A cytoscopy away from a life sentence: Interstitial Cystitis

The question I’m most asked is “how did you figure this all out?” Through lived experience. I backfilled the research later.

By now, my own health journey is so long and involved, I frequently forget to mention my tryst with Lyme. That piece pales in comparison to what came after.

When Chronic Symptoms Don’t Fit Any Diagnosis

Likely the reason you’re here is because you’re suspecting (or know) you’re struggling with:

• Interstitial cystitis or chronic UTI symptoms

• Hashimoto’s thyroiditis (autoimmune low thyroid)

• Gadolinium deposition

• Fibromyalgia

• PCOS

• Low estrogen, high estrogen, non-existent progesterone

• “Perimenopause” symptoms (palm sweats, night sweats, day chills, fatigue, “brain fog”... or early dementia, whichever)

• Symptoms nobody could explain
  

My friend Rhonda once asked if I could even recall half the laundry list of symptoms I had when I finally threw in the towel. Not being able to turn my head side-to-side without pain and crunching—and a headache that felt like an iron hand wrapped around half my brain—were the two that made the cut.

When it all started, the only one I didn’t suspect was gadolinium deposition. That piece fell into place much later. This particular chapter in my health saga begins two weeks after I stopped hormonal birth control.

Urinary urgency, hormonal birth control, and hormone imbalance

Cloudy, weird-smelling pee with burning and urgency hit at the same time I began experiencing fatigue, insomnia, night sweats, palm sweats, chills, and the kind of “brain fog” that felt more like early dementia—forgetting my kids at daycare, debilitating headaches, and the kind of inflammation that made speech feel impossible by day’s end. If you had all of those at once, which would be most uncomfortable? For me, it was the symptom that never let up—urinary urgency.

When the Tests Are Negative but the Symptoms Are Real

I still remember a morning in December, heading to work after multiple desperate trips to the bathroom—terrified I wouldn’t make it in time, even though my bladder was empty. By this time, I’d been chasing UTI symptoms for six months. The standard urine cultures were all negative. The urologist I was seeing recommended going back on estrogen. I laughed—I’d just quit that stuff. That morning, I queued up one of Scott, the BetterHealthGuy’s, podcast episodes with retired nurse practitioner Ruth Kriz.

Discovering the “Microinfection” Theory

Ruth had lived interstitial cystitis hell herself. In case you’re wondering what interstitial cystitis even is—it’s basically a cop-out diagnosis when you’re struggling with chronic UTI symptoms, an inflamed bladder wall, and yet your cultures are negative.

Western medicine doesn’t quite know what to do with that, so it slaps on a label. And if you let it, that label can become a lifelong sentence of urgency and pain. Ruth, bless her heart, took it upon herself to figure a way out—by looking for microinfections. And that morning, I was certain I’d be one of the many women she’d helped.

The Breaking Point: When the “Cure” Becomes the Problem

I found a practitioner Ruth recommended near me. This started a new cycle—chasing microinfections. That lasted until July of the following year. By then, I’d been on multiple rounds of antibiotics. The liver pain hit halfway through one particularly harsh cycle of amoxicillin-clavulanate 875 mg.

When I told my practitioner, the next script doubled the duration. That’s what it took to shake me to my core. As I sat there looking at that prescription, I finally heard the truth—

“You realize you’re practicing the definition of insanity, right?” That was when I decided to listen to my own intuition.

In case you’re on the edge of your seat about how I finally broke free of urinary urgency and all the hallmark symptoms of chronic UTI/IC (yes, I just lumped those two together), you’ll get a sneak peek here.