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.

Yes, I ended up with an embedded uti. The dipsticks and cultures are not accurate if they are negative it does not mean you don't have a uti. (NHS website confirms this but GP are slow to catch up) if you have symptoms you likely have a uti. You need to try and get more antibiotics or hiprex.

Thanks for your reply.

I have an appointment with nurse at the GP tomorrow and I’m going to ask for more antibiotics but I’m worried about the options as on my third now (although I do think Nitrofurantion would have worked if I’d carried on), and I’m allergic to penicillin ☹️

I don’t think I’ve ever felt so low as I do now. It feels like someone is kicking me in the bladder constantly.

It is horrible I sympathise. Hiprex is not an antibiotic it is a urinary anti septic so that may be a better option for you. Your nurse may not know about it so you might have to ask but it has really helped me.

Thanks- I’ll ask about that tomorrow.

I think it’s the fear that I won’t go away, usually 3 days of Macrobid and it’s gone. Never had one last this long before- I feel like I’m going to feel like this forever, been so emotional about it all weekend.

My antibiotics have been extended for 5 more days.

The burning and pain when weeing has gone but still a few stabbing pains.

I’m struggling to rest or sleep with the spasms in my lower back, pelvic area, & stomach. Are these normal? The nurse said so but I’ve never had anything like it before.

urine test negative again!

Also check out D Mannose - there are other posts on this - can use it to treat acute UTI and as a preventative ...

Are they just dip stick testing? Has a sample been sent to the lab to grow a culture? This can make sure the correct AB is used.

How old are you? Because if you’re 40 plus it could be a menopause issue.

It sounds like PPs have started: embedded and possibly more than one strain. Hiprex and D-Mannose are great preventative, but you'll need to get on to of the infection. Might need the big guns: Ciprofloxacin.

It sounds like other PPs have *stated

I sympathise OP. I feel like I've had a UTI that never really went away since last October. Recently had two courses of Nitrofurantoin. Then felt symptoms return. Tesco UTI test postitive this morning. GP test negative this morning except a bit of blood ( which normally appears with + leukocytes). However they have prescribed Amoxicillin to try for 7 days and sent wee off to lab anyway. I'm off to France on Weds so needed to get sorted with something. I am post menopause and really feel it's related to that. I hope your extended course kicks it out OP. It's horrible. I have also started taking D Mannose fizzy tablets. GP said 'they're quite good' so can't hurt. It's getting really depressing. Just keeps coming back 😫

What is PPs

I always get cramping when I have a UTI, so I don’t think that’s unusual. Try to drink plenty of water to dilute it and to flush out your bladder, this will help on top of the antibiotics.

Previous Posters

How old are you, OP? What you're experiencing is often associated with perimenopause and the start of vaginal atrophy (oh joy!).

I'm early 50s; my urologist is practically on speed dial. If you're perimeno age, topical oestrogen can also work wonders, though it'll take a few weeks to make a difference.

Thanks for all the advice- so helpful just knowing I’m not alone in experiencing this.

Been taking D Mannose for the last 3 days.

I had a urine sample sent to the lab on Friday but they said it won’t be back until Wednesday.

I’m 37 and I don’t think it’s related to menopause as I haven’t had any symptoms.

I have a feeling that if I’d been able to carry on with the Nitrofurantion it would have put it away. I had a 24 he gap between stopping that half way through (after 3 doses) and starting Fosformycin. The Fosformycin didn’t seem to do anything at all. From the next day onwards more symptoms.

all the antibiotics have upset my tummy, I’m hardly eating, just feel like a mess and want to cancel my holiday next week

@CeciNestPasUnPipi do you think I should just get some Ovestin to try?

Sorry to jump in Op. please don't cancel holiday. Something to look forward to. I'm sure you'll be feeling better soon.

Anyone with recurrent UTIs should have an urology referral. More than 2 episodes of blood in the urine. Urology referral. Not much help this late in the day sorry- but self treating UTIs is very dangerous and you could miss otherwise easily treated issues early on… get an urgent urology referral.

Yes, I've had similar in the past and it's worrying when it seems to drag on. Have you by any chance had Covid recently? There are quite a few studies that show a marked increase in urinary tract and gastro intestinal issues following covid. Apparently those systems can act as a reservoir for the covid virus so it remains in your body even after other symptoms have cleared.

That’s really interesting about the Covid, I had Covid in 2020 and had the 3x vaccines.

I did have a UTI last year and it went away within 48rs of Macrobid.

I keep hoping that it was the gap in the Antibiotics that allowed the infection to return, I did feel better initially after a day of the Nitrofurantion- wish I’d carried on with it now and ignored the pins and needles/ numb legs.

I almost feel like it did after my c section.

it’s scared me how bad I feel and the feeling that it’s never going to be normal again.

@Honeybeebear I completely understand your feelings of vulnerability. I am going through the same at the moment. On day 13 of Nitrofurantoin and symptoms not clearing. I've had this on and off for many many years.

Excuse what will probably be a long post.

The dipstick tests and NHS cultures are pretty unreliable. It even says as much on the NHS website! Why they are still doing the same old despite now knowing more it's beyond me.

Firstly, if you get these symptoms, you need to take in a FIRST MORNING, CONCENTRATED sample to the GP and insist it is sent away for culture BEFORE you start any antibiotics. They want to go in blind and treat it 'empirically', but that's not what you need at all. Then only after the sample has been sent, you can start on some antibiotics. This means that they have more chance of the test showing up the bacteria causing it, and being able to see what it is sensitive to and what it is resistant to, so if they need to change the antibiotics they know what to give. This is really, really important. Because if you miss that window, then you are throwing antibiotics at it blindly, and contributing to resistance of your bug. If you can afford it, at the same time, send a sample of the same pee, to one of the labs who offer more in depth testing - (focus medical, regenerus labs, or digital microbiology).

Your culture this time may come back negative because you've been on antibiotics. If this happens and you still have symptoms, then you can wait until you've been off antibiotics for 10 days, and send a sample to one of the labs above.

Lots of bacteria are now resistant to different antibiotics, so getting a good sample and testing is extremely important.

There are other tips which can help prevent getting infections in the first place.

Hopefully this will help, if you need any more info let me know. I completely understand, right now I have an infection (e coli) which is resistant to trimethoprim, amoxicillin, cephalexin, and cipro (!!). Only yesterday on day 12 (!!) of Nitrofurantoin did I start feeling a bit better after lots of sleepless nights, I know how hopeless it can make you feel, I'm scared it will come back too.

Thanks for all the information really useful.

I’m not 100% sure the lab sample they have sent will even show anything due to the antibiotics I’ve had already.

But it must be an infection as it did definitely start to get better before I stoped Nitrofurantion.

Sorry you’re going through this too, it’s just horrible.

I've done nothing today but sit around and cry.

Google Dr Catriona Anderson and watch her videos on embedded infections.

Unless it's contraindicated for you specifically, I don't see why not. Topical oestrogen is very low dose - but can still make a difference. Chat with your GP.

Thank you.