"I have never been told what is actually wrong"

I appreciate before writing this that the COVID19 situation has obviously had a horrendous impact on services and I more than understand that .

I have had urology issues since about 2010. I keep going into urine retention and get recurrent infections. I don’t void properly and have been told I’m using the wrong muscles. Have also been told there’s a structural issue so it’s quite complex.

I’ve had a cystoscopy in 2011, and again in 2020. I’ve had urodynamics once in Glasgow. I’ve had I think 3 appointments with a consultant in Aberdeen in all that time and once in Glasgow. I keep being told that whatever’s wrong will probably be unlikely to ever go away entirely, Glasgow said it was probably quite serious and complex.

I accept that - but how can it be that after ten years I’ve never been told what exactly is wrong? My most recent scope a doctor came round the next morning, said he didn’t know what exactly was up but I was probably ‘born that way’ and probably would need regular treatment and follow up. So how can it be that since that op, I’ve had very little explanation or contact from anyone? I got a phone call from the urology clinic a while ago asking if I was still experiencing symptoms and did I still want their help - totally bewildered by that, how are they suddenly going to have gone away by themselves in the last six months ?

I’ve been told to self-catheterise - but then told there’s no support for that. I’m dyspraxic and my anatomy is such that I cannot confidently catheterise myself without ‘bumping’ the catheter and then giving myself a UTI.

When I was first told that would be the thing I had to do in 2017 they said that would be for a very temporary period ... it’s now three years on? Is it lifelong - I’ve no idea? 

I appreciate that the answer probably will be as I’ve been told before, that it’s probably congenital and nothing anyone can do to fix it but to not even know what’s wrong, or what can be done to make life easier after ten years, seems absurd!

My cousin has the exact same symptoms - lives in SE England - has regular reviews, a suprapubic catheter, treatment options, medications where needed and support from the urology team. She also has a diagnosis. It seems one of these postcode lottery things.

To make matters more frustrating because of illness I had to take time out of my degree. I’m due to go back to uni in January and presumably I’m going to find that I will be back to square one when I get back down south to Glasgow - they said they won’t take Aberdeen’s test/surgical reports and Aberdeen won’t take theirs.

So am I meant to put my life on hold until this is sorted? It sounds stupid but I’m totally unsure what I am meant to be doing - I don’t get much urge to pee, I don’t pee properly, I don’t know if I’m emptying my bladder and I have pain across my bladder most of the time. I’m worried what is happening long term if I’m not doing everything correctly.