UTIs and Misdiagnosis: What You Deserve to Know

UTIs and Misdiagnosis: What You Deserve to Know

By Giana Jarrah, Biomedical Engineer & Vaginal Health Expert

 

 

You feel the urgency, the burn, the pressure—you go to your doctor and hear:
“Looks like a UTI. Here’s an antibiotic.”

But what if I told you that up to 40% of women with UTI symptoms test negative on a standard urine culture? And many of those women are told it’s “in their head,” “just irritation,” or “probably hormonal.”

I was one of those women. As a biomedical engineer and vaginal health researcher, I’ve spent years digging into the science of why recurrent UTIs are so often misdiagnosed, underdiagnosed, or misunderstood altogether—especially in people with vaginas.

Here’s what you’re not being told at your average clinic—but absolutely deserve to know.

 

1. Standard Urine Tests Miss a Lot

Let’s start with the biggest blind spot in urogynecology: the standard urinalysis and culture is outdated.

Most labs still use a 1950s protocol that:

  • Only identifies a small subset of fast-growing uropathogens

  • Requires a minimum bacterial count (typically >100,000 CFU/mL) to register as a “true infection”

  • Ignores slow-growing, embedded, or biofilm-forming bacteria

  • Reports only dominant bacteria—so if you have a polymicrobial infection (which many do), you're likely to get an “inconclusive” result

Translation? You could have clinically significant bacteria in your bladder, and your lab report will say “no infection detected.”

Emerging research shows that low-count bacteria and non-E. coli species (like Enterococcus, Klebsiella, Ureaplasma) are often present in recurrent UTI cases—but aren’t picked up by basic cultures.

 

2. Embedded Infections Are a Real, Research-Backed Phenomenon

One of the most groundbreaking findings in UTI science is this: not all bacteria float in urine. Some embed themselves into the bladder lining, forming biofilms—protective communities that antibiotics and immune cells can’t easily penetrate.

This is especially true with chronic or recurring symptoms. What happens is:

  • Bacteria invade bladder epithelial cells

  • Form a biofilm matrix that shields them

  • Remain dormant during treatment

  • Re-activate and cause symptoms once treatment ends

These embedded infections often result in negative urine cultures—because the bacteria aren’t in the urine. They’re hiding in the tissue.

This phenomenon is being studied extensively in women with interstitial cystitis (IC), and there’s growing evidence that a subset of IC may actually be undiagnosed chronic bacterial infections.

 

3. “UTI Symptoms, Negative Culture” Is Not a Dead End

If you’ve been told you don’t have an infection despite burning, urgency, or frequency, here’s what you need to know:

You’re not crazy. Your culture might be wrong.

There are more advanced diagnostic options that go far beyond the basic urinalysis:

A. Expanded Quantitative Urine Culture (EQUC)

  • Uses higher-resolution techniques and longer incubation times

  • Can identify low-count or slow-growing pathogens

  • Captures a broader diversity of organisms, including anaerobes

B. PCR and DNA Sequencing (Next-Gen Testing)

  • Detects bacterial DNA directly from urine

  • Can identify bacteria not visible on culture at all

  • Useful for detecting recurrent, embedded, or polymicrobial infections

Labs like MicroGenDx and Pathnostics offer these services, but most primary care offices don’t yet offer them—so you have to advocate for yourself.

 

4. Recurrent UTIs Aren’t Always “New” Infections

Here’s a fact that rarely gets explained: Most people with recurrent UTIs are not getting “new” infections—they’re experiencing relapse of an old one that was never fully eradicated.

Why?

  • Incomplete antibiotic treatment

  • Biofilm persistence

  • Strain-level resistance not detected by standard susceptibility tests

  • Misguided treatment (e.g., using a broad-spectrum antibiotic for a resistant strain)

And to complicate things further, antibiotics alone often don't address the root—they clear surface bacteria but leave biofilms untouched.

 

5. The Vaginal Microbiome and UTIs Are Deeply Connected

Another missed piece in the diagnosis puzzle? The vaginal microbiome acts as a protective buffer against UTIs. When Lactobacillus species—particularly L. crispatus—dominate, they maintain a low vaginal pH and prevent E. coli and other uropathogens from colonizing the urethra.

But if you've been on:

  • Antibiotics

  • Hormonal birth control (especially progestin-only)

  • Vaginal douches, washes, or spermicide

...you may have depleted this microbial shield, increasing your UTI risk—without any symptoms of vaginal imbalance. The impact can be silent but significant.

 

6. What to Do if You’re Stuck in the Misdiagnosis Cycle

If you’ve been through the “test-negative-but-still-symptomatic” loop, here’s a more comprehensive plan:

A. Demand Better Testing

  • Request a urine culture AND susceptibility panel

  • Ask for PCR or NGS-based testing if your symptoms persist

  • Keep symptom journals to correlate flare-ups with cycle, diet, and stress

B. Target Biofilms and Support Immunity

  • Use enzymes like nattokinase, serrapeptase, and dispersin B to break down biofilms

  • Consider methenamine hippurate, a non-antibiotic urinary antiseptic that acidifies urine and prevents recurrence (especially effective post-antibiotics)

  • Support mucosal immunity with vitamin D, zinc, and lactoferrin

C. Rebuild the Vaginal-Gut-Urinary Axis

  • Introduce Lactobacillus crispatus and rhamnosus probiotics orally and/or vaginally

  • Treat the gut too—E. coli often comes from the GI tract, so addressing gut dysbiosis is critical

  • Avoid antibacterial soaps, douches, or anything that strips the vulva of its protective oils

 

If You Feel Unheard, You're Not Alone

UTIs are not just inconvenient. For many women, they become life-altering—impacting intimacy, self-confidence, and daily function. The misdiagnosis isn’t just a clinical error. It’s a systemic failure to take women’s symptoms seriously, especially when they don’t align with conventional lab markers.

But you are not at the mercy of outdated protocols. The science is evolving, and so should the standard of care.

If no one else has said this to you: your symptoms are real, and your voice matters.

With science and solidarity,
Giana Jarrah
Founder, With Meraki Co.
Biomedical Engineer | Vaginal Health Educator
@gianamj | @shopwithmerakico

 

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