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've got a urology appt tomorrow! Last week I had to go into hospital 3 times (thankfully as ah outpatient) for IV gentamicin to kill off a klebsiella infection that hadn't responded to oral antibiotics. For the first time since December, I have no back pain, and my lower abdominal pain has gone! Just goes to show I had a horrible infection in there that needed a really strong antibiotic to kill it. My issue now is keeping the infections away. I've had so many antibiotics, I dread being told I need more. Sent a sample off on Thursday (requested by GP) and hoping it comes back clear.

@dahliaaa (and anyone else struggling with this). I would really recommend going private if you can afford it. I had so many GPs dismiss me, telling me there was no sign of infection or that it was interstitial cystitis (now called painful bladder syndrome) and trying to give me Pregabalin. All this despite a lengthy documented history of recurrent UTIs/kidney infections. My urologist did conclude that I probably do have painful bladder syndrome/urethral sydrome BUT in addition to severe recurrent UTIs not instead of. He really listened to me and I'm very glad I went to see him when I did.

Things that worked/are working for me:

• Cefalexin (now taken as and when I have a trigger, e.g., sex or having to hold my bladder longer than I should) or if I feel a twinge/any sort of sensation that might suggest infection starting. Cefalexin has always been the one antibiotic that worked for me but this has replaced a combination of long-term prophylactic Cefalexin and/or a long, high dose course if I ended up with an infection. So it's much better as a far lower dose overall.
• D-Mannose - 2000mg per dose plus an additional dose either with a twinge or with a trigger (I sometimes forget but it's always been ok). Some sources recommend 3000mg every three hours during an active infection but that hasn't been through clinical trials and I've never had to put it to the test.
• Optibac probiotics, intimate flora for women - taken daily. I increase to two tablets if I think I'm at risk of thrush for any reason.
• Ovestin (vaginal oestrogen). I'm 43 and I think I'm in early perimenopause. Women can start needing vaginal oestrogen from their late 30s so do consider it if you're of that age, even if you're not having obvious perimenopausal symptoms. A gynaecologist suggested it to me and I think it has helped.
• Rigid cystoscopy with bladder dilation and biopsy. Awful pain afterwards but it is a treatment for painful bladder syndrome and my pain did clear up afterwards. Just a shame it had to get worse before it got better! It was also worth having for the biopsy, which showed MAST cells in my bladder lining and muscles (can be indicative of painful bladder syndrome but also of MCAS, which I was already certain that I have).
• When I have a painful bladder flare (not infection), pelvic floor stretches, heat and relaxation helps to calm it down. I also immediately switch to a very bland (beige!) caffeine-free, alcohol-free diet. I've discovered that if I do this immediately, I can usually reintroduce normal foods and caffeine within a few days. If I wait until it's bad it can be weeks before I can get back to normal. A lot of food and drink can be a very strong bladder/urethra irritant so it's worth reading up on. Obviously if you have an infection then you need a prescription ASAP but for painful bladder/irritated urethra it's worth doing.

What hasn't worked for me:

• Most other antibiotics.
• Hiprex. I've never had pain like it, the burning was literally like peeing acid.
• Cranberry. Doesn't do anything and there's actually no evidence anyway. During an infection/flare up cranberry juice should be avoided as it's very acidic but no harm in drinking it at other times.

If you're in/near North Yorkshire I would strongly recommend the urologist I saw, feel free to PM for details.

@SwordBilledHummingbird that's really helpful thank you.
I'm using vagifem and taking the optibac probiotic. (I tried cranberry tablets but they made discomfort worse.)
I didn't use DMannose initially because my original infection was proteus and it doesn't work for that apparently but now that it's 'mixed' I'm going to try it.
It's so useful having all this info from everyone. Thank you !
(Have sent you a PM.)

Hope your appointment goes well @Covidwoes. I'm sorry you've been through such a tough time with it.

I've replied @dahliaaa :)

Now that I've done the thrush treatment I need to decide if I take the further 7 day amoxicillin course that the nurse gave me.
The mixed bacteria culture doesn't advise on any antibiotics because not one bacteria standing out but because amoxicillin was indicated originally they've said to try it one last time because at least it's taken away the pain when I actually urinate.
I think I may as well give it a try as a final go before I look to go private but slightly worried about taking so many antibiotics in such a short period of time. I hadn't had any ABs for a good 10 yrs or so and then before that it was another 10 years.
In the last 8 weeks I've have 3 days Nitro. 7 days amoxicillin. 3 days trimeprothim (had to come off because of side effects - couldn't stand up ) and then another 7 days amoxicillin.
We've got a couple of serious family health issues going on so I'm trying to quietly get this sorted in the background. That's also the reason why I haven't gone private yet as kept hoping it would just miraculously disappear.
Anyway just waffling now.

Don’t know if I’ve posted this previously but it’s worth getting a Urokey test from Regenerus Labs. They test for thousands of types of bacteria and are therefore more thorough and in depth than the standard NHS tests that haven’t changed in over 60 years. The Urokey test will find all bacteria in your urine and their pharmacist will prescribe what is needed to clear it xp

@dahliaaa hi, I know what you mean about the Antibiotics. I had about 7 courses between June - September last year. That element caused me xtra worry but actually looking back I don't see how it would have gone in the end.
I very often had mixed growths and if I'd know about the private labs back then I would have done that as maybe I would have been prescribed the appropriate AB. The one that worked in the end for me was Ciprofloxacin, which my GP wouldn't prescribe as it has a black box warning. It was a urologist who prescribed it at a private consult.

Thank you @Tidsleytiddy I'm looking at that one or the Focus Labs one. Does anyone know which one is better?

I've started the 7 days of amoxicillin and once they are out of my system for a few days I'm going to do one of the private. I've got a blood test next week too.
I'm on a waiting list for an ultrasound but I'm guessing that will take a really long time to come through.

This journey is almost identical to mine and I'm now off the antibiotics for a trigger and have been ok for the last few years. Only had two breakthrough infections both from using period pants.

Thank you @Lliria
Glad things improved for you @LostittoBostik

Sorry I can't remember if I've already asked this. Does anyone know whether Focus or Regenerus are the better tests? Thanks

I have no experience of either, but IIRC Focus don't prescribe do they? I think they just write to your GP with recommendations. Which is fine if you have a GP who is likely to follow the recommendations. Whereas Regenerus prescribe, though obviously it's a private prescription.

I'd be interested to know whether it's worth doing Regenerus vs going to the Malone Lee clinic in Harley Street though. I think the latter might be cheaper but am not sure.

Thanks @arejcenencehche3uh9f3

Hi. Regenerus got back to me with the results really quickly; within a few days. They give you the option of using their pharmacist. The pharmacist will ring you to discuss the results and what antibiotics he is prescribing for each bacteria. I did approach my GP with the findings. She was reluctant to prescribe based on results from a source other than NHS testing so I used the lab pharmacist. They call you for a chat then put the drugs in the post. Brilliant service. All in all cost me about £350. £300 for the Urokey test then a charge for the antibiotics. Highly recommend x

Really useful @Tidsleytiddy - thanks

Just adding an update.
Had another 7 days of amoxicillin. Didn't make any difference unfortunately and still uncomfortable all the time and feel like constantly need the loo. Making everything difficult.
Still waiting for ultrasound appointment but think that could take quite a while.
I have sent off for a focus lab test. Will see what that shows up and go from there.

Has anyone done the private Focus test.
I've received the test. Just need to wait a few more days until antibiotics completely out of system.
It looks like you send two urine samples back. It doesn't specify when you do the second one. (Says 1st one should be first urine of day.) Does anyone know ?

Hi @dahliaaa when I did the focus test it was only one sample to send away. What is the wording of it? Sorry cannot be of more help

Thanks @jazzyclouds. I might try and give them a ring as it doesn't mention a second sample on the leaflet.
I can't send for another few days anyway as need to wait till antibiotics completely out of system.

@Lliria can I ask how you got on and got this treated in the end? TIA

Can a severe UTI leave the area feeling inflamed for quite a while? I still feel tender since mine, though urination back to normal, no burning and no blood in urine (have been back to doctor) I'm just left with a tender abdomen low down, like it's been bruised but I suppose all the tissues take a while to fully heal

@lizzowhiz Yes, it most definitely can, unfortunately! Hope you're feeling better soon.

@SwordBilledHummingbird thanks for the swift reply. Did you have lingering inflammation, or do you know how long until I feel totally back to normal? I wouldn't say it's painful, more discomfort and makes me conscious of my lower abdomen all the time, a sort of general bruised sensation.

I'm now on vaginal oestrogen after discussing with my GP as I really want to prevent a recurrence. I think my UTI was a bad one as I've only had the occasional mild one over the years but this really floored me, I had blood in my urine, I was yelling with pain when urinating and almost vomiting - I think it was heading to my kidneys if not already there.

@lizzowhiz It could take a while, weeks or maybe even a month or two. All my UTIs are severe but the awful bout I had last year was the first to leave me with lingering pain/discomfort and it did take a long time to fully clear up.

Vaginal oestrogen is a good idea for prevention of another infection, I also take 2,000mg of D-Mannose every morning and 500mg of Cefalexin with any trigger or even the slightest onset of symptoms.

I'm struggling today. I think just feeling run down by it all. Feeling so uncomfortable with the constant feeling that need the toilet.
Sorry not really asking anything.
Planning to send off the private focus test on Monday then will be a week until results come back.
Feel a bit deserted by the gp but then I don't think they necessarily know what to do with anything other than straightforward uti's.