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Hi everyone was I pleased to find this page as I’m at my wits end iv even starting goin to church ( which is something iv never done before but I do believe in my angels) iv suffered badly with EDS and everything that goes with it and as a child with unkind cruel parents I had spent over time some years ( if u put them all together) in hospital as I had bad constipation where I didn’t go for months and when was given food at home my mother wud love to put two inches of neat horses bran over every meal which made no diffence I went on as I got older to have two brutal anal dialations which were horrific for me as 1st month was at only 18 ! Anyway I went on to have 3 children nearly dying having last two due to EDS! So now I’m in chronic pain with every joint dislocating but iv had to wear high doses of morphine patches for the pain my children wud put a flannel in my mouth go up to their rooms put their music up loud while I wud scream on the toilet even takin every laxative out there! But the worst bit I’m now not eaten since March I felt hungry so tried yet I can possibly get it down my throat before this happened I was rushed to hospital 3 times with the most worst pain in my tummy and lower but ever time they put it down to my EDS I don’t like to bother my gps a lot but they always say I should but I did to a lovely doctor I told him I feel hungry yet iv only got to put enough for a newborn baby then I feel sick! I’m being sick up to five times daily he said I was suffering from badly malnutrition put me on some gloopy drink and anti sickness pills he looked at notes and said u need to c gastro surgeon and quick I couldn’t understand how I was still 11 stone after not eatin for so long but now iv lost half a stone in a week and can feel I’m shrinking iv tried to take my own life as I feel so alone with this and now call my bathroom my bedroom as I sleep more on the floor in there I’m scared when I see surgeon nxt month he’s goin to c me a normal weight as iv not seen him before I only have to put a pen in my moth while I’m writing and I heave I now can’t tolerate fluids I feel if this surgeon says it’s down to EDS I might go through with takin my life as the pai and cramps r unbearable thank u for havin time to read my story as I feel so alone xx

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