Urinary issues

[LOTER16178]

Am waiting for another yet telephone GP consultation but feel I am getting nowhere and being fobbed off so hoping this may sound familiar to someone who may be able to offer some ideas/advice.

Started with a UTI on 14/12/2020, I was at the house I am renovating with no toilet and that evening had urgency and was up and down throughout the night to wee. Had 3 days of Trimethoprin prescribed without requiring to do a urine sample the next day and took some cystitis sachets alongside. Symptoms subsided but didn't fully go so had another 3 days of Trimethoprin (again without a urine sample being requested) around Christmas. Still slightly symptomatic (no stinging when going to the toilet or bladder/kidney pain, just an irritation or my urethra low down/feeling of still needing to go) so did a urine sample, results fine at the GP surgery. Sent off to hospital who also said it was fine, however on reading the notes more carefully the GP said there was in fact a trace of yeast. Cue a 7 day course of Fluconazole with no change either. Had another telephone consultation with a GP last month who advised me to try some Solifenacin for 7 - 14 days whilst my bladder hopefully calmed down. Took for 10 days with no change and stopped for a couple of days before speaking to the doctor again to say the tablets hadn't worked and nor had coming off them made any change for better or worse. Went into the surgery for 2 further urine samples (first and mid-stream) and also a swab for bacteria/STI's. All came back last week fine. Asked for a face to face appointment with someone and was offered to see a nurse which I did on 19/02. She did an examination and said the skin around my vulva looked 'granular' and said it could be Lichen Planus (never heard of before!) and prescribed some Eumovate cream. I did point out this didn't really seem connected to my urinary issues but would try it regardless.

No improvement over the weekend and whilst running yesterday I THINK I leaked a bit of urine which has never happened before. My symptoms remain me still feeling like I need to go after I have been, but it does tend to go off after a while and I still am able to hold it normally for as long as needed (no running to the toilet or lack of control) - I also don't have any issues when coughing or laughing which would suggest stress incontinence. I am 32 with no children and usually a decent pelvic floor strength. I am at a total loss and it's really starting to get me down

Any ideas?

Ive had ongoing issues with this that culminated in a very serious kidney infection. I dont think many doctors actually understand what happens with some of these urinary tract infections. What I learned was that if the infection is e-coli it can bury itself in the epithelial walls of your urinary tract. It hides there causing irritation but doesnt necessarily appear in quantities enough in your actual urine to detect in the tests. Trimethoprin is useless against it, you need Nitrofurantoin, and take it 3x a day for at least 2 weeks. I now have a repeat prescription for it and also take one after sex or if I get dehydrated or any irritation to keep it at bay, it seems to be permanently embedded in my urinary tract unfortunately. Have a google of embedded urinary e coli - plenty of info on it. D-mannose also provides relief (it draws out the e coli and attaches itself to it) but its not a long term solution as it doesn't kill the bacteria and in my case I think over time it may have made it worse.

@WellIWasInTheNeighbourhoo Thank you - will mention these when I speak to the doctor, worth a try at least. It's just so frustrating... I had one online message from a GP at the practice before a telephone consultation last month who suggested maybe I had a bit of skin randomly growing over my urethral opening!

@WellwasInTheNeighbourhoo - can I ask about your problems with D-Mannose please. I've been struggling with UTI's over the last few years and D-Mannose really helped so I started taking it every night as well as more so during flare ups. I've read a few negative things about it regarding taking long term but none seem to go into great detail. I do know it doesn't seem to be working for me so much anymore but not sure if that's just because I'm battling something else at the mo that I can't get rid of or because of the D-Mannose. TIA

I had similar problems in the summer. I ended up having three week long courses of nitrofurantion followed by a 3 month prophylactic course. This eventually cleared it up although it took a couple of months for the bladder pain to go as my bladder was so inflamed but then. I found it useful to get my own dipsticks, although my samples came back as negative from the lab dipstick was showing blood and leukocytes so I knew it wasnt normal.

Sorry to jump on this thread but I’ve also been suffering with similar issues and trying to get a GP so see you currently is a nightmare. I’ve had kidney pain, radiating down my back for around 2 weeks maybe a little more, I tested my wee at work and it was positive for blood and protein, called the GP and I spoke to a lovely nurse practitioner who felt it was renal colic and sent me for an ultrasound. The nurse said they didn’t want to send a sample or give antibiotics as it didn’t sound like an infection, the ultrasound came back clear for kidney stones but I’m still having kidney pain and blood on a dipstick test, no other signs of infection! I have no urgency, no pain when weeing so I don’t feel like it’s a typical UTI but definitely my kidneys do not feel right, I have another phone consultation on Friday and I’m going to ask they send a sample. At a total loss of what to do and google is just scaring me so I’ve stopped googling!

Hi Op! Sorry to hear about your troubles. I wonder if you took solefenacin for long enough. I recently took some. I was just about to give up on it and all of a sudden, I noticed a small improvement. I would say it was more than a week. After that, things slowly improved and eventually got very much better after approx another week.

I’ve had a referral made by the GP to urology but in the meantime pushed for a course of Nitrofurantoin, although was only prescribed a week. Thankfully things seem to be improving slightly so if it is better still by the weekend I’m going to ask for a further course, as if it is an embedded UTI I guess it’s going to take some getting rid of.

Thanks for the suggestion @dizzydizzydizzy - I wonder if maybe I should use these again in conjunction with the anti-biotics but maybe will wait to see what the doctor says next week. Not sure if they are a normal thing prescribed post-UTI or whether they assumed I had more of an issue with my bladder/urethral muscles.

I think back to last year when I never thought anything about going for a wee and took it totally for granted - to be able to go and not worry anymore, bring on that day again soon I hope!

OP, just a thought, but what age are you? If you are peri or have had the Menopause it is possible to get urinary symptoms akin to those you describe due to V.A. and which can then be helped with topical oestrogen.

Oops just saw you are only 32 so almost certainly doesn't apply to you... Sorry! Good luck with finding a solution it sounds very frustrating.