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Background  Understanding reasons for and impact of women’s toileting behaviors on bladder health is important to prevent and manage urinary incontinence (UI) and overactive bladder (OAB).    Methods  Women, regardless of urinary incontinence (UI) and overactive bladder (OAB) status, were recruited in Pennsylvania and North Carolina. Focus groups were conducted by trained female moderators and sessions were audiotaped. Participants completed an anonymous questionnaire containing validated items to determine the presence of UI and OAB. Audiotapes were transcribed and content was analyzed by two investigators to identify themes.    Results  Twenty-four women participated (mean age 68 ± 13.4 years); most had UI (75%) or OAB (87.5%). Many women had difficulty in describing bladder health, and talked about bladder function, diseases or conditions, and control over the bladder. Four themes about toileting emerged: 1) cues/triggers/alerts women used to find and use toilets, 2) toilet cleanliness away from and at home, 3) toileting as a nuisance, and 4) situational awareness. Women described internal (e.g., sensation of heaviness) and external cues/triggers/alerts (e.g., walking by restrooms), and the trade-off between their concerns about public toilet cleanliness and the need to urinate. Some women expressed being irritated or annoyed about having to stop activities to urinate. Most women reported sitting on their home toilets, whereas, many hovered or stood over the toilet in public places.    Conclusions  The information gained from this study will facilitate the development of relevant public health messaging and interventions to raise public awareness about UI, OAB, and bladder health with the aim to encourage women to seek help when symptoms are present.    Electronic supplementary material  The online version of this article (10.1186/s12905-019-0740-3) contains supplementary material, which is available to authorized users.

“A secret club”: focus groups about women’s toileting behaviors