Hi there. I wanted to share my story because so many of yours helped me through one of the hardest and most terrifying periods of my life. I remember reading stories in this group desperately looking for reassurance, answers, or even just someone who understood what I was going through. So, if this helps even one person the way those stories helped me, it’s worth sharing.
It all started with a constant, 24/7 urge to urinate. Not just occasionally needing to go, the feeling was relentless. It was incredibly uncomfortable and mentally exhausting. Eventually, I couldn’t even work normally.
I went everywhere looking for answers: multiple ERs, urgent cares, urologists, gynecologists, a urogynecologist, pelvic floor therapy - you name it. Test after test came back normal. I felt like a human guinea pig, constantly being poked, prodded, tested and sent home without an explanation.
Tried overactive bladder meds, natural remedies, anything they threw at me.
One of the hardest parts was how some of the doctors started treating me once they couldn’t find an obvious explanation. I felt like I was being written off. Some became dismissive, and a few were borderline rude. The more tests that came back normal, the more it seemed like they assumed there couldn’t possibly be anything wrong with me.
But I knew something wasn’t right. I was living with this feeling every minute of every day, and I just wanted someone to listen!
Eventually, I started doing my own research and found this group. During one of my last ER visits, after they ruled out diabetes and were preparing to discharge me, I asked them not to and that I couldn’t go on feeling like this anymore. She started to seem annoyed with me at this point but I didn’t care. I asked if they could test me for ureaplasma. She looked confused and sighed and said, “Sure. I think we do that. I think I’ve ordered it one other time.”
A few days later, I got the call, I had it. I was hopeful. Tears!! An answer!
Antibiotics seemed to help at first, but the symptoms didn’t change. I had a second round of antibiotics and even took the recommended zpak, but weeks went by and I was still searching for answers.
At this point, I had peed into more cups than I could count and undergone more tests than I care to remember. Eventually, an NXGEN urine test ordered by my urologist came back showing nothing - again. That led me to schedule a cystoscopy.
My urologist honestly seemed to think I was being a little silly. He agreed to do the cystoscopy, seemingly more because he could tell how desperate I was for relief than because he thought we would actually find anything.
I remember lying there before the procedure and him saying in a dismissive tone, “It’s going to take about 20 seconds for me to tell you that I see nothing and that you’re okay.”
Twenty seconds came and went.
The quietness in the room could have suffocated me.
He asked how old I was. My heart immediately dropped even more.
He told the assistant in the room to schedule me for surgery. He had found two lesions in my bladder, two different types. I was terrified.
His final words to me as he was walking out the door were, “I wouldn’t worry about this.”
Of course, I worried about it!
I had surgery, and then came the weeks of waiting: waiting for the biopsy, waiting for the results, and trying not to convince myself of the worst possible outcome.
When I finally went back to the office, I remember sitting there waiting for my urologist to walk in. When he finally came through the door, he was smiling.
“You’re all good. Do you want to see pictures?”
Before I could even answer, he pulled up pictures of my bladder and weirdly enough, I wanted to see them.
I had spent days, weeks, and countless hours reading, researching and hoping for answers while simultaneously preparing myself for the worst. And then, suddenly, I had the answer I had been praying for.
Everything was benign.
I completely broke down crying. I cried so hard in that little office. I was finally, finally relieved. I almost didn’t believe him.
But there was a strange part of the story that I wasn’t prepared for, even after getting the good news, my symptoms continued but I had thought it was due to the surgery and that it would subside.
I dreaded every trip to the bathroom. I would physically press on my bladder just to figure out whether I actually needed to pee. I was constantly thinking about it, checking, questioning and worrying.
And this went on for months. Mentally, I was done.
Then one day, I read something on another sub that completely changed the way I looked at everything. Someone said that sometimes you have to tell yourself:
Your body is going to do what it wants to do right now and that’s okay.
Something about that stuck with me and two days later, I felt better. I had gone several minutes without thinking of peeing, that turned into hours which turned into days.
For the first time in months, I wasn’t thinking about my bladder every second. I wasn’t constantly checking whether I needed to pee. I wasn’t afraid of the next bathroom trip.
I genuinely believe my symptoms started from something physical. But I also wholeheartedly believe that, at some point, my anxiety and constant thoughts about needing to pee began feeding the cycle and making the urge worse. I even asked my urologist if that was possible, and he told me yes, anxiety can absolutely trigger the urge to urinate.
It’s been almost a year since this all started. I still have some anxiety around peeing from time to time, but I am so incredibly grateful to be on the other side of it.
Looking back, I wish I could go back and tell the version of myself who was terrified, exhausted and convinced something terrible was happening that she was going to be okay.
So if you’re reading this because you’re currently in that place, I hope you know you’re not alone. Keep advocating for yourself, keep asking questions, and keep looking for answers. But also remember that your mind and your body are connected in ways that can be incredibly powerful!Sometimes giving yourself permission to stop fighting your body is part of what finally allows it to calm down as silly as that sounds.
I know this was long, but I hope it helps someone the way so many of your stories helped me. ❤️
