Ongoing treatment

There is so much in the news this last week about endometriosis diagnosis and how it needs to be speeded up, but how does everyone cope with ongoing care.

I am finding my Gp a complete waste of time as doesn't know anything about it, I went last week with bleeding from the bowel and really loose bowel movements and got told that endo doesn't cause that, only to find out that it does especially as I have had endo removed from bowel in the past.

I have basically been told there isn't anything else they can do and that there is no point in being referred to specialists to just carry on taking pain killers.

I am grateful that this painful disease is getting public notice but I don't think the on going care is as good as it should be especially with GPs

Sorry rant over ,

8 Replies

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  • I think you need to take in a copy of the new nice guidelines and then tell him is it wise yo say you don't need a referral to a speacilist. A lady posted on here the other day the new guidelines and it states if bowel endo is suspected or has been confirmed it needs to be treated in a specialist centre. I know how you feel hun I give up talking to docs about my endo until iv hopefully had my second child then I'll be asking for my specialist referral too. I'll try find the post and send you the link. 😘

  • Thanks I will give that a go

  • I can't work out how to do it ( sorry not very technical) but if you type in in the search box New NICE guidelines it will bring you up a post from two days ago regarding this 😘

  • You definitely need to be seen by a BSGE specialist if you have suspected bowel Endo. That was stated in the NHS contract even before the NICE guidelines. See page 6 for referral criteria.

    google.co.uk/url?sa=t&sourc...

    Change GPs and make a complaint if need be

    which.co.uk/consumer-rights...

  • Thank you for sharing that link, Starry! I've got my first lap scheduled in early December and I'm trying to be as prepared as I can. I've read way too many horror stories of women having a lap and nothin being found even though Endo was there... I'm so nervous that I'll go through that process and they won't find anything, but something is definitely wrong inside me.

  • Hello all,

    Here is a link to the NICE guidelines for anyone seeking reassurance and extra advice:

    nice.org.uk/guidance/ng73/c...

  • Thanks for sharing this link! It is utterly unbelievable that NICE had had to release this in order for doctors to start taking this seriously.

  • Tell me about it! I'm still at the stage of not knowing if I have endo or not, but undergoing investigations, hence I'd rather be on the loop given my luck with GP and A&E medics already.

    So far nearly 2 years wasted with medics not really knowing what my severe pelvic/abdominal pain is caused by. Been fobbed off with IBS category, with no pain relief that works. And have tried the obvious long list of remedies to no avail.

    This year when I recently had my ultrasound scan they re-confirmed I have PCOS (which I already knew although last year when scan was done the operative was unable to see the obvious condition in front of her!) plus they saw evidence of a ruptured cyst. In addition to that, I have continued to monitor my pain in a diary, as if only caused by ruptured cyst it's supposed to calm down. Truth is I still have pain maybe not every day now, but at least 4-5 days p/week. It gets really bad 2 weeks prior to my period.

    So all of you have my total empathy & sympathy vote! I am also a member of an IBS support group because until I get a "proper" and conclusive diagnosis I am not ruling anything out. Who knows, maybe it's a combination of all 3 conditions!!

    Yes, it's an arduous ongoing battle, hence why I try to focus in offering as much support to others as I can, in addition to sharing any information. I too have found a huge gap in medical support as well as no understanding whatsoever from friends & 95% of family members.

    I hope that one day (not too far away) they also discover a way of diagnosticating this horrible condition without the need for surgery.

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