in pelvic floor disorders. I would recommend you go to the website womenshealthapta.org and look under the tab that states "our patients" and then locate a PT. It will then allow you to enter where you live so that you can find an appropriate therapist to help you. If you have not tried therapy I strongly encourage that you do. It will help you deal with the pain and assist you back to function.
go to icrelief.com. Leave a comment for Iliana Brockman. She can direct you to the best person to see there. She is a pelvic pain sufferer who lives in the UK.
I am so sorry to hear what has happened to you. I had a pelvic repair last year and have had pudendal nueralgia ever since. The surgeon's attitude to me was dismissive and unhelpful and my GP knew nothing about the condition. However it turned out there is a specialist physio here in the Borders and she has made such a difference to me, giving me six months of care and support. I still have to take some medication each day, Tegretol works for me, but it is much better. I still have problems sitting for too long so long car journeys scare me and I haven't been to the theatre or cinema too often since the operation but life is bearable and my sleep isn't disturbed. And despite the surgeon's almost gleeful foretelling I can still enjoy sex and do have orgasms sometimes; he was sure I wouldn't be able to!
One good tip I got from the site was to buy a support cushion that makes sitting here at the computer comfortable, and my doctor wrote a letter that meant I was able to buy it VAT free. It's a valley cushion, but would you believe it I can't find the details just now. I'll try to find them if you think it would help.All the best, Julia
Hi Julia, thank you. I was feeling sorry for myself yesterday until I found this site. I've had such amazing replies. I'm presuming you, like me, live in the UK, as you say VAT. My mother in law had one of those honeycomb type cushions and I borrowed it after the operation, its great.
Unfortunately penetrative sex is too painful but now my husband understands that I really do have a problem, he's been really understanding. It was really difficult when I went back to see the surgeon after 8 weeks and he told my husband that the operation went very well and actually sex may help improve things! What that surgeon did to my head as well as my vagina and marriage was dreadful. Obviously he didn't take his Hippocratic Oath seriously.
Actually Paulyne, your not really out of order about the doctor. I have lived with pelvic pain issues since 2005 and am astounded at the number of doctors that have no knowledge of these issues, and so many of them arrogant to the point of refusing documented information from professionals and PP study clinics. Pelvic pain disorders really opens your eyes to the fact that a doctor is just a regular person who has good & bad days and some of them have medical & physiological problems of their own. We laymen/women often times put them on a pedestal because of their schooling.....but this way of thinking extends our pain because we "want to believe" everything they tell us and we stop searching for a specialist too soon. The most important thing I have learned through my years battling PPD is to find a highly recommended physical therapist and they will know the specialists in your area. They are really our first line of critical care and pointing us in the right direction. Once your health problem is validated you can, at least, get a decent long lasting pain medication from your primary care doctor while you get through your flare up. Good luck and God speed with your healing.
Hi could you explain a bit more about your prolapse and surgery you had and your symptoms of pain and where they are? I have prolapses which resulted from large babies being very active and must be something to do with my genetic make up as I'm only 36 this happened 6 months ago during a run. I was experiencing so much pekvic floor pain/ weakness couldn't walk hardly. I found that because my symptoms are more extreme than the usual the medics egnore it I also have some hip related pathology whic occluded as a direct result of the run when my pelvic floor went south. Drs say it is not in any way connected but I think it must be it happened at the same time!!! Thankyou
I definitely put my first prolapse down to being on a wave runner, it was a really rough ride. I can't remember exactly how long after that I felt uncomfortable but when I looked I had a bulge protruding underneath. I was horrified and had no idea what it was. I was told it was a prolapse and I had a hysterectomy. They don't seem to do that now, they just repair without giving a hysterectomy. Things do seem to have moved on. Guess its like taking a tooth out when it just needs a filling. Then 8 years later I was helping my husband move some plasterboard when the same thing happened again. I had another 'bulge' and once again I was really shocked, I thought how can this be, what's there to fall down. That's when I had the surgery that caused the pudendal nerve damage.
Even if you can't see the bulge you'd feel it. I remember pushing the bulge up the second time.
The information given to me by Kath and Shayne about pelvic physio therapy is something I would suggest you look into.
Welcome to this forum. You have been through a terrible ordeal but unfortunately it is a rare complication of vaginal surgery to have pelvic nerves trapped or damaged. After a hysterectomy again it is not uncommon for vaginal walls to collapse & prolaspe with straining & lifting (hydrocele/rectocele). All of this is in the small print ! Naturally we never think we will be so unlucky for things to go wrong. It sounds quite likely that your pudendal nerve is involved but dont give up hope as there are treatments out there. Please check out pudendal hope website - there is a lady called catherine a who had a similar case & had surgery to decompress her nerve. Years later she is 90% improved. I developed pudendal nerve entrapment from chronic ligament strain from years of exercise/lifting & had bilateral nerve decompression 10 months ago. I am doing really well & feel hopeful for more improvement. I think seeing a pelvic expert is crucial & also a pelvic physic (there is a list on pudendal hope website).
please inbox me if you want any further information. Everyone on this forum knows exactly how you are feeling & are here for you.
Hi Catfish. How are you getting on now after 5 years? I am eager to find successfully decompression surgery stories to see if there is any hope in starting this journey. I've had this for 5 years however it is not diagnosed. I have back of leg, buttock, hip, vaginal, rectum, and heel pain, all in right leg. I have been on Gabapentin which I recently tried to taper too quick, and although I went back to my 900mg from the 300mg I got down to is still not working as effectively after 31 days so far. The withdrawals were horrendous. I just hope it reaches its potential again as I was relativity pain free for 3 years with it as well as 30mg Amiltriptyline.
The Vaginal pain is sometimes burning/aching but at its worst it is a bearing down feeling. Almost like something could fall out. Its really worrying me.
Hi Caty, I hate the thought of other women suffering with this awful nerve pain but to have such support is wonderful and makes me tearful thank you.
I have been accepted for treatment at UCH London and have had 2 nerve blocks which sadly haven't helped. I'm due to have a ct guided one in May. They said they didn't think surgery would be an option. I'm due to see my doctor again in July and will ask about nerve decompression as this sounds like it could really help. Where did you have this done?
I am going away for just over 2 weeks tomorrow to a village in France for a badly needed break.
Hi paulyne, I too was seen at London but found them to be very uncaring . Infact I felt worse after seeing them as they offered me a nerve block in six months time ! Try putting glass in their vagina for a day let alone six months ! I went to nantes & had my care under the wonderful professor Roberts . The nerve blocks are all ct guided & cost about £100 pounds . Cheap at the price I thought . Plus it was diagnostic that my nerve was compressed . Their pain specialists are amazing . In total my operation & hospital stay cost approximately £6000 . I was happy with the care & ultimately they are compassionate . Hope you have a great holiday & let me know if I can help in any way x Caty
Thank you so much for your reply. If this treatment which I've waited so long for doesn't help me, I would definitely want to see the doctor you saw and would appreciate more info please. I've been told any more surgery would cause even more scar tissue which would make things even worse. So, compression does sound the way for me to go. Will you have to have follow up treatments and do you not have to take drugs any more? Also, I am still prolapsed which is worrying as I don't know how that can be addressed without surgery.
I know you posted some time ago, but if you see this, perhaps you can reply. I am really struggling at the moment. I've had a chronic UTI for over a year and am on antibiotics for this. Every time I open my bowels, I get dreadful pain in my vagina and bottom which lasts the whole day. I have just started physio with a lovely women's health physiotherapist in London. I don't have a diagnosis and don't know who to go to . I had heard that they were not very caring in UCH. Where should I begin for a diagnosis and possible treatment? Thanks so much, Caroline
I'm feeling uncomfortable today, sitting at my pc makes it worse but I feel I need to reach out to other sufferers. The medication I take (although a low dose) makes me heavy headed. I can't imagine life without pain now. Could anyone recommend a dvd for pelvic floor excercises I could buy, as I still have a prolapse and I think this pushing down is aggravating the nerve even more.
hi paulyne, sorry for my late reply. Im nearly 1 year post op after my bilateral decompression surgery & doing very well. I've returned to work & dispite no longer running i can power walk for quite a few miles. My pain has reduced significantly although i still take pregabalin which i think i could probably start to reduce (although i shall wait for my follow up in france).
With regards to your symptoms a vaginal ring can be used to hold up the prolapse although this may make your pudendal nerve pain worse !! perhaps see one of the physios on the pudendal hope list & they may be able to give you some expert advice as im sure kegels will only make things worse. I hope that things become easier for you as its a horrible condition with devastating effects on your life but there is treatment out there. Good luck. Caty
I'm sorry this has happened to you, was it caused by surgery?
I manage my pain with drugs and lifestyle. Physio is important but you need it straight after an injury. It took 8 years before physio was offered to me. The exercises are something I can tell you how to do if you'd like me to?
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