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.

@Lliria glad to hear things are better for you.
When is the cystoscopy appointment?
I might try the cranberry capsules.
I take the cystitis sachets when ever I feel an any small sign of anything. Not sure they do anything but I’ve been ok so far.

@Honeybeebear it's on the 9th of November. I'm not expecting anything to be found tbh as whilst I've been waiting I've been symptom free !!
I try not to overthink every frequent toilet visit but it's hard not to be anxious about it coming back 😬

@StanleyGoodspeed hi, how are you doing on the Antibiotics and hiprex ?
Are you feeling any better yet ? I do hope so x

I posted ages ago on here.
I saw a gynae in September and she thought interstitial cystitis. I have a urology appointment in December.
I've been sympton free for weeks now apart from one day so not sure what to do.

Keep the appointment! Mine is in 2 weeks and I’ve had the odd goodish day since forever but I’m determined to find out what’s up with me.
If you cancel your symptoms wil come back and you will be on another waiting list
I wept on Monday when I had a text from NHs which on first reading looked as if my appt had been postponed but apparently everyone waiting more than 12 weeks is being asked if they still need their appt. I said yes!

@Parsleymint I would say keep appointment !
I had recurring UTI symptoms for nearly 3 months over the summer and as the waiting list was 6-12 months to see urology in my area I asked to be referred privately. I still waited 6 weeks for a Cystoscopy after the first appointment. I had that last week and like you I had been symptom free for whilst waiting for appointment ! I nearly cancelled as this cost a lot. My test showed nothing sinister but I admit I do feel relieved to know that and now I know it was literally a UTI but I wouldn't have found that out had I cancelled

@Lliria Did you tell them your symptoms had gone and they still wanted to do a cystoscopy?

@Parsleymint basically yes ! But I had episodes of microscopic blood in some of my urine samples and I'm 57 . I actually think I qualified to have this on the NHS as urgent because of the blood but I was told no it's routine !
It doesn't really change much apart from I know I don't have bladder cancer.
It won't stop me getting another UTI in the future but Urologist did say I could take daily Antibiotics if it comes back - not sure about that tbh as I did that for a year in my 30 s and I still got symptoms 😬

Had my urology one stop clinic today. Flow test, 100 ml residual, cystoscope showed no visible tumours or inflammation so that’s very promising. Having a CT scan tomorrow as apparently my kidney stones are enlarging and that might be causing the microscopic blood traces. But no definite answers - the consultant thinks it may be interstitial cystitis and put me on amytripelyne for a month.
Im not convinced - as I don’t have inflammation or pain. Consultant wouldn’t comment on my concern it might be another prolapse as that would be a referral to gynae - again
so I’m focusing on the positive, it doesn’t look as if I have bladder cancer

Hey how's everyone doing ?

I had a Cystoscopy 12 days ago. I had been symptom free for 5 weeks.
The scope showed normal bladder but a week after the procedure I started with UTI symptoms and started to feel shivery and feverish. I had to go back to the clinic and they gave me 7 days Nitrofurantoin in case infection. I've got a follow up with the consultant in 2 weeks. So the Cystoscopy I had to check why I was getting recurring UTIs has set off a UTI-the irony.
I have bladder pain as well which I'm hoping is from the inflamed bladder. Only been on Nitro 2 days so hoping for a turnaround in next day or so.
Has anyone else had a Cystoscopy induced infection ?
I asked the consultant what the risk of infection was and he said about 40% but didn't give Antibiotics after .
The NHS webpage lists infection as one of the main risks !
I am seeing a private Urologist as the NHS wait was 12 months ! However on the day I was ill I called them and they saw me straight away- which was good as My GP practice was on black alert that day so no appointments!
I'm hoping this infection was just bad luck 😔

Yes I’ve got 3 days of nitro because I’ve felt so uncomfortable after the cystoscopy. I’ve had blood in wee on days 4 and 6.
Waiting for the results of my CT scan now but that’s a bit of a sidetrack I think as the urologist was far more concerned about my non troublesome kidney stones than my horrid horrid uncomfortable bladder pressure.
Im so fed up, it’s all come back with a vengeance after a couple of easier weeks.

I went out this afternoon to the library ( urgently needed a wee in there) went around the supermarket feeling horrid ( needed a wee in there) got the washing in and put the shopping away( another wee) watched tv whilst DH got the tea early so I can go to choir ( another wee after tea). So 4 wees in 3 hours.

I found the cystoscopy quite painful to be honest and hope I don’t have to have another.
The urine collection ( had to hold on to a full bladder for ages!) showed that I had 100ml retained. Not sure if that’s an issue or not.

I’m sure my latest test will come back negative but am taking the antibiotics anyway just in case

@Storynanny1 yes I would take the Nitro if you feel uncomfortable,won't hurt and would stop a full blown infection.
I too don't expect the culture the hospital sent off to show anything but I definitely had UTI symptoms as was feverish . Interesting the first few days straight after the scope I was sort of ok.
I just don't know why the consultant didn't give me some antibiotics after the procedure just in case, would have saved me having to go back a week later !
I'm like you in that I go for lots of wee's and as I've gone thru menopause it's got worse.
I just want to have a good set of months without issues, feels never ending doesn't it x

Yes xxx
I can see on my hospital website that as well as gynae and urology there is also a dept called urogynae which I think would suit my mixed symptoms better
I told the urologist that there are days when I’m so distressed by my discomfort and how it’s totally changed my daily life, that I don’t care if I wake up the next day or not.
Im sure the large non troublesome kidney stones that I’ve had for at least 15 years are a red herring! Although they may be causing the bleeding they are certainly not causing me to sometimes be barely able to walk or sit comfortable.
Ive only been given 3 days of nitro and low 10 mg of amyltripine ( which can be increased) “ just contact your gp” says the consultant as if it’s the easiest thing in the world!
Im so fed up
But, I might now be able to get travel insurance with a named condition - even if I don’t think that’s what I’ve got!

@Storynanny1 Yes, the contact GP comment is a problem in itself.
The day I realised I probably had a UTI my GP practice was on black alert ( again ) so no appointments /phonecalls . As my cystoscopy was done at a private hospital I called them and luckily as it had only been done recently they were obliged to see me under their aftercare policy.
I will say tho even though I have a 7 day course I'm only on day 3 and feel awful nausea with it,but need to push thru.
I agree with you about urogynae. My GP did actually refer me to that department months ago and I'm still waiting that's why I paid to see Urologist,
Not prepared to use mine and hubby's savings to pay for another consultant tho. I've often thought if money was no object I'd totally circumvent the NHS and have private everything !!!
I'm sorry your in pain daily, do you think it would be worth asking your GP to refer you to urogynae?

I’m going to do an econsult and ask for a referral. I’ll wait for the ct scan results first though

I’m a great supporter of the nhs and didn’t really want to go privately and as it’s turned was wasted £6000 anyway but gynae waits here are 15 months!
I looked on spire website this morning and even they have no appts before February.
Ive decided to write Interstitial on the travel insurance ! Even though I’m very convinced I haven’t got that. I read out the nhs symptoms to my husband last night and he said it doesn’t sound like your condition.
Im determined to stand and sing in my choir concert in 2 weeks - on a seat at the back by exit for toilet….

Although I’ve just realised if I ask for a referral I’ll be “ awaiting investigation” again which will cancel the insurance again
Im keeping my fingers crossed for another period of feeling less uncomfortable!

Hi. Just picking up on you saying the weeing has got worse since the menopause. Can’t remember if I’ve posted before (upthread) but do try some Ovestin cream. It’s on prescription from your GP. It’s changed my life. Xx

I’ve had similar issues for a decade. Thankfully I got in at the LUTS clinic in London quite swiftly and have remained with them. Got semi discharged a few months ago but I can self refer back anytime in the next two years. They always say if you have uti symptoms then you have a uti. Regardless of test results

I’ve had a follow up letter from my cystoscopy (no ct result yet) which says my next appt will a telephone call in May! I may well have lost the Will to live by then
Also a call from my surgery saying my latest urine sample came back with an infection resistant to nitro so have been given amoxicillin for 5 days.

@Storynanny1 may ! How irritating to wait that long.
At least you ve got a prescription for the right antibiotics. I'm still on the Nitro and hoping it works. I've heard nothing about my test so it's either Negative or the Nitro is the right one. The sample I gave was like water as I'd drunk loads !!

@Lliria
Sorry to read you have an UTI after the cystoscopy. I hope the antibiotics are working. Are you starting to feel any better?

I've noticed that following the ongoing infection I had, I now wee a lot less than I was. I didn’t realise, but in the year leading up to it I was going for a wee all the time, and remember always thinking about needing a wee whenever going anywhere. I wonder if I had something low level underlying for a while.

@Honeybeebear Hi, aww thanks. Am on day 5 of a 7 day course and it does seem to be improving, although now I've got the bladder cramp/ spasms back and as we know they can take a while to calm down.
Interesting what you say about the frequency, I've thought this . If I think back to the summer when I first started with the UTI issues I wasn't feeling right for at least a month before. Maybe a UTI takes a while to grab hold. Now you've had your Antibiotics maybe the underlying inflammation has resolved . Are you still using D- Mannose ?