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Endometriosis UK

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jevs profile image
jevs
8 Replies

good afternoon ladies im new too the sight but was diagnosed with endo over 10 years ago and im 32 had a full hysterectomy when i was 26 but unfortunately for me it had spread to my other organs and with being on hrt its just getting worse so was hoping someone might be able to suggest some pain medication i could ask my gp for as all the ones im on dont seam to help thank you for reading and hope everyone is well x

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Londonlady9 profile image
Londonlady9

Sorry to hear you have had such a tough time of it. You must be very brave. As far as pain meds are concerned I have asthma so cannot take any anti inflammatory meds. I am therefore on codeine, the doses went up as it had less effect and I am now on the maximum 60mg 4 times a day... Though it helps the pain this is a VERY ADDICTIVE PAINKILLER and I am now stuck on it and have been for near on 6 years!

It gives you a feel good feeling, as it is an opiate but when you take it regularly missing a dose means you feel like you have terrible flu and it ends up controlling you in that you have to make sure you always have enough and have it with you when you go out. BUT if your pain is very bad and not responding to anything else maybe the benefit weighs out the evils of this? If you have strong will power to only take it when you need it, maybe it would be good for you. BUT IF YOU DON't Watch out. What are you on now if you don't mind me asking? I also find that spasmonal helps the IBS related stomach pain. It is a soft tissue muscle relaxant. Some people get constipation or nausea with codeine. The other strong pain killer is tramadol, though that can also be an issue, personally that one made me feel sick.

Speak with your Dr I suppose, though I know that's common sense. What have you tried?

I do hope you find the right thing for you soon.

jevs profile image
jevs in reply to Londonlady9

Hi thank you so much for the response at the moment I am on co codamol 4 times a day oramorph when its required which more often than not its every 4 hours declofenac I think that's how u spell it and also alverine which is an anti spasmodic and I think my Dr is fed up of the sight of me if I'm honest I'm very down with it all feel like a lost cause at the moment if that makes any sense and I have tried all sorts I cant remember alot of them but some were pre gablin gabbapentin naproxen tramadol not very good at spelling sorry but they r just a few iv been on x

Londonlady9 profile image
Londonlady9 in reply to jevs

ok well I just realised that spasmonal is alverine! I find that can help. Don't feel you are a pain, it is his or her job to treat you. You are unwell and it is not your fault. I also find it hard to not feel bad about being unwell. I also have asthma and am just out of bed from2 weeks bronchitis... will be on steroids for another few weeks! Grrr. That will make me fat and have a round face! But all we can do is seek treatment and hope for the best i suppose.

Londonlady9 profile image
Londonlady9

amytriptaline is an anti depressant that is very commonly used to help long term pain. It is taken at night and can therefore also aid sleep. If what you take now is no good, perhaps suggest this to your Dr?

jevs profile image
jevs

Iv tried a few of the anti depressants for pain but don't think I have tried that so will mention it thank you so much again for the advice and I could do with sleep so that might be an added bonus to that one do u find ur stomach bloats with endo I never had the problem until my last op in November and since that I can go from my normal size 10 to a size 18/20 within minute plus I have to stand to pee now as well the joys of being a women lol x

moomoo8 profile image
moomoo8

Hi jevs :)

Sorry to hear you are suffering, it's not fair is it.....

Just a though have you tried Acupuncture?

Take Care xx

spammie85 profile image
spammie85

Hi I have also had hysterectomy I am 28 and endo is worse than ever I was like u on co-codamol diclofenac oramorph they have put me on mst which is slow release morphine they can tell what dose u need by how much oramorph u are taking. then you just use the oramorph for breakthrough pain. I am suffering really bad at the moment and can't wait for Friday as that is when my next op is. It is op number 4 this yr as my endo has damaged my bladder and bowel but I also have to use crutches as it has affected my sciatic nerve and stuck the ligaments in my hip together so it is very painful to walk. If i was you I would go back to your gp and tell them how much oramorph you are needing and ask to go onto mst. also a referral to the pain clinic may benefit you I have been referred to them and now use a tens machine aswell it doesn't help with the pain unless it is on but the half hr or so it's on I get a bit of relief. If i can help at all with anything feel free to private message me and hope you get sorted soon.

jevs profile image
jevs

Thank you so much spammie for advice I feel terrible for moaning about myself when u have it so much worse I really hope ur doing ok and that ur op goes well please keep me updated xx

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