I have Gonadal Dysgenesis: Type XX

I was 15 and there was a movie on Lifetime about a girl who got married and couldn’t have kids. It turned out she didn’t have a uterus. I looked at my mom and said, that’s going to be me. She just looked at me and said, “why do you say that?” I’m not sure why I ever thought that. But that moment has always stuck with me. Have you ever had that feeling that you know in your gut is true?

Warning, for all those guys out there that don’t like hearing about lady business, it’s coming up ahead. 

I was 18 and hadn’t started my period yet. I had gone to the doctor for four years in Burlington. This is a reason I won’t trust my life at that hospital. They kept saying, “You’re a late bloomer. You are in dance and cheer leading and sports, so you are just too active.” I told my mom I needed to go somewhere else. It’s not that I wanted to have my period, it was that I wanted to feel normal like my friends. I wanted to develop and grow up. I felt so self conscious of my body.

In 2003, My mom took me to the University of Iowa Hospitals about an hour away. They looked around and took some blood samples. An hour or so later, I was pulled into the doctors office. Not the exam room, but actual office. I remember hearing that I have Gonadal Dysgenesis. I also remember him saying that when I was a 7 week old fetus, the blood flow wasn’t getting to certain areas and therefore I didn’t develop any eggs. The rest is kind of a blur. I remember crying and my mom feeling terrible. I think he said something about me being able to do Invitro Fertilization.

My mom didn’t know what to do. How could she? It was an emotional day for both of us. Who could I talk to about this? Was anyone else in my family like this? At first, I didn’t talk about it much, but then I realized that I needed to talk about it. I needed to get it out there. It has truly helped me cope with my disease. I love being an open book and educating people about it. I won’t hide from it. I’m not a victim from it.

In 2008, we found out that I didn’t have ovaries. We were learning so much.

In 2011, I decided to go to the Mayo Clinic to get more answers for my condition. My doctor Katherine in Portland, did a few tests and actually found a streak of an ovary. Mayo explained that there are different types of Gonadal Dysgenesis. One of which is cancerous. We spent two days at Mayo and they said the streaks could be cancer. They asked me a few questions and he felt that I most likely XX and not XY (the bad one).

While we were at Mayo, they said that I will never be able to carry a child. Not even through IVF. My body physically won’t be strong enough. It was hard to hear, but I had about 10 years of knowing that I probably wouldn’t be get pregnant. They also said if I tried, it would be around $50K. It was hard to deal with. But that was just one doctors opinion.I got a letter about a month later saying that I was type XX. A big relief.

Let’s fast forward to today, March 22nd, 2015. I have seen so many doctors and heard so many different things. There is much more that I could say about my condition, but in a nutshell, here it is:

I have a Uterus. That’s it. No eggs, fallopian tubes, ovaries, etc. No reproductive parts. But at least I have a uterus.

Jake and I have met with a few reproductive specialists and this will be my story, our story. We are going to seek the great perhaps. We don’t know what the outcome will be, but we invite you along on our journey.

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2 thoughts on “I have Gonadal Dysgenesis: Type XX

  1. I’ve always loved how open you are and I’m so glad you are inviting others to support you guys on this journey. I am hear for you and am very excited for you two! Love us and miss us!

    Like

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