Understanding the Diagnostic Odyssey of Women with Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome in Denmark: A Qualitative Interview Study

Lou, Stina; Jensen, Amalie Hahn; Vogel, Ida; Trolle, Birgitta; Herlin, Morten Krogh

doi:10.1016/j.jpag.2024.03.003

Journal of Pediatric and Adolescent Gynecology

2024

DOI: 10.1016/j.jpag.2024.03.003

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Understanding the Diagnostic Odyssey of Women with Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome in Denmark: A Qualitative Interview Study

Stina Lou,

Amalie Hahn Jensen,

Ida Vogel

et al.

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2024

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Cited by 2 publications

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Composing a Life as a Pediatric and Adolescent Gynecologist

2024

Journal of Pediatric and Adolescent Gynecology

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Composing a Life as a Pediatric and Adolescent Gynecologist

2024

Journal of Pediatric and Adolescent Gynecology

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Experiences of vaginal lengthening treatment and sexual well‐being in women with Mayer–Rokitansky–Küster–Hauser (MRKH) syndrome: An interview study

Jensen,

Herlin,

Trolle

et al. 2024

BJOG

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ObjectiveTo explore how women with Mayer–Rokitansky–Küster–Hauser (MRKH) syndrome experience dilation or surgical vaginal lengthening treatment, and their current sexual well‐being.DesignA qualitative interview study.SettingDenmark.PopulationWomen aged ≥25 years diagnosed with MRKH syndrome.MethodsSemi‐structured video interviews were conducted with 18 women. Interviews lasted a median of 92 min and were digitally recorded, transcribed and anonymised. Data were analysed using thematic analysis.Main Outcome MeasuresA qualitative analysis of women's experiences.ResultsThe analysis identified three themes. Firstly, Experiences with dilation treatment revealed dilation as an awkward routine, especially for adolescents living with parents and yet to sexually debut. While some experienced successful vaginal lengthening, others faced treatment failure leading to frustration and self‐blame. Secondly, Experiences with neovaginal surgery described the procedure as extremely painful but resulting in a ‘normal size’ vagina. Some women felt that the procedure had negatively impacted their self‐confidence, and all underscored the importance of maturity before opting for surgery. Lastly, Current sex life and sexual well‐being indicated a well‐functioning sex life for many women, but with reported low sexual confidence and genital self‐image due to the perceived ‘deviance’ of their genitalia.ConclusionsFor women with MRKH syndrome, vaginal lengthening treatment, whether through dilation or surgery, may result in a ‘normal size’ vagina. However, according to the women's experiences, vaginal lengthening treatment does not adequately foster positive sexual esteem and genital self‐image.

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Understanding the Diagnostic Odyssey of Women with Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome in Denmark: A Qualitative Interview Study

Cited by 2 publications

References 34 publications

Composing a Life as a Pediatric and Adolescent Gynecologist

Composing a Life as a Pediatric and Adolescent Gynecologist

Experiences of vaginal lengthening treatment and sexual well‐being in women with Mayer–Rokitansky–Küster–Hauser (MRKH) syndrome: An interview study

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