Constant UTIs

Unknown  I am sorry that your going through this at a young age.  Do you have a stricture.  2014 I had 6 bladder infection plus sepsis.  When I saw a urologist he found a stricture just before the prostate.  When I was going to the bathroom the stricture was holding some urine back and they it would go back into the bladder.  If the doctor will not help you go to another one that will.  It's a shame you can't get a hold of the doctor.  I may not be ablr to call him by phone but I can e-mail him and he e-mail me back within 24 hour  Good luck  Ken  When you get a bladder infection you can have pain anywhere in that area 

Hi there, unknown,

That's a familiar story to me!

I was admitted to A&E with over two litres in my bladder, which turned out to be a mixture of urine and blood. Peeing had been getting harder and pinker for a few days, but in retrospect I had been retaining unrine fro quite a long time - what I thought was middle-aged spread on my waist was actually my bladder gradually filling up.

That was two years ago. In the first year I had every test known to medical science, every kind of scan, none of which came up with an explanation for why, since then, I have been unable to pee at all without disposable catheters. When after a year, nurses were still asking me to pee normally, I told them not to bother getting in touch with me unless they had something more constructive to ask; I've heard nothing from anyone in over a year now and I assume everyone is happy with the way things are now - ie, me not bothering them, and frankly self-catheterisation is fine, not a problem and certainly better than a permanent catheter or being incontinent.

As for being able to contact your urologist - that was impossible for me too, despite repeated letters and phone calls. There was also shenanigans with waiting list manipulation, and far too much reliance on the private sector - every single NHS urologist in Lothian NHS is also on the staff of the private clinic Edinburgh Urology, who of course get all the work when the NHS (ie them) fall behind with waiting lists.

In the end I made a formal complaint, which was upheld in full, about waiting times and failure to communicate with each other or with me about myt condition. But of course, I don't expect that made them any more enthusiastic to see me.

I too had a rigid cystoscopy, under general anaesthetic, after which I was left with a fitted catheter for a week. I think because my urethra is quite narrow the cystoscopy may have done some damage on the way in, and a fitted catheter would avoid me inserting disposable ones four times a day until the damage had healed. The worst damage was in A&E back at the start, when in their haste to get all that fluid out of me before i exploded they rammed in a wide three-way catheter, which was incredibly painful and (in my opinion) may be the reason I cannot pee at all now. (I presume you still ARE able to pee normally?)

I get occasional UTIs now, maybe two or three a year, which are an inevitable risk when I'm inserting something into my bladder four times a day. I had far more UTIs in the first year - not sure why, but the improvement may just be that I am incredibly rigorous about personal hygiene around the penis now.

Your doctor should be on your case with the urologist. The GP is a patient's advocate, the go-between between you and the specialists. I was lucky, not so much with my GO but with a regular locum doctor at the practice, who understood the seriousness of my condition and my frustration at urlogy inaction. It was always the locum who moved things along. If your GP is not acting in your interests, either from ignorance or pressure of work, you should consider registering with another if that is possible where you live.

I had not heard of creatinine (which I now read is a waste product in the urine), and as far as I know I was not tested for it (but I've had many urine tests over the two years and all I cared about was the result, so I could get the right antibiotic for the latest infection!). The valve to stop pee re-entering your kidney sounds like an avenue for exploration - surely that is something that would show up on a scan, even if there is no record of it? If you have stinging pain as you describe, and if your urine is testing clear of infection, perhaps there is a problem with this valve, or with the lining of your bladder. When my bladder got very full, just before I was admitted to A&E and a couple of times in hospital when they didn't empty my fitted catheter in time, urine backed up into the kidneys and made me vomit. Are you getting any nausea? Are you retaining urine?

I have the deepest sympathy both for your condition and your frustration with the system. I hope things work out for you.