Hello folks thought I’d pop by to say hello, hope everyone is doing good, a little about myself I’m 51 yrs old and a paramedic in Liverpool so a bit of a busman’s holiday, I’m an avid cyclist and cycle Daily wether outdoors or on the peloton, this brings me to the cause and discovery of my ongoing issues, back in June/july 25 after a particularly tough peloton class I noticed that my urine was very dark like black tea thought nothing of it and put this down to some dehydration, this cleared up over the day but continued after each ride l, so spoke to my GP who was worried that this may be down to rabdomylosis sent me to A&E and was given the all clear but was advised to get my GP to refer me to urology, this was done urgently and I was contacted within a week and booked in for a CT scan but declined cystoscopy, by time the scan came about the urine had cleared up and so I cancelled the CT scan, I was contacted by the nurse specialist and felt almost bullied into having the scan but declined, my wife was not impressed by this and contacted the team for a new scan date which I attended like a scolded child.
some weeks later I was contacted by the urologist to say my left ureter and kidney were very inflamed and there was something suspicious that need a biopsy, which would require a diagnostic ureteroscopy and stent for a couple of weeks, he also said there was a small stone in the lower left pole which they would laser and remove at the same time, I’ve never had any kidney pain so had no idea this was even there.
This is where I became suspicious I was expecting this to be done within the usual 18 or so weeks , but I was booked in for an urgent pre op 3 days later and was given a date of the 6th October for the procedure this was the first time I had met anybody face 2 face from urology.
the consultant said I had what appeared to be a PUJ obstruction but were not sure if the cause of this and they will attempt to access the kidney do urine for cytology and biopsy,
on waking from the procedure I was told that the ureter was too tight and they were unable to to pass the scope although the bladder looked fine, I would need the stent in for 4 weeks and they will book me back in urgently on the 3rd of November to retry.
this 4 weeks with this stent have been the worst experience ever pain when peeing is enough to make me cry, a UTI and constantly blood when urinating and yet I have to have this removed and then put
back in .
a few days later when looking at my discharge letters on my GP records I see a urology letter that says the following
CT urogram shows appearance of left sided PUJ obstruction, the cause of this is unclear as the surrounding changes in the fat are suspicious for a TCC and further investigations are required.
a rigid cystoscopy and left retrograde and ureteroscopy were attempted but were unsuccessful the lower ureter was extremely tight despite using 2 guidewires, and sample of urine was sent for cytology.
this is the first time any of this was mentioned and the fact that I found this on my record has me very worried, the doctors are very cagey when I asked them they didn’t mention any of this, like I said the surgeon was the first face to face person I’ve spoke too.
in the 3 weeks I’ve been stuck suffering with this stent I’ve heard nothing from urology regarding cytology so I’m not sure what the normal procedure or timeline for cytology is and I’m back in hospital in a week to have the procedure again, and had no other contact other than another pre op last week
sorry for the long winded story but I’ve not been through anything like this before I’d never even heard of a TCC etc so not sure what to expect,
thanks for listening Lee
