Research Horizons


Müllerian Agenesis: Room for Improvement in Care, Counseling

Pediatric and Adolescent Gynecology | Top Scientific Achievement
2023 Research Discoveries Illustration of vaginal shortening and some of the other birth defects that can occur for those born with Müllerian agenesis, also known as Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome.

Müllerian agenesis, also known as Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome, is a congenital condition that results in underdevelopment of the uterus, cervix and upper two-thirds of the vagina. MRKH affects 1 in 5,000 individuals assigned female sex at birth. This condition results in infertility and can have a significant psychosocial impact. The condition also results in a shortened vaginal canal. Individuals with MRKH are often diagnosed by and seek care from gynecologists. This care can include lengthening of the vaginal canal through dilation and surgery when indicated. 

A study led by Christine Pennesi, MD, in collaboration with researchers from Beautiful You MRKH and Michigan Medicine suggests that vaginal lengthening experiences vary by region and between individuals.  

Overall, 616 individuals with Müllerian agenesis from 40 countries responded to an in-depth survey about their experiences. Of the respondents, 54% received one or more vaginal lengthening treatments. The most common treatments were dilator use (72%), coital dilation (34%) and surgery (39%). Notably, 46% of the respondents reported seeking no vaginal lengthening treatment. This varied by geography, with 59% of respondents in North America and Europe reporting treatments compared to 16% among women from Africa, Asia and South America. Shared themes showed both positive and challenging aspects of vaginal lengthening including difficult physical symptoms, practical and psychosocial challenges, intimate relationships and sexual satisfaction, and impact of experiences with healthcare providers. 

Our findings show room for improvement in the counseling and care of individuals with MRKH, particularly around vaginal lengthening,” Pennesi says. There is a need to educate healthcare providers so they can support patients in accessing appropriate, comprehensive and longitudinal care.” 

Pennesi and her team at the MRKH Care Center at Cincinnati Children’s aim to increase awareness about Müllerian agenesis among providers and provide comprehensive care to individuals with MRKH. 

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Publication Information
Original title: International Experiences with Vaginal Lengthening Treatment Among Individuals with Müllerian Agenesis: A Mixed-Methods Study
Published in: Journal of Pediatric and Adolescent Gynecology
Publish date: May 12, 2023
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