Posted 7/16/2020 6:10 PM (GMT -6)
I too have been dealing with gross hematuria. Starting March 30 about half of my voidings had pink or red drops in them. April 2 my Uro did a cystoscopy and reported white scar tissue on bladder neck and minimal radiation changes to bladder, she also found a UTI, but I did self-cath once a day. Continued to see colored red and small dry clots for next 6 weeks.
May 14 started with a red stream and next 5 days more blood in urine and dry and fresh clots, always able to empty bladder, blood and urine tests showed low platelets -130.000 and a 2nd UTI. CT Urogram done May 22, final results not posted until June 9, showed no kidney stones, no bladder cancer, but no source of bleeding.
June 4 started great, did 2 small jobs on the farm, walked 1/2 mile to get the mail, found letter from Sanford says my Uro was leaving and all appointments after June 19 are cancelled. She was the one who found my cancer and guided me through all related problems. Very next voiding was a bright red stream and after that nothing but a few drips and drops so on my way to ER in the system where my Uro works. 5 1/2 hours of hardly any voiding, Switchboard did not inform Uro and took 2 hours till ER Dr informed her I was in ER, so no answers that day except for a 3rd UTI. Tried everything to get an appointment or phone call from Uro - no luck, her nurse did call every day to check on me but that is as far as I got.
June 11 I got an appointment with CNP in Urology at the competing hospital to set up as new patient. Good thing too, June 18 afternoon starts with a red stream and then nothing, did self-calf but had large clots plug catheter then nothing. Fast trip to ER at new hospital, 11 hours of drips, drops, and squirts. about midnight I finally get water and a pain suppository and half hour later could self-cath and get some relief, only thing found was a 4th UTI.
June 25 had a new URO briefly go over May 22 Urogram ( first person to do that ) told me with kidney stone and bladder cancer ruled out he wasn't really concerned about source of blood, I sure as heck was and still am. I will not be seeing that Uro again, only 1 more left to try in town of 30,000.
Have any of you had a cystoscopy done during a time of active bleeding or when flow was almost at zero ?
I have been doing Taxotere since March 30, 5th session was to be June 22 but Dr felt I was too weak and did #5 June 29.