8 weeks of UTI - where to go from here?

[OnePeachOrca]

Hi all, I’m new here and feeling desperate.

Had a uti 8 weeks ago that I thought had cleared with 3 days of nitrofurantoin but came back 10 days later. Urine sample confirmed E. coli and was given a further 7 days of nitro but it didn’t help this time. Was then given a one-off dose of Fosfomycin which did nothing and I’ve had symptoms ever since (bladder pain after weeing, feeling desperate to wee straight after going, intermittent urethral sting/itch and wee itself sometimes stinging and feeling hot).

While symptoms aren’t as excruciating as the initial uti onset, it’s really messing with my life now and I’m getting very scared that my original infection is embedded and that it’ll never go away. I’ve only had a few symptom-free days in total over the last 8 weeks (most of these were during my period) and the fear of never clearing it is totally consuming me. I find things tend to calm down at night and then flare up again in the afternoons/evenings.

Bloods normal, urine samples have all been negative since that one that grew E. coli so not able to get more abx and I’ve got an ultrasound tomorrow to rule out other causes. Had a positive swab for BV which seemed to clear as a few days later a swab revealed no infection (so no treatment given). Been taking waterfall d-mannose which helps to ease symptoms when they get bad and started a few days ago on optibac (to help with the BV).

Just looking for some advice and any similar experiences. Anything like this that eventually went away would be amazing, but not holding out much hope. I feel I’m headed down either the embedded or interstitial route and both terrify me as I’m mid 30’s with a one year old and already finding it hard to cope. Thinking of a private consultation if no progress made soon but unsure who to see as this greatly affects treatment and overall approach taken.

Thanks for reading and big hugs to anyone else suffering xx

Your gp needs to do an enhanced urine culture. It takes a day longer but it finds out what antibiotics your uti are resistant to. I had E. coli uti (in fact I get a uti most months so I'm a pro unfortunately) and it was resistant to trimethroprim but not nitro.

Thanks for your reply. Unfortunately my urine samples are all coming back negative now so feel like I’ve lost my chance with that. When I had my E. coli one confirmed the gp said it was odd that it wasn’t responding to the nitrofurantoin, as it should be sensitive to that (unsure if that means the enhanced one was done then or not).

I have the exact same problem, all tests come back negative (bar the odd one) but antibiotics do seem to help each time. I had 6 months solid on nitro and not a single uti, but otherwise get them monthly.
My consultant said often the tests don't pick up infection but if abx are working then it's likely to be an infection.
I put a post on a few weeks ago as bladder instillations are next on my list.

It’s so frustrating when the tests are negative as you know your body and symptoms. It’s good that the abx work for you, if anything so you know what you’re dealing with and that there’s a way to keep it at bay. Hope all goes well re the bladder instillations too. I’m not too clued up on that but I’ve read a few accounts of it providing good symptom relief.

My initial 3 days of nitro worked but then next 7 day one didn’t, (neither did Fosfomycin) so unsure if it means embedded uti or not even a uti at all. It’s all so confusing and I hadn’t had a uti for about 8 years prior to this. Would like to try a different antibiotic to at least see if it helps before exploring other options but getting is near to impossible without a positive sample.

Have you come across d-mannose? It's really effective but you have to take it like clockwork, including once overnight at first

Well not like clockwork exactly, but often
Hope you find some relief.

The other thing I've tried that also really did help a lot was uva ursi - you have to take twice the recommended amount though, and don't use it more than once every two months. Not one occasion, I mean one bout. So if it recurs within two months, try something else.

OP, you'll find D-mannose here

Hi OP, solidarity here, I'm in the exact same boat as you. Haven't had a UTI for years, thought having kids had changed all that for the better then got one mid December and it's still here now. Except this bugger has spread to my kidneys.

I'm now on my 4th different type of antibiotics, ciprofloxacin, I've been told this is the 'big guns' by OOH so I'm praying this is finally it. But I totally get what you mean about worrying this is basically your life now. I'm obsessed with getting better, spending hours on the internet. Of course none of it helps.

D Mannose is a good preventative measure when you're UTI free. Hope you start to feel better soon.

All the antibiotics I've used successfully for UTIs over the years have ceased to work, as the infections become resistant to them. There are some antibiotics which do still work, but the GP warns me that there aren't many of these left - and when these fail, it will be a hospital admission for intravenous antibiotics.

Thanks for the recommendations. I’ve been taking d mannose since December (high dose at first and then weaned down) and it does seem to help relieve symptoms when they’re bad but not a fix.

The uva ursi sounds interesting, may give that a go. I don’t have symptom-free periods and then flare ups/bouts though, it’s just always there in varying degrees every day. But it’s got to be worth a try.

Oh bless you, it is a wretched situation to be in isn’t it?! Sorry to hear that it’s spread to your kidneys and hoping that the OOH antibiotics is the thing to finally do the trick for you. It can be so worrying when other antibiotics don’t work when on paper they should. Please do let us know how you get on with things (if you’re happy to) and feel free to PM if you’d like any solidarity/support.

How old are you OP? During peri, women can get vaginal atrophy which also can affect the urethral lining, leading to infections. After repeated infections GP suggested I try a vaginal pessary Ovestin which has worked brilliantly.

It is a scary prospect when you start to run out of options, although good to know in a way that the IV antibiotics are there as a last resort but obviously not the route anyone wants to go down. Are you currently suffering with another UTI? Or is this general info for if you get another one?

I’ve never had antibiotics for UTIs prior to this, so I’m hoping one round of something won’t be enough for the bacteria to develop resistance- although I really have no clue no how long it takes!

Thanks for the advice. 🌸I’m 34 so assuming I’m not quite at peri-age yet, although the thought that this could be something hormonal has crossed my mind. Particularly as it calmed down during my period and sometimes it is difficult to determine whether the burning pain is coming from my bladder or my vagina.

I was prescribed Hiprex for recurrent UTIs.

If you are perimenopausal / menopausal vaginal estrogen can help prevent further utis

General update: went for my ultrasound yesterday and bladder, kidneys and ovaries all appear healthy (bladder emptying properly too) which is reassuring. However, they found I have an enlarged spleen! Have started to frighten myself via Dr. Google that I’ve got some awful underlying issue separate to all this UTI business, but they did say it could well be an indication that I am indeed still (or have been) fighting an infection. My blood tests have all been normal so that’s helping me not to freak out too much. Thankfully I’m really (and I mean really) not into contact sports, so risk of rupture low! 😂 don’t know exactly how enlarged it is yet, will need to check in with the gp this week to go over findings but hoping this might give them some grounds to try me on antibiotics again.

I've just finished a course, which was four weeks of trial and error, because the antibiotics the lab tests said should work (and always have done in the past) were no longer effective. I have been having UTIs on and off for over 50 years, and they may well be associated with IBS. As a long-term sufferer, I keep testing strips and urine sample pots in the cupboard, and take d-mannose regularly. I am scrupulous about personal hygiene, and keep well hydrated. There isn't much else I can do. It's probably just a physical quirk that means I am vulnerable to infection.

I've had this, it went on forever. What I found out was NHS testing to find UTIs was created over 70 years ago and hasn't changed it's horrific (a doctor was recently on the radio saying it needs to change but literally no ones listening), the testing for us women is awful, even sending off a culture with the NHS they only check for a handful of common bugs. I gave up in the end (GP started saying it was in my head and telling me to do breathing excercises?!) so I did some Googling and did a private test with a company called Digital Microbiology and they were amazing, and I mean REALLY amazing, they found the bug that was causing my issues and also told me what I needed to take to treat it. I wasn't sure if my GP would take in the results but he immediately put me on their recommended antibiotics and things cleared up for me but you have my sympathies I was in agony it's a horrible thing to have. Hope you get it sorted soon.

I had to go privately to the Lee-Malone clinic in Harley Street. They treated my Embedded uti using long term antibiotics and hiprex. You may find the following link useful for further info https://cutic.co.uk/

Can I ask what your routine is for taking it please?

I'm amazed that it looks like no-one on this thread has been referred to a urologist?

After persistent uti's one of which evolved into a kidney infection I got referred and got to the root of what was causing the infection (in my case my bladder wasn't draining properly).

Perhaps an option?

It's been a few years but I think it's every 2 or 3 hours - whatever it says on the packet at the link above.

Hi OP

This is just from my own experience and not saying it's definitely what you have.

I've had similar symptoms and mine actually turned out to be a vaginal infection called aerobic vaginitis. It did feel much like a UTI though. I found this out by doing both a urine test and vaginal swab from a company called Digital Microbiology. Don't just do the urine test because vaginal bugs inevitably get in there so you need to get the whole picture with the vaginal swab too. I will warn you it is expensive though. Also hardly anyone had heard of aerobic vaginitis and I had to treat myself in the end.

An alternative is going to a GUM clinic and telling them you have vaginal discomfort and they can do a microscope swab. If you have gram negative or bugs that are a different morphology to the usual vaginal flora they can pick this up. Sorry for the jargon - I am a scientist with microbiology experience!

If this is what I had do be prepared for a fight to get anyone to take you seriously.

Good luck. I feel for you because constant UTI feeling is true hell.

Xxxx

Ellie54320: Our NHS surgery gets the test done at the lab, and the results specify the infection (ie e-Coli/Klebsiella/whatever) and the antibiotics to which it is susceptible. There are usually several.