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After suffering since I was about 16 years old with what we thought were UTI's (only one-two showed growth at the lab) I am finally being treated with weekly bladder instillations, having the diagnosis on my hospital file changed from recurring UTI's to IC. Its been very hard over the last 3 years with constant bladder pain/ pelvic pain and a lot of doctors visits and hospital referrals only to be told they have found no answers to my problem. I have had the flexible camera, ultra sound scans and CT scans theyve showed nothing.
My problem is that I feel like after coming back with no answers the specialist has written to my doctor saying that theres nothing more he can advise or do other than give me the instillations which I feel is not good enough. At my last consultation with him he discussed that he would like me to be seen by the renal department and also wondered if there was more to the reason I was experiencing IC. I have had a lot of infections in my toes and its taken 6 rounds of tablets to get rid of one infection.
Long story short I was passed onto renal by the urologist and they cancelled the appointment as they feel they dont need to see me. Im worried about autoimmune diseases as I just dont feel right and all my problems feel like theyre rolling into one and they are not getting better. I have good days and bad days and struggle to keep it together most days. Last year I suffered bad with red rashes sometimes looking like hives and sometimes changing to long scratches or lots of red and white itchy spots. I was treated with antihistamines and they blamed stress. It disappeared after while but hasnt come back with me being massively stressed right now which I find very strange. I also struggle with IBS like symptoms, tirdness, headaches and all the IC symptoms. I occasionally dip test my urine at home and have the doctor do it and this almost always shows white blood cells, sometimes protein and occasional micro blood.
I am looking for some advice on maybe getting help from the right specialists or anyone that has similar symptoms or story. Any help would be great as its hard to get people to understand how it is having this invisible illness. Sometimes I feel like people think I just make up how hard it is.
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