How I’m dealing with a rare condition most women don’t know about

There comes a time in every woman’s life where you start expecting to “expect,” but I have known since I was 16 that that time and that feeling would never happen for me.

I was an innocent 15-year-old girl in high school, wondering why I hadn’t gotten my first period. My mother and various family members chalked it up to my being too skinny, and because some girls are late bloomers, but I knew deep down inside I was not “normal.” I finally convinced my mom to take me to the doctor. My first visit, the doctor tried to do a pap smear but it ended unsuccessfully.

“I think you just have a wall blocking your vaginal canal from your reproductive organs,” he told me, “It’s no big deal, we will just have to surgically remove it. We’ll have you come back another day to do some tests.”

At the exact point when we crossed the threshold out of the room and into the waiting room, I broke out into inconsolable tears. The first thing the nurse said to me was, “Don’t worry, honey. Everything will be alright.” But I knew right at that moment everything would not be alright.

Come the day of my follow-up tests, my doctor had the ultrasound technician come in. I don’t remember why my mom wasn’t in there with me, but she wasn’t, and I was alone. The technician looked at me.

“I’m sorry, but I don’t see a uterus,” she said. I had absolutely no idea what that meant. My doctor then came in with my mom. He looked at me and told me I would never be able to bear my own children. I knew what that meant. It was like a scene out of a movie: I was sitting on the table, he said those words, and then the room turned blurry and all I heard from that point on was blah, blah, blah.

After doing my own research, because my doctor had no idea why I didn’t have a uterus or what my condition was called, I found out I have Mayer-Rokitansky-Küster-Hauser Syndrome, or MRKH for short. I spent a week sulking and crying and then went back to being a teenager.

Now, I’m a 26-year-old married woman with a wonderful husband and a great job. My life is great. But every time I see a pregnancy announcement on Facebook or get that excited text from a friend or, even worse, get the news in person, I give the typical, “I’m so happy for you. Congratulations!” Even though I really want to say “take your happiness elsewhere, because I’m really not in the mood to cry in front of you.” As selfish as that sounds, and I know it is selfish, I can’t worry about other people’s feelings when I’m on the verge of an emotional breakdown. (Side note, if one more person says, “Oh my gosh, you’re so lucky you don’t get a period,” I am going to lose my mind.)

MRKH happens to about 1 in 5000 girls. I am that 1 in 5000, and while it is not life-threatening, it is life-changing. How you deal with those changes is different for everyone, and it’s OK and necessary to reach out for help. There are other women out there that understand exactly what you are feeling, and let me tell you, sometimes those talks will save your life. I am so much stronger than I ever imagined, and 1 in 5000 women are warriors for fighting this.

Although I sometimes want to cry when I see someone’s copy of What to Expect When You’re Expecting, I know one way or another, I will become a mother and it will be the happiest time of my life.

I am 1 in 5000, and that is something to be proud of.

Allison Heidenreich feels very lucky to live and work in beautiful Newport Beach, CA, where she resides with her wonderful husband, Chad, and their 2 dogs. She has a serious obsession with TV and loves to binge-watch Netflix. She can quote ‘Dirty Dancing’ beginning to end and she tries to take pictures as much as she can in her free time. You can follow her on Twitter @MrsHeidenreich or Facebook.

(Image via.)

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