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

@BerthaAntoinetteMason sorry to hijack the thread but I think I have aerobic vaginitis. Microbiology swab is showing ecoli and enterococcous. How did you treat yourself as GP and gynae don't seem to know anything about the condition.

@bellocchild unfortunately the NHS testing for UTIs is hopeless unless you have one of the few mainstream infections they test for which is only around 25 bacteria, this hasn't changed for decades but there are a huge number of people pushing to change this, including Urologists and GPs such as Dr Nighat who recently discussed this with the BBC. So many infections are being missed by and patients are being left in agony. Digital Microbiology (MicroGenDX if in the US) test for 4000+ bacteria, viruses and yeast, the NHS needs to be changed to this and in time it will be but this will sadly take years.

@Gimmlett the problem with the Malone Lee clinic is that Professor ML didn't believe in testing. His theory was that all the bugs show up so you don't know which one the culprit is etc. It doesn't work like that, you will always have a dominant strain in your sample which is clearly causing your issues if there is one. That clinic blindly sticks people on insanely high doses of Cefalexin for years on end and when (like in my case) after a year they didnt help they simply increase the dose even higher which ended up causing nerve problems which I still struggle with now. My GP told me to come off of them straight away which is when I got tested properly and found I was resistent to Cefalexin so that whole year was pointless for me and cost me a fortune and the rest of my health. What frustrated me the most is I asked the clinic repeatedly for their success rates and statistics when I realised I wasn't improving and they said they don't issue that information. I also told them I was going to get tested to find out what bacteria I had and would they change my antibiotic in line with this and when I did they told me I would be struck off the books if I got tested as I was with them and solely with them and they didn't agree with testing. I tried talking to girls on the CUTI support group about testing and got kicked out the group, it was really, really weird. It's like a bizzare cult. I would honestly just get tested properly with a reputable lab so you can see exactly what's going on, it's the most sensible thing to do and I wish someone had helped me and told me to do that from the start. I do appreciate some people at the ML clinic get better but a lot don't, unfortunately we aren't allowed to talk about that.

The thing is though: my FREE NHS tests work! Why on earth would I spend £2-300 on private tests when my GP can order them when needed, and they work?!

@Gimmlett for aerobic vaginitis I treated myself with fluomizin which is used for bacterial vaginosis. However, please do bear in mind that I am not a doctor and do be careful. Do try to find a specialist if you can or a sympathetic GP.

After surgery and recovery plagued by uti
the only thing that worked for me was
sweet cures de manose
anne there was really helpful
ovbs gp as well
but honestly life changing

@Ellie54320I completely agree about the ML clinic.

@Gimmlett I forgot to ask, does the aerobic vaginitis also make you feel like you have a UTI?

No I don't have any uti symptoms, just burning pain on my vulva.

@bellocchild I'm not sure if you actually read my post? I'm really pleased that for you the NHS testing worked. Of course it works for some people who actually have the 25 mainstream bugs they test for? But unfortunately for a lot of other people the NHS testing doesn't pick up their infection, this has been proven and the percentage is huge. I'm thrilled this works for you but unfortunately a lot of other people aren't so lucky, the average UK consultation is £200-£300 so at the stage I was at I'd happily pay also that for a one off test that tells me what's going on with my vaginal and bladder health after years of agony.

I have had this for over 2 years now. I did visit the Harley Street Clinic but could not tolerate the 2 antibiotics they gave me, so now I just have to live with the pelvic pain, its horrendous

@DecayingRelic I'm so sorry that's happened to you. The only things I can suggest are vaginal estrogen and also getting tested properly - both vaginal and urine sample. Digital Microbiology are a good company as other people have said.

Just a general update: I am still nowhere further forward with things and it’s been nearly three months since it all began so the next step for me is to get to a sexual health clinic to rule out anything amiss with my lady parts and then I plan to do the private urine test with digital microbiology as I really need some answers. Of course, I’m still worried that it’ll miss something (in the case of an embedded infection for example), so will try to do it when am feeling most symptomatic but I’m praying this will shed some light on what’s going on. I’ve been shedding some bits of tissue in my urine recently which I assume is bladder lining as my pain always flares after I notice those, but I still want to rule out things like BV/AV etc as I did have a positive BV swab a few weeks ago that the GP left untreated (as the next one came back clear 3 days later). Very much a process of elimination. Thanks everyone for the ongoing advice and for sharing your own experiences. It makes me so sad to think how let down women are in the NHS when it comes to these problems. The urine dips need to be updated as a priority. I recently did my own one that was raging with leukocytes and took the same sample to the surgery who said theirs didn’t show anything up so it wouldn’t be sent away after all. We shouldn’t have to shell out to take matters into our own hands but it seems that is the only way.

Thanks for sharing your experience and I’m so glad things worked out for you in the end- it must have been such a relief! May I ask how long you suffered with the uti symptoms and how long you were on antibiotics for once you knew which one you needed? As I’m worried about all of these long term high doses I keep reading about, which I’m scared will be the only answer if I have an embedded infection. Hoping that after three months it won’t be a horribly long time to get rid of it, as someone women suffer for years. I’m also very weary of the Malone clinic and would much prefer to do my own private test so I can see the results and breakdown for myself.

Hi @OnePeachOrca . I'm so sorry you're going through this still and it sounds horribly familiar to me particularly the bits of tissue thing. I'm really hesitant to suggest this as I'm not a medic (I'm actually a scientist) but there is a simple DIY test you could do for aerobic vaginitis. If you'd like details let me know.

Hi @BerthaAntoinetteMason thank you so much for your responses (and previous ones). To hear that our symptoms our/were similar does give me some some hope that it may not be the dreaded embedded infection that I’m worrying about, so thank you for that. I assumed that the tissue thing would mean it’s almost certainly bladder related but I suppose it could also be cervical mucus. I’m planning to do the whole urine + vaginal sample with digital microbiology at some point this month to get a fuller picture, which I believe is what you had done too but keen to hear more about the diy test for AV, especially if it would be an easy way to at least rule it out.

Sure. Busy at the mo but I'll get back to you this afternoon. Xxx

Hi again. So let me describe the test that I did. The aim is to find out whether the leucocytes (white blood cells, a marker of infection) are coming from your bladder or from your vagina. This is necessary because when you do a wee sample it picks up some of the vaginal fluid on the way past and therefore you can't tell whether bugs or leucocytes are coming from the badder or the vagina. I hope that makes sense.

You will need some standard UTI test strips (and it sounds as if you already have these). I use these ones https://www.amazon.co.uk/dp/B018NXI88Q?ref=ppxyo2ovdtbfedasintitle

You will also need some kind of tube like the one they give you at the doctors to put a urine sample in (clean obviously). Fill it with 20 ml of cold tap water. Then take a cotton bud and use it to swab the inside of your vagina. Do this for a 5 seconds say. Then place the cotton but in the tube of water and shake with the lid on such that what is on the cotton bud goes into the water. Then remove the cotton bud.

After you have done this, use the urine test strips in the same way as you would for a urine sample, following the manufacturer's instructions. For example for the one I use you need to dip briefly and then remove and wait for 2 mins to read the leucocyte result.

If you get a signal for leucocytes you may well have aerobic vaginitis as high white blood cells is a marker for this. It could also indicate thrush or BV but in general high white blood cells are far more associated with aerobic vaginitis. I wanted to add the scientific paper source for this but I can't find it just now.

As an extension to the above, you could also take a urine sample and test this with the dipsticks as well. However, you have to take care not to get this mixed with the vaginal fluid as I say above. What you can do (and it may not be perfect) is to wash the whole area and then block off the entrance to the vagina with a tissue or tampon or similar and then take your urine sample. Try to get the mid stream sample i.e. wee for a bit and then catch the sample after that.

If your urine sample doesn't show leucocytes and your vaginal sample does, chances are you probably do have a vaginal infection and it probably is aerobic vaginitis. If this is the case I would strongly recommend doing the digital microbiology test to confirm (you might want to just do it anyway as you are having such problems).

It's all a bit complicated I know but I hope this helps. It's a shitty state of affairs that I've had to essentially make up this test myself as the medical establishment are way behind the times!

Good luck and I'd be really interested to hear the result.

XXX

Thanks so much @BerthaAntoinetteMason for such a detailed post and for sharing that DIY test, I really appreciate it. I’ve just done the vaginal swab, followed the instructions and my test strip is positively raging with leukocytes (very dark purple)! I even did a dummy test with just plain water to check that my strips aren’t giving me false positives so feel quite confident now that something is indeed going on up there. Whether or not it’s just that or whether it’s in additional to bacteria in bladder I’m not sure, as I’m not sure I’d manage to get a urine sample without any vaginal bacteria due to discharge around my urethra. However, I’m getting my cervix checked out on Monday by the doctor and might actually try the Fluomizin anyway (via Superdrug pharmacy) as it appears to be a broad spectrum drug for that area, so would be interesting to see whether it brings me any relief. The next step after that is to get the private urine/swab done to see what I’m dealing with and whether any infection remains in my bladder as well but clearly something is going on vaginally so I’ve got fresh hope of at least partial symptom relief once I can treat it.

You're welcome @OnePeachOrca . Just be warned it will be difficult to get anyone to take you seriously if my experience is anything to go by. It might be a good idea to take a probiotic supplement such as Optibac women such that if you do treat yourself there are the right type of bugs around to repopulate the area (lactobacillus). Xxx

Just going to jump in and add my experience. Had all of which you describe for around 6 years. GP was useless. Urine samples coming back clear. Swabs clear. The stinging and need to wee was so bad it was debilitating. Was sent to a gynaecologist. Also useless. Researched topical estrogen cream. It started working within a few days and it’s changed my life. BUT I’m post menopausal so it was caused by depleted hormones. I didn’t realise lack of estrogen affects the bladder.

Yes, not convinced the GP will be willing to investigate much or prescribe anything and the swabs they take don’t check for things like aerobic vaginitis as far as I’m aware anyway.

I had a colposcopy with cautery three weeks prior to this all starting so now wondering if this is all started with that. Provided my cervix doesn’t have any obvious damage (which I’ll find out on Monday), I’ll get myself some Fluomizin from Superdrug and see if it helps. Did yours clear with the usual 6 day course? Bit scared as the possible side effects include burning and cystitis but if it works it means I might just get my life back again so would be worth the temporary discomfort.

Hi again @OnePeachOrca . I suspect you might be right about your recent treatment being the cause. When they disinfect the area the microbial flora can become disrupted.

Yes fluomizin did work for me but I understand from my reading that it can reoccur and be difficult to shift. Sorry to say this. If you can get support from GP or similar would be best.

Xxxxx

I used fluomizin to treat my aerobic vaginitis after antibiotics. I was nervous to do it as it is scary to treat yourself with mo medical guidance but I couldn't get anyone to take my symptoms and treatment seriously. I used vagibiome probiotics afterwards as I researched the correct lactobacillus to repopulate with as there are numerous and i wanted to be able to apply them vaginally rather than orally tonget tonthe right places. I was lucky as had no side effects to the fluomizin and after the vaginally probiotics my digital microbiology swab showed no more pathological bacteria.

Hi @Gimmlett - It's a bad state of affairs I agree. It isn't even that complicated. After all the wrong bugs being somewhere as a medical complaint isn't that unusual. It's just when it involves lady bits the medical profession is rubbish.

I'm glad you got sorted with vaginal lactobacillus and I agree that would be the more surefire way of doing it. I looked up the Vagibiom product you mentioned and seems is a US thing. Can you buy them here via Amazon or similar?