I had urgent (emergency - so they said) surgery back in October due to severe bladder problems, they found my bladder is very small, and damaged beyond repair . Told me it was probably congenital abnormality; they’d known I needed surgery for about 4 years but it kept being delayed until got to urgent stage . Have had urine retention on and off since about 2009 - been catheterised dozens of times - and had dozens and dozens of UTI/kidney infections .
After op told I would need yearly tests, probably a yearly cystoscopy and potentially future surgeries some maybe quite big . Told I need to pass a catheter myself as much as needed , if I’m not peeing - I get very little sensation to tell I need to go, and can’t always void without difficulty , need to double void a lot etc .
Also told I need genetic testing/counselling - a cousin has the same issues and she’s got a diagnosis - and told her future treatment will include spinal nerve stimulation etc . She’s got a suprapubic catheter just now . GP thinks her diagnosis will have huge implications for me .
I haven’t seen a consultant since the immediate 10 minutes after waking up from op . Was supposed to have been reviewed by January . That was delayed due to immense waiting lists . Told I’d be seen mid April . Never heard a word .
GP thinks it’ll be 6 months to a year before they reopen most outpatient stuff - but said she’s not sure what to do meantime . She doesn’t fully understand condition - said she’s had to google it - and said she doesn’t want to give advice on catheterising, etc - in case she’s wrong . GP hasn’t heard from consultant at all since October .
I’m not using the catheters at all just now as if I get an infection, I can’t get to the chemist to sort it - as GP has specifically told me not to go due to being vulnerable in other ways ! Just trying to remember to force a pee every 6 hours or so .
I’m totally unsure what to do . Urology department are definitely dealing with urological cancer, but I don’t want to phone if I shouldn’t be bothering them - friend who works on same hospital said urology department is now a corona unit as are all other surgical wards ... So I doubt they would be able to help ?