To qualitatively assess the perception and experiences of bladder instillation for interstitial cystitis among women on Reddit, a widely used anonymous social media platform.

“r/interstitialcystitis,” a Subreddit with >27,000 subscribers, was queried for bladder instillation among women with interstitial cystitis in November 2023. Posts were analyzed qualitatively by 3 independent researchers. Grounded theory principles were applied to derive preliminary themes. These themes were then used to develop emergent themes.

Sixty-three posts with 637 responses published between 2022-2023 were analyzed. Qualitative analysis yielded 4 themes: (1) IC/BPS anxiety and depression, (2) limited treatment options for IC/BPS pain, (3) exhausting all IC/BPS treatment options before bladder instillation, (4) bladder instillation ineffectiveness for IC/BPS pain. Three emergent concepts were derived: (1) a prevailing sense of desperation for relief among women with IC/BPS, (2) women are fearful and apprehensive about bladder instillation, (3) a perception of bladder instillation as the final recourse for women suffering from IC/BPS.

This study represents the first evaluation of bladder instillation as a therapeutic from a social media community focused exclusively on IC/BPS. These results capture patient’s experiences with nonurological associated syndromes and indicate a role for physicians to address mental health concerns in patients with IC/BPS, in addition to opportunities to improve patient education on bladder instillations.