"Mixed bag of care. Problem is no one listens"

I've been in and out of hospital over the last 3 years due to bladder problems that have left me needing a long term catheter. The first year of being treated at Victoria was a nightmare. At this point I was intermittently self catherising. This got increasingly more difficult and painful, to the point I was spending one or two days in retention, stuck on the toilet the whole day trying to get a catheter in, often failing to get past the pain barrier. But when I expressed how painful this was, it shouldn't be painful. Eventually I had a urethral catheter placed, which left me bedbound as every little movement was excruciating. Yet again, I was told it couldn't possibly be painful. The urologist who had taken over my care temporarily seemed to lack understanding, for example during a clinic appointment, I asked if I could possibly be experiencing fowlers syndrome, the doctor said they didn't know enough about female urology to want to make any sort of diagnosis or consider trying a suprapubic catheter or referring me for Sacral nerve stimulation trial. I just needed to accept my circumstances. After this appointment I decided to pay to see a private urologist in Edinburgh who specialises in female urology and fowlers syndrome. She immediately agreed that my history, symptoms and tests so far were fowlers syndrome, told me it was common to have pain self cathing and with urethral catheters. She referred me for sacral nerve stimulation, a very long process that could have been started much sooner if doctors had listened here. Private urologist also suggested that a suprapubic catheter would probably be more comfortable in the long run. However, local doctor still refused to listen. I took me becoming suicidal with pain for them to consider it, and then I was lucky that I had a cystoscopy under GA planned a few weeks ahead as otherwise they would have left me in that amount of pain and bed bound for several months. I eventually had SPC put in March last year and since then have not had much to do with my care. I've found that NHS fife  are not very good with handling my chronic problems. My chronic pain is very poorly managed.

This past 6 months have been very tough with recurrent infections. However, the medics took over my care for infections and their care has been top notch. They are very efficient. The doctors are brilliant, and seem to genuinely care. One doctor in particular is amazing. I suffer with quite bad anxiety and her bedside manner is amazing and I feel she listens. She and her team communicate well, keep me informed and will quite happily take the time to explain things that confuse me. I am usually sent to ward 51 during admissions and the nursing staff there are equally amazing. I commend all of the nursing staff in Victoria hospital but the team in 51, I believe go above and beyond. 

I unfortunately was re-admitted after my SPC split and fell out. Unfortunately this was not replaced in time and I have had to have a urethral catheter inserted again. I decided to discharge myself but unfortunately had to go back to A and E later with another urosepsis. The A and E staff acted amazingly fast and within an hour I had had fluids and antibiotics and my temperature etc were coming down. Their care was great but again, I felt it was a case of staff not listening. I tried to tell them that I usually get admitted through au1 but because I'd had a little input from urology re the catheter problems earlier that day they decided to admit me through au2/urology. I was told during the night it was because they would perhaps be re-inserting the SPC, which was confusing as I had been given the impression that arranging this would take time. This morning it was confirmed by urology that they wanted to treat infection. I felt i spent a lot of time explaining things that the medical team know now. To me it makes sense that the team who has the most experience treating my infections should be in charge of my care. Being under a different team and the thought of being sent to ward 54, where I have particularly bad memories has left me feeling extremely anxious. I and my family have requested that my care be transferred to my usual team and although the nursing staff are lovely, they have met this request as if I am being a nuisance. I can't see the harm in them calling the the medical team to see if they would consider taking over my care. Especially seen as this would greatly help my mental health whilst an in patient. I am fed up of not being listened to. If someone could give me a good reason why this is not possible then I could accept this.