Living with a Rare Reproductive Syndrome

I can’t lie, it’s been a difficult few months.

As a matter of fact, scratch that, it’s been a difficult few years.

I’m almost 25, and I cannot believe it has been nearly 10 years since I sat in a bright pink room at my OBGYN’s office as she told my mom and I that I had a rare syndrome called Mayer-Rokitansky-Küster-Hauser (MRKH).

To be honest, at first I just thought she was wrong. She had the wrong clipboard, the wrong tests, the wrong girl. I was fine. At 16, I hadn’t had my period yet, but since I lied to just about everyone in my life about it (including myself), I kind of pegged it as a non-issue. This lady was crazy, I was going to get my period any day and reach full “womanhood.” I already had developed in every other way, the above-average size of my breasts was a weirdly hot topic in my 8th science class, so it truly was just not possible what this woman was telling me.

Except it turned out that not only was it possible, but it was true.

She told me she had never seen this syndrome before (something I would later hear from many doctors), but that she was confident I would still live a fulfilling and happy life despite a missing uterus, missing ovary and other issues regarding my endocrine system.

Her genuine desire to make this all OK went as far as informing my mother that there were doctors in North Carolina who were working on technology to grow uteruses. WHAT! What are you saying to me? Please stop.

In hindsight, I know she was trying to help, just like every other person in my life who has had NO clue what to say to me in regards to being the girl with MRKH, but at the time it all just felt like a bunch of words that were meant for someone other than myself.

Nearly 10 years later, I am realizing they were definitely meant for me, just maybe not the 16-year-old scared-to-death, wondering if sex would hurt for the rest of my life me.

Since then, I have had quite a few wonderful people try to help me in a variety of ways. My cousin/best friend/sister uses humor to ease the pain by joking how lucky I am to not get a period. Sometimes I want to punch her for that, but most of the time I actually completely agree. Sorry about that, my sisters.

My boyfriend of the last four years encourages me to channel that inner middle child strength and be tough and strong and do something about it. He sends me articles, blogs and Facebook groups and is really the rallier. He doesn’t let me wallow.

And my mom, the actual best person on the planet, just listens. Even when I don’t really say anything. She’s gone to every doctor’s appointment and never seems rushed when she’s late for work or when one of my siblings needs to be somewhere. She is the busiest person on the planet, except when I need to talk to her about this.

I have a weird, vague remembrance when it comes to that first year before I was diagnosised. I have a really difficult time remembering all the doctors I saw and all the blood work that was done. I certainly cannot remember many emotions from that time, but I do remember my mom always holding my hand in the car.

But other than these core people, I’ve spent the last few years avoiding this topic with every single person who unknowingly reminds me what it’s like to be Katie + MRKH Syndrome.

I think of it this way because sometimes I truly forget I have this syndrome. I mean, I guess I never forget, but there’s plenty of times when I’m just not thinking about it at all. I’m always Katie. Very short, very loud, unbelievably messy hair and extremely expressive facial reactions. But I think of myself as all of those things plus MRKH. I try to think of it as an added layer to my impressive complexity rather than the ultimate feature defining who I am.

That’s why I don’t think about it too often, unless:

  • I meet a relatively new group of women who don’t know about the “+MRKH” and they begin chatting about their periods and I pretend that mine is awful that month, as well.
  • I see a pregnant woman.
  • Someone asks me about having children someday.
  • Someone who I barely know mentions how difficult it will be to carry a child with my body frame (this has happened to me more than three times).
  • I have a doctor who is actually Googling MRKH inside the patient room while I am essentially staring at the computer screen.

The period conversation definitely happened more in high school, but I haven’t experienced that as many times as you’d think. I don’t see pregnant women that often, is that weird? When I go to the gyno I do, but I’m already in a MRKH frame of mind on the way there. The children one I never really experienced for years, but now, at the ripe young childbearing age of 25, I get this one a lot.

But the doctor one, that was new.

I’ve had only one doctor who has actually treated another person with this syndrome, but the rest at least had the decency to walk into the room acting like they knew what happening inside of me.

This particular doctor couldn’t even pretend. She couldn’t even Google outside of the patient room. She actually looked up how much estrogen to give me, while mentioning more than five times that I don’t need progesterone because I don’t have a uterus.

Listen, lady, I know you may have just discovered I don’t have a uterus, but I’ve known about this for awhile, thanks.

At first, it made me really sad. A little ashamed even. I can’t pinpoint exactly why, but I felt embarrassed that I was being treated like such a puzzle. And not in the good. In the Grey’s Anatomy doctors all arguing about who gets to be on my case kind of way.

The shame actually always starts with the nurse, who asks me every single time when my last period was. Is there really no way to flag this question? I’m not the most sensitive person in the world, as a matter of fact, I’m pretty tough, but seriously…. Every. Single. Time.

I try not to hold it against these individual people. How are they supposed to know? I recognize that. It seems like a really simple and tiny question in the grand scheme of the entire medical operation, but to me, it hurts big every time.

Once I left my doctor’s appointment that day, I realized I was actually very angry. I’m a 24-year-old woman living in a city with “world-renowned” healthcare. I’m arriving late to my job for this appointment and my mother took off time to drive me… all just to have a doctor GOOGLE my syndrome right in my front of me! I can only imagine how “wonderful” healthcare around the country is for the thousands of other women with this syndrome?

This experience also forced me to realized how lonely I felt about my syndrome. I’ve never met a person with MRKH. Not one. This isn’t because there’s no way for me to reach out. There are organizations dedicated to creating a community around MRKH warriors, and yet, I’ve hardly ever looked into any of them. It wasn’t until I left that doctors office that I realized it’s because I’ve subconsciously been made to feel ashamed of this syndrome that no one could see. As if, because it’s invisible to people, I should continue to hide it.

It’s taken years, but I’ve finally come to the realization that I don’t need to hide it. I don’t need to lie to people about my period out of fear of making them uncomfortable. I need rid myself of reservations about reaching out to other women with MRKH. I won’t feel shame when my doctor doesn’t know how to treat me and I can’t stay silent about how this syndrome affects me and my fellow MRKH warriors.

I believe in a world where people open their minds and mouths to speak out on things most people don’t understand. Throughout my life, I hope to find ways to encourage other women to share their perspectives and journeys, while I continue to push myself to do the same.

For more information on MRKH, please visit www.beautifulyoumrkh.org.

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Katie Rush

Katie is a lover of all things Cleveland and a big advocate of healthy dinners and delicious desserts. She loves writing about her hometown and how to live physically and mentally healthy.

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