bladder/cystitis problems, anyone had the same?

Hello, I have read loads and been to the GP so many times and never read about anyone who has the exact same problem I do.

I am 58 and had cystitis when I was a teenager but then nothing until 3 years ago. I started having severe attacks every 2-6 weeks. Not a little bit stingy as one nurse put it! I know straight away when it is coming on and within 3/4 hours it is full blown unbearable. I am really not exaggerating when I say I literally have to stay in the bathroom until I start antibiotics, it then gets steadily better over 24 hours.

Now when I go to the GP they say there is no infection in my urine, so, why do antibiotics clear it then?

Within 3 hours of starting there is plenty of visible blood and clots in my urine. The pain is awful and I feel totally washed out.

After complaining in person and by letter just over a year ago, I was referred to a urologist and had scans and a camera in my bladder. I could see straight away the swelling and bleeding all over my bladder but the consultant was unclear as to why this was. He ruled out bladder cancer thank God. In the end I was put on low dose Trimethoprim and have been free of symptoms for 1 year.

At the end of Feb' I decided to try to come off the tablets and see if all was back to normal as I know it is not good to take antibiotics long term. Yesterday, 10 weeks later all the symptoms returned, I have started to take the tablets again but am I the only one who gets it this severe for no reason?

When I am off work, as I am today because of it, I get so sick of people telling me they had it for 2 weeks and struggled into work. It is really not an option for me at all, I struggle to last 2 minutes with the pain never mind 2 weeks. Aaaarrrgggh, so fed up with it all.

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