Anyone think they have 'intestinal endometriosis'?

3 weeks ago I had laporoscopy and endometriosis was cut away, along with a cyst removed. I still have exactly the same low abdominal pressure feeling that I did before the op. They want to refer me to bowel specialist as gynae say they've done all they can and it 'must be the bowel'. They reckon they couldnt see any endo near my bowel..........but they werent endo specialists and i only ever have bowel spasms when i'm on! Plus my bowels are working just fine and always have. Would be lovely to hear from anyone who has had similar x

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  • Last year I had terrible bother with my stomach and bowels. I had to get lots of different tests which all came back fine thankfully. The gastro doc said it was a bad case of my IBS but my gyno doc said it was my endo. I am still confused about it. It has calmed down a lot but I know myself I still have days when I feel sickly and bloated etc. I even took myself to get intolerance tests which showed that I was intolerant to certain things. I did cut them out for months but slowly reintroduced them again. Maybe I need to take them out of my diet again!

    x

  • I asked my gynae this for exactly the same reason. He is an endo specialist. He said if it was bad enough to be effecting your bowel it should be visible via laprascopy. I said surely it could be growing other side but he said would have normally come through but not impossible.

    My pressure pain eased a bit after week four but is coming back off and on with symptoms rather than constantly like before.

    I have just started the endo diet to see if that will help also as wont aggrevate my symptoms with the food types as much.

    Sorry for the brief, blunt answer but not feeling greatest, but know relief i get when someone answers xxx

  • I've had endo in my bowel and 2 ops to cut it out. I got it sorted in the end but I lost count of how many times I was told I had IBS. I only had symptoms during my period and the endo couldn't be seen on an MRI or a colonoscope outside of my period.

    if you think you have endo on/in your bowel you have to keep pestering the docs.

    GPs (and even consultants) aren't experts on your body, you know your body best. I try to write everything down before I see the docs - keep a diary of what happens, how you feel etc each day as this may help them speed up their investigation and will show them that this is a real issue and not something to be palmed off.

    My first symptoms were obvious a I had menstrual blood in my stool. Even so, it took a while to properly diagnose as it couldn't be seen at all with a colonoscope (not pleasant) when I wasn't on my period yet when I was bleeding there was a big lump which the scope couldn't even pass. I had this piece of bowel cut out but i still had problems eating and i often had a bloated/distended stomach during my period.

    This is when I kept hitting the 'IBS hurdle' with the docs as in their eyes symptoms could have been many things (even though I'd had a piece of my bowel removed 6months earlier). I knew my own body and i knew something wasn't right - some days during my period I couldn't eat as I felt full and sometimes when I did eat I vomited.

    I tried to just get on with it (as we all do) but it was gettng worse so i went back to the docs. I was sent away from my GP 3 times in 3 days only to then be admitted to A&E as my bowel was blocked and my abdomen was swollen and like a drum.

    I had another op where they cut more of my bowel away where it was blocked and it made an amazing difference.

    That said, bowel reconstruction is major surgery and I wouldn't want to go through it again.

    I've been pretty good since then (6 years) although i am still a bit sensitive to some foods and still get some bloating/distension but if I switch to liquids for a day it seems to settle. I've been looking at the endo diet recently and trying to see if some foods suit me better than others but its early days.

    I hope this helps xxx

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