UTI Symptoms not going away & scared

[Honeybeebear]

Hello,

First time posting but long time reader 🙂
I started having UTI symptoms 8 days ago-frequent urination, burning, not a lot of wee coming out and ordered some Nitrofurantion from the Superdrug dr. I have had a few UTIs over the years and have used Macrobid which I think is the same and I always feel a lot better in a couple of days.
first 24 hrs of taking them I felt a lot better, but had a reaction half way through the course (pins and needles in legs/arms, numb feet) and ooo doctor said to stop and prescribed me Fosformycin.
I didn’t feel too bad on Monday, went to work and picked my the prescription, used that evening and apart from urgency to wee I felt okish.
Weds- thrush symptoms, got an oral tablet
Thurs- symptoms starting to return, frequency and a feeling like my bladder is full constantly, burning etc.
Yesterday the ooo gave me 3 days of Trimethoprim although urine test was clear! thrush really bad again so used a pessary last night.
Today- felt a ok this morning for a few hours, But then symptoms of burning and needing to wee (every hour) are still there. I’m scared the antibiotics are not working and every night I seems to go downhill and get worse before eventually sleeping. I don’t know if the drs will give me anymore with the urine test negative.

the last couple of days as well as the full feeling in my bladder, I’ve felt twinges/spasms- not sure if it’s my bladder, cervix, or what but it feels constant, I’m more aware of it when I’m trying to sleep.

I’m scared, exhausted and have gone from feeling normal to feeling so vulnerable.

has anyone else had to use multiple antibiotics for a UTI?

I’m supposed to be going to Spain on our family holiday next weekend but at the moment I just feel like cancelling it or DH and kids to go without me.

I had a great week- symptom free apart from a few twinges now and again,

but today and felt a bit of sharp pain now and again like the start of a UTI, trying to drink loads of water to help flush it through but can’t believe it was fine the whole time I was away but feels like it’s returning.

I put the bladder investigations on hold with the consultant as I felt fine last week.

I have a scan this week of my ovaries as my ovarian marker was slightly high following the blood test I had with the GP, not sure if it’s related to the symptoms or not!

So pleased you had a great week - what a relief for you. Did you start any of the supplements? Have been investigating accupuncture and am going to book a session but guess it is probably only as good as the practitioner you get. Also read that pear juice is much better than cranberry juice.

I’ve been taking D mannose- 3x500mg a day, but not sure if I’d I should take more when I feel symptoms returning.
I also started a probiotic and since starting it haven’t had to take any more Fluconazole.

I’ve heard lots of good things about acupuncture.

I'm having similar problems. I've never had a UTI to my knowledge until recently. Awake half the night with a very sensitive bladder and no relief when I go. No burning or pain so not like cystitis (which I had once 40 years ago).
GP dipped and said there was something there, gave me a week's ABs.
A week later no improvement so I went back. The oringinal test came back from lab as negative and another test showed negative. They have now referred me for an ultrasound. My ca125 blood test was also raised so I am feeling quite anxious about it now. I had breast cancer a few years ago which puts you at higher risk for ovarian cancer.

Sorry to hear you having been experiencing similar.

It’s so frustrating when the tests are negative but the symptoms are still there.

I had my ultrasound today and I asked if they could see any cysts or anything and she said she didn’t find anything but I would get the results from my GP within 7 days. I noticed that on the NHS app there is an appointment for the Gp to call me tomorrow evening, I’m worried now about getting the results so quickly.

I’m going to ask about some preventative antibiotics as I’m constantly on edge for the symptoms to come back. I think I’ve had a bad infection and a reaction to 2 lots of antibiotics that have made it prolonged. But it’s hard to keep explaining it to different doctors/ nurses/ out of hours.

My ultrasound is next week. The NHS wait was 6 weeks so I have paid (and even privately have to wait 10 days).
My neice gets shocking UTIs, so much so that she never travels without a course of ABs.

The ABs I had did nothing and there have been several negative tests so I accept that the problem is not infection. There is something wrong though.

Hopefully your GP can reassure you and get to the bottom of it.

Hi, glad you had a nice time. Was wondering how you were !
I'm due to drive to Spain next Wednesday but still not sure whether to go.
I was still getting pelvic pain after finishing ABs so self referred to a urologist.
I went Monday. I felt unwell but went. When I said I had Pelvic pain he suggested I had PID ! He gave me a low dose ciprofloxacin to take for 3 weeks.
He didn't do an internal though to check for PID. All my vag swabs came back normal from GP so how can it be. The pain got so bad later that day dh took me to A&E. They weren't sure, said not likely to be PID more urinary.
Having a pelvis scan soon and am having my ovarian markers checked as well.
I'm so confused now, wish I'd not self referred as now that's muddied the waters.
Latest MSU showed mixed bacteria.
Phonecall with nurse tomorrow to discuss bloods.
I instinctively feel this is a low lying UTI. That's been under treated .The GP/ nurse seem more focused on proving it with a positive MSU than treating me.
I feel shit right now and am nauseous and wretching on waking.
I hope you get some answers soon. It gets all consuming doesn't it.
I bet for both of us it's a simple answer but needs the right clinician to find it 😖

I totally sympathise with you,it's all so frustrating. I'm having similar issues as I've written in previous post. Negative msu tests can be false negative and there can still be a low lying bladder bacteria. All my symptoms feel urinary and my msu showed mixed bacteria but that doesn't mean something else isn't causing it I suppose. I too am waiting for a scan and am waiting for CA125 results. This all started at the beginning of June for me , it's exhausting 😔

Sorry to hear you’re not feeling great and have had to go to A&E. really hope you’re feeling better and able to go to Spain.

I think having the week away really helped me, I was nervous of getting symptoms again but I think taking the 1 dose of Trimethoprim a day worked.

My instinct is that I’ve had a bad infection that hasn’t completely shifted. I just can’t see how this would all just come out of the blue and be so bad without an infection. Apart from the UTI symptoms and the raised CA125 I haven’t really ever had any pelvic pain before.

Im currently on the 7 day break from my pill since Sunday and I wonder if that was maybe the cause of the flare up on Monday/Tuesday - I did notice that when I forgot to take my pill for 24 hours a couple of weeks ago my symptoms got worse the following day. But I don’t really know maybe just a coincidence.

Apart from the antibiotics, Im not sure seeing the specialist helped as I really wasn’t ready for the tests suggested, when I felt my symptoms were coming and going in line with starting and stopping antibiotics but it’s like no one listens.

I’m feeling a lot better again today, but nervous about the results of my scan. I’ve drunk a couple of cups of tea after 3 weeks of water only and been ok so far. I’ve also started eating properly again and I think that’s helping me, as I’d got to the point where I was worried about eating so many things in case it was a trigger.

Absolutely agree with you about symptoms in line with stopping and starting antibiotics and like you I've seen different People so no consistency in opinion.
I've hardly eaten so that makes things worse as then the ABs can cause tummy issues ! Just want to feel well again. This can't go on forever.my instinct the same as yours, I had a kidney infection so think my UTI symptoms are an aftershock of that and it's just dragging on. . And on

I'm in the same boat.
UTI for one month now. Had 3 weeks of Nitrofurantoin (culture said it's sensitive to) but I don't think it was strong enough, as it ramped up again a few days after finishing. Now on Ciprofloxacin, which is stronger, but the bug has some resistance to. I don't have many other options apart from IV which they won't give me unless it goes to kidneys.

I've been here before, and scared to be again to be honest 😥😥. Sleeping is difficult, and it just puts a dampener on everything. Once I had pain for years which started with a UTI. Although I have had times where I had pain for a bit after and it did settle down.

The tests which are still being used have been proven to be unreliable. Even the NHS website states the current tests don't always pick up infection. Why they are still used I have no idea. There are more reliable tests, but they are expensive. I've had broth testing and PCR testing.

I've added pictures, the one with the E Coli is the infection I have now. It did actually come up on NHS testing too, but the NHS use extremely high thresholds of how much bacteria there needs to be, and so it often comes back clear when it is NOT). The other test is also a PCR and was done as part of a trial I took part in for free the month before, when I had no infection, and it shows 'friendly' bacteria only. Sorry if TMI, just wanted to show how there are much better ways of detecting what is going on.

Sorry to hear you are suffering from a UTI too.

Thanks for sharing the test results, I didn’t really know much about the NHS tests and what the results look like as mine was negative and that’s all I was told.

What I’m struggling to understand is that if your current Antibiotic doesn’t work as there is known resistance, there is a IV option but they won’t treat you unless the infection spreads!?

How have we ended up in a place where lower UTIs are something women are expected to live with the symptoms if they don’t go away. This is what scares me the most, the lack of options, lack of treatments.

I’ve only been ill with this for 3-4 weeks (feeling so much better than 2 weeks ago now though) and on my last appointment with a nurse 2 weeks ago today was told it must be interstitial cystitis because my tests were negative so there was absolutely no way it could be anything to do with an infection. Even through I had been on 3 different antibiotics by this point, and had never had any lingering UTI symptoms before.

No further treatment offered for my symptoms, just blood tests and talk of the next stage being a referral to urology.

Even my medical insurer finds this difficult to believe that I’ve got Interstitial cystitis all of a sudden and have requested my medical records for the last 5 years before they will support any private treatment or investigations- not that I was investigation at this stage now.

I think I’m only recovering because I was able to continue taking Trimethoprim because the private consultant gave me some to take just 1 a day to prevent infection which I could go up to 2 per day if I felt symptoms returning. I’m almost out of these now through and I can’t see my GP agreeing to continue to prescribe them as I can’t even talk to my GP, and actually don’t even know who they are now.

It's all crazy isn't it and SO frustrating. I've just about had an argument with my practice nurse.
I booked a phone consult with her about my last MSU which was sent beginning of this week and she said result not back , your not to take any antibiotics.( I already a course of Cipro given by private urologist earlier this week )After call I checked my app and the results came back yesterday.! I found results that showed white blood cells / red blood cells and mixed growth. Tried booking another phonecall but guess what none left 😖😖
I drove to practice as couldn't get thru and I explained to the sour faced receptionist what had happened and could she just find out if the nurse had viewed the latest MSU result. As I didn't want to go the whole weekend if I was showing infection!I don't know what she messaged her on the system but the nurses answer was NO don't take anything your result is normal - wtf
I am feeling nauseous and dry wretching, feel ill, and hardly slept last night due to lower pelvic pain. I know this is a UTI.
Nurse said don't take Cipro as a strong antibiotic.
I'm so frustrated,annoyed,pissed off and flippin ill, this is wrecking my life.
For the sake of a handful of antibiotics shall I just take them ?
The urologist gave me them as a preventative dose but I have enough to do a week's course.
The urologist advice or the nurse ?????

Oh yeah and the nurse also said you probably got IC - really ? What she means is that gives me a diagnosis because they can't help me

Hi, sorry your going through this too. What dose Ciprofloxacin are you on and for how long ?

@Beurla That looks like the results of Microgen DX testing. I had one done in January. Showed up two types of bacteria and bacterial vaginosis. This was all treated by antibiotics prescribed by their pharmacist. The discomfort continued. Turns out it was vaginal atrophy that hadn’t been diagnosed by various GPs at my practice. I researched and asked for vaginal oestrogen which has sorted the problem. For anyone in or post menopause it’s worth thinking about x

IC also known as painful bladder syndrome, its not a diagnosis it is a description of symptoms. There must be a reason why the bladder is painful! Most likely an embedded infection as the nhs likes to give women three day courses of antibiotics and use unreliable tests to diagnose utis.

@Honeybeebear and @Lliria

The NHS tests are really not fit for purpose. Even their own website states Chronic UTI exists, it was finally added in 2022 -

see here, from NHS own website on UTIs -
https://www.nhs.uk/conditions/urinary-tract-infections-utis/
"In some people, short-term antibiotics for a UTI do not work and urine tests do not show an infection, even though you have UTI symptoms.
This might mean you have a chronic (long-term) UTI. This can be caused by bacteria entering the lining of the bladder.
Because urine tests do not always pick up the infection and the symptoms can be similar to other conditions, chronic UTIs can be hard to diagnose.
Chronic UTIs are also treated with antibiotics, which you may have to take for a long time.
Chronic UTIs can have a big impact on your quality of life. If you have been treated for a UTI but it keeps coming back, speak to your GP about chronic UTIs and ask to be referred to a specialist."

and here, from the CUTIC website, which campaigns for more awareness -

"The use of MSUs and dipstick tests to diagnose UTIs are based on research by a scientist called Kass from the 1950s based on a study of a small number of pregnant women suffering from severe infections of the kidneys. These women, who were not suffering from lower urinary tract infections, are not representative of the typical UTI sufferer.

• The current microbiological criteria to diagnose UTI, called the Kass Criteria, is set very high, meaning that levels of infection under this threshold are discounted. The Kass criteria threshold looks for at least 105 (100,000) bacteria per millilitre of urine of a single species of a known pathogen. But UTI symptoms can be caused by low levels of pathogens and caused by more than one pathogen
• The Kass criteria assumes that the bladder is sterile and that a mixed growth results is likely to be a contaminated test. But we now know that the bladder is not sterile. The urinary microbiome is complex and a normal bladder hosts over 500 different species of organisms"

https://cutic.co.uk/what-is-chronic-uti/urine-testing/

It really is madness why most GPs and Urologists are still not even recognising this. It feels really disheartening, for those of us who have limited funds to pay for proper care.

@Tidsleytiddy Yeah one of them is Microgen and the other is Digital Technologies. Yeah, I agree it is multifaceted. I think in some cases it's definitely lack of oestrogen either causing or aggravating symptoms. Lack of oestrogen causes women to lose our 'friendly' bacteria, which protect produce acids which protect us against infection, there are also oestrogen receptors in the bladder and often frequency and burning can be caused by lack of oestrogen. I'm mid 30s so I wouldn't think peri yet, but I might get it checked.
I find the testing useful after some of my UTIs come back as 'clear' or 'mixed growth' on the NHS, but show up on these tests. So at least I know what I am treating and can see when/if it's been eradicated. It's so expensive though!

@Honeybeebear Re the IV, to be fair I see why they are reserving them in case it goes to my kidneys. There are still options to treat orally, even if the bug is showing as resistant to most of them, the resistance can be minor in some cases, so I will try the Cipro first. Back in 2008, I had a UTI which went into my kidneys and then nearly into my bloodstream and I was very ill in hospital to the point they phoned my family during one night. Not all UTI bugs are even able to get into the kidneys, sometimes they can rumble on causing misery though. I think with my bug being so resistant, they want to keep the big guns in reserve.
Please let us know how you get on. Hopefully it is going for you.

@Lliria See above re your 'mixed growth' ! Your practice nurse sounds really unhelpful and unwilling to listen to you or even to current guidelines. Sorry if I read this wrong, but did you ever (recently) get a positive MSU? Even if you didn't, doesn't mean it's not a UTI (see the problems with testing). It may be worth asking your GP to ask the lab to run the culture for longer, and to report on mixed growth, or lower the threshold to 10^2. I've not tried asking this, but it may be worth a try. Also, you could try handing in a sample (preferably once you've been off antibiotics for at least 1 or 2 weeks), which is first-morning really concentrated clean-catch sample. It may be more likely to show up then.
I know that won't help you for now though. I don't want to say take Cipro as it is really strong and has some rare but risky side effects, but I'll admit I have done that in the past when doctors wouldn't listen.
You could take a more detailed test (Focus labs, Digital Microbiology, or Microgen, they all have different times they require you to be off antibiotics on their websites, I think Digital Microbiology can do it whilst you are still on them). Please do let us know how you get on.

Wow this is a really long post, sorry! As for me, my symptoms are improving on the Cipro, today I actually managed to go out for a few hours errands without having to be near a loo, but the bug does show some resistance, so I really hope they continue to improve and don't come back!

@Beurla Yes! So expensive. The NHS really needs to move on to more sophisticated and sensitive testing like these

Thanks for input. My first and latest samples showed blood, wbc,mixed growth, so something there. I've started taking the Cipro. Haven't had this for about 10 years so should work, but I've been left with no choice,as if I wait for another MSU to come back it might go to my kidneys like it did in June - and I really don't want that again was horrendous. Tbh I've had more side effects taking Nitrofurantoin and I seem to tolerate Cipro better.

@Tidsleytiddy You'd hope they would, but women's health really does not seem to be a priority for the government or the health service, sadly. We have only about three or four specialists in the whole UK treating recurrent or chronic UTI and few people are able to even access them on NHS, even after great hoop-jumping. It's the same with birth related stuff. We are just fobbed off.

@Lliria That's insane that they won't give you antibiotics with white blood cells, blood, and mixed growth! Where do they think the white blood cells and blood are coming from?! It's certainly not normal!
Yeah I've had it go to my kidneys before as well.
I don't blame you, I've done the same myself before re self-treating.
My current one is showing resistances to Amoxicillin, Co-Amoxiclav, Beta-Lactams (so all the penicillins and cefalexin-types), Trimethoprim, and Cipro. Scary. There's only Nitro and fosfomycin left orally, or IV. Three weeks of Nitro didn't shift it 😥😥. Now they've put me on Cipro so I'm hoping it finishes what the Nitro started, even if resistant. It's scary on a population level, how resistant these bugs are getting.
What did you take when it went to your kidneys in June?

How is everyone today?

I’m feeling ok again, I’d say I’m 90% back to my normal self.

im only taking 100mg of Trimethoprim now for the last 6 days and from Monday I’m going to only take 100mg if I feel symptoms returning.

I had an appointment with a GP yesterday.
The GP I saw really listened to me and went through all the tests I have had, noted down a timeline of the antibiotics I had taken and that I felt the tests were negative because of all the antibiotics taken and that the 30 hr gap I had between having to stop Nitro and then taking Fosformycin- which then didn’t work and I had another 6 day gap between starting Trimethoprim allowed the infection to continue. They were hesitant at first to prescribe as the tests were all negative but I was firm that the trimethoprim had really put it away and that even my medical insurer doesn’t believe I’ve suddenly developed IC.l as they have asked for my medical records!

We have agreed for me to take 100mg of trimethoprim when exposed to a trigger, or feeling the symptoms returning and to keep a log of any symptoms.

It was such a relief to have a GP listen to me and make a plan to go forwards with. I left my last appointment with a Nurse 2 weeks ago feeling like I had no options other than to pursue a private consultation. If I didn’t have medical insurance through my job I don’t know what I would have done, as the symptoms were so bad that day and I was running out of antibiotics.

My kidney infection dragged on longer than it needed to. My GP sent me to the hospital for IV antibiotics but the reception sat me in A&E for 8 hours instead. By the time I saw an A&E doctor he sent me home as said bloods showed no infection, I was so ill I couldn't argue. My GP treated me with Augmentin, but I don't think it fully cleared it as a week later I had UTI start again. This was all in June /early July and I'm still suffering, which is why I self referred to a urologist this last week. He was happy to give Cipro , my practice nurse however said don't take it until an msu proves it - unbelievable

I'm pleased for you that you are making progress.
As I've already written on a previous it was the private urologist who gave me a low dose ciprofloxacin to take for a few weeks. My practice nurse said don't take it until an msu proves infection even though the one this week came back with WBCs,RBCs and mixed growth - ( she said that was normal )
I started taking it, all this waiting for the perfect msu result has made me more ill. The supra pubic pain has been awful. Surely if a consultant is happy to prescribe Cipro, why does the nurse think she knows better ? I need to have a GP appointment for perspective. Due to drive to Spain on Wednesday but I suppose I have the meds now so it should be ok.
I'm sure your 100mg of Trimethoprim will be a good idea and it's not as strong as the Cipro I've been given .
I too was given the interstitial cystitis cop out diagnosis!!