MRKH: The Hidden Syndrome

MRKH syndrome personal story
One question I got from a peer once was, so are you a boy?
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When I tell people that I have MRKH (Mayer-Rokitansky-Küster-Hauser) syndrome they tend to look at me with a blank and confused look. I’m not surprised, because this syndrome isn’t widely discussed, and the direct cause still alludes the world’s best doctors and scientists alike. This has always surprised me, because we are 1 in every 4,500 women. This really isn’t all that rare, but it’s truly a hidden syndrome.

As a sixteen-year-old, I went to the gynecologist to figure out why I still did not have a menstrual cycle like so many of my friends. My doctor brushed it off and predicted that I was just a late bloomer like my grandmother. She decided to put me on birth control to see if we could jumpstart my period. I was on birth control for about two years with no success other than giving me glowing skin.

At the age of eighteen, my doctors did what seemed like endless amounts of blood work on me for a period of six months. I had so many needle holes in my arms that I was starting to look like a pin cushion. Still they couldn’t find any reason for my lack of a period. Finally, my doctor tried to physically examine me, but she noticed that I was experiencing a lot of discomfort throughout the examination. She decided to send me for an external ultrasound to see what was going on.

When they performed the ultrasound, the nurse got very quiet. Then she said, “You are perplexing us.” She couldn’t find my uterus and she pointed out how my ovaries were in random locations and not where they are supposed to be. I just thought, what could that possibly mean?

After the ultrasound, the doctor brought me into her office and told me that the tests revealed that I had MRKH syndrome and she explained that it meant I would never be able to carry my own child, because my uterus simply never developed. Yet, I do have working ovaries so it’s possible for me to have biological children via surrogate in the future. Finally, she told me that I have a partial vaginal canal, so I could have a normal sex life with the process of dilation therapy.

I felt a mix of emotions upon getting this news, including relief because the look on her face coming into that room was like she was about to tell me that I had a terminal illness. This life altering news was so confusing and the weight of how much it would impact my life was starting to set in. I was just a teenager and was supposed to be focusing on my approaching graduation day and plans for the future. Yet, at that moment it seemed like my future was a lot less bright.

When I did more research, I found out that Mayer-Rokitansky-Küster-Hauser or MRKH is named after the doctors that formally discovered it. This syndrome is where the uterus is underdeveloped or completely absent while the external genitalia and other signs of puberty are normal. One question I got from a peer once was, so are you a boy? No, MRKH women are genetically female. We appear to be like any other female on the outside, but our true condition is often kept secret. Essentially a hidden syndrome that goes undiscussed due to the fear of judgement from others.

With such a life changing diagnosis, it’s common for depression to take hold. When I first found out as a teenager, I confess I felt like a mutant and like I couldn’t relate to anyone. I felt the need to withdraw from others. Being a teenager is hard enough but adding this on top of it was a lot for someone so young to deal with. Especially since I have always wanted a family one day.

With the lack of awareness surrounding MRKH, most people don’t know the right things to say when they learn someone has this syndrome. Most people spout out uncomfortable responses such as, well you can always adopt right? People mean well but troubleshooting someone’s syndrome isn’t the best way in my opinion. Adoption is not necessarily right for everyone nor should it be referred to as a default option. Instead, I wish others would choose a different approach. Something like, “Thank you for sharing that with me. I’m here if you need anything.” That is how you truly support a friend or loved one.

The most confusing part of MRKH and what still bothers me to this day, is the lack of knowledge surrounding it. Doctors and scientists still have not discovered the definitive cause. Questions run through my mind like, how can it be prevented? Can I pass it on to my future child through surrogacy? All these questions are left unanswered and yet they impact thousands of women every day.

The challenges are still there. Occasionally, it is difficult for me to watch as all my peers have children and get married. It’s just not quite as easy for someone like me to live a typical life like everyone else, because that one obstacle is always in the back of my mind. I will be open and say that dating can be tricky. There is the inevitable awkward conversation to explain this syndrome and how it may impact our relationship. There is really no right time to tell a partner. Personally, I do not feel ashamed of my syndrome, so I try to explain it as early as possible.

You always hope it won’t scare them off. There have been men in my life that ended our relationship because they didn’t like the idea of me not being capable of carry their child in the future. Naturally, this is painful and harmful to a person’s sense of self-worth. For the longest time it made me feel like I couldn’t trust other people. But after years of dating, I now see I dodged a bullet the men that left me because of my syndrome. There are plenty of kind hearted and genuine people out there that care far more about you than any potential obstacles you may face together. I always remind myself to believe in the goodness of others and one day I will meet the right person.

Now that I am twenty-nine I’ve done pretty well with accepting my syndrome and trying my best to laugh it off with humor. I’ve come very far since I was once that confused teenager in the doctor’s office. There is nothing I can do to change how I was born, so I try not to let it define me. As Dr. Seuss once said, “When something bad happens you have three choices. You can either let it define you, let is destroy you, or you can let it strengthen you.” All those years ago, I chose to let it strengthen me.

With MRKH you may have the feeling that you are odd and alone. I have never met another woman with my syndrome. There is really no obvious way to know someone else has MRKH and most women hide the fact. Thankfully, there are many organizations popping up that are bringing MRKH women together such as the Beautiful You Foundation. I truly hope to meet others like me one day.

The good news is that with time, you learn how to find the humor and persevere in this situation. After all, we are all human. I confess that I do still have my bad days where I criticize myself and get angry about my circumstances. Yet, for every bad day there far more good ones and that is what I choose to focus on.

While our syndrome may be hidden, the strength of the women with MRKH syndrome is not. I want to reach out to fellow MRKH women and tell them that they are not alone.

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