We Should Be Talking More About MRKH
Unique fertility journeys more often than not begin when an individual or couple decides to start a family. But what about when the journey starts at the age of 16? When you have no serious partner, no plans to start a family, and no one like you to turn to? That is the reality of those diagnosed with MRKH—my reality.
Like many other women with MRKH, I was diagnosed after I hadn’t received my menstrual bleeding. My mother took me to her gynecologist, who referred us to a specialist to do a sonogram. I remember lying there on the exam table, my stomach and pelvic area slimy with sonogram gel, and the doctor asking to speak with my mother outside the room. I was a minor, so there were a lot of conversations I was not included in at the time.
When they came back in the doctor proceeded to tell me I had MRKH, or Mayer-Rotitansky-Kuster-Hauser syndrome, a unique condition where a female is born without a uterus and often an underdeveloped vaginal canal. Ovaries are present, but there is nothing to link them together, or as my current fertility doctor says, “it is a plumbing issue.” In short, I could have biological children but would need a gestational carrier to have them.
At 16 years old, what do you do with this information? I was too young to think about a serious future with a partner, had absolutely no desire to start a family, and had never heard of anyone else with this “odd” condition. Perhaps it was the stigma society holds over women to bear children or the fact that I was not ready to grapple with such heavy questions at 16, but I decided to bury it deep inside myself.
I declined offers to attend support groups, only discussed it with the select few family members who knew about my diagnosis, and came up with lies to explain my frequent trips to Boston where I would see my adolescent MRKH specialist. I even told people I got birth control shots to explain why I didn’t have a tampon for them to borrow. In the end, that compartmentalizing, which I thought was self-preservation, only lead me to view my MRKH condition as shameful and seeing myself as a lesser woman.
It took years of consistent weekly therapy in my mid-to-late 20s for me to understand the true meaning and impact of my condition. Through this self-acceptance process, I realized my differences aren’t shameful, a support community is a beautiful thing, I am the best teacher of MRKH, and it is okay to take it slow when starting a family.
I learned my differences are not deficits, but rather they make me uniquely me. I worked on not judging myself as lesser—less of a woman, less of a wife, less of a future mother—because I was not born with all the “standard parts.” Having a uterus does not make me better at those roles. And whoever said not being “standard” was a bad thing anyway? As one of my friends put it, “Would we love you less if you had a glass eye or a prosthetic arm? No, of course not.” I now try to embrace the difference, and let it make me a more understanding and empathic human.
I found solace in the fact that other people can be the best medicine. You prove nothing going on this journey alone. Opening up to others can not only be liberating, but I found most people I chose to confide in to be more curious, supportive, and understanding than judgmental. Many provided me with a perspective I didn’t see before but needed, and a few shared their own journeys with me, reinforcing that everyone has a unique story and things they are working through.
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I started to focus on awareness and expanding people’s knowledge on the subject. MRKH affects 1 in 5,000 women, which when you think about it is not that uncommon. Think about all the women you have come across in your life, a handful most likely had MRKH and you probably had no clue. Yet, there is still so little out there on the topic.
Even my GP’s nurse responded, “Wow, the doctor isn’t going to believe this” when I told her I was born without a uterus and therefore don’t have menstrual bleeding. Just because there is limited literature and awareness on MRKH doesn’t mean it isn’t worth discussing, and if I don’t start the dialogue who else will? Sure, there are a series of 5-10 questions each person has when I share about my MRKH, but I would rather be asked questions than live my life hiding my condition.
I was thoughtful as I embarked on my unique fertility journey. My husband and I regularly talked about starting a family. I actually credit him with helping me see I had depression and anger associated with my MRKH and encouraging me to fully explore it before diving into the egg retrieval process. I am so grateful for his love, support, and reassurance that whatever speed we went at was okay.
I wanted a fertility practice that had a similar philosophy and point of view. Through my husband’s cousin, we found the Colorado Center for Reproductive Medicine, which across all 13 locations sees the highest concentration of MRKH couples in the country. Dr. Levine and his staff practice the compassion I had hoped to find. There is no rush to get it done, but rather a desire to take the necessary time to understand and feel comfortable with each step of the process.
After reading other MRKH stories I find each has this in common: a part of a life lived on a “need-to-know-basis” where there is more secrecy than healing. I get it. Only in the past 5-10 years have people openly started talking about their fertility struggles, and before then, keeping it on the DL was common. But going forward, I am hopeful that future generations of women with MRKH can work towards self-acceptance in a new era of fertility dialogue, sharing openly without stigma or shame.
Allison Lipsey lives in New York City with her husband and their 8-year-young boxer. She hopes by sharing her experience with MRKH it will bring light and education around a rarely talked about fertility condition and encourage other women who live with MRKH to be accepting and open about their diagnosis.