Constant UTIs

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Hello, im 28/male

Im quite stuck about my situation as im not getting clear answers from my urologist etc I wondered what people's opinions were on my situation... any ideas would be appreciated.

About 4 months ago i went into A&E as i passed out and i found that my bladder was storing 700ml of water, possibly due to an infection.

over the past 4 months i have been getting UTIs which I haven't had since i was about 6 years old.

I have had a rigid bilateral retrograde/cystocopy/2x urodynamic tests and 2 flow tests in the past 4 months and in between the tests i had a catheter fitted. For the last 2/3 weeks I've been without a catheter and I've had 2x urine samples tested for a UTI and they came back as no action required but now ...today I've started to get light stinging pain in my stomach which is how i felt when i last genuinely had an infection.

When i was in A&E They said my creatinine level was quite high.

So as of now they haven't actually said whats left for them to try or what could be done, and it's merely impossible to get in touch with my urologist.

I have been drinking nothing but water and my urine is clear but is really bubbly.... which i can only assume is from my tests and how long i had a catheter. Its just annoying to be fine for a week or 2 to only then get another infection.

Sorry for the long rant but im not entirely sure what could be wrong .

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6 Replies

  • Posted

    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 

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    • Posted

      Hi, thanks for your response, fortunately I don't have a stricture. But when i was a child i was told i had some sort of valve fitted as the urine would go back up and damage my kidneys but the hospital has lost all of what happened as it got lost when moving the information from the children's hospital. The only hope i have is that my urologist said he would talk to my previous doctor from the children's hospital but it's a very slim chance thst he will remember me and im pretty sure my urologist has forgotten.

      Which i understand to an extent with the hard times of the NHS.

      But ther comes a point when you stop receiving letters from your doctor for results and what happened on the day of the operations etc. After one meeting he said I should never of had a catheter put in the first place and he doesn't know who put it in after my cystoscopy.

      Personally i found it very ...very difficult to self catheterise and i was hoping it was a last resort if I stopped getting infections. However what will be will be BUT it's the point of still not knowing why all of a sudden im always getting infections one after the other.

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  • Posted

    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.

     

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    • Posted

      Hi thanks for your reply, i can relate about being in A&E and them using a bigger catheter tube for insertion, not only that but i had a trainee do mine and i was in agony for about 2 weeks and the doctors didn't believe me when i said i was in pain.

      At the moment since my urodynamic test they said to see how I go without a catheter but now i have the symptoms of an infection, but I don't feel my bladder is storing urine anymore over time because of how regularly i go and how much is coming out compared to my drink intake.

      So I don't see much point in self catherisation when i am urinating 'normally'.

      I currently feel nauseous and now and again i get slight stinging pain in my stomach. Im going to my local clinic to have my urine tested but they aren't that good as last time they said they aren't sure if i had an infection and they gave me antibiotics but they didn't work. I believe I've tried about 5 different ones thus far.

      I'll update this thread once I've been to the clinic and whether i can get in touch with my urologist about some sort of solution.

      -thanks

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    • Posted

      Ramming that first catheter in (mine also by a trainee) in did so much damage to the tip of my penis that it started to close up over the following weeks. That's why I was under general anaesthetic for my cystoscopy - they knew it would be agony inserting it, and while they were at it they dilated the tip. To their credit I haven't had any trouble with that since, but as it closed up it got more and more painful to force in my disposable catheters.

      I HAVE to use disposable catheters because I can't pee at all. But I have heard of them being used a few times a week by men who CAN pee but for some reason are not emptying fully. If your bladder has been stretched by holding so much fluid at the time of your A&E episode, the amount you are peeing may not give the whole picture about how completely you are emptying your bladder. (My bladder is terribly stretched - I forget the medical term - and will never regain its shape, or the feeling within it which used to warn me that I needed to pee. Nowadays I get only very faint urges and rely more on the clock to know when I should probably think about emptying myself. Strange life!)

      Your current nausea does suggest to me (not a doctor!) that you are getting some toxins in your kidneys, and perhaps the urine is backing up for some reason. Kidney damage is serious, so you might want to use that possibility as a lever for getting some attention and action from your GP/specialist!

      Best of luck.

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    • Posted

      Hi, just thought I'd update my post. The condition worsened over night i started to get really sick and felt exactly how i did the last time i went to A&E. however over time i was fine after taking an antisickness tablet.

      The same day i took a urine sample to be tested and thet said I Didn't have an infection and very little protein was in the urine sample.

      Today I went for a flow test to see whether my bladder was retaining urine and to see if the flow was strong and I emptied my bladder fine with a strong flow.

      I still however have a light stinging pain in my stomach area. Since the doctors don't really know why im hoping it's just down to having a catheter in for a month and down to the cystoscopy/urodynamic tests and that my body is just trying to get back to normal... i hope anyway smile

      - thanks for the advice!.

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