Endometriosis UK
34,160 members30,537 posts

Looking for advise and someone who understands

Hi I'm new to this, I have suffered with pain since I was 13, I had a cyst removed when I was 17 but still had chronic pains I've been in and out of hospital until finally last year they found I have endometriosis, I'm still suffering and in constant pain. Been in hospital and on stupid tiredsome pain relief. My work is suffering a little they think I'm over doing it and say I couldn't be in the pain I'm in. I wish they knew :-( they don't undertsand and know they want information from my doctors not to check up on me they say but to try and help me.

Please can anyone help me I'm struggling to find ways to help me with this condition


1 Reply

Hi Bec, sorry to hear about your endo. I have it too and am also struggling a bit at the moment. The most important thing is that you empower yourself and read as much as you can on here about new treatments etc. Are you 24? You need to think a bit about your future ( I know it feels scary) and at least you have a diagnosis so you can start to plan.

You need to think about what your priorities are and what is more important right now, getting pain free and protecting yourself probably. You might also want to consider fertility if you know if you would like a family in the future.

You need a SPECIALIST - not just a gynae, someone who is an endo specialist, who is an excellent practitioner. You need treatment - this depends on how serious your endo is. You may need hormones - e.g visanne, lupron etc to give you a painbreak. (Some people tric-cycle the pill if the endo is not too far advanced.) You may need a surgery.

I won't lie to you this condition is utter crap. But if you deal with it by getting informed it is bearable.

I hope things improve for you. xx


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