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

@Muledcider that sounds nasty. I hope is much better now. The Digital Microbiology people are great - I really admire them for applying some proper science to this area.

I have the mirena and estrogem patches. I had UTIs back to back and in desperation saw a private uro-gynaecologist who prescribed long doses of cefalexin, which keeps it at bay. The HRThas been the game changer though. He also sited the mirena under sedation, had a good look at my fibroids and fixed my bladder and stopped my monster periods. Then he prescribed testosterone which has given me a lot more oopmph. I’m 53.

I also bought a Bluetooth pelvic floor exerciser, and that’s really helped with what was a bit of stress incontinence. It’s totally fixed now and Mr BowesLyon has also commented favorably!

Curious to know how did you get treatment for it? My gp won't even take into consideration private test results!

i had uti after uti for about six months. Was eventually prescribed urovaxom for three months and since then have had just one recurrence (in 12 months).

Like you, I had amitriptyline and it did the job for me. I can’t remember what dose I was on, but it was amazing. I’d had UTIs constantly for a year, and it provided blessed relief.

@DancingGerbil my GP and Gynaecologists didn't help at all. I treated with fluomizin and followed up with vaginal probiotic suppositories. I have also had to see a gynae privately who is prescribing oestrogen and testosterone cream.

Hi there, did you find the fluomizin worked? Which probiotics did you use?

did you also have bad bacteria in your urine?
sorry for all the questions

Just to add, I had testing at Regenerus Labs. They found all sorts of bacteria which NHS tests don’t pick up. My GP was unhappy I’d done this and didn’t want to prescribe based on the results so I used the lab pharmacy service, but in the end it was the estrogen cream that settled everything down x

@Kitkat1523 yes after the fluomizin and probiotics the swab results were not showing any bad bacteria. I use vagibiom suppositories.

It's not a cure but for actual relief that works order some Azo - I get mine from Ebay. It completely gets rid of the pain and discomfort, it's a lifesaver.

@Trenisenne - that's really interesting. I have read about the various vaccines. I think they are licenced for preventing recurrent infection rather than treating actual infections. Was it your experience that you had to be between episodes to start the treatment?

@Spudulike3 I had just finished an episode, which was treated with some really strong antibiotics which had been given to me at an emergency clinic. My gynaecologist at that point said that I needed something different and gave me urovaxom. I‘m not in the uk though.

Thanks @TalesOfTheGoldMonkey - I'm glad amitriptyline worked out for you. Here's hoping it will kick in for me soon

Estrogen cream worked for me but now post breast cancer I can't use it. However, it hasn't really come back as long as I drink loads. D mannose has really helped friends so that is what I will turn to if I get a recurrence.

You can use vaginal hormones …..it is not systemic like hrt so does not go into the bloodstream.just releases eostrgen in the vagina …..there was a big piece of research published in 2023 and now many BC ladies are taking this with the blessing of oncology teams…..the best one post BC is likely blissel as it has a lower dosage than Ovestin or vagifem .

Thanks for the tip @StoneColdAlibi - it could come in useful if there are days when I really need to be on top form.

I must admit @NiggleNoggle I was also a bit surprised that you had been recommended to drop the vaginal estrogen based on what I've read. Can totally understand if you want to just cut out all risk though even if tiny.

@LizzieBowesLyon Thanks for your story. Cephelexin was mentioned to me as a future possibility at an appointment this week. What dosage did you take and for how long?

I can't find the link but I saw something on Twitter earlier that says it can be linked to endometriosis. Might be worth looking into?

@QuestionableMouse - good point and I'm sure true for some people. I've just had a hysterectomy though so plenty of rummaging in my insides recently and they didn't mention endo.

Missed that sorry!

No probs. I sometimes forget that bits are missing myself!

I also bought a Bluetooth pelvic floor exerciser, and that’s really helped with what was a bit of stress incontinence.

@LizzieBowesLyon does the Bluetooth exerciser do a better job than conventional DIY pelvic floor exercises?

I had chronic UTIs for five years and chronic bladder pain as a result.

Was on constant antibiotics - the only thing that cleared it was taking absolutely huge quantities of waterfall D-Mannose. When I first started I was taking one heaped teaspoon of the powder every hour. Gave me horrible diarrhea but cured my UTIs for good

Oh my goodness @MsCactus - 5 years - that's awful! I'm so sorry you went through that. Did you have any gaps or was it just one single 5 year stretch?