When should i go back to the Drs?/ Is it back?


I was diagnosed with Endo 10 years ago (20 years old), it was around my bowl, kidneys, intestines as well as around my tubes. It took me a little over year to get told i had endo. This was after a spell in hospital, where i was made to think i was making it all up.

I had a laparoscopy where they got rid of some of the lesions but I was still in pain and was told they never got it all (for what ever reason, i was high on Morphine).

I have had numerous spells over the last 10 years as others say, you get used to it, but none as bad as a few days ago. It coincided with day two of my period. In between pain i slept with the help of pain pills, every time i stood up i felt sick and just felt horrible, my period has now ended (only 2 1/2 days on) the pain has eased and i'm returning back to normal. I can't use any contraception pills they play havoc with my head!! So pretty much deal with it. . With occasional help of pain pills and laxatives (sorry if TMI) I guess i'm asking should I go back to my doctor, I've moved from where I was originally diagnosed, my current doctors haven't been as helpful as my specialist back in my home town.

I could do with all the help right now, it came as a shock to be practically bed ridden for two days.

2 Replies

  • As you are already diagnosed - your next step is to ask your GP to refer you to an accredited endo centre to see a specialist endo surgeon with a view to having a new op to remove all existing endo and this time not leave any behind. Chances are with you not having stopped your periods that things are considerably worse now after 10 years so you do need the services of an endo speciaist surgical team on your case.

    Take a look at the BSGE website and locate your nearest accredited endo centre OR provisional endo centre.

    The provisional ones will be getting full accreditation in January 2015 which is not that far off now.

    Find your most conveninent one, check it is an NHS hospital as a couple are private only, and then take the details to your GP and ask him/her to refer you to your chosen endo centre.

    bsge.org.uk/ec-BSGE-accredi... is the fully accredited ones



    At the endo centre, you'll be seen by an endo nurse who will take a history of your endo symptoms and treatments so far and then you see the consultant surgeons and discuss surgery to see what's going on inside.

    Your need for laxtives is important and you should mention any issues with bowel problems as that can be indicative of rectovaginal endo and may require an endo specialist colorectal surgeon to be present at your surgery too. At this point in time though, it is important to get that referral sorted out asap, waiting lists are long and the quicker you can get this done the sooner you will get to see the endo team and get the treatment you are undoubtedly going to now need again.

    It isn't a matter of endo being back - if they did not remove it entirely in the 1st op - it was going to remain there and remain active for the 10 years. Very best of luck, hope the appointment comes through quickly for you.

  • Thank you ever so much for your speedy response, I will book in with my GP asap. Will keep you posted. At least i'm not going insane or feeling like a hypochondriac

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