Chronic UTI success stories

[Spudulike3]

Hi all - originally posted in Women's Health but posting here for traffic

I've had various UTIs over the years that were cleared up with the usual courses of antibiotics. However, due to a mix of circumstances I've now got one that won't shift and I've had it for about 2.5 months now. I believe the problem was caused by a mix of the Mirena coil, having to come off vaginal estrogen for medical reasons and having a catheter after surgery. The infection was found to be enterococcus faecalis originally and is still bloody there! I'm on the right antibiotics for it (culture test has been done) and am also back on the vaginal estrogen. However, recovery is really slow and I'm still symptomatic. I'm seeing the Malone Lee clinic people about it and also a urologist.

However, I'm really struggling to stay positive after a flare up during the last few days.

Does anyone have any success stories of beating a chronic / long running UTI?
I'd be particularly interested to hear from other Malone Lee patients who have had success.

All feedback appreciated!
XXX

It was constant - I went through times on antibiotics, times on nothing and prophylaxis antibiotics - but the bladder pain and UTI feeling was constant.

Honestly it was no quality of life at all! I never imagined I'd be pain free.

Now I only get flares in pregnancy - so take D-Mannose then but not any other times. It stopped my pain and also stopped the cycle of me getting UTIs. But I took a much higher dose than recommended when I first tried it

I basically try to tell everyone I can because it helped me so much

I had a nasty one a few years ago that wouldn't clear. I ended up in hospital on a drip and intravenous antibiotics.

Bloody Hell @MsCactus that's awful. Did you see anyone that helped you in all that time?

@autienotnaughty I imagine the bar for IV antibiotics is pretty high - you must have been in a bad way. I hope you are ok now xx

I’m an ex Malone Lee patient and was on high dose antibiotics for ten years!!! I started off on 4g of cephalexin a day and also azithromyacin (can’t remember the dose). After a couple of years came off the azith and my cephalexin dose went up and down depending on symptoms and flares.

i would say that 95% of the time I was symptom free, but kind of a very low key constant niggle. Like if I missed a dose of antibiotics I knew about it nearly immediately!

I’ve been off everything a year is without a flare up.

I was never able to tolerate hiprex as it tastes so bad I’d vomit. I did take vaginal oestrogen for the last year alongside the antibiotics but haven’t even bothered with that for ages.

another thing are you sure there’s no thrush involvement? I’d keep getting thrush but without any discharge or itching. I’d only know when picked up on a urine sample and looking back i think some of my “flares” may actually have been thrush.

Thanks @DanielaDressen that's a long haul and no mistake. I'm glad that you are somewhat better now.

Interesting what you say about Thrush and how it can get confused.
Xxx

The private urologist who put me on prophylactic antibiotics was amazing - because the pain was higher during a raging infection and it stopped those. Gave me a bit of control back. And stopped my infections going into kidney infections (which also happened). But it did nothing for the day to day pain.

Once I found D-Mannose helped with the pain and was on the mend, I saw an amazing specialist NHS gynae physio who released loads of cramped muscles around my uterus/bladder/vagina which helped with the pain.

Tbh if I hadn't started D-Mannose though I couldn't have tolerated the physio as it would have been too painful. But once my pain got better, the physio then accelerated that as it stopped my muscles being cramped up with pain.

Anyway, this is why I always come on these threads to shout about D-Mannose. In case it can help anyone like it helped me

@MsCactus it just goes to show what a complex condition chronic UTI is. There needs to be so much more research to put it all together, bacteria, vaginal microbiome, hormones, muscles, natural supplements, diet....... I also find that Urologists can be quite dogmatic and not consider more than one thing that is their speciality. I'm sure not all are like that though.

Oh gosh you poor thing UTIs are awful. I was advised to drink lots of water and I think this helped to flush out. I also just generally took care of myself, low expectations about what I should do, didn't feel guilty for sitting around (because I was exhausted through lack of sleep, for me that was the worst part). The antibiotics eventually kicked in but the infection came back three times before I was given enough to get rid of it properly. Tbh it's gone now but I still don't feel 'normal' down there. Take care of yourself OP.

I was initially treated by Prof himself, then Matt at the Malone Lee clinic. It's taken time, but I've gone from 6 weekly ecoli flare ups involving various hospital admissions, to absolutely zero infections. Forever grateful to all involved at the clinic.

I'm sorry that you're suffering like this.
I don't have any advice as I couldn't find anything that worked but a few years back I had UTI symptoms for about 6 months. Tried so many different antibiotics but none of them quite got rid of it. I'd feel a bit better for a few days and then be back to where I started again.
In the end it seemed to clear up but it was a difficult few months.

I hope you're feeling better soon!

@Rainbow1612 that sounds very much like my story. I'm about 5 months in now. Feel like I pretty much missed summer.

I'm glad it abated in the end.

@Seiheiki I'm so glad it worked out for you. How long did it take to get to this point?

@Oscarbravoromeo that is really helpful thanks xxx

@Oscarbravoromeo Actually, out of interest, did you start taking the stuff on your list while already taking the cephelexin or did you stop the ABs first?

I had a UTI at Christmas about 4 or 5yrs ago that took 3 lots of antibiotics to shift. Then I got 5 more in 8mths. My GP at the time very helpfully said “around perimenopause literally everything dries up, so that’s the problem here..” I spoke to a female one at the practice who put me on a prophylactic dose of Trimethoprim and vaginal oestrogen.

I took the Trimethoprim for 2 yrs but as I’m allergic to all the other antibiotics they’d use to treat a UTI I was worried about antibiotic resistance so asked my GP if I could come off it. She agreed, that was about 18mths ago and I’ve had 2 UTIs in that time. I take D-Mannose every day, if I miss a day I notice it and i sometimes take a cranberry supplement as well.

I don’t drink any caffeine. I drink a lot of water. I find if I drink anything red like Ribena or Vimto it aggravates my bladder and Lucozade absolutely doesn’t agree with me at all. I always feel at my best when I’m on holiday and it’s hot so I’m drinking litres and lites of water, but of course it’s difficult to do that on a cold December day.

I kept getting them. In the end they put me on a daily antibiotic for 6 months . Now I take one tablet after sex . I have a UTI now but they are rarer thankfully.

Have you had a cystoscopy? I had one for various UTIs

@Melonjuice not yet. Did they find anything in your case?

I have bad flare ups due to vaginal astrophy constantly feel like I have UTI. I was on vagifem which was amazing but when I came off tamoxifen I was told to stop by the breast clinic.

I got stuck in a loop of UTIs and thrush for over a year. Finally got sorted after moving to Germany where a routine test at the gynaecologist picked up an underlying ureaplasma infection. Apparently the NHS doesn’t test for this unless you experience recurrent miscarriages, so I am forever grateful this was picked up before. You need strong antibiotics and any partners need to be treated too. I was still having trouble with thrush and eventually the gynaecologist told me about a vaccine called Gynantren which has been a lifesaver (it helps by rebalancing your microbiome). I did have one more UTI but tried out a medicine called Canephron which I had seen advertised at the pharmacy. I was very sceptical, and it took a couple of weeks, but for the first time ever I was able to shift one without antibiotics which would have kicked off the whole sorry cycle again. I hope this can be of use to someone, it’s an awful thing to go through.