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'm really sorry you are struggling @dahliaaa. Yeah the GPs seem to have no clue after a couple of courses of antib don't work. I hope you get some answers from the focus test.

Thank you @jazzyclouds

@dahliaaa How did you get on with the focus test?? xx

@jazzyclouds hi it will be another few days until I get the results

Does anyone find some healthcare professionals just don't listen/care about UTIs? I've had five positive cultures in six months, and nobody, apart from my GP, seems to care! A microbiologist recommended I had a scan during an active infection last week. When I arrived at the hospital for it, it was refused, as it was deemed 'not necessary'. The doctor didn't even tell me. The message was relayed through a nurse practitioner.

@Covidwoes so sorry you’re experiencing this! It’s an absolute nightmare. There are small steps being made, for instance, the NHS do recognise chronic UTIs now and there is research work ongoing at an NHS hospital. Unfortunately, it’s a slow battle and I really hope you get the help you need asap.

My GP suggested a antibiotic again that I took the 2nd time round and it did nothing for me…have had to consult a private urologist now.

All the best and hope you get your scan soon.

Yes @Covidwoes I have had really crap GP appointments regarding UTIs. My problem is that the UTIs don't test positive in the not-fit-for-purpose dip tests. I know GPs are meant to take into account symptoms and not just go by the dip tests but the times I have been on nitro or trimethprim they don't seem to make a difference either. I've been on vagifem since this started (about 18 months ago) but I still get these flare ups. I just don't bother going to the GPs now because I don't know whether they really are UTIs and I have another condition that causes pain down there and I don't know what's what. Considering going to the Harley Street Malone Lee clinic to get a proper test to find out whether I've got some old infection that hasn't cleared but I am not sure whether they are to be trusted either.

Bumping to see how everyone's getting on? I'm ok at the moment, I don't know whether that's because I'm on vaginal oestrogen now or whether the symptoms would have cleared anyway. My only reason for the oestrogen was preventative, I was so worried I'd have these awful symptoms permanently. My GP says vaginal pessaries hardly get any oestrogen into the bloodstream, they just act locally so I suppose there's no harm in continuing with them for now. I'd never investigated HRT previously because I was fortunate to sail through the menopause without bother. I'm also popping daily D-Mannose as 'belt and braces'. I may not buy another bottle once these are finished. I feel like it's a case of gradually stopping the preventative treatments to see if they've done the trick or whether I need to stay on them long term.

I’d say it was the vaginal estrogen that’s done the trick. It has for me x

I would say too it has been the vaginal oestrogen for me. I thought it was fizz that caused the odd flare ups but I had a flare up before holiday and I think it's caused (for me) by stress - as I had so much work and organising to do for this holiday. I'm on last day of holiday and have had fizz every night (only on holidays!) and have been totally fine. I don't bother with D Mannose despite having bought several tubes as I understand it's for bacterial UTIs rather than non bacterial.

How are you @dahliaaa ?

@LittleMonks11 It’s probs the estrogen has stopped your bladder and urethra being so sensitive. It has mine. Had to be so careful what I ate and if I had any alcohol I was weeing every 5 minutes x

The vagifem hasn't been quite so positive for me unfortunately but still hoping it will kick in - fingers crossed

I’m not sure if anyone is still on this thread, hope everyone’s doing ok.

I can’t actually believe I’m coming back a year exactly after I started the thread. I’ve had weird pains in my lower tummy for a few days, thought it was more bowl related. This evening I started feeling a bit tingly when weeing so did a dip stick test and it was positive for Leukocytes- went bright purple. I’m really panicking now. I can’t go through what happened last year. I have slight lower back pain a plait like period pain. I terrified, and due to go on holiday in a week or so.

I have been watching this thread and often wondered how you were doing. Typical that it should appear just before your due to go on holiday! Do you take D Mannose? If you have some start straight away.

Yes I was taking 3x 500mg capsules of D mannose each night but recently reduced it to 1. Taken 3 this afternoon and will take another 3 before bed.

I was only thinking to myself at the weekend how different I felt this time last year!

I know I shouldn’t panic but I am.

Oh no @Honeybeebear not again just before going away. I can't remember how you got on top of it last time? Could it be stress-related? Are you going to get some ABs? Really hope it calms down.

Funnily enough I have just come down from a flare up. I have put it down to sugar and stress. Pain in pelvis, belly and feeling crap. Had quite a few celebrations over the last few weeks. Also sleeping badly. I just went no sugar, no caffeine, no booze and it's gone. These flares are very few and far between now thank god. I haven't taken any ABs for a year now I think?

I am still on with the vaginal oestrogen. Started taking magnesium glycine two days ago for sleep, brain and bones and I swear to god they are working already! I slept much better last night.

I also start taking Feel menopause tablets tomorrow for my foul moods!! And I'm going to get some marine collagen tabs as recommended by a friend and various articles.

How is everyone else?

@LittleMonks11 glads to hear the flare up has gone. Good to hear you have been free from antibiotics.

it took about 3 weeks of trimethoprim in the end for me to get on top of it. I think it was the being stuck in a cycle of 3 day courses, symptoms returning but negative tests. I had to go private in the end to get a good 2 weeks worth of antibiotics to finally shift it.

im really careful now with drinking water, hardly have alcohol, but could definitely improve my diet.

I did contact the GP this morning, we have to do an online consult. I said I had a reaction to nitro and needed trimethoprim. They then text me to contact a pharmacy- I did and they only prescribe nitro. Did another online consult but they processed it but didn’t get back to me.

Anyway I’ve drunk loads of water, taken cystitis sachets, taken extra d mannose and I feel a bit better tonight. I also ordered a 3 day course of trimethoprim online in case it’s doesn’t get better by the weekend.

I really panicked, brought back loads of memories of last year.

How's it going? 🤞

Felt a bit better today, no infection showing on the dip tests since Tuesday eve so didn’t take the antibiotics.

i have a constant burning feeling now after using a canesten pessary last night in case of thrush.

That's good. Maybe don't use canestan again if you're not 100% it's thrush.

Canesten can cause irritation. I developed an allergy to it so now take fluconazole for suspected thrush. Worth considering for next time.

@Honeybeebear Hi ,a year on since you started your thread ! Sorry to hear you ve had a flare, it seems worse when you've a holiday coming up doesn't it ? Are you better now ?

I've had a couple of times where I've felt it's all starting but am taking D-Mannose still and Optibac. These bladder issues can cause a worry but for me the worse thing is access to a GP and the varied response .
I hope you have a good holibobs x

@LittleMonks11 Hi, I'm still here ! Think this must be one of the longest running threads ! Sounds like stress could be a factor for your flare ups ?
I've had a couple of times where felt something was starting and sent a sample off but came back negative or contaminated ( although those tests aren't reliable) sometimes I think it's related to menopause and my age (57)
I'm using vaginal estrogen, D- Mannose and Optibac so can't really do anything else !
I hope you have a good summer.

@Lliria hello! how are you doing?
I’m feeling better now thanks, still not quite right but doesn’t look like an infection took hold. The burning seems to be gone.
I’m still doing the d mannose and optibac.
I’ve downloaded the squeezy app to try and exercise my pelvic floor in case it’s the issue. Found I’ve needed to run to the loo a couple of times. It’s strange, I can go for hours not needing to go then all of a sudden it’s urgent after only an hour or so.

@Honeybeebear I'm good atm thanks ! I think it's always in the back of my mind tho ! Do you think your symptoms are gone now, I hope so , you could always take antibiotics with you on holiday x