Northern Ireland

Hi all, I'm 20 w/ possible endo & on diaphragm. I was first referred to gyne in Dec and despite collapsing from pain during the app was told that I should just change pill to see how it manages the pain. Had emergency referral again for gyne who said I should have a laparoscopy and am now told that the wait on the urgent list is 9-12 months. The pain has gotten so severe I can only manage to get out of bed for a few hours a day, this has severely effected my work and social life aswell as my education at uni. I have tried to do slight exercise just walking as its all I can manage but I'm always left bed bound for days after working out. My doctor isn't very helpful and keeps asking me what pain medication I would prefer then keeps giving me co-codomol which make me so constipated? I don't have any clue!! I just feel so so down as I don't really have anyone that can empathise with me or to talk to. My boss in work keeps telling me that it's a mind game and that I'm bringing the pain on by thinking about it.

Does anyone have any advice that would help?? What medication to take, specialists in NI, what routes you followed? Anything I can't deal with this pain anymore it's driving me insane!! 

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7 Replies

  • You can get stool softeners and other things like laxatives that might help with the constipation from the co-codamol. I have recently started taking magnesium citrate supplements and find those help with keeping me regular.  I'm still waiting for a lap so haven't been officially diagnosed. And your boss is dick . You are not bringing the pain on by thinking about it. what a ridiculous thing to say. 

  • Thanks Larrie! Ive been using laxatos or something with the co-codamol and don't seem to help with pain so I'll give the magnesium a go! 

  • Ignore my advice. I had to take a lot of co-codamol yesterday and have woken up severely constipated this morning for first time in ages. Typical, haha. 

  • Hi - can you describe your pain.

  • Hi Lindle! 

    Started with sharp stabbing pain constantly in lower left side roughly where ovary would be, alternative constipation/diarrhea, very heavy painful periods with heavy clotting, naseua and fatigue. This has now progressed to unbearable pain all over my bladder/uterus area going to into my thighs and calfs, "aches" in my lungs with sharp stabbing pains, can't get out of bed for more than a few hours on a bad day. Bowels still alternating worse during period

  • Hi - it does all indicate what might be extensive endo that is likely to be affecting your bowel and perhaps your bladder. If diaphragmatic endo is also suspected you must only be seen in a specialist endo centre since the treatment you need will be complex and will require great skill. I'm not sure what your GP is thinking because he should have been on to this as soon as such symptoms presented themselves. You have one endo centre in Derry and it is necessary to travel for the treatment you need, if necessary. In England we have NHS Choices but unfortunately you don't in NI and need to have evidence of suspected severe endo before being referred to a centre. But you have such evidence for any GP who cares to identify the symptoms of deep endo. Does anyone in your family have the funds for you to be seen privately at the centre in order to get into the system quickly - this would be around £200.

    Click on my name and have a look at my posts on rectovaginal endo, how to find a specialist centre and the one on the treatment pathway. x

  • Hi I'm in ni too, I had a lap in April 2015 but it only eased my symptoms for a couple of months in October I went back to my go and demanded to be referred to the centre at altnagelvin. I don't know if it was easier as I already had the endo diagnosis. I had the appointment in Feb and was told that my pain was to do with scar tissue as I had to have extensive surgery within the lap. 

    Go back to your GP and ask about a referral to the endo centre.

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