Complicated uti situation, please help.

[RealLifeClanger]

I've had uti symptoms for 10 days but the gp won't give me antibiotics due to nothing showing on dips/urinalaysis apart from blood, which I've had for months now. The lab have only cultured one sample due to my samples being low in bacterial load (various samples showed from 6/ul to 20/ul) but I have been drinking a lot of water. The one sample they did culture came back as heavy mixed growth.

I did get some antibiotics from out of hours last weekend but unfortunately they kept causing low blood sugar symptoms so I had to stop taking them. It was pivmecillinam, which I've had twice before with not much issue but I've recently been diagnosed with autoimmune gastritis and I react very badly to so much medication now. I can't have trimethoprim or Nitrofurantoin either due to allergies.

I felt the couple of days I managed to take the antibiotics were better and I started to feel better but the gp is dismissing this and attributed my feelings to anxiety. I do get anxiety with uti's as I have a complex history of resistant infections and unusual bacteria but I'm now second guessing myself as whether I am feeling ill like I'm fighting off infection or if I'm just anxious. I've been told by a different gp that I may have interstitial cystitis, which is another reason the current gp is hesitant to give antibiotics. However, my pain, burning and urgency are much worse than usual, I've been nauseous on and off and I had several nights of waking up pouring sweat and having chills. This seems to have stopped for the last 2 nights though. But I still have occasional nausea and dizziness too. Very fatigued also.

I see urology on Wednesday as the gp did an urgent referral for the blood in urine but I'm hesitant to go through with a cystoscopy with what I think is an active uti. I looked online and apparently this is not recommended due to increased risk of kidney infection and sepsis, however when I spoke to the hospital on the phone they didn't seem to think it was an issue.

I'm really confused and have no idea what to do. The gp just keeps saying to wait until Wednesday for urology but I'm struggling with it all. I'm going to drop another sample off on Monday morning, trying my best to get a clean catch of the first morning urine in the hope that I can actually get some answers before my urology appointment.

Mine wasn’t uti it was an overactive bladder giving very uti like symptoms.
I was prescribed an anti spasmodic. It was called spasmodem - or something like that. Took them for three months. I was diagnosed via an ultrasound and catheter and water into my bladder and being asked when I felt the need to pee.

I also had a lot of tests - and no sign of a uti but all the sensation of symptoms. But it was overactive bladder.
I was going to the toilet all the time and up 3- 4 times in the night.
Now a few years on I also use vaginal estrogen and I haven’t had any more uti but I do get up once in the night to wee.

I had lots of bladder issues in the past, similar to what you have said. After lots of tests, cystoscopies etc I was diagnosed with urethral syndrome

You may want to consider d mannose powder or tablets if you haven't already, ot really helped with my symptoms. I also now take prescribed solifenacin daily which helps with frequency.

Look up Chronic UTI. I'm sorry can't write a long post just now but try not to worry, you need to go to a Chronic UTI specialist, normal urologist won't be much use if it is a Chronic UTI, it's a disgrace that this consition is now recognised on the NHS website and yet there is one NHS option in London and waiting list is either closed or crazily long.

This may not help but I’ve suffered with UTI symptoms my whole life. And my life changed when a doctor told me about d-mannose. It takes the acid out of your urine (or something that effect!!) and has saved me! Not had a UTI since taking it

Try and get antibiotics you can tolerate. Fosfomycin is often given for uti. The nhs are a total disgrace where uti is concerned. Their tests are useless and they tell loads of women they have no uti when they do, which can lead to a uti becoming embedded in the bladder walls. Watch this short talk by a researcher Professor Jenny Rohn called ‘Why we should be angry about uti.’ . Very informative. You need a chronic uti specialist of which there are very few. Here’s another link to a very useful website:

https://liveutifree.com/uti-test/

Thanks everyone, it's a bit of a nightmare. Truly, I don't know what's going on, my bladder symptoms are all over the place. Will hopefully manage a clean catch culture on Monday and I have the form so I can write a note to the lab to make sure they culture it properly and don't just do a urinalysis and leave it at that.

I've been caught out before by drinking so much water it diluted my test results down on the dipstick and the nurse wouldn't prescribe antibiotics. Ended up with a kidney infection. After that, I drink a more normal amount in the run up to providing a sample (even though it makes it worse). Then up the water afterwards.

Equally, if I drink coffee or orange juice I get UTI symptoms but it's not an infection. So I've had to quit them totally.

@Ramblingaway that's awful and is partly what I'm worried about. Did you have to stay in hospital? My bladder symptoms seem to have lessened a bit today but still feeling run down in myself.

No, didn't end up in hospital. But it was the 90s. So the only Sunday pharmacy was miles away, and I was a broke student. The pain in the arse of the walk-in centre being miles from the pharmacy which was miles from halls of residence when desperate for a wee stays with me! I forked out for taxis as I really was too sick to do anything else.

It was my first lesson in 'false-negative' medical testing. I've been caught out several times (thrush, being told my waters hadn't broken, uterine infection after giving birth). So now I am more sceptical. A GP once told me, if all the symptoms still point to a diagnosis, then we should consider treating it like it is, even if the test is a negative. Especially when waiting to repeat the test could be harmful.