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 🙏

Sorry, very behind on this thread. Will read through later. Welcome and commiserations to the newer posters.

@Fornthank you for checking in. 9 months review... all my counts have gone up. Higher than when I first went there!! But my symptoms have steadily improved even since my last review. Still get mild flares with exercise and if I push it too much with coffee/fizzy drinks. Most triggers have gone tho. So I'm still on antibiotics until mid June! Which will be a year. HS said it just indicated there is still bacteria being released as my bladder lining sheds as I wouldn't have sensitivity to triggers if there wasn't. Interestingly, he said the exercise leads to flares as movement encourages the bladder lining to shed more quickly (and release more embedded bacteria) so that's quite common.

anyway, disappointed to be still taking antibiotics but need to just remember how much better I feel overall and be patient. How are you? How are you feeling? Any improvement yet?

Are you getting some sleep at least now? This is awful that your flares are so bad!

@applecharlotte12 thats interesting re counts but feeling better. That’s the main thing , my appointment is on the 17th march so it’ll be interesting how my counts are. I’m definitely improving, my sleep is better, but I still feel I have a long time to go but who knows, I’m still off the hipRex, I can’t face taking that as it’s didn’t agree with me.
so basically it’s food to do sport so to release the bacteria quicker, interesting. I haven’t swam for a year after 3/5 times a week for 15 years, HS said I should go as it didn’t give me the uti but I’m too knackered, I just try and go for a decent walk most days , good luck with the next three months! .

Im on vagifem. Uti still lingering. Macrodantin now. Its so tiring.

Returning to this thread a year after I started it and a year into treatment at Artemis Cystitis clinic. How are you all doing?

After reducing down to 1g of cephalexin a day at the start of the year and having many less symptoms, I had the mother of all flare ups in March that lasted 5 weeks (I guess that explained the raised counts in my review at the end of Feb)!! I had reduced my full dose antibiotic too soon so upped again to 1.5g and since the and have been symptom free for the last 6 weeks. I can drink coffee, fizzy drinks and have started running again.

My counts were 4 wbc and 4 epi cells at my review last week so need to stay on the same dose before tapering off slowly if they keep going down...

it's a bloody long process dealing with a chronic uti, but I'm slowly getting rid of the infection. Over the full year of being on full dose antibiotics, Hiprex and vit c I have probably been symptom free for 6 months, with flare ups every couple of months but I do feel so much better.

it's taking so much longer than I expected and the psychological toll has been immense.

hoping others on the thread have had respite and are feeling better.