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Interstitial Cystitis / Painful Bladder Syndrome (IC/PBS)

BASICS

Description

  • Chronic inflammatory condition of the bladder and pelvic region characterized by:
  • Pain, pressure, or discomfort associated with:
    • Urinary frequency
    • Urgency
    • Nocturia
  • Symptoms >6 weeks with no other identifiable cause (e.g., infection or neoplasm).
  • Relapsing/remitting course.
  • Also called: urgency-frequency syndrome, bladder pain syndrome, chronic cystitis, Hunner ulcer.

EPIDEMIOLOGY

  • Female:Male ratio ≈ 5:1
  • Commonly affects adults aged 25–80 years.
  • Prevalence (U.S.): Up to 1.2 million women, 82,000 men (likely underreported).
  • Incidence: 21 per 100,000 females/year, 4 per 100,000 males/year.

ETIOLOGY AND PATHOPHYSIOLOGY

  • Unknown etiology; likely multifactorial.
  • Hypothesized mechanisms:
  • Epithelial permeability dysfunction
  • Mast cell activation
  • Neurogenic inflammation
  • Autoimmune or allergic component

RISK FACTORS

  • Prior urinary tract infection
  • Irritable bowel syndrome (IBS)
  • Allergies
  • History of sexual trauma or abuse

ASSOCIATED CONDITIONS

  • Fibromyalgia, chronic fatigue syndrome
  • Depression, anxiety, panic disorder
  • Vulvodynia, sexual dysfunction
  • Sleep disturbance
  • Chronic prostatitis, chronic pelvic pain
  • IBS, rectal/anal disease, scrotal pain

DIAGNOSIS

Clinical Criteria

  • Symptoms >6 weeks: pelvic/bladder pain + at least one urinary symptom.
  • Exclusion of:
  • Infection (via culture)
  • Malignancy
  • Neurologic bladder disease

History

  • Pain worsens with bladder filling, relieved by emptying
  • Flares related to:
  • Menses
  • Sexual activity
  • Stress
  • Diet
  • Coexisting conditions (e.g., endometriosis)

Validated Tools

Physical Exam

  • Females: suprapubic tenderness, pelvic floor spasm, urethral and vaginal tenderness.
  • Males: may mimic chronic prostatitis; digital rectal exam may show tenderness.
  • Abdominal: assess for tenderness, masses, CVA tenderness.

DIFFERENTIAL DIAGNOSIS

  • UTI, overactive bladder
  • Prostatitis, bladder/ureteral stone
  • Bladder cancer, urethral diverticulum
  • Endometriosis, pelvic prolapse
  • STIs, pudendal neuralgia
  • Pelvic floor dysfunction

DIAGNOSTIC TESTS

Initial Workup

  • Urinalysis + urine culture: exclude UTI
  • STI screen: gonorrhea, chlamydia
  • Urine cytology (if cancer risk)

Additional Tests (Selective Use)

  • Cystoscopy: evaluate Hunner lesions
  • Urodynamics: if diagnosis unclear
  • Intravesical lidocaine challenge
  • Bladder biopsy: only if malignancy suspected

❌ Potassium sensitivity test is not recommended—painful, nonspecific

TREATMENT

Goals

  • Reduce symptoms
  • Improve quality of life
  • Set realistic expectations (no definitive cure)

General Measures (First-Line)

  • Patient education: chronic, fluctuating course; expectant management
  • Dietary modifications:
  • Avoid caffeine, citrus, tomatoes, alcohol, carbonated drinks, spicy foods
  • Lifestyle changes: stress reduction, exercise
  • Pelvic floor physical therapy (avoid Kegels)
  • Behavioral therapies

MEDICATIONS

🧠 Note: Efficacy of medications is variable and often not superior to placebo.

Common Options (Second-Line)

Drug Dose Notes
Amitriptyline 25–100 mg/day Sedation, anticholinergic effects; titrate slowly
Cimetidine 400 mg BID Rare side effects
Hydroxyzine 25–75 mg QHS Sedating; antiallergic
Pentosan polysulfate 100 mg TID FDA-approved; takes 3–6 months; risk of maculopathy

Hunner Lesions

  • Treat with laser/electrocautery ± triamcinolone injections

Intravesical Therapy (Third-Line)

Agent Dose/Frequency Notes
DMSO q2w × 6 weeks FDA-approved; odorous
Heparin 10–20,000 units 3×/week
Lidocaine 1% 20–30 mL Short-term relief

Neuromodulation (Fourth-Line)

  • Sacral neuromodulation for refractory cases
  • OnabotulinumtoxinA intradetrusor injections
  • Oral cyclosporine A for severe Hunner lesion refractory cases

SURGICAL OPTIONS

  • Cystoscopic fulguration of Hunner ulcers
  • Bladder hydrodistension (temporary relief)
  • Augmentation cystoplasty or cystectomy (last-resort for refractory cases)
  • Urinary diversion with/without cystectomy in severe refractory cases

COMPLEMENTARY & ALTERNATIVE THERAPIES

  • Hyperbaric oxygen therapy: minor benefit
  • Acupuncture, glycerophosphate: insufficient evidence

ONGOING CARE

Monitoring

  • Individualized to disease severity and response to treatment

Patient Resources

PROGNOSIS

  • Mild cases: relapsing-remitting; symptoms may plateau
  • Severe cases: progressive; often need multimodal or surgical management
  • Does not increase risk for malignancy

CLINICAL PEARLS

  • Primarily a clinical diagnosis—pain plus urinary symptoms >6 weeks
  • No single effective treatment—trial and error often necessary
  • Multidisciplinary approach important: urology, psychology, physiotherapy
  • Common overlap with depression and pelvic floor disorders
  • Long-term antibiotics and systemic steroids should be avoided

CODES

  • ICD-10:
  • N30.10 — Interstitial cystitis (chronic) without hematuria
  • N30.11 — Interstitial cystitis (chronic) with hematuria

References
1. Clemens JQ et al., J Urol. 2022;208(1):34–42.
2. Imamura M et al., Cochrane Database Syst Rev. 2020;7(7):CD013325.