@renarikiw, Thank you for sharing in this discussion. That has to have been quite a painful and frightening experience for you. It sounds promising for you that your doctor has found what is causing it.
I have experienced several uti's that were relatively minor, in comparison. I never had any until after my transplant and my required immunosuppresant medications which weaken my immune system.

How long have you been suffering with these recurring infections?
And how did you get referred to an infectious disease doctor?
Rosemary

I am so sorry to read that your uti’s got so bad. I’m glad to hear you have a team of doctors involved in your care. Please write soon and update us on how you are doing. I have the same question that Rosemary has. How did you get referred to an infectious disease specialist? Thanks for posting. Hopefully we can all help each other.

@mpeters,, It is good to hear from you. Last time we talked, you were in the midst of deciding how to manage until your April appointment. Have you learned anything that has been helpful? How are you doing?
Rosemary

No new uti’s, thankfully, but I do often feel some heat in that area so perhaps it is still there. Thanks for asking and I will post again after my visit with the specialist at Mayo on April 25.

Have you found the answers to you issue