I have written on here before about my operation and subsequent pain on left side. But just a quick recap. I had bowel and uterus suspended with mesh nearly two years ago now, and every since have had worse bowel problems. But I also had pain on the left side, deep ache with burning that would spead to inner thigh and down towards my bum and groin and a feeling that something was pushing down when I walked. I could manage this pain if I did very little but any activity would flare the pain and the only way for it to go was to lie down. Anyway the last two days I now have quite severe pain on the right side, it it really hard to explain it feels like everything is really burning and that the actual bone is hurting. I have had a look (as you do lol) and I can see nothing, it is slightly sore/sensitive to touch on both sides but not equivalent to the actual pain that I am feeling inside, I am also getting the odd severe shock like pains in various parts of my body eg leg and stomach and hip but it the burning that is doing me in, it also really hurts to walk, it all feels so sore, like i have a million bits of glass in me if that makes sense. What the hell could it be??? I am feeling a little bit better this evening, as I have done nothing all day. I was convinced I had pudendal nerve damage but now that it is on the other side I am not so sure. I am down for a pudendal nerve block but have now convinced myself it is the mesh. I mean why has it started hurting so badly on the other side two years after the operation. Anyone experienced anything similar?
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Oh and just want to add I have this weird bubbling sensention low down in my stomach any ideas? It doesnt hurt, but coincides with the severe right sided pain, but oddly enough the bubbling is on the left side.
It definetly sounds like pudendal nerve pain. If you get relief after the nerve block you will know for sure. It can change sides as there are branches off the pudendal nerve. My pain started with burning up inside & felt almost like I'd got broken glass by my cervix. Sitting bones & cocyx ache when sat.
I'm so sorry to hear of your awful pain. I have been diagnosed with pudendal neuralgia and have pain on both sides. My doctor in San Francisco who is really good told me that pudendal neuralgia is often experienced as pain on both sides and it's a myth that it's on one sides.
I know pudendal nerve pain can be on both sides but its more common on just the one side. What I dont understand is how out of the blue the right side is very painful, it is my pubic bone on that side that hurts and the entire area radiating downwards is sore. With my left side it is just behind that sit bone that aches. This is different it is much more painful. I have just sat and cried all morning. I sat and watched something about neural pathways and now just think maybe it is all just in my head. Which somehow makes me feel worse. Actually I dont agree with it at all, I have tried to ignore my pain and carried on for 7 weeks at one point doing everything, but the pain was so severe that in the end I could not handle it and it then took 3 weeks of bed rest to get it back to managable levels. But then again maybe it is all in my head, I really do feel like I am going mad sometimes, MRI was clear?? I suffer from awful tinnitus as well and recently saw a clinical psycologist. She waffled on for ages about something to do with that I am on constant alert, just like the video I just watched and that some gate in my head is open that should be shut!!! I did not really get what she was on about other than that I am stressed. Anyway fed up today as you can see.
Have your ilioinguinal iliohypogastric and genitofemoral nerves checked. They can cause groin pain, thigh pain, labia pain, hip pain and lower back pain. Have you seen a pelvic floor pt? Nutrious movement may help as well if your body if is compensating.
Have had PN for 8 years. Could not get answers from doctors for about 4 years concerning all the burning and other various pains. I would try to continue on with working ,gardening ,exercising etc. determined to beat all these pains. During all this I went down hill mentally and ended up in a bad way and like you I thought it must be all in my head. But really how could pain like that be imagined? Had to go on meds for anxiety and depression along with sleeping med. However eventually learned to pace myself and learned my limitations. You are not going mad. You need answers so that you are not constantly ruminating. The first contact I got any sensible understanding from was a womens' health physiotherapist. Be kind to yourself and good luck.
Sorry you are struggling, it does sound like pudendal issues and sensitised nerves. I have the same. I had surgery on both sides in Nantes in Aug last year. The left side is fab, the right side is much much worse, to the point that I am not sure surgery was a good move. I have many of the spin off symptoms that you have, random bits of me vibrate, tingle, and face goes numb. It is your nervous system being stuck on hypervigilence. I have found that meditation , pranic healing and Iots of distraction is my best bet. I returned to Nantes after about 5 months, they have me a steroid into nerve root, but made no difference. I am told it is early days, however I came round from anaesthetic with new horrible sensations and they have not abated. I cannot persuade them that there is a physical cause and am told pain is pain. It has been show n that meditation and mindfulness actually reduce s the size of the amygdala in your brain, and in turn will tone down the pain. It is horrible, it is isolating and I feel for you xx
Pepper1997, they have not checked for anything. At first gynae said it was scar tissue that I had revised, then when the pain did not go I saw him again, but he did not really examine me other than (sorry tmi alert) put that thing inside me and made me cough and then said everything looked good and nothing was dropping other than my bladder was slightly lower but he did not think that was my problem. He said it sounded like nerve pain and then referred me to pain clinic. Met consultant told him my symptoms, he did not examine me, he said he was not a gynae and told me he thought it was the obturator nerve, it isnt, block did nothing. I have tried on numerous occasions to say that I dont feel that anyone is trying to find the root cause but just get ignored really. And it is really difficult as they will just say the MRI was clear. And what is Nutrious movement? My personal believe is it is something to do with the rectopexy I have had but hey they will not listen to me, I am having bio feedback, well I have had the bio feedback but do not know the results, go back late April, was just given exercises to do, total waste of time. I really need to work, but just can not see a way to manage my pain. I have pregabetin but it makes me fall asleep within 20mins of taking it and then I just feel spaced out, quite a nice feeling actually but totally can not function. I also tried gabetin but that was the same but not quite as potent. So now I take tramadol if I do go to the shops or to a car boot, it helps to a point, but really is just masking it as the pain hits hard when I stop taking them, But really I do not go out, it is not worth the pain. I feel tired of fighting if you know what I mean, I just want someone to understand and help. Anyway at least the pain today is not so bad, but all I have done is lie on the settee and go back to bed and sleep for a bit. What a fun life.
I seem to have developed RSD following pelvic surgery. Your pain description sounds familiar to mine. I have had pendundal neuralgia since I was a child. What I am experiencing pain wise is not the same. Have they checked for femoral nerve damage? Caudal Inguinal? They have never been able to tell me what is wrong. i hope this is not true for you. For me gabapentin helps for the pendundal neuralgia, I am now using LDN for the RSD. I lay/sleep in an anti-gravity chair to take the pressure off my pelvis. I cannot sit. Please tell how the pendundal nerve block works, if you feel like sharing. I wish I had an answer for you. I wish they had an answer for us.
Thanks for all the replys everyone, makes you feel somewhat better to know you are not alone.
Monique, what is RSD and LDN, been sat here trying to work it out lol. Can you not sit at all? That must be awful. What are you symptoms? and is there a way for them to check all the different nerves? I get the impression my pain consultant is just going to zap one at a time until we hopefully find the one it is.
I hate taking tablets, always have and I feel so angry that all they seem to want to do is push the medication route. My son has schizophrenia and they filled him without his consent full of antispychotic medication and the result was horrendous and I think that is maybe why I am fearful of using powerful pain killers. Like I have said when I have tried them I just feel like a zombie.
I just need to move forward and not keep getting stuck in the circle of misery of wishing I had never had the operation.
Hi There Blackmonday, ive been reading your posts and I wud just like to say that I had a prolapse repair bladder and rectum back in 2012 and just like you I went through so many tests and was told it wasn't the mesh. I had a tot sling put in for mild stress incontinence at the same time as the prolapse repair but the pain I was experiencing was not post op pain even at my 6week check up I told them something was wrong this tape or mesh some people call it caused me terrible itching under the vaginal wall it was torture not to be able to soothe this as they are put in under the urethra and it was tight and totally unable to live with it .The burning aswell as itching and pain down the back of my left leg almost like sciatica constantly plus feeling pressure in my rectum and pain etc etc. This was my first ever surgery and this happened. I can understand your pain as I felt exactly the way you do .
Hi Blackmonday, I have pudendal nerve issues and get all sorts of burning and other weird sensations , occasional electric shocks and those bubbling sensations in my pelvic area. It all drives me insane because my mind is constantly occupied with whats going on 'down there'. One thing that helps me with the burning sensation is ice packs wrapped in a towel. I sit on it if the burning is down below or on the seat bones or have it pressing against my sacrum for about half an hour. I know thats a long long time and in theory i would never recommend it but the relief is to big for me to do it for any less time. The sharp burning pain no longer feels sharp and it feels pleasantly cold although quite tight. In theory it would be good to alternate hot and cold but for me the ice is best. I too have yet to persuade the medical profession to establish a proper diagnosis instead of the scattergun approach & palming me off with painkillers, codeine helps me cope with the pain better but i am close to the maximum daily dose, and gabapentin which i take reluctantly at a minimal dose as its really hard to come off from. I increased the dose of it yesterday and it took some of the pain away so I did a bit more. However, when i then tried to relax it semed that all the muscles and nerves which had been worked could not relax. So i still paid the price for having done something rather than nothing!
I had 2 nerve blocks which did little and i started a period 6 weeks ago despite being postmenopausal for 9 years! So i think my body doesn't tolerate steroid injections either. I hope you will find a sympathetic doctor or consultant who will help you. As another contributor said, its not in your head, but the nerves are constantly firing and are difficult to switch off. I sometime have cranial osteopathy which helps loosen things upbut it doesn'tlast long. I also had pelvic floor physiccal therapy to loosen up the internal muscles which were very thigh and it helped a bit although the pain then started to spread further down the lef leg. So i am unsure whether either were a long term solution . Good luck!
Can I ask how many of you manage to work. And if you do work, what type of job is it, I mean mainly sitting or standing. And if you do work how do you manage. I got a job last year, and a place at uni, this was when I was told it was scar tissue. And I started off ok, I was only working in the morning, three mornings a week. And the first couple of days I thought yes I can manage this as long as I rest in the afternoon, but after two weeks the pain was constant, I did another five weeks, but had four days off sick in that period. I had to give up uni as it was an hour away and I couldnt face the journey. So if you do work, do you take tablets, but how do you function, I am spaced out on the stronger ones.
I have been told my original prolapses were from having children and that it is the first one that causes the damage...and sometimes when I am hurting and the kids, well they are young adults now start moaning about helping me I think if only you knew what you had all done to me. And sometimes I regret having them, isnt that awful.
Hi, i haven't had children and it still happened to me and there are many mums who do not suffer like you or me so maybe its not the cause although it could be. Not sure what started mine off, heavy lifting and loads of stress and no rest tipped me over the edge. Re working, I had to stop working, a job i loved. Now I can only manage the very basic tasks during the day and I often think I ought to be able to do more and give myself a hard time for it. However when I overdo it, which isn't much by anyone elses standards i pay the price for the next few days. My threashold seems to get less and less and I am convinced my friends think I am exaggerating. By the same token I think that is more my issue than theirs because I am so fedup being in this state. I assume by your saying your children are young adults you mean they are teenagers in which case their universe centers around them. We are in a tough position as only we know how bad we feel on a daily basis with no end in sight. Sometimes i don't want to 'burden' my friends with this but it does help to get it off my chest.
Your original prolapse may well have been due to having had children, but I understand you also had operations and have since got worse. So it seems that the additional pain needs to be addressed by the medics and I really hope that they will give you better help.
By the way, I don't thinks its awful that you have regrets. I am sure you would not change or give up you children for anything and your feelings are borne out of that sense of pure frustration and impotence in face of not getting the help you need and daily suffering. I hope I don't sound presumptuous when I say this, apologies if I am.
Thanks for replying. You sound just like me, I do very little during the day just potter about and spend alot of time lying down after doing any little task in the hope that my pain stays at a managable level. For example today I went out in the back garden for about 10 minutes and pulled some weeds up, I knew I shouldnt be doing it and at the time it did not hurt. But I have had to take my pain meds as within about half an hour of coming back in it hit hard and it still hurts now.
My list of things that really make the pain worse are as follows:
Any bending/lifting
hoovering
cleaning the bath
cooking (can never work out why, maybe it is all the standing and carrying pots) I dont cook that often anymore, my son does it
driving that is as a passenger or driver.
shopping
walking
sitting for too long - I slouch when I sit lol
swimming -
having a poo lol
Some of the above might not hurt at the actual time but I will suffer later and it can take days of doing nothing but lying down to get the pain back down.
I am quite good at dusting
Yes the prolapses were from the children according to consultant, but the pain is 100% from the operation.
Can I ask what medication you take if any. Are you in the UK?
I have exactly the same triggers! Mine started from a prolapse repair without mesh though, and both of my kids were delivered by c-section! We are all so different!
Hi, yes I am in the Uk. My symptoms are very similar to yours and include sitting. Best is lying on my right side but I still get cramping sensations in lower spine, sacrum, hips, pubic area and inside my tummy as if someone was ripping on the inside of my muscles. My meds are codeine near max dose which help me to somwhat tune out of all the sensation and keep me level headed till i can't cope anymore or stress happens which overloads the system. Them gabapentin600 to 800mg day, i increased the dose to 800mg 2 days ago and I could do a bit more without immediate pain but then it would go into overdrive when I tried to relax the muscles, so thats no solution either. I also use Buscopan which i have found helpful in calming the bowel. I have never had a bowel problem until all this started and the doctor insisted i had IBS (never heard of IBS running down someones legs, buttocks or other more delicate areas, but there we go😂. But somehow again it has a calming effect overall. At night i take 2mg diazepam without which i wouldn't be able to sleep, and an antidepressant which again helps with sleep. Occasionally i try a paracetomol or iboprufen which on the whole don't help much. I find anything with lifting, bending down or bending over something and squatting, standing or walking for any longish period (short period in a normal person's life, is fhe worst afterwards. I am fine doing it and when I stop it all goes mad. My MRI showed only some wear and tear in my lower back but then again an MRI scan does not pick up nerve compression or nerve irritation or neuralgia such as the pudendal nerve and others which I don't know about. The docs put me on Tramadol and some other drugs all of which are big no-no's for me, could be drug interaction, who knows.
Have you tried an icepack? Forgot to ask, what meds are you taking, and what is working for you?
I have pregabapetin and gabapetin but refuse to take them, well I sometimes take one when i cant sleep at night, they will not prescribe sleeping tablets. My doctor gets cross when I say I wont take them and I think she does not really believe I have such pain. So at the moment I use tramadol but only occasionally. If I have to go out, sometimes my mum visits and likes to go the car boot, I will take four that day and then one the following morning and rest, it does help to an extent but the pain will be bad the following day. Tramadol gives me headaches and I itch. I refuse to go on constant pain meds because if I just potter about I am ok, the pain is quite low on the whole. The way I live my life is by doing what has to be done and then resting, sometimes I over do it and then have to rest for a couple of days and sometimes it takes a week or so of doing nothing for it to become bearable. I have no life, but guess it could be worse. This morning I walked to the shop, it is 5 mins away and now I am hurting, but sometimes I can walk to the shop and feel fine, it all does my head in, I think it hurt today because of doing some gardening yesterday and that is what I find if I do something and then do not rest enough and then do something the following day I will pay for it. It really really pisses me off. I had such plans and they have all gone to pot. I dread the future and sometimes I look at myself in the mirror and think what the hell happened. I look miserable, feel miserable and no matter how hard I try I can not see a way out. My pain consultant told me I will have this pain forever and gave me a booklet "The pain toolkit" which at the time made me furious and I could have hit the idiot that wrote it. In my opinion it is patronising and I still get mad when I think about it. Lol as you can see another bad day.
I understand where you are --I've been there --and with a flare up, it's easy to go to that dark place. My PN began with a really awful delivery of my first child and was horrible for 3 years, but I was able to have another baby by c-section which caused no problem and didn't make anything much worse. Now, I have found that refraining from even gentle yoga helps, meeting with an expert in body mechanics and physical therapy (so i can hold my body in a way that doesn't exacerbate strain on pelvic floor) and gentle swimming has helped my pain and my mood. Maybe these DPT's here could give you a referral for your area as they travel around the word teaching these principles and have helped others with PN.
also a psychotherapist that has been trained in the Chronic Pain releasing protocol of the Pain/Terror Release protocol by Robert Miller, PhD. might help too. He has traveled worldwide teaching this technique and has been shown to help. You could contact him and ask for referral in your area. (He's in California).
I absolutely understand your frustration with these self help books. They always want to tell you to meditate the pain away. First of all it takes a lifetime of intense meditation and external training for even a perfectly healthy monk to reach a level to maybe be able to relieve pain and reach some level of transcendence.
Second of all, I don't have the time a monk has to dedicate myself to reaching that level of transcendence. I have to work all day to keep from being homeless and to try to take care of bills I owe, like student loans and medical bills I've already accrued. Life isn't as simple as meditate it away. I wish it was, because now that I'm in my fortys there are little things about myself I might like to meditate for improvements on if it it worked that way. Some mental problems might be lessened or improved through some correct meditation, like anxiety. I'm not saying after years of dedicated and time exhausted meditation, one might not be able to convince the mind that they have no pain. However, you have to also remember that our condition is multi-faceted. It is not just the pain signal we are in constant battle with; it is also all of the dysfunction that follows along with it. If someone here has meditated their pain away, I am sorry and applaud you for your success with it. However, I think a lot of us would agree that it is band aid and not a real solution to our long term suffering.
I started the gabapentin on 100mg a day and could tolerate it, then upped it to 200 ind kept increasing slowly to 600, it does help but is not solution. Dont really know any way forward either.
Hi, I am sorry to hear of your suffering. From what you say it sounds like your pudendal nerve could be being irritated or trapped after the mesh was positioned. I can only advise that you go back to the surgeon and explain your symptoms which are distressing and are effecting your quality of life. You should ask your GP to do a referral for you to be seen more urgently. Make sure the surgeon investigates the cause and not just fob you off with referral to pain management. I hope this helps. Good Luck.
I dont get anywhere with the consultants The pain consultant insisted it was not the mesh! When I first saw the a bowel registrar after the operation and told him that it had not worked and everything was so much worse he said and I quote. "Your expectations were too high and we can not get you back to age 21"! I had never mentioned age 21 and yes I did have some expectations I wanted to be able to poo like normal people which I thought was the whole point of the operation. I refused to see him after that. Then when I saw the bowel surgeon who had done the operation and told her that the tissue was still protruding out my bum and that I could not go without severe straining no matter if the stool was soft, she said that maybe the tissue that was coming out and again I quote "was normal for me". The gynae man said I had scar tissue and that got revised and then when the pain did not go he just sent me to pain management. I always find it hard to talk with them, they have an air of superiority that makes me uncomfortable. And the thing is like I say if I just potter it is manageable, but of course that is not life. I asked if I could have the mesh out with the last bowel consultant I saw and he said it was a massive operation and that I could be left worse off. It is two years now and I think where I struggle is I really do not know what is wrong and who caused it, was it the gynae or the bowel surgeon. My gut feeling is it is the bowel. But I had a protogram done and the bowel is straight but I have the prolapse in that the lining is coming down. My bowel is stiff apparently but I dont know what they mean by that, they tried to do a colonoscopy but it was way way too painful and that was when I was told it was all stiff due to all the operations.
Did you know per several psychological studies done in the past, many surgeons and CEOS of big corporations they studied fit the definition of a psychopath? They lack empathy and have a god like complex. I am not saying they all have that complex, but I think we can all say we have met more than a few we would classify as lacking empathy and having a god like complex. You have been put through the ringer again and again and do they have any understanding or care to understand the suffering their hands and decisions caused you? No. Do they stick together when it comes to accusing another surgeon of screwing up? Yes. It just perpetuates the vicious cycle of the patient being hurt and treated unfairly. We need good surgeons to stand up and have the strength and decency to find those horrendous errors on the part of a botched surgery. That surgeon might not be pulling a trigger while robbing you, but he or she is destroying your life. At least there should be a reasonable and truthful discussion between surgeon and patient about the outcome of surgery. I should not be looked at as if I'm a meal ticket. Whatever happened to medical ethics? Due to insurance restrictions, regulations, and surgeon's lack of empathy or sympathy, we are shuffled around like cattle being ready to be slaughtered. All they care about is doing their cutting, getting paid, and going home. You were their operation board game and when they were done with their surgery, they put you back in your box to never pull you out again. All of us on this comment board unfortunately have scary and depressing stories about the reality of our medical world. You just bought him or her a much needed vacation with money you might not have even had to begin with for his failed and uncaring butchery. Are all surgeries in the world butcheries? No, but even the book "A Headache in the Pelvis" addresses how many failed pelvic surgeries there are out there trying to fix pelvic pain and pelvic pain caused as a result of other surgeries. Pelvic pain is a failed area of medicine when it comes to funding and physical and psychological treatment. How many more millions of us have to have their lives ruined before we have this "non - life threatening condition"(I hate when they call it that) taken serously?
Hi Black Monday, It all sounds horrific ! You are being fobbed off by every-one. I can only suggest you take this now to a higher authority and make a written complaint to the hospital. You should first send your complaint to the hospital complaints team, explaining all of the above and the response of Doctors to your problems. ( You can google this. ) State you want AN INVESTIGATION in to your operative care, and how it has effected you. Also state they need to be more helpful to find the cause of the post surgery pain and what the hospital can do to put this right. The other alternative is to complain to the Care Quality Commission if you live in the UK. You can get this information by phoning the Citizens Advice bureaux in your area. or googling it. If after this your not happy with the result complain to the ' Chief Executive of the hospital. You should not have to accept that this is how you are to live your life without these issues even being investigated. These days you have to fight for yourself as Doctors these days think the only cure is pain management. keep in touch and let us know if you need further advise. we are all here for you xx
I should say they have sort of tried, I had an MRI a year ago, but that was before they thought it was nerve damage. So not sure if they looked for the right problem. I was told by my bowel consultant that there was no fluid showing. Not sure they looked for nerve damage.
Anyway I am being proactive today I have contacted the hospital to go and view my notes. I want to find out what mesh they used and I want to see the report of my recent protogram and the MRI report from a year ago. Hey if I carry on with all this googling and reading my notes I reckon I could pass a medical exam at uni lol.
Has anyone else accessed their notes?
And thanks for all the support x
Then what is important is what you do with this information. Like I said the best way to make them sit up and take notice is a formal written complaint.
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The pain consultant insisted it was not the mesh! When I first saw the a bowel registrar after the operation and told him that it had not worked and everything was so much worse he said and I quote. "Your expectations were too high and we can not get you back to age 21"! I had never mentioned age 21 and yes I did have some expectations I wanted to be able to poo like normal people which I thought was the whole point of the operation. I refused to see him after that. Then when I saw the bowel surgeon who had done the operation and told her that the tissue was still protruding out my bum and that I could not go without severe straining no matter if the stool was soft, she said that maybe the tissue that was coming out and again I quote "was normal for me". The gynae man said I had scar tissue and that got revised and then when the pain did not go he just sent me to pain management. I always find it hard to talk with them, they have an air of superiority that makes me uncomfortable. And the thing is like I say if I just potter it is manageable, but of course that is not life. I asked if I could have the mesh out with the last bowel consultant I saw and he said it was a massive operation and that I could be left worse off. It is two years now and I think where I struggle is I really do not know what is wrong and who caused it, was it the gynae or the bowel surgeon. My gut feeling is it is the bowel. But I had a protogram done and the bowel is straight but I have the prolapse in that the lining is coming down. My bowel is stiff apparently but I dont know what they mean by that, they tried to do a colonoscopy but it was way way too painful and that was when I was told it was all stiff due to all the operations. 
Second pudendal nerve block
Pudendal nerve block injection.
Pudendal Nerve Damage
Pudendal Nerve Treatment
