Hi there community,
Firstly its really great to find this forum - I can't tell you how grateful I am to be able to talk to people who understand what I am going through.
I was diagnosed with Endo 5 years ago after many years of bladder problems, gastro problems (which they fobbed off as IBS) and a bout of cystitis that became so chronic I had to be in bed for weeks before I was operated on. I was diagnosed with IC and Endo and had a Laparoscopy to remove the endo that was on my pelvic peritoneum and a cystoscopy that revealed no lesions on my bladder - although I was still diagnosed with IC. Personally I think that my endo is what causing my IC and my 'IBS'. Do you think its possible to have endo somewhere in your body with it affecting other organs in your body without it actually being attached to them?
My bladder has never returned to normal and every day is a battle with pain management. I was free from Gastro problems after my op until recently and I have been so ill in the last week. I was wondering if anyone else has gastro problems. I have terrible griping pains and nausea and fever - I have been to hospital twice and they say its gastroenteritis even though I am neither sick or having diarrhea. I have an appointment with a gyne and I am going to organise another Laparoscopy so hopefully this will help. I had all the tests like colonoscopy which although was excruciatingly painful came up clear. Feeling very lost and helpless.
Other than my physical problems I suffer terribly from anxiety - general anxiety and health anxiety - does anyone else suffer from this? The whole idea of going through the system of doctors who do not understand me, lose my notes and treat me like I dont knwo my own body and waiting for months for hospital appointments and indeed the actual operation itself fills me with dread :/
Sorry if I am ranting - I guess I have just reached a low point - I am tired of being sick all of the time - and nobody really understands - most of the time I suffer in silence. If anyone suffers from any of the above and has any coping mechanisms or knows of any triggers I should avoid then I would be ever so grateful.
Thanks guys xx