I am 100% convinced testing is the issue. Once misdiagnosed and not given treatment, the problem develops into much more than a normal acute UTI that can be resolved with a short course of antibiotics. If you can manage to talk to a microbiologist in a lab (almost impossible), they don't want to hear about Wolfe and Braubaker's findings of a urinary microbiota. How long can they ignore the science and why do they want to?
Sarah321, the VAST majority of people I interact with who have this condition started out with a UTI or a UTI history (me included).
Do some online research and read up on papers from the Loyola Urinary Research Collaborative, Scott Hultgren from WUSTL, James Malone-Lee from UCL. It's not easy when you don't have a science brain like me, but persist and you'll find things make sense for the first time since this kicked off (with that UTI!).