Understanding the impact of Mayer-Rokitansky-Küster-Hauser syndrome on sexual wellbeing-a qualitative study.

BACKGROUND

Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) is characterized by the absence or underdevelopment of the uterus, cervix, and/or upper vagina. Individuals with MRKH often experience significant psychosexual impacts, including reduced self-esteem and sexual wellbeing. Yet, little is known about their lived experiences of sexual wellbeing.

AIM: To explore sexual wellbeing among individuals with MRKH.

METHODS

Participants (n = 12) were recruited through MRKH Canada and partook in semi-structured interviews centered on their experiences of navigating sexuality. Transcripts were subjected to a thematic analysis by a team of five coders. Themes and subthemes were synthesized and organized according to an inductively developed coding scheme.

OUTCOMES: Themes and subthemes exploring sexual wellbeing of individuals with MRKH.

RESULTS

Three themes captured the experiences of sexual wellbeing in individuals with MRKH. Navigating Sexual Norms touches on the influential role of knowledge and confidence in one's sexual life, the process of resisting norms for partnered sex, and coping with stigma and objectification. Navigating Sexual Relationships addresses evolving partner preferences, sexual communication, and how participants reconcile relationship insecurity. Navigating Genital Self-Image delves into the intricacies of struggles with genital image, coping strategies for genital insecurity, and how medical interventions impact genital image.

CLINICAL IMPLICATIONS: Healthcare providers should address both medical and psychosocial aspects of sexual wellbeing in MRKH. Counseling should include communication strategies, sexual script flexibility, fertility-related concerns, and clear discussion of medical interventions and their impact on sexual wellbeing. Ultimately, comprehensive, ongoing support from both sexual partners and clinicians is essential as individuals with MRKH navigate their sexual lives.

STRENGTHS AND LIMITATIONS: This study provides insights into the multifaceted experiences of sexual wellbeing in individuals with MRKH. The study is limited by a small sample size, which may not fully capture diverse experiences.

CONCLUSION

Individuals with MRKH experience unique sexual challenges and demonstrate adaptation and resilience in the way that they navigate sexual norms, sexual relationships, and genital self-image.