SUFU 2021: Community Perception of Natural Supplements in the Treatment of Interstitial Cystitis/Bladder Pain Syndrome

( Natural supplements are alternative treatments commonly used by patients with interstitial cystitis/bladder pain syndrome (IC/BPS). But they lack effective research. The aim of this anonymous 40 question online survey, posted to the Interstitial Cystitis Association’s Facebook page, was to better understand the IC/BPS community’s perception of the use of supplements to treat their symptoms.

It was designed to elicit responses from people who have the diagnosis IC/BPS, capturing their demographics and perspectives on their disease management strategies, including supplements. There were 461 respondents that completed the survey (432 female, 29 male). Over 85% of respondents indicated they were “somewhat,” “very”, or “highly” likely to take a supplement for IC/BPS symptom relief or prevention, 75% having no apprehension about taking supplements. Of the remaining 25%, over half cited side effects as their reason for apprehension. Other reasons included questionable efficacy, lack of regulation/evidence, price, medication interactions, and concern for triggering symptoms/allergies. Respondents found supplement recommendations from doctors and health consultants to be more trustworthy than peer or online reviews. 144 (31%) were taking supplements for chronic symptom management, while 158 (34%) reported taking supplements to control flare symptoms.

The most commonly used supplements in both groups were aloe vera, Prelief, and d-mannose. Supplements were the fourth most common management strategy for both chronic and flare symptoms, after diet, medications, and reduction of sexual activity. Almost 60% of respondents taking supplements reported some degree of efficacy. This survey mimics what we hear in the clinical setting, as most patients are open to supplements and actively take them despite their lack of efficacy and possible side effects.

Presented by: Paige Kuhlmann, MD,1 Kai Dallas, MD,1 Jason Blake,2 Andrew Chen, MD,1 Victoria Scott, MD,1 Jennifer Anger, MD,1 Karyn Eilber, MD,1

  1. Cedars-Sinai Medical Center
  2. DesMoines University

Written by: Diane K. Newman, DNP, CRNP, FAAN, BCB-PMD, Nurse Practioner and Co-Director, Penn Center for Continence and Pelvic Health Adjunct Professor of Urology in Surgery during the 2021 Society of Urodynamics, Female Pelvic Medicine & Urogenital Reconstruction (SUFU) Winter Meeting