Embedded/Recurrent UTI

[applecharlotte12]

Hi, I'm hoping someone can help me...

Embedded uti since last November triggered by a kidney infection, had ultra sound and cystoscopy all clear. Tried hiprex, didn't work. I take Cranberry tablets daily although the urologist said not to bother.

On a low daily dose of antibiotics (did 3 months trimethoprim now on cefalexin) but still have mild symptoms that flare into a full infection 2 x month. It's only when I take a full dose of antibiotics that I start to feel okay, but when I drop down to low dose, symptoms come back immediately.

I work full time and am hanging on by a thread - the daily maintenance and headspace is horrendous. Plus it's affected my relationship.

I don't drink anything but weak decaf tea, water and cranberry. Gave up booze (2 years ago), fizzy drinks, caffeine, sex, tomatoes, citrus fruits.

Has anyone come out the other side of this? What worked? How long did it last? I originally saw a private urologist but am now waiting to be transferred into the NHS. Any advice, guidance or shared experience would be welcome 🙏

I still need to make the leap! I keep finding excuses as to why I can’t as I’ve been so busy with the school holidays and can’t afford to feel worse.

Sending a virtual hug to everyone struggling. Symptoms wise I’ve been ok but I do have to get up in the night to wee which I never had to do before and it’s interrupting my sleep.

These were my results at my last appointment. Not sure what they mean tbh!

@MamaAlabamaglad things haven't been too bad recently but it sounds like your infection is still rumbling along which is annoying. So I know wbc means 'white blood cells' which show up if you are fighting an infection and epi is the bacteria measure. So these are the ones Harley Street test for and that my number relate to. Rbc is probably 'red blood cells'. I had bad daily symptoms with a count of 20 epi and 4 at my first appointment but now with measures of 200 and 180 have no uti symptoms! I posted on a couple of chronic uti groups on fb and quite a few people said they had similar readings when they had thrush. It seems like the counts include any infection present not just UTIs.

Do you think you'll book in soon to see someone soon? I really recommend Dr H at Harley street but the appointments are expensive and it's costing me £200 for 3 months of antibiotics and Hiprex! Worth it in my case as I was desperate and really struggling between Nov - May.

I’m already seeing a consultant privately at The Portland Hospital. She’s the one that prescribed the nitrofruantoin, hiprex and HRT. I go back in October to see her and see if my levels of infection have come down.

Have they given you treatment for the thrush?

@MamaAlabamaah I see! Re: thrush. He said use a canesten pessary/cream combo then 14 days of boric acid pessaries with a weekly one after that to keep thrush at bay. He shared a link to order from online. I'll share here...

https://www.pureboric.co.uk/products/boric-acid-vaginal-suppositories

Hope they work quickly for you!

I came out the other side but it took years. However I will say I was pretty much symptom free during that time with the odd flare up but was on high dose cephalexin and hiprex. I was under Prof Malone Lee when he was still alive, and Raj worked for him at the time at the LUTS clinic, so all on the nhs thank God. Just woke up one day and thought it was gone, no little background niggle. Stopped my meds two years ago and been fine since.

@YanTanTetheraPetheraBumfittglad you're feeling well and that treatment worked for you. It's so expensive (just paid £225 for my next three months of ceph and Hiprex) but I've been symptom free for about a month now which is worth it.

Can you not get your gps to prescribe it under the nhs? I just had to show my private prescription at my gps surgery, the doctor reviewed it and changed it over. I obviously still have to pay but no where near as much.

@MamaAlabamano I did ask but they said as I'm under a private consultant I have to get prescriptions through them. They said if HS put me back into the NHS I can go through them but not until that happens.

Hi @applecharlotte thank you for the hugs, for the last two days I’ve nearly felt normal after 9 months.

im afraid I haven’t been back HS yet as I’m sure Dr Malone Lee said four months to me but Dr H does seem to see his clients after 12 weeks. I’ve dipped into the embedded uti fb page and had some very useful tips, so maybe try them. I dont look at all the time as it can get quite depressing. One person said to try pumpkin seed oil for my frequency and touch wood , that’s really helped.

I hope the shoulder gets better and hrt helps x

@Fornso pleased to hear you've had 2 days respite! It's such a revelation to feel well again. Hopefully this is the start of a long symptom free period for you. Yes I know what you mean about the fb pages, there are some very unwell and desperate folk on there. Just shows how wide spread this condition is and how awful it is.

This is so disappointing to read - every woman I know has started with peri symptoms in their early to mid 40’s - why do doctors dismiss it so much😞

I see from a recent post that you know you are now in peri and about to start HRT. I’m post menopause now, but looking back UTI and thrush type symptoms (but with no infection detected), bladder weakness, urge incontinence, dryness, etc were my earliest peri symptoms in my early 40’s. I was also dismissed by gp’s as being too young.

The biggest thing that helped me at the time was cutting out sugar, stop using tampons and using Balance Activ BV Treatments. I was never diagnosed with BV but the creams and gels worked for me. Didn’t cure, I had to use them quite regularly, but did relieve symptoms.

I suffered for years rather than months, but was symptom free from mid to late 40’s and post menopause by 50. I hope you continue to have less flare ups and symptoms stop altogether at some point like they did for me.

@SchoolNightWinehi, thanks for sharing your experience and sorry it took so many years of suffering before getting respite. I agree women are really let down by the GPs and the current nhs guidelines. Back in May when I posted I didn't think I was in peri but now I have lots of symptoms so believe it could have contributed to my uti becoming embedded last year. I can't wait to start HRT but have also been fortunate to be treated by a chronic uti specialist. Thanks for the suggestions - I know cutting out sugar may help but am in denial as always have cut out alcohol and caffeine!! I will seriously think about it tho.

There's a very good article on exactly this issue in the October 2025 Good Housekeeping magazine if you can get your hands on it.

This gives me hope!

Does anyone have to have blood tests to check how they’re responding to the long term antibiotics?

I had some done as I’ve been feeling very fatigued and I’ve got a low wbc, low folate and high b12 🤷‍♀️😭

Hi @MamaAlabama sorry to hear you've been feeling fatigued. My gp sent me for blood tests this week to check my liver and kidney function now I'm on a full dose of antibiotics but not for anything else. Maybe it's worth asking?

I've gone full circle with this fucking condition. I had 5 weeks of no symptoms. Got cocky and had a coffee, a fizzy drink and sex once which has ended up in the worst 10 day flare since I started treatment with Harley street back in June. Feel shit - low mentally and just so disappointed. A stark reminder to not push my luck. Sympathy and hugs to all those struggling.

It’s always the fun stuff that sets it off 😂 Hope this flare passes quickly!

My liver and kidney results were fine on the blood test so I’m guessing it’s not causing me any harm. I’ve been quite aware of symptoms again the last few weeks so this must be a flare for me. I’m back to see the specialist in October and I really hope I can lower the dose of antibiotics.

@MamaAlabamayes maybe you are in a flare but it's the fatigue taking centre stage symptoms wise?

my flares always follow the same pattern... urgency/frequency then bladder pain then bone numbing fatigue.

thats good about your low wbc. How long have you been on a full dose for? Would be fab to lower (although not if symptoms come back!). Hope you feel more spritly soon.

Thank you. I’ve only been on treatment since July. Can I ask what your treatment plan is and does that change during a flare?

@MamaAlabama 2g of cephalexin a day and 2g of Hiprex. I can't up my dose to 3g a day during a flare. How about you?

@MamaAlabama sorry that should read *can up my dose

I’m on 100mg slow release nitrofruantoin twice a day along with Hiprex.

The doctor said I could use quick release 50mg four times a day during a flare which I might need to do. I’ve been feeling the symptoms for weeks now though. Can a flare last as long?

@MamaAlabama I think they can. They can linger if the dosage isn't high enough to get rid of the bacteria fully.