Evaluating symptom severity and urinary cytokine levels in interstitial cystitis/bladder pain syndrome patients, with and without Hunner's lesions

PURPOSE: Interstitial cystitis/bladder pain syndrome (IC/BPS) is a condition characterized in part by urinary urgency, frequency, and pain. There is a strong interest in gathering more data to compare and assess the differences in characteristics based on the presence of Hunner's lesions in patients with IC/BPS. MATERIALS AND METHODS: Using a nationwide crowdsource effort, we collected surveys and urine samples from patients with a history of IC/BPS. Participants completed the Interstitial Cystitis Symptom Index (ICSI) and Problem Index (ICPI), Overactive Bladder questionnaire (OABq SF), and pain scores. In addition, participants reported any co-morbidities and lifestyle modifications. Urinary cytokine levels were measured and compared to symptom severity. RESULTS: 491 participants enrolled: 119 with history of ulcerative Hunner's lesions (UIC), 372 reported no lesions (NHIC), and 2 unknowns. 96.3% were female, and prevalence of UIC was equal for both genders. Average age was higher for UIC vs. NHIC group (P = 0.011), as was the duration since diagnosis (P < 0.001). Symptom scores were elevated in UIC patients (P < 0.001). Both groups widely implemented lifestyle modifications, with dietary changes being most prevalent (70.1%), followed by prescription medication usage (63.1%). More UIC compared to NHIC participants experienced co-morbidities (P = 0.010). Urine samples were analyzed for GRO, IL-6, IL-8, and MCP-1. MCP-1 levels were significantly higher in UIC patients (P = 0.044). Weak positive correlation was found between cytokines and symptom scores. CONCLUSIONS: Patients with UIC and NHIC from across the United States displayed distinct phenotypic and urine biological characteristics. These findings contribute to increased understanding of IC/BPS and may aid in improving our knowledge of the condition.