Endometriosis and eating disorders

Chloe was diagnosed with endometriosis by laparoscopy but the surgeon did not remove all the implants and she also has been dealing with eating disorders

This is Chloe’s story …..

I was diagnosed with stage 1-2 endometriosis last July. I am 21 years old. I had struggled with extreme pain and heavy bleeding since my periods started age 10. I was convinced I was anaemic from the blood loss but every test came back negative.


I would get extreme fatigue for no reason that just came out of nowhere and I would have to take time off school and lie in bed, which I now attribute to the endometriosis.


Age 17 I was diagnosed with IBS, which was maybe wrong, I would get bad stomach cramps and spend my free time in bed with a hot water bottle while everyone else was out living a normal life. My symptoms came and went - but with hindsight because I lost my periods for 2 years due to anorexia after my IBS diagnosis, so the lowered estrogen may have hidden my symptoms for a while.


I never saw a doctor about my periods because anyone I talked to, including my family, told me I was just unlucky and like many people I had never heard of endometriosis.


It was then in January, after a year where I had started to suffer from increasing ill health - unexplained fatigue, infections, flu etc- that I started noticing what felt like period cramps for about four to five days in between my periods. This gradually worsened and after about 3 months I sought help.


It took several more visits to my GP and it was not until I had passed out from the agony (after a second-year university exam typically!) that got me a pelvic ultrasound but only that I had blood in my urine, because this was technically a cancer symptom.


The scan showed an endometriosis cyst which got me to laparoscopy. I woke from the surgery to be told the cyst had gone and was just a regular 'blood cyst’, probably, but that I did have endometriosis and that my surgeon had left it there!!!! I still don't understand why. I thought my problems would be over, or could be after that operation, but since then my pain has worsened.


I have tried two forms of birth control, both of which I swear have made it worse. And I am now taking nothing, feeling powerless, abandoned and angry that no one seems to have heard about or remotely understands a disease.


My friends try to be understanding but they cannot understand, and then there are the people who think I am making a fuss about nothing or a 'freak', who don’t recognise that it is harder and harder to do well at my degree, to be in a relationship, to keep my old social life when you are in distress every day.


I am terrified of the menopause treatment, which is what my GP is now suggesting. I don’t see how something so unnatural cannot cause more damage, but when I get depressed (which is often) about the endometriosis I do not have the will power with exercise, eating regime etc.


I worry if it would be good for me to cut out whole food groups when I have suffered from eating disorders for 7 years, and only recently 'recovered’ (I was bulimic before then anorexia). But other days I feel I would do anything to no longer be suffering.


I am still finding it very hard to come to terms with diagnosis of endometriosis but have found this website really helpful, and am now taking some of the supplements recommended and trying to live a healthier life style while I decide what treatment to try. I cannot conceive of some of the stories and pain some of you have had on this horrible journey, and I hope I can have your strength. 

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