These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
by Steph
(Leeds)
I started my periods when I was 11, I don't remember them being painful (but how do you know what is a normal period?) As a teenager I've always been light-headed & would feel like passing out, I would be constipated most of the time too.
When I was 16 I went on the pill because I wanted lighter periods and to be able to have a life.
For 5 years I kept on it then I had a year break I think this is when my symptoms came back with vengeance!!
I would alternate with diarrhoea up to 6 times a day or constipation for weeks on end! I would be sick most of the time & I felt nausea everyday
The problem was I were going out and drinking alcohol so I just put it down to that!
Then last year I was rushed to hospital with the worst lower right pain it just came from nowhere!!
A year later I can't get out of bed, I have rectal bleeding, chronic constipation/diarrohea, mucous in faeces, fatigue, bladder infections, extremely bad back pains that go down my legs, nausea & sickness, painful mouth ulcers but the worst pain is the lower right chronic abdominal pain I constantly have the hot water bottle attached to me and now have scarring.
I just want to tell you I have been going round in circles with the nhs! It makes me angry now that my parents have had to pay for a endometriosis specialist because the NHS doctors smirked & didn't believe how bad my pains were!!! I'm 23 & they presume everyone in they're 20's have IBS!!
By the way I've had 3 ultra sound scans which all came back clear and let me tell you, scans DO NOT show endometriosis unless you have a cyst which I didn't. I had a colonoscopy which came back clear also.
I just had a diagnostic laparoscopy Friday (privately the NHS won't give me one!) and it showed I had severe endometriosis & it is also very deep into my back. I was so relieved I had a diagnosis!
Nobody knows the pain you are going through only you! Please please keep strong & keep pushing to get answers. Only you know you're body I have even doubted myself thinking is it ibs. I am now fighting back I want to help so many of you it has put my life on hold I haven't worked for a year, couldnt go out & socialise it is a very lonely depressing disease but the hardest fight is getting a laprascopy.
Good luck ladies xxxx