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.

@Sugarplumfury are you able to purchase hiprex or does it have to be prescribed? Have you ever tried reducing the sachets?

@Lliria I'm so sorry you haven't felt well enough to go away. That's such a shame, I bet you feel really disheartened. It sounds awful and very painful when you have these bladder spasms. Is your bladder uncomfortable when not having the spasms too?

I am grateful that I don't seem to have any of the urgency or bladder spasms most of you seem to have. Mine is just a constant dull ache that never leaves but makes my bladder feel full so I do feel like I need to go often. I've tried some cystocalm sachets today- not really finding any pattern with things that help or don't help though 😕

@Pengydog yes , when not having bladder spasm I feel I have a dull period type pain. It's awful, just don't understand how I've got to this point. The spasms can last ages as well. GP gave me bladder meds for overactive bladder but tbh I don't think their helping that much. It becomes all consuming doesn't it. My poor hubby desperately needed a holiday, but he understands. I just didn't feel confident going away😞

Maybe bladder feels full because theres inflammation ?

Lliria. By the look of it you can get it from an online pharmacy if it’s been recommended by your GP. But it’s £35 for 60 tablets. My GP put them on repeat prescription when they were prescribed by the private clinic, as well as the Cefalex antibiotics. I get 90 1g tablets and am taking 2 a day at the moment, 3 if I have a flare and then I take the antibiotics too.

@Pengydog Are you taking Nitrofurantoin just now? If you are, you should not take Cystocalm, or anything else which alkalises your urine. Nitrofurantoin works much better in a more acidic PH, so if you take Cystocalm etc it's whole action is to alkalise the urine, then the Nitro won't work as well.

@Sugarplumfury I'm wondering, was it easy to get Hiprex prescribed by the GP? I'm planning to ask but thought they might say I need to see a consultant or something. Do you find it burns your bladder? I'm taking it just now 1 tablet every 12 hours, after a bad UTI. I'm hoping it will kill off any remaining bacteria.

@Lliria I'm so sorry you couldn't go on your holiday. Glad your husband understands though.

So I finished the 5 days of Ciprofloxacin on Weds morning and I had 2 days of no bladder pain at all, it was great! I'm scared it's creeping back in as it started up again Fri night. It's not too bad and not seeming to get worse, but I'm not sure what to do tbh - leave it to see if it ramps up again or calms down? get more antibiotics (the bacteria I have is resistant to lots of antibiotics)? book to see an embedded specialist? get another test? the last two will cost money and I'm on a low income.
I've put myself on a combination of things to try clear it off, I'll report back if any seem to work -

Hiprex twice a day and trying to keep urine acidic
Oil of Oregano
UTI Pro Plus
PACs and Propolis
Vaginal Estrogen (think I'm going to have a fight to get my GP to test my levels)
Various probiotics
D Mannose

@Beurla yes I am taking nitrofurantoin. I didn't realise that regarding the cystocalm- thankfully, I only had one. I'm having the same dilemma myself whether or not to see a private urologist. I keep thinking to myself I'll give myself another couple of weeks and see if I feel better, but then there's no difference in the pain. I think it's £165 just for an initial consultation 😮

@Lliria the last doctor I saw thinks its just inflammation pains as now I'm just +leucocytes on urine samples. Im hoping thats all it is, but I would of thought there would of been a reduction in the pain this far on by now. I'm wondering all sorts that maybe I have kidney or bladder stones irritating my bladder wall? I have had a CT scan but have been told that I won't receive the results for that for a long while yet as they have a massive backlog at the local hospital and are only now working through patients who had scans in March!

@Beurla I paid £180 to see a private Urologist 2 weeks ago as I didn't feel I was getting anywhere. I self referred.
Unfortunately I think it didn't help as he " suggested" a potential PID diagnosis.
My own GP was skeptical as I'd already swabs done and they were negative for infection. She re did them last week just to make sure. I know there are other causes of PID but these aren't usual. Because I self referred he didn't have my recent medical history. Also my supra pubic pain only started after my UTI issues. But now I am confused.
If you do find a private one I'd suggest getting a GP referral. Trouble is if they suggest other testing you d have to decide whether to pay for it or not !!

@Pengydog how long have you had bladder pain for ? Mines coming up to 3 weeks.Im sat here in bed typing this and it's hurting now, like a dull period pain.
Paracetamol doesn't cover it. I'm waiting for a pelvic scan,which will probably show nothing. It gets me down. I just want to not have to think about my bladder for once and I'm sure your the same.

As I said to Beurla the Urologist thought the pain was PID so the consultation hasn't helped.

Beurla. The doctor at the CUTI clinic prescribed Hiprex and cefalex after my first visit. He said some GPs are really good at issuing an NHS prescription for long term use of both and some not so much. Mine was great and never questioned it.

the doctor said to take the Hiprex for 2 weeks and report back any side effects. He said it can cause burning which often wears off. I didn’t have any problems with it and have taken it for about 6 years now.

The clinic I went to has a very different take on diagnosis and treatment. There approach is that no matter what dipsticks and lab cultures may show, if a woman thinks she has a UTI, she’s probably right. They believe that no one really knows what bacteria is responsible for infections as many control patients in large studies have ecoli and all sorts of bacteria present but have no symptoms, leucocites, blood or whatever in their urine samples when examined under a microscope. They are trying to find out what causes embedded infections as they do a lot of research. They think that terms such as painful bladder syndrome and interstitial cystitis are not actual conditions but the result of inflammation due to infection. I went without holidays or luxuries to afford private treatment as I was just so desperate. It was the best money I’ve ever spent I have to say,

@Lliria ,I've had the pain since 3rd July which is when I woke up in the morning and had red wine coloured wee. I managed to get a doctors appointment that morning and they sent the urine sample off. It came back as mixed growth and I got given nitrofurantoin for 3 days which did stop the bleeding but I've had the pain ever since 😕

I could have written your post a few months ago! As soon as I got the correct antibiotics it cleared within 12 hours (possibly less). You can buy Macrobid online or via boots if your doctor is being difficult. You have my complete sympathy - having suffered with them for years they are so awful and can leave you feeling somewhat desperate! Fingers crossed for you!

@Pengydog Yes it's so expensive isn't it. If I see anyone, it will be an embedded UTI specialist. Most urologists don't specialise in chronic UTI, some don't even recognise it. I hope the Nitrofurantoin works for you. It has worked well for me in the past.

@Lliria Yeah I'd be sceptical of the PID diagnosis too. PID from where? Unless you've recently changed partner or had surgery in the area, then that's a pretty big jump and UTI would be a more likely diagnosis. I hope you pain eases soon.

@Sugarplumfury Thanks. I will see what GP says, although mine seem reluctant to do anything, don't seem to have heard of 'new' things (although hiprex is a very old drug, it's repurposing is new) ,they are nice enough but that doesn't help when you are in pain. I am definitely going to see a specialist in CUTI if this does not completely resolve soon. Are you getting breakthrough UTIs then even on the Hiprex? or is it more planktonic flares from the embedded infection resurfacing?

Beurla it’s so awful that despite increasing evidence, the NHS are so behind in rethinking the diagnosis and treatment of UTIs. The Professor who I saw said if the first time a woman went to her GP saying she has UTI symptoms, they were prescibed 2 - 4 weeks of first generation antibiotics (which research shows does not cause the resistance issues of the newer antibiotics or changing from one antibiotic to another when there doesn’t seem a quick improvement), then there would have been no need for him to have set up his clinic.

It’s not treating it for long enough enough that he believes is causing the infection to go from acute to chronic. Just as the antibiotics start to get to work, the course has finished. After it maybe starts to settle, a few weeks later it springs up again. More /different antibiotics are then prescribed for a week max. The whole cycle then repeats. And on it goes until they re diagnose it as interstitial cystitis, painful bladder syndrome or something else.

I got a lot of breakthrough flares initially which really upset me as I thought I was back to square one, but after a few years (mine was really severe as I’d had it for 10 years and my bladder was full of ulcers ), the gaps in between flares got longer and longer, and the symptoms less severe. Now I just take 2 Hiprex . I can’t remember when I last needed to break out the antibiotics. I can go out for the day and need the loo once, maybe twice at most . I don’t think I’ll ever take this for granted as my life felt absolutely blighted by it all. All the horrible instillations, cystoscopies, anti-choligenics, acupuncture, bladder training and being told basically there’s nothing wrong with me, year after year, was a nightmare. Just to go to the clinic in London, have someone listen, look through a microscope at a fresh sample of urine (which is how it used to be tested for, before dipsticks and lab cultures), and say this is a really severe infection, but I can help - felt like I hadn’t been abandoned to a life of pain, loo trips and generally feeling unwell and exhausted (up and down to the loo each night,). The NHS seems to be about 10 years behind with research findings . I know a lot of people seem sceptical about Professor Malone-Lee (well his son and past research and PHD students now), as he has died - but I was ready to beg to have my bladder removed, till I saved up to see him privately.

sorry, I pressed italics and can’t undo it 🤔

@Sugarplumfury where is the CUTI clinic please ?

It’s called the CUTI Clinic , 10 Harley Street.

I saw Professor Malone-Lee who set it up and towards the end of my treatment his son sat in as he was joining his DF. Professor Malone Lee died unexpectedly of cancer within a few months of diagnosis and his son and 2 other doctors took over the clinic.

@Sugarplumfury thankyou. Tbh atm even if I had an appointment I wouldn't feel well enough to travel !!

Lliria. How miserable. You poor thing. If you were to make an appointment, I think there would be a bit of a waiting list, so I don’t think you’d have to go in the next few weeks.

@Lliria sorry to hear you are still feeling so rotten. If I were you I would make an appointment with a specialist @Sugarplumfury mentioned. It may be a while away and even if you feel better by then it will be worth having a specialist properly check you over and give you peace of mind.

@Beurla how are you feeling today? Any niggling pain?

I managed to get hold of another 3 days worth of nitrofurantoin from superdrug online pharmacy to tide me over until Wednesday when I next see my doctor.

@Lliria Are you still on any antibiotics at all? Sorry I forgot. Some things which can help cut symptoms in the immediate are Azo Urinary Pain Relief, Buscopan (for spasms), and keeping a very bland diet - if you look up the 'IC' diet. When do you have the pelvic scan?

@Pengydog I'm not too bad, I've been able to go out and about not using the toilet too much, but yes definitely still lingering pain 🙁🙁. I'm hoping it's from the Hiprex I'm taking, but definitely still inflamed in there. Nearly 6 days since I finished the Ciprofloxacin course.
If your samples have come back mixed growth, you had blood in urine, and you still have white cells, then you could still have the infection. It's a shame it came back mixed growth (the testing methods are very inaccurate), because it would be really helpful to see what you are dealing with and what it is resistant to.

I'm not sure what to do for next steps. I know this in and out by now, I've had it on and off most of my adult life, and even some of my childhood. I guess I will wait to see if the inflammation calms down like it did in January after my infection then. If not, I will get another accurate test and book with a CUTI specialist. I am dreading the cost though, I have limited savings. I'm angry that the NHS acknowledge CUTI exists, yet there is no treatment path yet and only a very few specialists and even fewer on the NHS.

@Beurla how do you ensure you get an accurate test? Yes it is really frustrating that it said mixed growth. I definitely find the pain more bearable when on antibiotics, both cephalexin and nitrofurantoin but when I come off them I feel really awful and drained woth the bladder pain more intense. I have stared to wonder if the antibiotics are just having a placebo affect on me in that by taking any sort of medication is helping somehow!

Ok I've just logged on to my nhs account and on the 4th August I did a urine sample which the locum doctor dip tested and it showed +leucocytes. She then gave me the sample back and told me to put it into a green test tube type thing to be sent off to be tested. The results say mixed growth again but not tested as non boric container?

I had a smear and swab test done on 7th August that has come back clear for hpv but says something about heavy candida growth and something about gonorrhoea? I don't have any thrush symptoms and the nurse who did my smear said she couldn't see anything. I do have a doctors appointment first thing tomorrow morning but I'm getting quite stressed by it all. I'm still taking nitrofurantoin self prescribed but still have awful dull bladder ache 😪

@Pengydog There are a few labs doing the more accurate testing - focus labs, digital microbiology, regenerus microgen. They are really expensive though. The standard cultures are really inaccurate for a few reasons.

Re your test results - it's saying to repeat the test because of 'mixed growth'. Did they repeat the test? Yeah thrush in your swab sample, you could try treating that and see if it helps. Are you having any thrush symptoms? In the past mine have come back heavy candida and I had zero symptoms, but it might be a good idea to treat it if only to rule it out.

@Beurla I haven't done a repeat as the results have only just come in today. I don't have any thrush symptoms, but as you say, perhaps that maybe adding to my discomfort? What do you make of the gonorrhoea comment? 'Not isolated'?

I'll be interested to see what the Doctor says tomorrow morning. 🤔

In my Microgen test it picked up two infections and BV. I had no idea I had BV. I think sometimes it can be without symptoms

@Pengydog I so understand your frustration right now.
Mine too has shown mixed growth the last 2 times. Mine is also a non boric container. Boric acid preserves the urine .
Gonorrhoea in yours states " not isolated" which might indicate it was checked for. I had vaginal swabs taken for this which were negative.
I saw another GP this morning who is referring me to a urologist but she want me to take a week of Cephalexin then a low dose of Ciprofloxacin for 3 weeks.
She thinks it's a low lying infection. Hurrah at last a GP who listened. I've been asking other GPs whether that was the possibility for 2 months.
As for your heavy candida growth it is possible a high swab picked up candida albicans near the cervix. With the antibiotics you you've had it's a possibility and sometimes thrush doesn't show all symptoms. I had it once picked up on a swab and I didn't notice any discharge but my labial skin was red.
This ongoing situation with your bladder is awful and I'm the same.
Hope your GP appointment goes well for you.
I still don't get why so many mixed growth samples come back from labs. Maybe when their left at the surgery where it's walm the bugs change 🤔