Mary W.'s Story

My name is Mary. My UTI symptoms began when I got my first UTI at 22 years old. At the time, I was still in college, so around 18 years ago.

I went to the doctor, and she prescribed antibiotics. Thankfully, the symptoms went away, and my life returned to normal. At least for that first UTI.

Moving forward, I would occasionally get a UTI, ranging from every 6 months to every few years. My doctor told me, "Some girls just get UTIs." They would write me antibiotics and send me on my way. 

My urine dipstick tests were always negative, and cultures never grew as well. I was told I might have interstitial cystitis, or maybe bacterial vaginosis. 

They weren't sure what it was, but they went ahead and always treated it like a UTI and gave me a short course of antibiotics. There was never any discussion about diet, root cause, supplements that could help, or sending me to urology. 

I didn't have any UTIs from probably 2018-2022. I didn't even think about them. But in December of 2022, everything changed. I got Covid-19 and it spun my immune system off its axis. I got a UTI shortly after, and while the dipstick was negative, the culture was bad. 

A very, very resistant Klebsiella grew. I was told I had no oral options and to go to the hospital. In the hospital, I was berated for not having an infectious disease doctor despite my telling them repeatedly that this was my first positive culture. Good job on blaming the patient, especially when they just received such horrible test results!

My journey from there just got wilder and wilder. My symptoms are now daily, and the hoops I've had to jump through to get help are nothing short of ridiculous. I have beaten down doors to try to get help. I've contacted probably 30 infectious disease doctors, all of whom turned me down except for one. His response was, "If you had more options, you'd have more options. Call me when you need antibiotics," essentially meaning he couldn't offer low-dose suppression antibiotics because my options were so few. 

I now have a team of urologists, and they are trying to help me.

I have found that everything I've tried seems to help for a little while. I have a Rife machine, and while it hasn't helped with resistance, it has helped some with pain. Phage therapy has helped me a few times. It is expensive, but when antibiotics aren't an option, you do what you can. Chinese herbs seem to help some as well. I've also gone digging into my root causes and am treating them. I am hoping that once some of this is fixed, I'll be better able to help myself.

My journey has been a hard one emotionally. I'm a mother of a young child, and I feel like this disease has cheated both of us. I hate being in pain all the time, when he asks if we can go to the park and play, and we can't because "mommy's belly hurts". It's so unfair. I hate it for him. I'm working very hard on trying to improve my mindset, but man, it's hard when you're hurting and you feel like life is just passing you by.

The last thing I'd like to share is just don't give up hope. My hope is in the Lord, and I know he put me here for a purpose. The way our healthcare system has failed repeatedly is unacceptable. As long as someone is needed to shout from the rooftops that we need help, I'll be leading the charge.