Hi everyone, I am recovering from a total hyst and excision surgery at the moment. I have been in chronic pain for nearly 3 years now and have been taking tramadol for longer than that. I have scarring inside that joins my ureter, bowel etc together that is affecting the nerve going down my leg and I have horrible groin pain. I was hoping that it might improve after the op as a big lump was removed but I can still feel the pain. I am finding that tramadol doesn't work as well as it used to so I also take strong co-codamol.
I was referred to pain management a while ago but they don't seem to have a clue what I am talking about. My pain certainly isn't managed and my mobility is also affected, I can't walk far at all. I am going to wait 4 weeks or so and if there is no improvement ask to be referred to a chronic pelvic pain specialist.
I think I need stronger meds to control the pain as I am currently spending most of my life in bed, but they haven't offered me anything. They don't seem to believe that I can't walk very far, I have no life at all.
Has anyone else been prescribed stronger meds? Was it through a pain specialist? Do you take them everyday (the groin pain is more adhesion and is constant). How do they make you feel? I am starting to think that a lower dose of something stronger would be better for my body than taking max dose tramadol with extra on top. I feel sleepy all the time because of the meds and wonder if stronger meds are worse than this. Any advise please????? Xxxxx
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Eggcustard
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Have you been offered a 'nerve pain killer' eg gabapentine? I was offered this post hysterectomy when I had cyclical pain that oxynorm didn't touch. Long story short I had an ovarian remnant which when they finally removed it caused damaged to my bowel so I ended up with a colostomy. I didn't take the gabapentine till nerve pain after this operation stopped me standing at all and so meant I couldn't get out of bed. I started the gabapentine then and things gradually improved pain wise, now it could be coincidental as I'm now menopausal (hooray only 18 months after what was supposed to be a total abdominal hysterectomy and BSO) but I think the gabapentine has helped reduce the pain of angry/stressed nerves and adhesions - by all accounts I'm a mess of them!
I think there are a group of painkillers like this gabapentine that they try if the more traditional painkillers aren't working. There can be significant side effects to them but then taking loads of tramadol or oxynorm isn't side effect free either. The gabapentine was eventually organised by the pain team when they came to see me in hospital but it had also been mentioned by the gynae team so not sure you'd need a pain team to prescribe. In fact GP was happy to increase dose slightly a couple of months ago to see if that reduced the symptoms further.
Hope this helps and you find something to help manage the pain soon xxx
Thanks for the reply, I have tried pregablin and they didnt suit me, I felt horrible on them so I take 10mg amitripyline at night. I thought it wasn't doing much until I tried to stop them once and was in agony. Thanks for the idea though xx
Hi. As Bp74 suggested, first off has anyone suggested or mentioned any of the meds that are used for neuropathic pain ie nerve pain? I tried gapentin and wasnt for me, also carbamazapine, amitriptyline too but am now on pregabalin (lyrica) and that helps with the nerve pain definately. I know when I haven't taken it, put it like that. The pregabalin was initially prescribed by a pain management consultant (although interestingly, several yrs before my lap and official diagnosis with endo and related). Due to the severe amount of pain I am in daily, they also have me on two types of morphine. Slow release capsules I take a couple times a day, plus then 'instant' morphine tabs I take 4x a day and also if needed on top. This wasnt prescribed by a pain specialist but instead my Gp. Trouble is even with these meds I still am in a lot of severe pain most days and eithet bed bound or requiring using a walking stick to get about or a mobility scooter on bad days. I have bn referred to a pelvic pain and endometriosis specialist now (who I see this coming Wed for first time) as although I need another op again, I just cant continue with all the pain.
I empthise with your experience of not being heard properly. It took me a long time for anyone to take me seriously, and maybe it was a combo of diagnosis, A&e admissions to hospital and refusing to live as I was, but they evidently listened eventually. Only prob with morphine etx is when I have severe pain eithetlr from endo or related, or something different, apart from giving me oromorph and iv morphine, there is little more they can do. This can suck!
Whichever pain meds or treatment they end up trying you on next (obvs remember it can be a trial and error game as everyone responds differently) DONT give up. Keep pestering. Make yourself heard. I was on tramadol for many yrs too and I believe not only do our bodies need different things at different times but that sometimes we ladies have to foghorn our way to get somebody to hear us. I am sorry you are in such pain right now and I hope you manage to get heard and helped x
Thanks for the reply, I'm sorry to hear you are in so much pain. Its very frustrating not feeling heard, so much so that I spent most of my last pain management appointment in tears (I usually hold it together OK but just couldn't take any more of not being listened to) of course this gave him the ideal excuse to say I am depressed (walked straight into that one!).
Anyhow, onwards and upwards, like you say don't give up. I had asked the GP if there were any stronger meds I could try and he said no so I assumed the pain clinic had to prescribe anything stronger. Although I am reluctant to take anything stronger it is now that I need it (I have a 7 year old to get to school). The pain clinic haven't offered me anything else but I think that's because they don't really understand the problem, I will have to find somewhere else to go for pain management I think.It's always us having to find where to go and what to do next with no guidance, that's frustrating too.
I do take amitriptyline and I have tried pregablin in the past and it really didn't suit me, the amitriptyline does help. I think I have nerve pain and adhesion pain which need two different treatments.
Thanks for the support though and I hope you are having a better day today, good luck at the specialist clinic, which one are you going to? Please let me know how you get on, I hope they have some ideas for you xx
Dear Egg custard, I can't believe you've been in this much pain for so long.. that's awful! The girls above seem to know what they're talking about in terms of nerve pain, but all I can say is that when tramadol stopped hitting the spot, my doctor gave me a prescription for oromorph with the instructions to 'take it when you need it'. I'm a school teacher and he thought I'd be able to work on that. Actually it made me very sleepy.. more so than the tramadol. Fortunately the tramadol worked enough and I was able to return to work but clearly tramadol isn't enough for you. That must be scary but try not to worry. Have you asked any of your hystersisters (I saw a website of this name yesterday online) if they've found anything that works after this very big operation? Anyone else who's suffered from nerve damage? Also after three years and you're still in such pain maybe you should ask for an ultrasound or similar so they can see if anything is amiss in the way they operated on you and they need to sort something out internally. If your body is in pain it is telling you something is wrong so I agree with ds above - keep making noise til you're heard. I worry that pain management seems to be the only answer. Perhaps it's something else which is why you got quizzical looks by the pain management folk. Honestly if you don't fit their box they can't cope can they?!!
My thoughts as I read your post though is maybe try some other alternative therapies too? I've not tried acupuncture but some say that helps. And I have a friend who is a chiropractor and says it is a gentle but effective therapy against pain. Try not to lose hope though ec. Much love, xx
Thanks for the reply, I can't believe it's been this long either! I had been managing until thing gradually got worse, the worst of it has been the last 5 months. Although I am recovering from a hysterectomy at the moment the chronic pain has been around for longer than that so its not from the op.
I now know that my gp can prescribe something stronger so will see what he thinks, I can't spend the rest of my life in bed! My worry is what happens when that doesn't work well anymore, I suppose you swap from one to another. Hope you are having a good day xx
I find the morphine helps me. Sadly tramadol wasnt enough. So a slow release morphine and then a tablet version of oramorph to take when needed doesnt take the pain away sadly but is more bearable at least. With pregabalin, 2 types of morphine and an anti dep and STIlL in lots of pain, I understand the frustration and tears. Who wouldnt feel sad in this kinda situation huh? I hope you manage to get the help you need. All of you lovely ladies x
Thanks, you too, I like the sign in name by the way "DeterminedSurvivor" that describes things quite well. The specialist clinics are good so I hope it goes well for you xx
I understand your anguish my pain wasn't going either I was placed on fentanyl patch which worked for me but when my endo become abit silent I decided to go on OxyContin which is long acting painkiller which you take 2ice a day which last for 12 hours. Talk to your doctor and the pain management team. Good luck sister I pray we all get well soon
Thanks for the reply, other people seems to have been offered all sorts of things that I havent been offered yet, I will speak to my GP, thanks again xx
Hi Egg custard, so sorry to hear of your pain, I have been in constant pain for over 4yrs with Endo, bleeding everyday as past 3yrs had to live on Iron tablets painkillers & nerve pain tablets along with pain gel. I had cyst's on my ovary had Surgery but it came back in 2wks of having it Drained, I was put on Zoladex injections every month for 6mths then a break of a few mths & back on the injection to no avail, they put in the Merina coil, but I was in & out of Hospital 1wk every mth since oct last yr, the Pain is unbelievable no except us who suffer for these problems do not understand, in a way I think my GP didn't believe I was in as much pain. My only option was a total Hysterectomy everything had to go as the Endo was stuck to my Bowel & the Consultant after I had the surgery on the 14th of January 2014 told me that when her & the bowel specialist opened me up my insides were like a bowl of concrete it was spread that much even if she had of wanted to save my ovaries she couldn't. Usually that surgery last an hour I was in 5hrs and had 38 staples, 4 above my belly button right down. So it's 11wks since the OP, I have not been put on HRT yet, but I still get the pain after going through all that, I don't see the Consultant again till the 2nd of May but I have question wrote down to ask her, in my Heart I thought this would solve my pain as the decision to do the OP was hard as I am 38 & have No Children, but I just couldn't stick the Pain much longer, so I went for it & just had to come to terms that I would never give birth to my own Child, but to still have pain is very depressing & still have to take all the painkillers & nerve tablets is so upsetting. I wish you all the Luck in the world & know you are not Alone.... Big Hugs & best wishes.. B.. Xx
It's heartbreaking when you get your hopes up that something is going to work and then it doesn't, so much so that I said I wouldn't do it this time but couldn't help it. I already know that the op hasn't solved the nerve pain problem even though everyone keeps saying give it time. I was warned though that a hyst would not work for all of the pain but the cramping pain hasn't come up yet so that's good.
I don't think anyone can know what the pain is like unless they have been there, my pain consultant certainly didn't believe me when I said it's like labour pain.
How would you describe your pain? Did the zoladex do anything for the pain? I was on prostap for years and it was a life saver for me but towards the end it stopped working and the pain was awful, because of this I was warned that the op might not do anything at all (less than 50/50 chance) but like you I felt I had no choice but to try. Now everyone seems to think I will be running down the road by next week when I couldn't even walk down the road before the op! I felt crazy explaining to people that I was going to have a major op that probably wouldn't work but I had no other option.
I broke my pain down into cramping endo type pain, nerve pain and also adhesion pain all of which I believe need different treatments, the pain consultant just didn't get this at all.
It sounds like you had a good surgeon, was the surgery at an endo centre? All centres are supposed to have pain management consultants within the centre, that is where I am going to be asked to be referred to for my pain management if necessary, they must have more experience of this kind of thing.
I hope you are having a better day today and don't give up. Better pain management is something that we must fight for in the same way we have to fight for diagnosis etc.
Where are you in the country? Do you have a support group to go to? Please remember you are not alone in this, hang on in there, there will be better days to come xx
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