When I was 16 years old, I was diagnosed with MRKH (Mayer-Rokitansky-Küster-Hauser syndrome).
I was born without a uterus, meaning I am unable to conceive.
There are two different types of MRKH. Type 1 affects only the reproductive organs (this is the type that I have), and type 2 includes abnormalities in other organ systems, primarily in the renal and skeletal systems. MRKH is a condition that affects 1 in 5,000 women. My diagnosis also makes my husband, Josh, and me one of the 1 in 6 Canadian couples that struggle with infertility. These statistics show me that I’m not alone, but, more often than not, I’ve felt so alone. Reflecting back on these last 10+ years, I think there were a few different variables that came into play with regard to my feelings of isolation.
At first, I was definitely in denial and refused to accept my diagnosis.
This led to me having an “out of sight, out of mind” mentality, in which I suppressed the reality of my diagnosis and all of the emotions that went along with it. I think this was a huge factor in my isolation, because denying my diagnosis meant that I was also refusing to seek any type of support, whether through professional help or from others in similar situations. I felt so alone because I didn’t know anyone like me, but at the same time, I never really tried to reach out or look for others because I was afraid. My diagnosis made me feel abnormal, when, as a teen, all I wanted was to fit in with my peers.Being a teen was another isolating factor because I felt forced to suppress my diagnosis, for fear of being judged and ridiculed. In all honesty, I feel like my initial feelings of being abnormal and alone stem from societal expectations of what is and isn’t “normal” and appropriate to openly discuss.
I’m not sure if anyone else can relate, but I felt like reproductive health and the ways in which families are created was taught in a very black-and-white manner back when I was in school. Never did I learn about the various ways that families can be created through advanced reproductive technology,
and I think that that’s a huge downfall in our society,
because it’s normalizing only one of the ways families are created—the “old-fashioned way.” I felt forced to stay silent for fear of being judged because my body was “abnormal” and I wouldn’t be able to conceive naturally.
Receiving my diagnosis included a whirlwind of specialists, physical exams, diagnostic imaging, and blood tests. No one was sure what was “wrong” with me at first, and I personally didn’t feel like there was anything wrong. Physically, I felt perfectly fine, and my only symptom was amenorrhea. When I finally received my diagnosis, I remember feeling devastated and heartbroken. I’ve always wanted children of my own, and being diagnosed with MRKH was a huge obstacle to achieving that dream—not just the dream of having kids, but of getting to physically experience pregnancy. I wanted so badly to be able to literally grow a human
being inside of me, to feel those first movements and kicks, and to have that “pregnancy glow.” I can’t tell you how many times, as a child, I would stick pillows under my shirt and pretend I was expecting, or how much time I spent playing mother to my dolls. I know I’m not the only one that grew up fantasizing about a future family,
but not once did I think I would have difficulties achieving that dream of parenthood.
Since I was only 16 at the time of my diagnosis, no one really explained to me what my options would be to create a family, because I wasn’t at a stage in my life in which I was ready to actually start a family. That being said, part of me thinks that it would have eased a lot of the stress and anxiety I felt if I had known right from the start that options like surrogacy existed. I felt hopeless after I received my diagnosis, but it turns out that there is still hope, with methods like IVF and surrogacy. And while that might be our only path to having biological children, it’s a relief to know that it’s not our only option to having children; we can always create our family by adopting. When I was first diagnosed, I remember my mom asking the physician whether a uterus transplant would be possible whenever I was ready to start my family. At t
he time that physician had said no, but science has come a long way since then, and it’s so exciting for me to hear about the advances in reproductive health that are being made. There have been successful uterus transplants that resulted in successful pregnancies and births. This gives me hope that in the future, methods like uterus transplants will be more readily available as an avenue of hope to achieving one’s dreams of expanding their family.
Being introduced to the idea of having a surrogate carry my baby definitely gave me hope during a time in which I was feeling incredibly defeated. While I’ve still had to process and grieve the fact that I possibly won’t ever be able to carry my own pregnancy, I’m just so incredibly grateful that surrogacy is even an option. I’ve spent a lot of time dwelling on the aspects of my infertility that are simply beyond my control, which has never led to a positive outlook. Now, I’m trying to change my mindset, remind myself what my goals are, and do whatever is within my control to achieve those goals. Sure, I might not be able to carry my own pregnancy, and it’s incredibly sad to miss out on that experience, but if my goal is to have a biological child, there are alternative ways to achieve that. Having this mindset helps restore my hope and positive attitude as we begin our journey toward parenthood.
I’ve spent the past decade feeling a mixture of denial, shame, embarrassment, sadness, and anger. I would go through phases of “why me,” and, as a teenager/young adult, all I wanted was to be “normal” and fit in, so I didn’t dare tell any of my friends about my diagnosis. I pretended to look for a pad or tampon when asked for one, knowing full well that I didn’t have any because I had no need for them. I memorized a few different birth control brands, so that if and when my friends were discussing the topic and asked me what I used, I would have an answer ready. It became harder and harder for me to avoid thinking/talking about my infertility once Josh and I got married. “So, when are you two going to start having babies?” seems to be an all-too-common question for newlyweds. While it’s an innocent question and a theoretically exciting topic of conversation, a question like this sends me on an emotional rollercoaster, and was heartbreaking to answer prior to accepting my diagnosis. It reminded me that I’m “different” and forced me to think about my infertility and all the uncertainty that lies ahead.
A massive weight was lifted off my shoulders the day I decided to go public with my diagnosis, and what that meant for Josh and me in terms of starting a family. I’ve spent a lot of time angry and in denial about my infertility over the years, but once I accepted my diagnosis, I realized that there are infertility and MRKH communities that exist, and I am most certainly not alone.
Today, my diagnosis doesn’t define who I am, or what I am capable of achieving.
It’s something I’m learning to live with and learn from. I used to hide my diagnosis from the world, but now I’m owning it. It’s a part of who I am, and my dealing with the obstacles thrown at me because of it makes me a stronger person.
To be quite honest, I wish I hadn’t been so afraid to just speak up and share my truth with my friends all those years ago. It would’ve saved me so much fear and embarrassment, and so many awkward moments if I had just been open and honest. When I did finally share my story with others, not only did a huge weight lift from my shoulders, but I was also embraced with so much love and support. While I might regret not sharing my story sooner, my hope is that by sharing it now, as well as what I’ve learned over the last 10+ years, I will be able to help others like me. If I can perhaps bring change to policies or increase the government resources that are available for people battling infertility, or if I can help make just one person feel like they’re not alone, then that’s something I feel compelled to strive for. Whether you’re a teenager hearing your MRKH diagnosis for the first time, beginning your journey to parenthood, or in the midst of fertility treatments, just know that you’re not alone. I see you, and am right there with you offering my love and support. You will never be alone, nor should you feel any sort of shame or embarrassment for sharing your own unique story.