Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) is a congenital disorder (meaning people are born with it) that affects around 1/5000 people assigned female at birth. Those with MRKH are born with an absent or underdeveloped uterus, cervix, or upper vagina.

MRKH can have strong psychological impacts on those affected, often resulting in low self-esteem, higher levels of anxiety and depression, and sexual distress. This is often worsened by societal pressures surrounding womanhood, mainly because those with MRKH usually don’t have a period and cannot become pregnant.

Because there are so few cases of MRKH, there is also only a small amount of research on the condition, usually discussing surgical and medical interventions to create superficial vaginas or dilating the vagina in an attempt to achieve a degree of vaginal sexual function.

Researchers aimed to expand upon current research by interviewing 12 women with MRKH about their experience with sex, relationships, self-image, medical care, and infertility conversations.

Effects on Self-worth and Self-image

Interviewees reflected that they had struggled with their genital self-image and feelings of unworthiness because they couldn’t meet the societal standards expected of women when it comes to sexual function and fertility. Meaning, because they may be unable to have vaginal sex or become pregnant, women with MRKH (especially at younger ages) may be concerned about pleasing their partner or being seen as inadequate.

Additionally, due to increasing research on and advocacy for surgical interventions to create a more stereotypical vagina, women with MRKH may have internalized the notion that they are not normal. This can reinforce the idea that they will not be seen as adequate to future sexual partners or feel comfortable with their own bodies.

However, interviewees did reveal they were later able to begin accepting their uniqueness and navigate new ways to be sexually active that worked for both them and their partner(s).

Ways of Coping

Through their interviews, researchers found that supportive partners played a large role in the ability of the interviewees to cope with MRKH. Being able to have open, non-judgmental conversations with sexual and romantic partners about sexual needs, feelings of inadequacy, and concerns about infertility tended to help interviewees be more comfortable in their sexual self, reducing sexual distress.

Interviewees also expressed that taking the time on their own to explore their sexuality was helpful for later conversations with partners. Exploring sexual activity outside of penetrative sex that is satisfying to both partners is a large part of improving sexual wellbeing for those with MRKH. This could include anything from “dirty talk,” to erotic touching, to non-vaginal penetrative sex (oral, anal).

Concerns Over Surgical Interventions and Efficacy

There are currently a few medical and surgical options available for those with MRKH. This includes creating a neovagina, or surgically created vaginal canal, and options for vaginal dilation in an attempt to elongate the vaginal canal.

When asked about these options and how they were presented, interviewees had mixed responses. Some expressed that they felt a sense of normalcy and agency with the idea that they may be perceived as normal, and some expressed concerns over the intentions. They wondered if the purpose of these interventions was for their own comfort or if they were offered for the comfort of those without MRKH and future partners.

Especially with the neovagina, the participants of the study expressed concerns over sexual function. They asked questions like: Would they still be able to enjoy sex and achieve orgasm through vaginal intercourse? Would they now have to struggle with painful sex? Would their partner know their vagina was “fake?” For these reasons, researchers recommended that clinicians and patients should be in lockstep about the decision-making process.

Key Takeaways

• This was a qualitative study focusing on the sexual activity and well-being of women with MRKH.
• Due to the size of the study, this may not accurately capture the experiences of every person with MRKH.
• Women with MRKH may struggle with feelings of inadequacy and not feeling normal.
  • Supportive partners play a large role in improving sexual distress through open and non-judgmental conversations surrounding sexual activity and infertility.
• Those with MRKH may choose to accept their uniqueness as a way of coping with the alienation and stigma brought on by societal norms surrounding intersex individuals.

Resources:

• Rajesh, Z., Marshall, N., Hunker, K. E., Merletti, J., Garas, M., Morton, A., Ball, S. A., Gibson, M. E., & Pukall, C. F. (2026). Understanding the impact of Mayer-Rokitansky-Küster-Hauser syndrome on sexual wellbeing—a qualitative study. The Journal of Sexual Medicine, 23(1). https://doi.org/10.1093/jsxmed/qdaf309