To think NHS could have done more?

[joeyhaveyouever]

I’ve had bladder problems since early childhood,
I’ve had a UTI pretty much every year and increasingly as I’ve gotten older . I’m now 29, last year I had nine confirmed infections each spiking fevers, vomiting etc . Even if I’m not having symptoms when they run samples through they’re full of wbcs and inflammation markers .

The NHS has never worked out why . They’ve done two camera tests, and urodynamics, and said they’ve no idea what’s wrong or why and it’s probably not anything they can sort . GP has said I just have to learn to live with it . They have given me so many antibiotics that I’m now allergic to most of them (penicillin, trimethoprim and nitrofurantoin) .

Last camera test they did they said post op that inside of bladder was inflamed, stiff and very small . They said a doctor would contact me to discuss why that might be the case and if there was treatment . That’s never happened .

Since then I’m in pain most days, peeing is very sore, I get cramping pain every time my bladder fills . Waking up in the morning is hell . When I rang reception at surgery today to ask for advice she said it’s now for a pharmacist to manage, or to do self care, not a doctor . They said the hospital won’t be contacting me any time soon either .

I’m exhausted of it all and especially the constant waiting . I’ve had these problems for years but I’ve only ever seen a consultant 5 times . Each time they tell me I’m a mystery; they don’t do urology for pre menopausal women and they don’t know much about it - surely that can’t be right??

I’m on FB and others with similar issues seem to be given treatment, advice, tests, physio even to help . So surely it can’t be OK that GP has just basically said to get used to it ?

Forgot to reply thanks so much for all the advice . Finally finally got through to someone at hospital today - said all urology clinics still cancelled so she said probably be sometime in 2021 before I get any help or advice . But they can’t guarantee that - she said it depends on them being able to offer outpatient clinics going into winter which may well not happen .

Meantime she said same as GP, stick in formal feedback and it might get a faster response of some sort, so I’ve done that . They did acknowledge that at the very least a doctor should have spoken to me after that scope last year , I shouldn’t still be waiting a year on .

Have also bought D Mannose to give that a go, and will keep trying to save for private - that seems the best thing to do !

It is sad but sometimes you have to fight for the treatment you need (or pay for it!)

I kept getting recurring urine infections for years and year.
Now all I drink is water and I don’t get them anymore.

My dm was getting recurrent cystitis and has been taking Vitabiotics ultra cranberry for 2 years now, hasn't had one since. Although your condition sounds far more serious perhaps this may ward off the UTIs which exacerbate it?