Have been gone for two weeks, so am late entering the thread. But I want to share my experience with you (at the risk of boring the old-timers) since there are some similarities. I had "UTI's" for a period of about two years. Self treated with antibiotics....they would go away, then come back. At my gyn exam last August, the nurse practitioner told me that if you have two or more UTI's in a year you head to a urologist. I did. Was assymptomatic at the time of my first visit; he gave me an antibiotic prescription and told me to take them ONLY after taking a specimen to be delivered to his office. I did, and found that I did NOT have a UTI.
The urologist had me in his office that afternoon for cytoscopy. He saw an "ulcer" which he said needed a biopsy. The first TURB showed papillary transitional cell carcinoma, and large areas of "inflammed" tissue, with no real diagnosis. Back into the OR in two weeks for a second TURB and the result of MULTIPLE samples was CIS. The urologist says that CIS could have caused all the UTI symptoms.
I finished six weeks of BCG in May with minimal discomfort and ALL MY HORRIBLE UTI SYMPTOMS HAVE DISAPPEARED!! Feel better physically than I have in over a year (and mentally, thanks to this list.) Will have maintenance BCG starting next month.
What I am trying to share with you, with this long monologue, is that the inflammed areas seen in your case sort of bother me, and I would like to see you have them thoroughly biopsied. It is very possible that you do NOT have a UTI. I agree with others that you need to be VERY proactive and politely demanding...it is YOUR health and YOUR life.
Best of luck to you, and please keep us informed!! We care!!
Sara Anne