8 weeks of UTI - where to go from here?

[OnePeachOrca]

Hi all, I’m new here and feeling desperate.

Had a uti 8 weeks ago that I thought had cleared with 3 days of nitrofurantoin but came back 10 days later. Urine sample confirmed E. coli and was given a further 7 days of nitro but it didn’t help this time. Was then given a one-off dose of Fosfomycin which did nothing and I’ve had symptoms ever since (bladder pain after weeing, feeling desperate to wee straight after going, intermittent urethral sting/itch and wee itself sometimes stinging and feeling hot).

While symptoms aren’t as excruciating as the initial uti onset, it’s really messing with my life now and I’m getting very scared that my original infection is embedded and that it’ll never go away. I’ve only had a few symptom-free days in total over the last 8 weeks (most of these were during my period) and the fear of never clearing it is totally consuming me. I find things tend to calm down at night and then flare up again in the afternoons/evenings.

Bloods normal, urine samples have all been negative since that one that grew E. coli so not able to get more abx and I’ve got an ultrasound tomorrow to rule out other causes. Had a positive swab for BV which seemed to clear as a few days later a swab revealed no infection (so no treatment given). Been taking waterfall d-mannose which helps to ease symptoms when they get bad and started a few days ago on optibac (to help with the BV).

Just looking for some advice and any similar experiences. Anything like this that eventually went away would be amazing, but not holding out much hope. I feel I’m headed down either the embedded or interstitial route and both terrify me as I’m mid 30’s with a one year old and already finding it hard to cope. Thinking of a private consultation if no progress made soon but unsure who to see as this greatly affects treatment and overall approach taken.

Thanks for reading and big hugs to anyone else suffering xx

Thanks again @BerthaAntoinetteMason for the information. My current plan is to check I have no vaginal ulcers when I get looked at on Monday, self-treat with Fluomizin (broad spectrum and covers a whole range of bacteria types) and, if no better/it comes back, then do the private lab test to pinpoint the exact bacteria and go from there. In this case, if the GP is uncooperative with the lab results then I would pay for a private consultation with hopes of being taken more seriously and to get the right treatment. I’d also make contact with the hospital where I had my colposcopy/cautery once I know if it’s definitely a vaginal issue.

In the meantime I am just hoping it will be either a vaginal or a bladder problem rather than both- as that would be even harder to treat overall and horribly expensive if I have to see to both issues privately.

@Gimmlett thanks for sharing your experience and I’m really glad the Fluomizin worked for you too. I agree, I’m very apprehensive about self-treating, however, I had a positive swab for BV 6 weeks ago (which the GP left untreated) and it’s a common treatment for that too with better tolerance than the antibiotic equivalent which is reassuring. So I’m justifying it through the ‘BV’ issue but secretly hoping it will knock anything else on the head down there.

I’ve been taking Optibac for intimate health for a month now, so will probably take 2 capsules rather than 1 during and after the Fluomizin treatment and hope for the best, as I don’t think I could get hold of the ones you used in time. They do sound great though and I think it’s probably a far more effective way to target the flora.

@BerthaAntoinetteMason yes I did get them shipped from the US but they were the best I could find.

How are you doing @OnePeachOrca ? I hope you are getting somewhere. Xxxx

How are you doing @OnePeachOrca . I very much hope you are feeling better xxxx

Hello again and thank you so much for checking in.

I was examined by my GP a couple of weeks ago and given a course of metronidazole to try as she suspected it was BV (after my previous positive test) but all swabs came back negative again and she is now in the process of writing to gynae to ask for advice as she’s not sure what’s going on. The metronidazole didn’t seem to help much, although I did have two symptom-free days immediately after finishing which was odd. So I am unfortunately still in the same position. She did give me the green light to try fluomizin if I wish, as I was worried about whether I could take it due to cervical ectropion. So that is my next step once my period has come and gone (due on in a few days so no point starting now). After that will come the private lab test.

May I ask, regarding the fluomizin, whether the residue was easy enough to come out? It may seem silly but I’m not great with putting things up there and read that it doesn’t fully dissolve so am worried about having a residue lump getting bigger and eventually just stuck up there!

Hi again @OnePeachOrca . I'm sorry to hear you are still having trouble. The fluomizin didn't cause me any problems with residue. I guess it worked its way out. Xxx

Ah thank you for the reassurance. I think it’s worth a try as it covers such a range of bacteria so will post an update once I’ve tried it.

Just an update that I’ve decided to skip the fluomizin and go straight in with the private test via Digital Microbiology. Still have to wait a week or so as will be on my period by the time the test kit arrives but I think I really need to see what’s going on before trying more drugs, as it could be a totally pointless endeavour until I see which bacteria I’m dealing with.

Will be doing the urine + vaginal test and will update again once I know more! Praying this will give me some answers and an end in sight. Thank you to anyone still following this thread. @BerthaAntoinetteMason in particular, I am very grateful for your support and for continuing to check-in. Xx

Hi OP, sorry to hear you’re still suffering with this. I posted on your thread with the same situation. I’ve tried to PM you but it appears PMs are still disabled. I really wanted to let you know that homeopathy has helped me massively, but I know the MN community don’t really believe in it! I can honestly say I feel back to normal now.
Even though my kidney infection appeared to clear up, I still had the awful constant stinging, burning and crawling sensation in my urethra. Samples showed no infection of course. I could have ripped my own bits off at one point! But that’s all gone now, symptom free. I’ve attached a link here, the biggie is Cantharis, it’s really helped me. Worth a shot. Easily purchased from Amazon. Wish you all the best and hope you start to feel better soon.

www.ayurclinic.com.au/homeopathic-remedies-for-uti/

Hi @diggermama, thank you for your advice. I didn’t realise PMs aren’t working so thanks for sharing that info with me on the thread instead. I did actually look into homeopathy as something to try if all other avenues fail, although I’m a bit on the fence as to how much I believe in it and don’t know much about it at all. Hearing that it’s helped you so significantly though makes me think I might give it a go if the private lab testing doesn’t pick up anything as I shall have to start thinking a little more outside the box in that case. How long did it take you to feel better since starting it? Xx

Hi OP, so glad to hear you might consider this and it might help you. I also didn’t know anything about homeopathy at all, I’ve since found out you can have consultations with a homeopath etc but I figured out the tablets I’d need through internet research and just bought them online.
It only took a few days before I started to feel like it was a miracle cure much better. Cantharis is what I took initially. I’ve since bought Staphysagria because (touch wood) my sex life is now back on track! Different tablets treat different aspects/symptoms of UTI’s.
I’m so impressed I’m going to look into healing my migraines with homeopathy too. Let me know how you get on, I really hope it works for you too. All the best x

General update: finally sent off my test kit with Digital Microbiology this morning so should see results either Friday or Monday. Curiously, symptoms improved a great deal during my period but ramped up again as it trailed off. In the meantime am very nervous that it won’t show anything (or that something will be missed) and the prospect of it being potentially something more complicated is concerning but I’m trying to stay positive. Am a little worried as I wasn’t very symptomatic first thing, but they ask for the first wee of the day and wanted to get it sent back asap after doing it so did the swab at the same time before feeling symptoms today. Hoping it still gives me some much needed answers as I have had the usual burning/urgency today.

Will update again when I get results incase anyone is still following this thread! Thank you again to all for your support.

Have you ever tried cranberry extract tablets? They are really good when it comes to reduce the tailing symptoms for me.
Cranberry juice does not work for me.
Not sure if they do work for most individuals or not.
In my case, the tablets were ok alongside the antibiotics. You can ask the pharmacist.

I posted on your link under a different user name, but was basically saying I had a uti every single month for 2 years. I had loads of tests and they couldn't find anything and samples always came back clear, although antibiotics would always sort it out even though screenings showed no infection.
I had tried cranberry, d mannose, 3 solid months of antibiotics etc etc.
Just wanted to update that I started taking intimate probiotics and I've not had a single uti for almost 3 months.
Just wanted to put it out there. I believe I had e-coli (as occasionally screenings would come back positive for e-coli) and it kept overrunning the good bacteria. Anyway I'm not sure on the science behind it but it's really really worked!

Sorry if repeating what’s already been said but do push for more investigations from your GP - have they excluded chlamydia ( in uk you can get tested for this via sexual health often by post if you prefer) - yes it’s sexually transmitted but sometimes people ( men especially) can carry it for years without getting symptoms.
Also wondering if GP can order an ultrasound to check for kidney stones etc .
plenty of fluids obviously
Don’t worry though as it isn’t that unusual to get persistent UTI type symptoms
hope you get well soon

@lumpybumper - what brand of probiotic did you use out of interest?

Free soul intimate flora. Could be coincidence but I’m not complaining. My GP actually recommended trying a probiotic.

Hi OP, thanks for this thread. I too I'm struggling with UTI symptoms since October that haven't gone away.
Original NHS tests confirmed UTI but 3 days of nitro didn't shift it.
Still symptomatic but further NHS tests show no UTI so I've been left in pain ever since.
Just wondering how you're getting on now and your results of the private test?

@lumpybumper Can I ask for a link for the one that worked for you please?

Hi @OnePeachOrca - I so very much hope you are feeling better now.

Previously, I did my own thread with my own horrible experience. I have just updated it and I thought that you or perhaps others commenting on this thread might find it interesting.

XX

https://www.mumsnet.com/talk/womens_health/5190130-beating-a-chronic-uti-success-stories?reply=144539588

Hi Onepeachorca just wanted to see how you are doing and whether the digital micro results helped with your diagnosis and treatment? I am dealing with e faecalis for 7 months now and it’s really robbing me of life. Tried all kids of antibiotics and BV treatments and now on bladder instillations with mixed results.