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.

Meant to ask you, did you have crampy ,spasm like pain when your symptoms were bad ? I started with this when my symptoms returned a couple of weeks ago - felt like a baby kicking !

Yes this was one of the worst symptoms for me. I didn’t have it at first but when the symptoms started coming back the first and second time it felt like my whole pelvic area was in spasm, and it felt like when I was pregnant and baby would kick down towards my bladder!

Hi @Honeybeebear I'm glad you are feeling mostly better x
Hi @Lliria That's awful, I am in shock at how we are treated. Hopefully you will improve on the Cipro.

I'm on the end of day 2 of Cipro, after 3 weeks of Nitrofurantoin didn't fully clear it and the burning came back. Still in bladder pain, but it has subsided. It's really dragging on, I just hope I can get it cleared. Down below I am really dry and burning. No idea if it's thrush, BV, hormonal, or the E Coli is in there. Really need to get to the bottom of it, waiting on swab results from the GP. If that doesn't show anything I'll repeat the Microgen test. My poor friendly bacteria as well!

By the way, after you clear the UTI, you should get some probiotics designed for vaginal flora. The studies show it helps prevent it happening again and restores the natural balance.

Yes re the crampy, kicking pains. It's bladder going into spasm because the inside walls are irritated. I can sort of handle it when awake, but when trying to sleep it's the worst. I had it for years at one point. Buscopan can help with it.

Thanks for replies. Yes I've got probiotics and d mannose and oregano oil capsules.!!! I hadn't had a UTI for 3 years before this current one. When this is over I'll be doing everything I can to prevent it recurring. It's not just physical is it, the whole thing has been mentally draining x

How's everyone today ? X

Hi all. Been trying to keep up between holiday and work. Coming back to report that I had a good holiday, finished my Amox 7 day course while out there. Then on Saturday I could feel the jiggles again. Just got worse so I had to take paracetamol at 3am this morning 😫 did a Tesco Newfoundland test but I knew it'd be positive. It was. So GP very good again. Had given me another 7 day Amox course but 3 times a day 500mg. I'm sure it was twice a day last time. I also asked for an appointment to discuss chronic/recurring uti which they are sorting. I can't carry on living on antibiotics! My go dip test I dropped off was also ++ leukocytes but nothing else which is reassuring I suppose. Normally I have blood as well. I've been taking d mannose and probiotics. I'm also off again to Europe on Sunday morning with just my daughter to stay with a friend. So hoping feeling better by then.

Glad some feeling better and sorry some still suffering.

On we plod - the UTI Brigade! 😫

It was 3 times a day before sorry. Just looked it up.

I'm almost finished the Cipro. Still got slight burning after peeing and my trigone (neck of the bladder) feels really inflamed and like there is blisters on it.

I'm praying that it's just residual inflammation and the actual infection is gone.

@LittleMonks11 Can't remember if you ever had a culture and sensitivity done? I ask cause mine is resistant to Co-Amox. It's also partially resistant to Cipro the one I am taking, but there weren't many other oral options left.

@Lliria How are you doing?

Every time they've sent it off for a culture it comes back with nothing or mixed growth. They've never identified the bacteria.

@LittleMonks11 really pleased you had a good holiday. sorry it’s come back again- hopefully the antibiotics will start working quickly.

I had my first day back in the office yesterday in about 4 weeks and I felt exhausted when I got home! I felt a bit of burning coming back yesterday evening but I think it was due to not drinking enough water in the afternoon.

I'm in a similar position - it's crap isn't it ! Since June I've had about 5 courses of ABs ! My ladybits are so sore but I have taken a thrush treatment.
I was due to drive to Spain on a road trip today but told hubby couldn't go so we ve cancelled/Postponed. We really needed the break as well. This situation is affecting my life. Like you I will be asking for a referral/appt to discuss chronic UTI.. my last 3 msu samples have shown mixed bacteria and the last one WBCs and blood also. Whatever bug it is the ABs aren't getting it. I've just finished a 5 day course of Cipro - awful. I was wondering about sending a sample to a private lab but not sure if my GP would be happy to prescribe from their findings..
I hope you get to go away feeling better. Don't know about you but I'm almost nervous about going away now and that's not my personality 😔

Hi, I finished a 5 day course of Cipro yesterday! It made me feel so sick by the end. Like you I still feel a bit of something. My bladder is still in spasm a bit especially at night, but as you say our infections may have cleared but inflammation persists. What length course of Cipro did you have and what doseage ?

@Lliria I just finished Cipro 500mg every 12 hours for 5 days. Before that Nitrofurantoin for 3 weeks. Mine showed as partially resistant to Cipro though, so I'm just praying that despite that, the combination has been enough to treat it.

If it comes back, I'm going to do another private test, and get an appointment with an embedded UTI specialist.

I had same doseage for 5 days. Don't think I could have taken anymore felt so nauseous by the end. It's a strong AB - my GP said it should be kept under the kitchen sink !! I had my last tablet yesterday and still feel a bit sick but I suppose it takes a day or so to get out of the system. I ll be gutted if it comes back , really don't want to take anything else. I'm intolerant of Nitrofurantoin and allergic to Trimethoprim so I usually end up taking strong ABs.
Which private company do you use ? I was looking at this but not sure if my GP would prescribe any recommended treatment if it was a lab the practice weren't using
I was due to go ona driving holiday today but didn't set off as felt ill. Now I've finished the Cipro I feel better, hubby suggested setting off in a couple of days instead but I'm now wary of going away . . .

@Lliria I actually didn't feel any side effects at all this time. I took it back in January and had weird tendon pains.

I have used all of the three in the UK.
Focus labs does an EQUC test which GP may be more likely to accept as it's still a culture, just more in depth, for this one I think you need to be off antibiotics for a while though (think 10 days but could be wrong).
Then there is Microgen which is DNA based, and also Digital Microbiology which is also DNA based. It's best to be off antibiotics before them, but not absolutely necessary.
Doctors in other countries notably the US are using these tests more and more now. They are all really expensive. Your GP may prescribe based on the results, but I suppose they could choose not to. There are specialists you can see who will prescribe, but again the expense. The LUTS clinic you can be referred to NHS I think, if in England.
I've had UTI problems for many years and I find the tests really useful. Few of my many many NHS cultures have ever come back 'positive' for infection, and that's only if the infection is absolutely raging and there's blood or a fever, and the sample is concentrated enough. Their threshold is far far too high at 105 of one single fast growing organism. A better cut off which some countries use is 102 and of course the standard culture ignores that infections can be caused by organisms which grow slowly (Enterococcus is one I think).
I find it useful to know what's in there, and I feel they are accurate, since I have taken part in trials when I had no symptoms and sure enough, only 'friendly' bacteria were found (the bladder is not sterile), when I've had symptoms, the testing picked up the culprit! This infection, both the NHS and DNA picked up the same E Coli, and concerningly, it shows quite a few resistances so I'm scared it won't clear. I think in say the 1960s, these bugs were not so resistant to antibiotics as they are today, and women were given a 2 weeks course immediately not 3 days.

I'm really sorry you didn't get to go on your driving holiday. It really puts a dampener on everything doesn't it. Hopefully you can go soon.

I'm going to start Hiprex now to hopefully kill off any remaining bugs. It does burn the bladder though, so not sure how I'll know if it's the hiprex or the infection returning.

Let me know how you get on.

Sorry that should have said '10 to the power of 5 per ml' and '10 to the power of 2 per ml'

@Lliria I hope you’re feeling well enough to go in a few days.

I know what you mean about being wary of going away, I felt like it could return at any moment but I was glad I took some time away as I think it helped me, although I was on edge a bit.

I’m feeling a bit low today, not felt quite right all day. Everyone I feel I’m getting back to normal, it’s like a step back. Not sure if it bladder or thrush this time. Really getting fed up of it all now.

I'm thinking of going away Sunday but even then not sure.
Think I understand how you feel as I've felt that way too, I can't be bothered with the everyday because my mind is taken up with all this UTI crap.
The antibiotics I've taken haven't helped with my mindset as I'm worried I will do harm by taking so many.
How are your bladder symptoms ?

@Lliria bladder symptoms are mostly ok, I’ve had 2 days since coming where I’ve started to feel burning/tingling and a few sharp pains. Both I think when I haven’t drink enough water.

I’ve just taken a Fluconazole tablet, as I think the pains seem to more itchy than burning today.

I’ve not taken any antibiotics today as I finished the trimethoprim course the consultant gave me last night.

I'm feeling better generally since starting Amoxicillin Tuesday lunch but still have bladder pain. It's ramped up a bit again since yesterday and I'm wondering if it's because I drank some pineapple juice last night my daughter other yesterday.

Have just taken some ibuprofen.

I am due to fly Sunday morning and am definitely going!

They have sent my latest sample off so we'll see what transpires. Still waiting for appt to come through do will chase that today.

Do you think I should take probiotics now or once I've finished the ab?

Hope you get away!

I would start probiotics. I've been taking mine the whole way through all my antibiotic courses.
It's the bladder pain for me that I'm struggling with and it's worse at night.
I've finished my Cipro now.
Feel nauseous and light headed today but I don't know if it's bladder related or the start of a migraine !
Feels never ending 😔
I haven't decided whether to go on my trip yet as it's a driving holiday, it's good you ve decided to go otherwise this situation takes over

Thank you

I hope you get away.

Are you taking anti inflammatories? I remember someone saying that should be part of the treatment plan.

Will take the probiotics now then but maybe save the d mannose (the fizzy tablets are so expensive!) to have after to try to keep it at bay.

Yes I do take antinflammatories but probably not regularly enough tbh ! Can't hurt I suppose. I ll be ok for a couple of hours then randomly have painful bladder cramping- feels like bad period pain. I spoke with a practice nurse today who said yes you can get that after a bad UTI. I've had these for 2 weeks now , hope it starts to fade out soon

Hi everyone, have lurked on mumsnet for years but never posted!
Thought I would share my story so far...
On July 3rd I got up ready for work and had a big shock when I realised my wee was red wine coloured. I've never had a UTI before so I was terrified! Managed to get an appointment at the Doctors for later on that morning. Was given a 3 day course of nitrofurantoin and urine sample was sent off to be tested. Later that evening after taking one tablet of the nitrofurantoin the bleeding stopped. On the 8th July I went back to the Doctors again as I was having such an achy tender bladder. Another urine sample was taken and they gave me a 3 day course of trimethoprim to try. By this point the results for my original urine sample had come back stating 'mixed growth '. I ended up back at the Doctors again the following week as the 2nd ample I provided stated no infection but microscopic blood so they gave me 2 weeks worth of cefalexin and a referral for a CT KUB. I think I was only referred for a CT scan as I have type 1 diabetes and the Doctor was concerned I may have kidney stones which caused so much blood initially.
17th July I went for the CT scan, am still awaiting for the results.
Last week I went to see a locum Doctor at my GP practice and she just did a dip test of my urine. It is only showing leucocytes and has done in all of my samples I have provided but when they send them off to the laboratory they come back negative of infection. So my last dose of antibiotics finished on 21st July and I feel no better at all! My bladder feels like it is full and tender constantly and it doesn't sting when I pee but it is uncomfortable as though my urethra is swollen. I'm really fed up as the last Doctor I saw seems to think I'm just inflamed and it will get better by itself but this has been going on now for 6 weeks.
Well done if anyone has made reading my post this far!

@Lliria really hope you manage to get away.

@Pengydog sorry to hear you’ve been suffering with a UTI too. I had that full bladder feeling for a while, I think continuing the antibiotics put the feeling away for me finally, but I too had negative tests by that point. hope you start to feel better soon. Have you taken anything like d mannose or probiotics? I’ve been taking D mannose- I don’t know if it’s helped but scared to stop taking it now just in case!