Thanks Cheryl.
I think desperation can make one very committed to finding out as much as possible about potential treatments. Being chronically unwell is also very isolating even with a great network of friends and family. This is my first real discussion with other people who travel a similar road and it's already been helpful 🙂
I have found the public system of urology here in NZ very challenging in the way they treat patients with chronic UTI, luckily though I have a lateral thinking urologist (for the last 25 years) who I see privately every few years, so we talk through potential plans, and he supports me as he can.
I always try to think ahead of what may be in front of me. Scary but necessary.