Issues of identity, perceptions and isolation: An interpretative phenomenological analysis of women’s experience of Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome

Rebecca Gilfillan, Pelham Carter*

*Corresponding author for this work

    Research output: Contribution to journalArticlepeer-review

    1 Citation (SciVal)

    Abstract

    The objective of this study was to explore the personal experience of women with MRKH, a rare condition characterised by congenital abnormalities of the genital tract. There are very few qualitative studies into the lived experiences of women with MRKH. Interviews were conducted with 13 women with MRKH and analysed using interpretative phenomenological analysis. Four superordinate themes are discovered: maintaining a viable female identity; acceptance and coping; normality, secrecy and shame and the isolating impact of a lack of knowledge amongst the medical profession. This study also suggests that societal ideals of a ‘normal woman’ are influencing how MRKH impacts on the self-experienced psychological health. It is suggested that the psychological wellbeing of women with MRKH could be improved with continued multidisciplinary support beyond the initial diagnosis and alongside any vaginal correction.
    Original languageEnglish
    JournalJournal of Health Psychology
    DOIs
    Publication statusPublished (VoR) - 28 Sept 2023

    Keywords

    • amenorrhoea
    • disorders of sexual development
    • identity
    • interpretative phenomenological analysis
    • MRKH

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