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 growing pain is more adhesion and nerve pain so 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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It might sound weird, but actually mild exercise is probably going to be a whole lot better for your pain than staying in bed too much. See if you can find something that works for you - swimming could be useful as the water supports your body, so you don't have the pressure on your pelvic area from standing or walking. Or else try a recumbant bicycle if you can get access to one in a local gym (you sit in a proper seat with the pedals a bit in front of you). Keeping up exercise will stop things seizing up, but the chemicals your body produces when you exercise also help as pain killers. If you are having difficulty walking, ask to see a physio and talk to them about perhaps trying crutches, as they may allow you to take a bit of pressure off your legs, but still keep moving.
Thanks for the reply, oooohhhhh how I would love to exercise!! It's really difficult at the moment though, I don't drive and some days cant even make it to the bus stop. I did buy an electric bike which I pedal when I can and that makes me feel good and gives me some freedom. I did ask to see a physio but the docs don't think I need it, crazy. Thanks for the advice though, I will try to move as much as poss.
I have often thought about an electric bike but they are very expensive but I'm doing less exercise than ever. Getting changed to go swimming drying g hair etc means it takes me a couple of days to recover. I have no life. I use to be very active. Too many drugs to drive. Catch 22. Can't walk far. Hot water bottle is my best friend
Hi, I have constant pelvic pain too. The tramadol didn't work for me so I was then prescribed matrifen patches and then bu trans patches (both are slow release patches which you keep on for days at a time, they are for people with chronic pain). The matrifen didn't work for me either so about to start the bu trans. Both of them are stronger than tramadol. I don't think the side effects are any better though I still get the tiredness and nausea. If you have nerve pain has anyone suggested an anti epileptic or anti depressant to try and numb the nerve endings? My pelvic pain is still a mystery but nerve damage has been mentioned to me so meds like gabapentin and amitriptyline to name a few are standard for nerve pain. I've never responded to them but a lot of people apparently do, my mum finds amitriptyline great for her trapped nerve pain. I'm wondering if your pain team are clueless because they usually deal with acute post op pain? Your right to find a chronic pelvic pain specialist if that's not what they are. Hope that helps a bit??
Thanks for the reply. I have tried pregablin and it really didn't suit me, I am on 10mg amitriptyline at night at the moment which I thought wasn't doing anything until I tried to stop it, so that does something. I think I now have adhesion and nerve pain and tramadol just isn't enough anymore. I will speak to the gp about patches though, they have been mentioned by a few people.Thanks.
I am so sorry to hear about your pain. I to had a total hyst and it is a B**** to het over. As mild as this is going to seem, it really helped me. Ask your doc about changing to Celebrex for a short while. Max dosage every day. Find a massage therapist who is licensed in scar tissue and cupping. Ice packs after your session... Hang in there.
My daughter has BuTrans patches which help. She sometimes needs Tramadol as a top up when she is really bad (after trying to walk generally!). She was prescribed them by her GP. She can now manage to get out of bed more and is awake for longer periods of time. She has had chronic pelvic pain and adhesions for 3 years and also has a job with people understanding how much pain she is in and how little she can physically do. It's totally debilatating. Good luck with everything. I hope this post helps.
Thanks for the reply, sorry to hear your daughter has similar problems, its horrible. I will try the GP again, although I have asked before if there is anything else to try and he said no, that what gave me the impression a pain consultant has to prescribe anything stronger and he doesn't believe the pain I am in either. Onwards and upwards as they say, please tell your daughter that she is not alone, there seem to be quite a few of us out there with problems like this.
I have a burst L1 vertebrae wedged 7 MMS into my spine, as well as L5 S1 both at the vertabra and where the sciatica passes through the pelvis I crushed both tubs 50%. The pain is between a 8 on a good day and at night most of the time a 10.
I have been put on Fentanyl 62mcg every 72 hours. It works fairly well most of the time. If I do anything that is physical after about 2 hours the pain is so intence that I also take Demerol 100 mg every 4 hrs for breakthrough pain.
I tried everything up to Tramadol, but I'm elergric to moriphine so I skipped all the oxys, percocet and hypdomoriphine & went straight to Fentanyl.
Fentanyl is considered one of the strongest drug available to people for the time being.
Sorry to hear you are in so much pain, I hadn't heard of most of those meds so just goes to show there are still options out there, thanks for showing me that. Hope today is one of the good days
Hi been there, still there, so understand hoe you must feel , please be care full what you take ,I do understand that we will take anything to get out of pain I did the dr put me on fentanyl patches 75mg one patch lasts for 3days, yes they work they are 80times stronger than morphine, one think is you become addicted, I am now a junkie and like any junkie it now dose not cure the pain.
Pleas be carefully that is why I have told you about me
You could try Ora morp that I am sure May help, I am no dr just some one who has suffered pain for 36 years dress don't understand pain , no one knows what it is like to fight it every day
Have you got a good g p. you can talk to
Google more about side effects before you decide,
I hope you can get a drug that suits your body and you have a bit better quality of life
Fentanyl is no more habit forming than any other opiate. I used Fentanyl 100 patches for years. When I could, I stopped using them just like that with no withdrawal. It may be a problem for people with the addiction gene.
Glad to hear that. Tramadol has helped me functions for a good 3 years and there were people who told me not to take it but the way I see it if it helps with quality of life it's worth it. I just worry how long patches would give me before they stop working and then what??
Hi, thanks for the reply, that's one of the things I am worried about. If I am now tolerant to tramadol and it happens when I take something stronger, then what?? But I think it's now when I will need it most, my daughter is just gone 7 and needs me to get her to school and I don't drive, when she is bigger she can do this for herself.
You are right though, no-one can understand it until they have been there.
I too have used butrans patches which for a while were doing the job , but they made me do silly things , and felt a little out of it , so my gp gave me mst tablets a form of morphine or which work for me , didn't find tramadol very helpful at all x
Thanks for the reply, I really hadn't heard of half of these meds being mentioned, I need to do some research. I have spent so long researching endo and now need to concentrate on chronic pain. It gives me hope that there are things I haven't tried yet, thanks x
I suppose everyone reacts differently to different meds and it's trial and error. I already knew this of course but I didn't know there were so many thing left to try, thanks for the info.
Sorry to hear hear your pain dr useless. You are entitled to a second opinion and should have one. I have always had good experiences (except once) with pain consultants and there are certainly many more meds you can try as well as or instead of tramodol. It took me a year for them to get it right because we have 5 different pain receptors in our bodies and a different drug for each one that is affected. That's maybe why tramadol still works well for me after 6 years, along with 6 other drugs. Please fight for what you deserve. Also try to get a good gynaecologist who does laser separation of adhesions. I had 3 ops for this and was cured - it has never been part of my pain state. He is at The Royal Free. Good Luck.
Thanks for the reply, I shall definitely be using that second opinion having read replies to my questions. I have had adhesions separated a few times now but I had a big blob of something stuck to my bowel etc which has now been removed, the pain has always been where my right ovary was after I had a twisted dermoid cyst.
I figured out I had 3 types of pain going on at once, adhesions pain where the blob was, cramping type endo pain and nerve pain as well, to me different pains need different treatment, the pain consultant just didn't get this.
I am interested to read about different pain receptors, I didn't know about this, I have spent so much time researching endo and can now switch the focus to pain management. Did you find that in a book or were you told by a consultant?
Thanks for the info, hope today is one of the better days x
Thanks for your reply. Re pain receptors one of my consultants taught me. They taught me so much. Never found a book much use but the seminal work is "The Challenge of Pain" by Melzack and Wall(Penguin 1965) which is technical but sympathetic and interesting. I do hope you are feeling better.
Try asking your GP for Fentanyl transdermal patches. I have been using them for quite a few years now and they control my Chronic pain well enough for me to be able to return to work.
I have tried numerous pain meds from my pain man team I am now taking tupentanul 250mg at 8am 200mg 8pm i have been in chronic pain four years it as been most effective the
You might as well give up on getting stronger pain medication! Three years ago I had spinal cord surgery for staph infection on my spinal cord. They fixed one thing to save me from dying, but gave me partial paralysis. With vigorous PT I walk with walker. On top I have nerve entrapment in rectal anal site that is constant burning and pain. I have constant excruciating back pain. I have done and been to everyone, including pain management. Have been on vicodin for three years and have to fight for it. I need stronger pain relief, and all I hear is I am not getting any from anyone, they do not want to give controlled substances no matter how bad my pain is. My life is ruined with all that is wrong with me and the pain that goes with it. The health care system has a lot to be desired. I am disgusted with it all and basically have given up looking for help. They think every one is a drug addict. They will not separate the people in real and legitimate pain from those who are drug addicts. I wish you better luck!!
hi i had tramadol when i first took ill i was the same these painkillers are very strong but knock you out.my doc put me on dihydrcodiene when i went to pain clinic they put me on gabs and was told to try and reduce codiene which i have i only take them on morning and night with the rest i am not pain free never will be but at least im not tired all the time ,i use crutches to get a little execise but its hard i understand good luck xxx
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