Here's a scenario that happens more often than it should: You visit a doctor with urinary urgency, frequency, and bladder pain. Maybe you've had these symptoms for months. The doctor hears your description, nods, and says, "It sounds like interstitial Cystitis." They hand you a dietary restriction sheet and suggest you try over-the-counter phenazopyridine. Visit over.

If this sounds familiar, it's likely you did not receive the diagnostic workup you were entitled to. Because interstitial cystitis (also known as painful bladder syndrome) is a diagnosis of exclusion. That term has a specific meaning, and understanding it could change the trajectory of your care.

What "Diagnosis of Exclusion" Means

A diagnosis of exclusion is one that can only be confidently made after other conditions that produce similar symptoms have been systematically ruled out. IC/BPS shares symptoms with urinary tract infections, overactive bladder, endometriosis, pelvic floor dysfunction, bladder cancer, urethral diverticula, and several other conditions, each of which requires different treatment.

The American Urological Association's 2022 guidelines are clear on this point: the basic assessment should include a careful history, physical examination, and laboratory examination to both document symptoms characteristic of IC/BPS and exclude other disorders that could explain them [Clemens et al., 2022]. StatPearls, the continuously updated medical reference, reinforces that IC/BPS remains a diagnosis of exclusion, often identified late or misdiagnosed [Lim et al., StatPearls, updated October 2024].

What a Thorough Diagnostic Workup Looks Like

Detailed medical history. Not just "when did this start", but a comprehensive review of symptom patterns, previous UTIs, menstrual cycle correlation, sexual health history, prior surgeries, and associated conditions. IC/BPS symptoms should be present for at least 6 weeks to meet diagnostic criteria.

Physical examination. Including a pelvic exam to assess for pelvic floor tenderness, prolapse, vulvar conditions, or other structural findings that could explain symptoms.

Urinalysis and urine culture. To rule out active urinary tract infection. This is the minimum — a standard dip test alone is insufficient if you have a history of recurrent infections or persistent symptoms between clean cultures.

Symptom questionnaires. Validated tools like the IC Symptom Index (ICSI) and IC Problem Index (ICPI) help establish baseline severity and track treatment response over time.

Cystoscopy (when indicated). The AUA guidelines state that cystoscopy is not required for uncomplicated presentations but should be performed when Hunner lesions are suspected or when the diagnosis is in doubt. Hunner lesions which are inflammatory patches on the bladder wall are found in a subset of IC patients and require specific treatment approaches.

Urodynamic testing (when indicated). May be considered for complex presentations to evaluate bladder function and rule out other urological conditions.

What Should Make You Ask More Questions

If you received an IC diagnosis without a urine culture, without a pelvic exam, or within a single short appointment it's reasonable to ask questions. Specifically:

"What other conditions were ruled out before reaching this diagnosis?" If the answer is vague, request the specific evaluation that should have occurred.

"Was a urine culture performed, or only a dipstick?" Dipstick tests detect only a limited range of infections — in fact, the nitrite component has a sensitivity as low as 19-48%, meaning it misses more infections than it catches. A standard urine culture is more comprehensive, but even cultures have a false-negative rate of 20-30% among symptomatic patients. For those with persistent symptoms and negative standard cultures, newer molecular testing methods like PCR may be appropriate, one study found PCR detected uropathogens in 56% of symptomatic patients compared to just 37% by culture alone. It's important to note that there are currently zero (yes, zero) testing options available that can definitively rule out a urinary tract infection. But an imperfect testing landscape doesn't mean you're out of options, it means you may need to advocate for the right test at the right time, and work with a provider who takes your symptoms seriously, regardless of what a single result says.

"Would cystoscopy or urodynamics be appropriate in my case?" These aren't always necessary, but if your symptoms are atypical, severe, or haven't responded to initial treatment, they may reveal findings that change your diagnosis.

"Should I see a pelvic floor physical therapist for evaluation?" Pelvic floor dysfunction can produce symptoms nearly identical to IC/BPS, and the AUA guidelines recommend PT as an early-line treatment. An evaluation by a pelvic floor specialist can determine whether muscle dysfunction is contributing to or fully explaining your symptoms.

Why This Matters

A correct diagnosis is the foundation of effective treatment. If you have an active infection that's being missed by standard cultures, the IC diet won't help. If your symptoms are driven primarily by pelvic floor hypertonicity, bladder-focused treatments won't address the root cause. If there's an underlying condition like endometriosis contributing to your pelvic pain, it needs its own evaluation and management.

Advocating for a thorough diagnostic process isn't being difficult. It's ensuring that you receive the standard of care that medical guidelines already recommend. A doctor is the expert on the body, but you are the expert on your body. Both forms of expertise deserve a seat at the table.

Sources

Clemens, J.Q., Erickson, D.R., Varela, N.P., Lai, H.H. "Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome." Journal of Urology, 208(1):34-42, AUA Guideline, 2022.

Lim, Y., Leslie, S.W., O'Rourke, S. "Interstitial Cystitis/Bladder Pain Syndrome." StatPearls, National Library of Medicine, updated October 7, 2024.

Hanno, P.M., et al. "AUA Guideline for the Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome." Journal of Urology, 185(6):2162-70, 2011.

StatPearls. "Uncomplicated Urinary Tract Infections." National Center for Biotechnology Information (NCBI). Updated February 2025. https://www.ncbi.nlm.nih.gov/books/NBK470195/

Gleicher S, Dmochowski RR. "The Status and Future Direction of Advanced Urine Testing: Multiplex PCR." Urology Times. February 2025. https://www.urologytimes.com/view/the-status-and-future-direction-of-advanced-urine-testing-multiplex-pcr

Sirls LT, et al. "Multiplex PCR Based Urinary Tract Infection (UTI) Analysis Compared to Traditional Urine Culture in Identifying Significant Pathogens in Symptomatic Patients." Urology. 2020;136:119-126. https://pubmed.ncbi.nlm.nih.gov/31715272/

Santamaría-Gadea A, et al. "Reevaluating the True Diagnostic Accuracy of Dipstick Tests to Diagnose Urinary Tract Infection Using Bayesian Latent Class Analysis." PLOS One. 2020. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0244870