Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome is a rare disorder that causes a woman’s vagina and uterus to be underdeveloped since birth. The uterus may be very small or even absent, and the vagina is shortened.

Often diagnosed during puberty when menstruation is found to be absent, young women with MRKH syndrome may have strong feelings of grief and loss that they cannot experience vaginal intercourse or pregnancy.

Vaginal reconstruction is a surgical treatment option for women with MRKH syndrome to be able to experience vaginal intercourse. However, at this time, little is known about the effect of vaginal reconstruction on the sexual health and well-being of women with MRKH syndrome.

The authors of a qualitative study aimed at shining light on the sexual health of women with MRKH syndrome after vaginal reconstruction conducted semi-structured interviews with 10 women with MRKH syndrome who had had vaginal reconstruction surgery and 20 women without MRKH syndrome (the control group).

All participants were asked about their previous and current sexual experiences as well as their perception of their genitals. The women in the MRKH syndrome group were also asked about whether they disclosed their condition to others, how they were coping with their diagnosis, and their perception of the surgery.

Interviews were conducted in person and were audio recorded, then transcribed verbatim. The researchers then used the transcripts to identify themes among the interviewees both with and without MRKH syndrome.

Seven of the 10 women with MRKH syndrome (70%) reported having sexual intercourse after their surgeries, and four of these individuals reported being satisfied with the experience. Three women in this group (30%) reported sexual distress. In contrast, all of the women without MRKH syndrome had had sexual intercourse, and only two of the 20 women (10%) reported sexual distress.

About half (6/10, 60%) of the participants with MRKH syndrome expressed that they felt they were coping well with their diagnosis. Nevertheless, eight of these women (80%) rated their sexual self-esteem as low compared to 40% of the women in the control group. Furthermore, 40% of those with MRKH syndrome had a negative perception of their genitals versus just 15% of those in the control group.

Lastly, many of the women with MRKH syndrome in this study reported having disturbing, disruptive thoughts during sexual encounters related to the neovagina (i.e., the surgically constructed vagina). Some expressed fears of causing damage to the neovagina, concerns about it being “inferior” to a “normal” vagina, and distractions due to pain or discomfort during sex.

All of these findings suggest that while vaginal reconstruction may allow women with MRKH syndrome to experience vaginal intercourse, these women may require additional psychosexual support to enhance their sexual well-being and have a fulfilling sex life.

References:

• Stepanow, C., Naderer, A., Alexopoulos, J., Walch, K., Wenzl, R., & Leithner, K. (2023). Sexual health and sexual well-being of women with Mayer-Rokitansky-Kuester-Hauser syndrome after vaginal reconstruction: a qualitative analysis. The Journal of Sexual Medicine, 20(1), 57-64. https://doi.org/10.1093/jsxmed/qdac011