Hi, can anyone help?

[Rustydo]

Do you have any advice for managing endo pain, nothing has worked and I'm in agony

[Leahgal]

Hi there.

If you are in pain, most people start with paracetamol and neurofen. If this doesn't work then co-codamol is another option followed by tramadol or naproxen. It is best to see your GP or speak with you Endo nurse and discuss your pain, what may be causing it and the best management.

I have found that during flare ups, pain doesn't settle completely, it does help though.

Hope this helps.

[Endo_warrior01]

Hi lovely,

Please contact your GP. You shouldn’t be expected to put up with high levels of pain. What do you take for pain relief at the moment?

I started on Naproxen and Paracetamol which didn’t help. They then added in codeine which helped but made me really drowsy. I’m now on prolonged release Dihydrocodeine, Naproxen and Paraceramol. It doesn’t take the pain away completely but it does help.

Hope you get your pain better controlled. Take care 💛

[Rustydo in reply to Endo_warrior01]

I've currently got codeine and gabapentin and take them together but they dont seem to help at all I'm allergic to paracemtol and can't take ibuprofen, I'm waiting to have face to face appointment in the hospital. I have also tried amitriptilyine, dihydrocodiene and I have been on all different contraceptive but nothing is working

[Endo_warrior01 in reply to Rustydo]

How soon is your appointment ? If it’s a bit of a wait is there any way you can get in touch with the gynae secretary or bookings team to explain your struggling to manage pain? It might be that they can get you seen sooner.

I really feel for you. Endo pain seems very tricky to tackle. Hope you manage to get some help. X

[Cocoacupid]

I would recommend even if it’s quite lengthy be referred to a pain clinic dr for me they are amazing and they also know my endo specialist consultant as well. They look at you as a whole person rather than a general practitioner who just prescribes medication and also they can work with you generally practitioner as well. As I’m waiting for further surgery I have tried different medicines some are helpful and others not so helpful. Some may be helpful but I would be unable to work or drive as completely out of it. As others have. Said. Try paracetamol and ibrophen first if they really don’t help then ask gp for naproxen and then a stronger medicine like codiene but for me as I have fibromyalgia and probably autism I’m extremely sensitive or allergic to a lot of medications that could help so unfortunately for me I have gone done the more nerve supressant meds the only one that I haven’t had a reaction to is amitriptiline I have tried the pregabalin and gapepentine they take the pain away but I just get horrible reactions and can’t function properly and had some really horrible falls which took ages to heal. I think it also depends as well if there is nerve damage due to the endo. With me there is as it’s wrapped around all the nerve endings in my pelvis so I get severe groin pain restless legs pelvic pain siatic pain buttock pain feeling like every time I open bowels get a weird numb sensation pain but I also don’t empty bowels completely as I haven’t the strength to push. I bleed constantly everytime my bowels open . I’m waiting for a bowel resection where they have to cut away all the bad endo bits around my bowel than rejoin the bowel back together and they also have to unfreeze my pelvic organs at the same time I have been told the op will take about six to seven hours so it will be a hospital stay. May well need stoma bag but that honestly doesn’t bother me. As long as I have a better quality of life then that is all that bothers me. Xx

[Cocoacupid]

I kept complaining as why the consultants can leave you with severe issues as the wait for me is probably over a year. I was also told by the endo specialist nurse it will be longer than I think I said to her I don’t know how to manage with the pain as the medicine doesn’t really work it seems to take the edge of for maybe a couple hours then I’m in severe flare up. But for me as allergic or sensitive to a lot of medications those meds take away the pain but I’m violently sick or have rashes or I just can’t function throughout the day. I think also as have put up with the pain for so long I just get on with it now as I have bills to pay a house to look after my pets to look after. But like the other ladies have said we shouldn’t have to put up with pain we shouldn’t have to deal with it as we are in a day and age with medicine to help. X

[Em19861]

Hi there,

This may sound a bit left field. I have endometriosis and the pain/heaviness each month was verging on severe. I started taking Bare Biology fish oils accidentally on purpose (for general wellbeing) and since then my pain has reduced to zero/almost zero each month, periods are also generally lighter. They can take a few months to kick in but they’ve honestly been a lifesaver. Fish oils are known to reduce inflammation in the body, so perhaps this is why. I don’t take with any combination of painkillers, and can see a real difference when I’m off them, ie the pain returns!

I’m also borderline anaemic, and found when I was taking iron tablets my periods were lighter sometimes, too (read that the lack of iron can make your body produce more blood to compensate, hence heavier periods.. ) so yes. I should really have another blood test and get back on the iron pills, I generally have low energy, a bane of my life!