I have a history of very complex bladder problems - thought to be a genetic syndrome but no one’s not sure what . My bladder is huge, normally holds about a litre before I need to pee, it doesn’t contract well, and when I do pee I retain about 700ml each time . The tubes from bladder are also too small, too tight and have scars/strictures .
I’ve had two cystoscopies, two urodynamics and two dilation and countless catheters . Taught to ISC (catheterise myself) .
Because there was a very long delay between last flare up of symptoms and getting a scope (five years - it was put down to anxiety for a very long time as ‘young women don’t get bladder problems’) hospital told me there’s likely irreparable damage and might be looking at one day needing long term catheterisation (eg a bag) or something .
I’ve got PTSD from the way I’ve been treated in hospital (left in agony many, many times) which GP says isn’t her job to manage, and hospital say isn’t their’s - both have said I need to just try and forget about it and get on with what they’re saying to do (to ISC 6-8 times a day for life) .
GP also says she has zero knowledge or training in any of this and says I’ll be hard pushed to find anyone who does ...
I’m not ISCing just now - I get endless infections and zero support . At the moment I’m just monitoring my fluid ins and outs and making sure I go to the loo more frequently .
However I’m starting to find I’m getting more and more symptoms - as soon as I’ve been to loo I have to go back 2 or 3 times , and a lot of pelvic pain in the mornings . I’m also noticing that I’m getting long gaps never needing to pee . I was told that if a lot of these symptoms get ignored I’m putting my kidneys at risk over time .
Hospital said I will need another cystoscopy and urethral dilation soon however surgeon told me they want me to start having this wide awake with just local gel - said no reason for a proper anaesthetic as I should be able to ‘bear ‘moderate discomfort’ for 20 minutes .
I really, really don’t think I can cope with that . I’ve had several surgeries now for this and complex gynae stuff (they think all related) and I can’t be awake whilst they force metal dilators up there . I’ve done that before - been awake for surgeries (spinal anaesthetic) - and it causes more problems than anything else because I remember things I think I’d rather forget !
I’m not sure what to do or who to contact - GP isn’t interested in the anxiety side and hospital were even less concerned - so should I just keep muddling on and not involve them ? I’m finding I’m trying to ignore much of it and burying my head in the sand which may catch up with me eventually .
I don’t even know if I should just complain; the last twice I’ve seriously needed help I ended up sticking a complaint in and getting help then - but that doesn’t seem the most productive way to sort it !