Chronic debilitating kidney infections..Help!

[Stace30]

Hi there

I have chronic debilitating kidney infections

Often hospitalised

Negative cultures

And my recent hospital stay showed negative bloods

I am still at home recovering and have read a lot on people with infections but negative tests

I have had ultrasounds and will be having a biochemical renal scan this week

I constantly argue to get antibiotics and this time a 7 day course didn’t treat it :/

Is that because I carried on working etc and didn’t rest whilst taking them :/?

I have had this for a long time and my urologist just wants me to keep having dilation under anaesthetic or a new thing tested on animals called cystitat :/

I am desperate for help and information and feel I am bein let down and wondered if your organisation is something I could get help/information/advice from or if you could point me in the right direction

Thank you!

[Bassetmommer NKF Ambassador]

Hi,

I am sorry you are going through all the pain without finding a solution. It takes a lot of work to diagnose something when the tests do not show what everyone is expecting. My only advice for you is to keep advocating for a solution. Here is a website on cyctistat cystistat.com/what-cystistat Best of luck.

[Stace30 in reply to Bassetmommer]

Hi there

Thanks for the reply

I know I just don’t know where to turn and if specialists aren’t sure and the only thing that worked is the dilation to have that again then surely I can’t keep having an invasive /put to sleep procedure every 6months :/ I dunno

Thank you

[Northfields]

For decades I received antibiotics for kidney infections, and was referred to urologists as the pain kept returning. The urologists said my kidneys were healthy. Luckily a routine medical check up provided by my employer led to a referral to a nephrologist who confirmed that I had probably never had kidney infections. The kidney pain and blood in my urine was from IGA nephritis. Have you tried consulting a nephrologist instead of urologists?

[Stace30 in reply to Northfields]

Hi thanks for information.

I always get told your kidney function blood test looks normal so kidney specialists won’t even see you 🤷🏻‍♀️🙆🏼‍♀️ Northfields