I am one in 5,000. Crazy right? One in five thousand really isn’t that rare. If you think about it, there are 7.442 BILLION people on this planet. If you were to say approximately half of those 7.442 billion people are women, that’s around 744,200 women out there who are like me. Who feel different. Who were told we would never experience a woman’s greatest joy- having a child. 

After finding out my diagnosis, that’s when things really started to change. I was already going through the joys of being a teenage girl. Can you say attitude. I also had previous bouts of depression growing up. My parents sent me to counseling in the past, although I really don’t think it helped much. Then throw in the fact that I was now different than everyone else around me, like really different, and feeling I had to keep this huge moment in my life a secret. I mean, who would understand? It’s kind of hard to be upfront and honest with people and say “Hey, guess what? I don’t have a uterus, I’ll never have my first period, and I can’t have babies!”. Or how to handle normal every day situations. Like when a woman asks you “Hey do you have a tampon?” or when you’re talking to friends and they say “Do you crave chocolate as much as I do when you’re PMSing?” I had to lie. Lie as best I could. And I’ve been lying for the last 10 years. On the inside, I was dying. Will I say something wrong? Will they find out I don’t get my period? I never carry tampons with me. Maybe I should take some of my sisters and keep them in my back pack. It was those moments that really started to affect me. I really started to spiral.

I put my parents through the ringer. I think it was a mix of being upset about my diagnosis but also being upset that no one in my family really knew how to handle all of this. I felt like I was walking in the dark with no flashlight. No guidance. No hand to hold. I felt like I was going through this alone. I was stealing money from my parents and my sisters, sneaking out, not coming home. I was dealing with it the only way I thought I could. I was desperate for acceptance and attention.

One of the biggest worries I had was finding a partner who would understand. Let me back up and explain something. This is getting a little personal but I think it’s important. MRKH affects the growth of your reproductive organs. I have my ovaries but no uterus. Since I have no uterus, I have no cervix. And no cervix meant under developed on the inside, if you know what I mean. I could have sex, but it would have been painful. My doctor said I could have a surgery to help with that. So I did. Which was traumatizing on its own. I was in the hospital for ten days. On top of recovery time after that. Try explaining all of that to your friends. And then the thought of finding a man you love and care about and having to tell him all of this? Not having a uterus. Not having a period. Not ever being able to get pregnant; the only way I could have a child is to have a surrogate or to adopt. Frightening. Terrifying. I convinced myself no man would ever understand. That it was weird. That they wouldn’t want a woman who couldn’t have children. I really felt I would never be good enough to any man. That is, until I met Graham.

I’ve always told Graham he was the one who saved me. Saved me from going down a really bad road. He was my breath of fresh air. He is funny, hilarious really. Ambitious. A little hard headed. Pretty handsome too 😉 But mostly, he makes me feel safe. I remember the very moment I told him about MRKH and what that meant. We went for a drive. Going for drives was our thing. We parked in some parking lot and were just talking. It took everything I had in me to tell him. I was so afraid. Afraid of rejection, confusion, the unknown of what he would think. I told him. He didn’t even blink an eye. He of course had questions, understandably, but I never for a moment felt that he didn’t want to be with me because of it. We obviously were in no rush to have kids at the age of nineteen. But I wanted him to know. He deserved to know. I did think about how it would look when we were older. Like we are now. Married, a fur child, buying our first house, people all around us starting families. All of the pregnancy announcements, the baby bump pictures, the baby showers. I figured it would be hard, but that I could handle it. That we could handle it. Looking back and then looking at where we are now, 8 years later, I had no idea how hard it would really be. To yearn for that next step. To grow a baby in my belly, hear it’s little heartbeat, feel all the little kicks, raise our own family.

But I can’t.  

xx Sam

Do you remember what your life was like at the age of sixteen? I can like it was yesterday. All the raging hormones, pimples, day dreaming about your crush, getting your drivers license, rebelling against your parents (ok maybe I was a terrible child) but you know what I mean. Life was pretty easy and carefree. Sure, you had school and somewhat of a social life to manage. But it was pretty damn e a s y. Now, imagine being a sixteen year old female, trying to figure out who you are, and finding out you will never bear children. Awful right? Well, I can tell you first hand it was the single hardest moment I have ever experienced in my twenty-six years on earth so far. I am still dealing with it to this day. The moment those words came out of my doctors mouth, my life completely changed. And that was only the beginning of it.

I’ll take you back to how I found out I was infertile. When I was fifteen, I still hadn’t had my first period. My mom just thought I was a late bloomer and brushed it off. That was, until my younger sister who was thirteen, started her period. I remember being kind of jealous. How come my younger sister had her period and I hadn’t? My mom would ask me “Are you sure you haven’t had your period and you’re just nervous to tell me?”. I was a very shy kid, very closed off and kind of awkward. But I hadn’t “become a woman” yet. My mom let some time pass and when I turned sixteen, she decided that something wasn’t right. She took me to my first of many appointments. My first was with my OB/GYN.

I remember being calm, but nervous at the same time. Surely, everything was fine. My mom was just being cautious. She asked if I wanted her in the room with me and I said absolutely not. I had never been to an OB appointment and I did not want my mom with me. I thought everything was fine and I could handle it. I was a mature sixteen year old girl after all. *eye-roll* My doctor came in and gave me my exam. My very first exam at that. She was very quiet. I’ll never forget her face. She paused, and said she needed to step out. I remember laying there, with my legs in the air, only in a gown, really starting to get worried. Did she see or feel something? Why did she leave? She had gone to get my mom. She knocked on the door and said “Samantha, you can get comfortable I am bringing in your mom, ok?” I sat up, crossed my legs, and they both came in. She told us she wasn’t exactly sure what she was seeing and that I needed to see a specialist. A specialist? What was wrong with me? What was going on down there? At this point, I am starting to freak out. I am embarrassed, confused, and the look of worry on my moms face made me feel worse. We left and that’s when all the other appointments started.

The next appointment was at an infertility clinic. I remember walking in, checking in for the appointment, and the front desk gal looking at me like why is a sixteen year old girl at an infertility clinic? I remember the other patients looking at me weird too. As we were waiting I sat next to a woman looking at pamphlets about IVF, surrogacy, and sperm donors. What the heck was I doing here? I wanted to run out the door. The appointment did not go well at all. I left bawling my eyes out and feeling violated. My mom was visibly upset as well. He referred me to another specialist. I was starting to get really frustrated. I had no idea what was going on and my mom wasn’t really explaining anything to me. I think she was having just as hard of a time as I was.

A couple weeks later we go to the next specialist appointment, and the name of the clinic was “Women’s Cancer Care of Seattle”. I looked at the name on the door and then to my mom with fear. “Why are we here? Do I have cancer?” I asked her. She said “I don’t have all the answers, we will get more information today”. I was officially terrified. I was convinced I had cancer. After the appointment, followed by MRI’s and other tests, I finally had my diagnosis of MRKH. MRKH is a syndrome disorder that affects females and their reproductive systems where the uterus is severely under developed or absent. She sat my mom and me down. I really did like this doctor, she was finally able to give me a diagnosis. But I felt like she was mainly talking to my mom and not directly to me, the one who is actually dealing with all of this. I started to zone out. What did this mean? Am…am I a girl? Will anyone understand? I looked to my doctor and with tears in my eyes I asked.. “Am I a girl?” She said “Oh yes, you are absolutely a girl, you have XX chromosomes. You just will not be able to bear children. You don’t have a uterus”. Those words and that moment will forever be with me. And my life was completely changed.

I am one in 5,000.

xx Sam