'There's nothing wrong with you; you just need to lose weight' - a qualitative exploration of pelvic floor dysfunction among women with multiple sclerosis and their interaction in seeking pelvic healthcare

Christine Addington*, Andy Bradshaw, Suzanne Hagen, Doreen McClurg

*Corresponding author for this work

    Research output: Contribution to journalArticlepeer-review

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    Abstract

    Introduction
    Within 10 years of multiple sclerosis (MS) progression, nearly all women will have experienced symptoms associated with bladder, bowel and/or sexual health. Yet despite the impact these symptoms have on physical, psychological and social well-being, it remains an underserved area within the UK healthcare system.

    Study Aim
    This research employs a participatory research approach framed within the principles of intersectional feminism to collaboratively investigate the lived experiences of pelvic floor dysfunction (PFD) and healthcare interactions among UK-based women with MS.

    Setting and Participants
    Women residing in the United Kingdom with MS were invited to participate in online interviews facilitated by the primary author.

    Analysis
    A thematic framework analysis offering a structured yet adaptable approach to data collection and interpretation.

    Results
    One focus group involving four women with MS and seven individual, one-to-one interviews with women with MS provided insights into the challenges associated with navigating both MS and PFD. Four main themes included: Navigating MS and PFD; Cycles of Control; Mind, Mobility and Bladder Embodiment; Silenced Voices: The Impact of Taboos/Stigma/Dismissal on Preventing Access and Resistance through Collective Community. Six subthemes were also identified. Taken together, these themes cumulatively reflect PFD as an unmet healthcare need.

    Conclusion
    Our findings underscore negative healthcare experiences, inadequate information provision and unmet needs related to PFD, emphasising the compounding effects of gender and disability biases.

    Impact
    We hope that these insights can lay the groundwork for developing tailored therapeutic interventions and improved PFD healthcare for women with MS. Potential solutions include using existing MS support communities.

    Public Contributions
    Women with MS were actively involved in co-producing interview scripts for one-to-one interviews. The primary author shared study findings at an MS group event, engaging in discussions with over 30 individuals, including people with MS and their loved ones. MS advocates played a pivotal role in contextualising the study within the broader lived experience of MS.
    Original languageEnglish
    Article numbere14152
    Number of pages11
    JournalHealth Expectations
    Volume27
    Issue number4
    Early online date15 Jul 2024
    DOIs
    Publication statusPublished - Aug 2024

    Keywords

    • multiple sclerosis
    • pelvic floor dysfunction
    • participatory research
    • intersectional feminism
    • qualitative methods

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