hi all,

i hope everyone is doing well x

i've been under the care of urology since february for repeat UTIs with microscopic haematuria and urinary retention. they put me on methenamine for infections and solifenacin for incontinence. this initially wasn't treated as urgent, but rightfully needed investigating, and so i was sent for a cystoscopy. 

unfortunately, they discovered that i have a urethral stricture during the procedure and so couldn't continue due to how painful and narrow the tube was. they told me that they would put me on the waiting list for the procedure to be done again with dilation and biopsies under general anaesthetic as a matter of urgency due to the fact that i'm only 21 and a woman, so quite a rare combo! 

doubly unfortunately, i was due to have a lymph node biopsy at the same time and my trust does not allow for you to be on two surgical waiting lists at a time, so i was removed from the cystoscopy one in lieu of clinical priority. the lymph node biopsy has since been cancelled. 

despite taking methenamine (which worked really well for a while), i've had 3 UTIs in the past 3 months. i've also had an episode of visible, painless, heavy bleeding with one of them which required a hospital visit. i've also lost 10kg in weight within this time with a major loss of appetite. 

i saw my urologist today who is now fast tracking me to have a bunch of investigations done. i have to have a specific CT of my bladder and the cystoscopy has been remarked for urgent review. 

this has come as quite a shock as, up until now, i assumed there wasn't anything too concerning. i know most cases don't end up being cancer, but the look on the consultant's face when he was talking to me has spooked me a bit. he also didn't reassure me that it was very unlikely like usual (i've unfortunately had quite a few 2WW fast tracks), and that's made it worse. 

i haven't found many people online who have had or have gone through this process for this specific type of cancer, so i'm posting this in hope that maybe someone can make me feel a little less alone in it all?

so sorry for venting! thank you for reading x