Embedded UTI

[Daisysky1]

I have an embedded UTI which I have had since February. I'm on rotational low dose antibiotics. Started with Nitrofurantoin which helped for about 4 months but then tailored off. Even though they helped I still had the sensation of needing to wee all the time. Moved onto Trimethoprim which have been less successful. At the moment have full on UTI symptoms. Am due back to hospital in a few weeks. Feel like the treatment is keeping a full blown UTI at bay most of the time but not dealing with the embedded UTI. Am thinking of going to Malone clinic and would love feedback from women who have had successful treatment. I have tried all the usual stuff such as DMannose and cranberry to no avail.

Have you had investigations like an ultrasound and a cystoscopy etc so far?

I've only been offered ultrasound as tests keep coming back showing infections so don't think they're concerned it's anything else

Recurrent or persistent UTIs probably need a bit of thought. Are you menopausal, are they triggered by interrcourse, are you wiping your bum front to back not the other way round, is there ever any blood, have you got bladder stones, have you got a prolapse, are you emptying your bladder properly etc etc. I'd try and have more of a chat with your GP before going to another clinic (i don't know what the malone clinic is though)

You've probably done all that though. Just thinking out loud

Thanks for your thoughts. I am menopausal and never had a UTI before then. I am on HRT and use vaginal HRT as well so all of that is covered. Very mild prolapse. Stopped having intercourse as that definitely worsened things. I'm not sure there is anything else I can do to try to prevent getting UTIs but it's trying to get rid of the embedded one that is causing me concern.

Hi there, sorry you're going through this. It is difficult. I have an embedded UTI and have been with the Harley Street Clinic (founded by Professor Malone-Lee) for the last 18 months. I am on full dose long-term antibiotics and have seen great improvement since I started my treatment. Low dose ABX can suppress the infection but - as you say - won't clear it. Happy to answer any questions you have and can also point you to several Instagram accounts run by women who have this condition and who share lots of really interesting information.

I’d be interested in that info please 🙏

I’ve been diagnosed with an embedded UTI after a year of hell. I had to eventually go private to get the correct treatment and care. Medical misogyny is alive and well unfortunately! I’m now on long term, high dose antibiotics and Hiprex. I’ve been on these consistently since July but not seeing much improvement as of yet x

How is everyone doing?

I’ve been back to The Portland for my follow up appointment after being on full dose for 3 months. I’m so disappointed that my infection markers had all gone up in my urine sample 😭

Ive got to stay on full dose until the next follow up.

Bump

hopefully someone who’s been through this can offer advice, I’m feeling so down since this appointment.