IC or not IC?

Nov. 6, 2024
That is the question we answer this National Bladder Health Awareness Month

A brief note on language: Bladder Pain Syndrome is now the preferred term within the field of urogynecology. However, due its length and newness, the former title Interstitial Cystitis, or IC, is still commonly used. Throughout the article, we'll use a combination of the two terms with the abbreviation "BPS/IC"


Bladder Pain Syndrome, or as it was formerly known, Interstitial Cystitis, is a challenging diagnosis for several reasons:

      1. It is a diagnosis of exclusion
      2. The gold standard test is non-specific
      3. Symptoms overlap with other conditions
      4. There aren’t many viable treatment options
      5. Etiology and pathophysiology are not well understood

Dr. Erin Duecy, Director of the University of Rochester Urogynecology and Reconstructive Pelvic Surgery Division and Professor of both Urology and Obstetrics and Gynecology, says, "Bladder Pain Syndrome (BPS) can be tricky for both the patient and the provider evaluating and treating them. Too often, patients are diagnosed after many years and seeing multiple providers; ideally, we want earlier recognition and diagnosis."

Clearly, there is much work to be done to increase our recognition and early diagnosis of BPS/IC.

But, Dr. Duecy warns, it’s truly a balancing act: "We also don’t want to casually diagnose a patient with a chronic pain syndrome that can be difficult to treat unless we are sure of that diagnosis. BPS/IC commonly coexists with other pain syndromes/conditions that also need evaluation and treatment to ensure a meaningful improvement in symptoms and quality of life."

In this article, we'll review what BPS/IC is, how it presents, what it can be mistaken for, how to initiate a work up for it, and when to refer to a specialist.


What is Bladder Pain Syndrome?

Bladder Pain Syndrome (BPS/IC) is a complex chronic condition characterized by inflammation in the bladder and recurring severe pain in the suprapubic region, urinary urgency, and frequency.

BPS/IC is a life-altering diagnosis that can lead to emotional distress and greatly impact quality of life. For that reason, it is important to perform a complete workup before telling patients that they have this syndrome.


How does Bladder Pain Syndrome Present?

The "classic" presentation of BPS/IC is a patient who describes increasing pain/pressure as their bladder fills that is relieved temporarily by emptying their bladder, only to have the cycle repeat itself. They may report voiding small amounts as many as 20-30 times a day in response to that pain.

Some patients experience these symptoms every day but many experience cycles of pain episodes triggered by stress, sexual activity, and certain foods and beverages.

According to Dr. Duecy, typical BPS symptoms include:

      • Urinary urgency
      • Urinary frequeny
      • Nocturia
      • Suprapubic pain that may be temporarily eased or relieved after voiding

Other symptoms may include: urethral pain, bladder pain, vaginal pain, rectal pain, and dyspareunia.

Importantly, BPS/IC does not typically cause incontinence.

Unless a patient is presenting with the "classic" symptoms, it can be difficult to distinguish BPS/IC from Overactive Bladder (OAB), which also presents with urinary urgency, urinary frequency, and nocturia. The main differentiating factor may be the pain component.

Prior to diagnosis with BPS/IC, people are often diagnosed with recurrent bladder infections but will frequently have negative urine cultures when symptomatic.

Some patients will also be diagnosed with microscopic hematuria based on >3 RBC/hpf on urine microscopy with a corresponding negative urine culture when they are symptomatic. However, it’s important to keep BPS in mind, because if they also have urinary symptoms BPS/IC might be the cause.


What Other Conditions Should Be Considered?

The differential diagnosis for common BPS symptoms is quite broad, and includes, among other things:

      • Urinary tract infection
      • Sexually transmitted infection
      • Bladder stones
      • Overactive bladder/Urge urinary incontinence
      • Pelvic floor dysfunction/tension myalgia
      • Endometriosis
      • Diabetic neuropathy
      • Bladder cancer
      • Pudendal neuralgia


What Should Primary Care Providers Know About BPS/IC?


Dr. Duecy recommends that primary care providers "recognize the classic symptoms of BPS/IC and refer those patients early so we can make the diagnosis and initiate treatment as early in the chronic pain cycle as possible."

In addition, she emphasizes that providers should keep an eye out for the patients who frequently report bladder infection symptoms but have negative urine testing, as well as patients who have a history of other pain syndromes (IBS, chronic fatigue syndrome, chronic pelvic pain) who report urinary symptoms.

As the symptoms present in BPS are fairly common, it is entirely appropriate for primary care providers to conduct an evaluation prior to referring patients to a specialist.

That may include:

      • UA microscopy and urine culture when symptomatic: get to rule out bladder infection and check for microscopic hematuria
      • Void diary: have the patient record how many times a day they urinate (bonus: have them measure their voids) and look for a pattern of frequent small voids (ex: voiding 10-15 x a day, < 200 cc void volumes)
      • Trigger diary: have the patient record diet and activities that trigger symptom episodes (common triggers include sexual activity, stress, exercise, acidic foods, spicy foods, caffeine, alcohol)
      • Initiate treatment for OAB/UUI with a medication: if they get better, the diagnosis is most likely not BPS/IC
      • Refer for pelvic floor PT: they can evaluate for pelvic floor dysfunction/tension myalgia and help treat symptoms


When Should Patients Be Referred to Urogynecology or Urology?

Dr. Duecy encourages referrals early and often:


If you suspect BPS/IC, refer! If that is not the diagnosis, there is still something going on that should be evaluated.

Dr. Duecy


What Should Patients Expect from their First Urogynecology Visit?

When you refer a patient to urogynecology with concerns for BPS/IC, they will receive a comprehensive workup to exclude other conditions. This will include a through history of urinary symptoms and pelvic exam, and often includes urine testing.

If microscopic hematuria is present, the patient will likely undergo an additional evaluation to rule out urinary tract malignancy.

Additional tools to assess and treat BPS/IC may include cystoscopy, bladder instillations, pelvic floor physical therapy, and medications.

Ultimately, a BPS/IC diagnosis is often confirmed by positive response to treatment - and treatment is usually multi-modal and often multi-disciplinary.

The first visit is a balance between evaluating specifically for BPS/IC and identifying other pelvic floor or pain conditions that may be causing or contributing to the patient’s symptoms.

Patients should not expect a definitive diagnosis at the first visit. Each patient’s diagnosis and treatment process will be different depending on their symptoms and exam.


Key Points on BPS/IC:

      • BPS/IC presents with suprapubic pain, urinary urgency, and urinary frequency
      • BPS/IC does not typically cause incontinence, which can serve as a clue that there is a different etiology for the patient’s symptoms
      • BPS/IC should be considered in patients with recurrent UTIs without positive urine cultures
      • If you suspect BPS/IC, refer to a urogynecologist or urology early