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.

Thank you for all the advice @stopthemachine
Yes it was a standard nhs culture (and it showed that amoxicillin sensitive to it - also showed that the previous nutri was resistant.)
I'll get some optibac. Have been drinking kefir.

And I've got vagifem to start once I've finished the antibiotics

Hi @dahliaaa . I hope the course was long enough and clears it for you, if it is sensitive to the Amox this time. Fingers crossed. Sometimes the NHS cultures can be not sensitive enough, and the courses not long enough I find.
I'm hoping I can stay clear. Been clear no UTI since August but getting twinges now and been doing everything and avoiding triggers. Hopefully doesn't come to anything. I hope your clears up.

Thank you @stopthemachine - I really hope you manage to keep avoiding them. It's had such a huge impact on me for the last few weeks.
I've taken the last amoxicillin this morning.
Pain has gone when I wee but still feels like pressure on bladder and need to 'go' a lot (although I do tend to have that quite a lot anyway.) The home urine test (just some of the strips from Amazon like they have at drs) is clear on everything other than trace leucocytes.
I've bought some of the optibac probiotics so will start those today plus the vagifem. Will continue with just drinking water. No perfumed soaps etc in the bath.

Does that sound about right - rather than contacting gp again at this stage. (Even though I think there is still a little something going on I guess I just need to wait and see if it settles completely.)

Sorry one other thing I meant to mention in case anyone knows the answer.
The culture last week showed:
>10^8cfu/l proteus species. With my schoolgirl (not very good) maths I think 10 to the power of 8 is 100,000,000 so it's showing more than 100 million (somethings ?) of proteus.
I have absolutely no medical knowledge whatsoever but that sounds a lot to me (?) Just wondered if that's an unusual amount and if a week of amoxicillin would clear it.

@dahliaaa Haha I have schoolgirl maths too! Not sure about the maths, but my last infection was 10^6 E Coli.

Anything over 105 is classed as an infection on the standard tests the NHS use. It's silly really as that threshold is based on an outdated small study of pregnant women with kidney infections in the 1950s. You can have bad UTI symptoms at much lower thresholds of even 102.

Sometimes I still feel a little 'iffy' in the bladder or urethra after a UTI, hopefully it settles down for you, but if it gets worse at all then go back for more antibiotics.

One thing I've tried after infections is carrying on with some natural treatments at the highest doses for a while after, to try get rid of any lurkers. Then cutting down to using natural stuff just at night, morning, and after triggers. Then natural stuff only after triggers. Also making sure to pee at least every 3-4 hours, preferably once overnight as well, and trying to get enough rest and nutrition so your body can fight off any remaining bugs.

I'm not sure what to use for Proteus (maybe Uva Ursi). However I found this link, which states that the urine should be kept alkaline because Proteus CAUSE alkaline urine, and so they don't replicate well in alkaline as they think they are sitting in their own waste (well bacteria don't think per se, but yswim!!). You can keep checking with the PH strips. If you have not actively tried to alkalise your urine, but it is consistently very high PH like 8, then the infection may still be there.
https://pantrypharmacy.com/2018/12/23/the-kill-list-proteus-edition/

@stopthemachine hi, I'm just jumping in, interesting what you'd said about the Proteus bacteria, as I was advised years ago to drink Barley water to keep the urine alkaline as some bugs can't thrive , in the urine.
In the past I had a couple of UTIs caused by ecoli so taking D- Mannose helped but it doesn't work on Proteus so other remedies are useful.
I ll read the link you added .
I've been with this thread since last July and it's great it's still rolling but unfortunately it shows how common UTIs are 😁

Sorry you are struggling too @Lliria although interesting to hear from someone else with proteus as it seems quite unusual.

Thank you again for all the info @stopthemachine. Really really helpful. Interesting that the article you have posted suggests that proteus often only seen after catheter use which I’ve never had.

I'm now two days after finishing the amoxicillin but still very uncomfortable with constant dull ache and feel desperate for the loo even when I've just been.

GP has sent off another sample but won't be back until next week. In the meantime I've started the vagifem and I have a prescription for Trimethoprim - but have been asked to only take it over the weekend if things really escalate again which makes sense (it is indicated from the last culture as was amoxicillin)
The Dr said it would be better ideally to wait until the latest culture comes back first.
Im at the stage now where I can't imagine it getting better which I know sounds ridiculous but it has such a huge effect.

@Lliria Yeah D Mannose is excellent for E Coli, possibly Klebsiella, but not for others. How are you doing now? I was clear of UTI since August, but I am getting 'UTI-type' symptoms after any kind of intimacy. Not sure what is going on. Yes they are so common, I think it's the second most common bacterial infection in women, yet so little research.

@dahliaaa It's no problem, I have had many years of issues with UTIs unfortunately. With the NHS culturing methods, it is best to make sure the sample you give is as concentrated as possible, because the threshold of bacteria growing in there that defines 'UTI' vs 'no UTI' is so high. So first morning urine, or urine that's been in the bladder at least 4 hours (I know, so difficult when constantly need).
There are other, better, testing methods available, but unfortunately these are quite expensive. Focus labs, Digital Microbiology, or Regenerus Microgen.
Do you feel your symptoms are improving slightly, or even staying the same? It's difficult to tell if it's just residual inflammation from the infection (UT infection causes the same inflammation in the bladder as say an infected finger would), or the infection is still there. Certainly if symptoms are worsening then that would suggest infection still there.
You don't sound ridiculous at all. I am exactly the same. I have a horrible fear of it not getting better. It should clear though, with the correct identification and treatment.

@stopthemachine hi, Like you I've sort of been ok since last August, but I did have a Cystoscopy in November that caused UTI type symptoms so hospital gave me Nitrofurantoin for a few days. I sometimes feel symptoms coming on after a long work day if I haven't drunk enough but that's probably dehydration. In fact when your UTI prone every twinge causes a " I hope not " maybe symptoms after intimacy is irritation from the bladder being agitated ?

@stopthemachine symptoms definitely improved from the worst of it but it's difficult to tell now whether they have stagnated or slowly getting worse again. I guess I'll know over next few days.
(The samples I've been giving have been from first thing in the morning.)

I'm sorry you are still struggling with discomfort - it must be so frustrating.

Sorry I'm back again.
Culture from last week (after I had finished the 7 days of amoxicillin) has come back and still showing 10^8 of proteus bacteria.
It doesn't look like the amoxicillin had any effect at all even though it was shown as sensitive to it.

Have now got a prescription for trimethoprim which is also showing as sensitive to the bacteria but I'm getting really nervous now that the antibiotics aren't going to treat the infection (this is third lot.)

I started the vagifem a few days ago too but still in the loading stage.

I had already started the optibac feminine probiotics. Does anyone know if I can carry on using those at the same time as antibiotics ?

Yes carry on taking the Optibac x

Thanks @Tidsleytiddy

Has anyone else had a uti that didn't respond to ABs?
So resistant to treatment rather than recurring ?

@Lliria Thanks and I hope you remain clear. Yeah it probably is either irritation to the bladder/urethra tube, or disruption of the microbiome. Happily it went after a few days.

@dahliaaa Oh no I'm sorry the Amoxicillin has not cleared up the infection. I hope the Trimethoprim does. When the sample report comes back from the lab to the GP, the bacteria will have been tested for susceptibility to a handful of different antibiotics. There is a measurement, called the MIC, which is a test of just how effective each antibiotic should be at clearing the infection. It's kind of a spectrum, if you see what I mean? Some are only minimally effective but still technically show as 'effective'. Maybe you could ask them about this? Cause if your infection is resistant, then it would make sense to use the most effective next, but maybe they have already done this?

Sometimes they take a long time to clear. I had one last Jan that took 6 days of Nitrofurantoin then 7 days of Ciprofloxacin. Another last July that took I think nearly a whole month of antibiotics to go. How many days Trim have you been given?

Thank you for the detailed reply @stopthemachine.
On the nhs app both amoxicillin and trimethoprim show as sensitive from the lab culture (that's why it seems odd that amount of bacteria doesn't seem to have reduced at all after week of amoxicillin.)
There doesn't seem to be any indication that one would be more effective than the other although at first I thought that the way it was written meant that amoxicillin was first choice.
It was only a few days later that I realised they were probably in alphabetical order
It's probably best if I don't start a medical career.
I don't know why it's made me so uneasy to not respond to two lots of antibiotics - probably because I'm very lucky to have not needed them very often in the past, and when I have they have tended to work first time.

@dahliaaa Haha me too re medical career! Your GP could maybe phone the lab and get the MIC, I just remembered my culture report didn't have the MIC info either. Did any other antibiotics come up as susceptible?
I'm not surprised it's made you uneasy. I am exactly the same, having had them take a long long time to clear up before.
The good news is that Trimethoprim is not as hard on the friendly bacteria, so the Optibac and Vagifem should help build them up after the Amoxicillin. You need to take the Optibac at least 2 hours apart from the Trimethoprim, preferably on an empty stomach.
Hoping it clears for you xx

Thank you - and useful to know about the two hour gap

@dahliaaa Hi, yes this has happened to me. Last summer I had a UTI that was persistent. I'd take an antibiotic course and the symptoms would come back or the ABs just dampened the symptoms. Think I had about 7 courses over about 2 months. I thought I'd never get better. In the end I paid to see a Urologist as by this point I'd seen different GP/ nurses and they told me I couldn't possibly have another UTI as I'd had treatment !! The Urologist said sometimes bugs are low lying and the ABs don't clear them . He recommended a longer daily dose of Nitrofurantoin. In the end I didn't start this as thankfully my symptoms did clear but I now have this recommendation in my medical records .

That's really useful to know @Lliria thank you.
Did you just find a urologist via your local private hospital ?

@dahliaaa Hi, yes I did. I asked a GP to write me a referral letter and I chose the Urologist I felt was best for treating UTI. He was very good although scientific but that's ok as I'm in Dentistry so understand medical jargon !! If I had waited for an NHS appointment it would have taken it at least 6 months - if not longer . It cost £200 to see him but for me worth it as I wasn't getting anywhere with my GP practice

Thank you @Lliria that's really useful to know.
I'm having a little pity party here. I took the 3rd trimethoprim tablet this afternoon (started them last night) and feel really nauseous.
Sat on the train home desperately trying not to throw up on anyone - and I managed not to so there's a win.
I didn't have any side effects with the other 2 ABs - although they didn't work either so maybe that's not anything to celebrate (!)
The leaflet says you can with or without food but I'll try and make sure with food for both tablets tomorrow in case that helps.

Still feeling very nauseous today and physically shaky.
Did anyone else have that with trimethoprim?
I didn't have side effects with the other antibiotics.
I'm now almost a month into trying to tackle the uti.

@dahliaaa The last time I had Trimethoprim was many years ago, so I don't remember sorry. It's well known for causing nausea though. If at all possible, and so long as you don't actually vomit, it may be best to try finish the course. Chopping and changing isn't good if they are actually working. How do you feel UTI-wise? xx

Thank you @stopthemachine
Yes I'd rather keep taking it if possible.
I know this sounds ridiculous but I'm not actually sure where I'm up to with the uti because it's hard to tell what's side effects and what is uti.
The pain on urinating actually went last week but infection still showing on dipstick and culture.
I've still got frequency and urgency plus a dull ache in my side.