I have stage 4 Endo which has caused irreversible damage to my insides (largely due to it taking 15 years to diagnose)
I’ve had to really battle and even get my MP involved to be allowed some stronger pain relief for flare ups.
I have tramadol (for mild flares) and codeine and naproxen for daily pain and now have Oxynorm 10mg for big flare ups only.
This really has helped for first time in my life.
My old GP practice didn’t think me passing out, shaking and vomiting on a regular basis was bad enough to have anything stronger. Thankfully I recently changed to a massively better GP and also have a new lovely pain consultant have between them issued the Tramadol and Oxynorm.
My worry now is my most recent massive flare up has been ongoing for almost two weeks now and it’s scaring me how much of the extra strong pain relief I’ve had to take. I feel so guilty and anxious after having to take it.
Has anyone else had to take this strength pain relief for such long duration?
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Lily1986
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Sorry you’re having a rough time. Are you getting constipation with the new drugs? That will cause pain in itself if you are. There is a specific med for constipation with opiates, just started using it. I’ve used Oramorph for a few years now, I try not to take too often but it depends on how much I move, average once a day. I’ve also tried morphine capsules, Tramadol in the past and prescribed cannabis. I still go back to Oramorph and Diclofenac suppositories, really good anti inflammatory.
thank you for your message 😊 I take Laxido daily for constipation side of things which works well.
It often feels like my pain is aggravated after I’ve been to toilet. Like I will go fine although it hurts just before but then afterwards it leaves me in pain for rest of day.
Diclofenac suppositories are brilliant, I forgot to mention I usually do rely on these but the last few months they’ve been out of stock everywhere so had to revert back to Naproxen which isn’t quite as effective.
Have you had supply issues too?
I’m a bit concerned the Oxynorm is effecting my cycle, it’s listed as a ‘rare side effect’ but since I’ve started taking it more often my periods are all over the place. Although it does help massively with extreme pain, it worries me how often I’ve had to take it.
Think I’d prefer to have the Oramorph on standby for huge flare ups, I’ve had it before in hospital.
Thank you again for your message it reassure me I’m not the only one having to take high strength pain relief. I think the stigma around taking opioids is what causes my anxiety and guilt, but I guess they’re there for a reason and that’s we have them.
So many things to consider with this horrible disease. ❤️
Unfortunately that’s fairly typical as well with going to loo.
I’ve got a bit of stock of Diclofenac at the moment, I try not to use them too often in case of ulcers. I think the suppositories can still cause ulcers. I’m pretty sure GP said not to use everyday.
we are put in an incredible situation that is hard to deal with. Don’t feel bad about having to take painkillers. When pain is genuine it’s unlikely you’ll become addicted, unfortunately there is that connection, which isn’t fair. I know nothing ultimately works really well so I try not to take Oramorph or Diclofenac unless I really have to, but then I can’t do much. We can’t win 🤦♀️. Try to give yourself days when you don’t take them, it might mean you have to rest more. I pretty much have heat pad on constantly, that helps.
Thank you, that’s interesting regarding ulcer risk as I was never warned about that but I remember one night I was getting horrendous intestinal pain (it often happens at night too). I stupidly put one of the suppositories in, which was a huge mistake as it made my intestines contract and made pain absolutely beyond excruciating. Never again did I use them to treat that element of pain.
That’s a good idea regarding resting more to avoid having to take extra strength as I don’t want to keep taking them as soon as I’m at a level which isn’t responding to daily pain relief. Hopefully this flare up is nearing the end, think I’ve said that nearly every day for past week lol. I worry too they’ll stop working if I have to take them too often.
Seem to spend a lot of time worrying and overthinking when laid up in bed so much
Best wishes to you, thanks again for your help and advice it is much appreciated. ❤️
I am taking Oramorph for awful flare ups and I feel just the same but I do feel that health care workers make you feel guilty but they don't realise the extent of the pain do they. I had to fight and fight for Oramorph. They reluctantly gave it me but like you I try to not have it unless I'm desperate but it can be days of taking it before you can cope without it. X
Thank you for replying that’s reassuring to know. I’m sorry you had to battle for it too, they’ve obviously no idea how excruciatingly painful it can be. I had to point out at one point that my dog had better pain relief than I did!
Im hoping today I won’t need it and can have a break until the next flare up. You’re right the medical professionals certainly do make us feel guilty for having to take it. Im just having to remind myself of all those years I had to struggle without and now I refuse to suffer like that again, it helps ease the guilt somewhat.
I've not taken the Oxynorm, but I spent many years in agony, shaking, vomiting and feeling like I was passing out, flaked out on the floor, etc. My GP wouldnt give me anything stronger than tramadol or diclofenac, so i went through many unspeakably painful years. Sounds like you've managed to get some really good help, although i understand your concern with the Oxynorm as it is a very powerful pain relief med. The one thing I think worth mentioning is a tens machine. They work like many medicines in that they are most useful if you put it on at the first twinge of pain before the pain ramps up, but for me this did cut down the amount of time in agony. It maybe worth a go if you haven't already tried it? The other thing I wonder is if it's worth looking into ways of protecting your stomach lining. It may be a good idea to see a nutritionist to check what kind of supplement would offer you some protection.
I hope this current flare up calms down really soon and that you are able to rest and recover.
I’m so sorry you’ve had to suffer like that too, it’s awful and inhumane.
It’s awful the battle we have to go through to just get some relief. My old GP was terrible, they just all of a sudden stopped prescribing tramadol so I had years of nothing stronger than codeine which didn’t touch the pain during flare ups. I waited over a year for pain management and then the GP refused to prescribe the medication the consultant had recommended.
I just wish I’d changed GP surgeries sooner as my new one has restored my faith in them helping when needed.
I take omeprazole for stomach protection but do still worry so I will look into nutritionists.
TENS machine is a good idea, I did have one but I had it on so long once I ended up with little burn marks on my skin. I will look for a better one. Which type do you use?
I think/ hope I will be able to have a break from taking Oxynorm from today as woken up with less pain (fingers crossed it lasts).
Thank you for your message and advice I appreciate it.
I have the Ova tens. It's a pink machine, which is a little too bright, but it is helpful. I think they have a newer version out now, which has an added heat feature, which would be no good for me as heat makes things worse. But they are small machines so pretty discreet.
So good to hear you are in less pain today. Hope you can relax and replenish a bit. And hope the sun is shining where you are too.
My concern is not the pain relievers they are giving you, but the next steps for removing and attempting to stop the growth of endometriosis. If not addressed, endometriosis can lead to much damage to internal organs. My daughter has been going through this for 3+ years. She had to have her sigmoid colon removed along with her fallopian tubes and one ovary. She has had an ostomy and currently has an ileostomy. She was diagnosed with stage 4 endometriosis. She is 37 years old. It took so long for a diagnosis although she had symptoms and pain for many years before getting someone to listen to her. Her symptoms were very similar to what you have shared. Good luck moving forward. I hope everything works out for you.
Aw thank you for your message. So sorry your daughter has had such a terrible time with this awful disease.
That’s my next surgery, pelvic clearance and a stoma but even then it’s still likely to return and still left with the permanent bladder, nerve and ligament and scar damage.
I’m 37 too, it took 15 years to diagnose and was only taken seriously when i couldn’t get pregnant. Despite hundreds of trips to doctors and hospitals. It’s awful.
How’s your daughter getting on with the ileostomy? Has it helped at all with bowel symptoms?
It’s quite a scary prospect but I’ve got to the point now where if it took away the bowel symptoms it would hopefully give me more energy to deal with the rest of the symptoms (hope that makes sense).
I already can only digest a low fibre/ residue diet which will cause problems in future if I follow that diet for too long.
I’m sorry you’re suffering, this is my worry with having the pelvic clear out. If they don’t deal with the bowel at same time it’s definitely going to continue to cause issues as already it causes more pain and problems than my uterus. The bowel is always the first place for the disease to return within months of excision each time.
I hope the kind lady who shared her daughters experience will be in touch soon. Best wishes to you ❤️
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