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Endometriosis UK
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endo 22 years later

hi im new to site but have been on many others trying to find out wots going on with my body.i apologise now as this is going to long and maybe even boring.i had a full hysterectomy 22 years ago at 29 yrs old.endo also attacked my bladder so they removed that too apparently it was a mess.i have always felt it was still there esp right side but got on with life.i moved to spain 8 yrs ago and was yaken to hosp several times with suspected appendicitious{excuse my spelling}which I knew it wasn't.some weeks later I was rushed to hosp with horrific pain and bleeding from back passage I was diagnosed with ulcerated colon but I kept asking about endo as pain felt same I was told deffinetly not but I was constantly at doctors with pain put down to irritable bowel which I've had all my life or so it feels.i moved back to uk just over 4 years ago and straight away started having trouble with legs and arms {arms actually started in spain]I found it hard to look through clothes rails in shops my arms would get heavy and ache after finishing work I found my legs hard to work as soon as I got home put feet up they would ache and feet felt 10 times normal size but looked fine.all that time and was still suffering tummy probs.was constantly at docs with suspected urine infections which mostly came back negative.4 yrs ago in janruary gone I really felt ill could hardly stand it hurt all over to move,went to docs who sent me straight hospital and asked for surgeon to be on hand and that I was very unwell.yet again I was diagnosed with ulcerated colitis after a week in hosp and on introveinous{I know spelling lol}antibiotics I had colonoscopy which sais I never also had st scan mri scan.on follow up app I had to have ultrasound because I had leions on my liver and they never told me.adter a few scans I went for results and they put it down to ibs again.i forgot to mention the rash after hosp in spain and here a couple of weeks/maybe coupple of mnths spain the worse I came out in spots that formed circular patterns wasn't sore,itchy or irrating in any way it was just ugly and there for nearly 2 yrs.i asked the vet{I know lol}if it was ring worm it looked as if it could've been and he said no.on a visit back to uk I went walkin docs they gave me cream for fungul infection and it burned.spain did biopsy but I left b4 results and it was fading anyway.in uk same thing happened in spain it was my whole torso in uk it was my inner thighs but only a few clusters and they did biopsy it was granuloma annulure {spelling ?}.it's caused by your autoimmune attacking {don't quote me on this}collagen in this area.i still have remains of that rash approx 4 years later.the last fours yrs or I've had so many blood test scans, mri,ct,xrays been to neurologist for nerve pain{ha,ha}.rhuematogolist,dermatologist nobody could help.i came on here because my arms are in agony and feel they're constantly shaking then my upper body joins in then kidney ache and finally but not always the legs nearly forget my head,my hands are freezing{nearly numb}when they are usually overheating.two weeks ago my mouth ulcerated and had antibollocks to me antibiotics maybe to everyone else 2 days later had scan with dye within 15mins of leaving hosp my kidneys felt they were going to explode as they do now{right side 90 percent worse.do you know what I feel is a little weight has just been lifted.but I must carry on sorry.just got off phone to docs I've asked him to send me for camera on outside of bladder to look for endo and it has been known to be in others parts of body esp arms or so it seems.i did I mention the cramps in legs and stomache or the nausea .my doctor doesn't know what to do with me but in America most and britten some believe endo is autoimmune and I 100 percent agree.my daughter has got this destructive and painfull disease has had op for carpel tunnel in one hand and waiting for the other{autoimmune}also psoriasis{autoimmune}.my best friend gina had hysterectomy 3/4 yrs ago for endo.gina is at this moment in London to see if specialist surgeon can operate on her tarlovs disease which is a very rare and more horrific than endo could ever be.and guess what just been a conference about it and it is autoimmune disease.if he cant she has to start looking abroad.i am not a dr or surgeon b

t i count myself quite knowlegdable when it comes too endo because I believe I still have it.sorry I practically wrote a novel.i would like anyone's thoughts on this novel ty x


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