Don't Act Weird Around Me

I just want to make one thing clear.  I AM NOT AFRAID OF TELLING PEOPLE ABOUT MRKH.   If I'm being honest...I have a lot of really great family and friends who love me for me, regardless of what body parts I am missing.  I couldn't care less about what the rest of the world thinks. I love my life, and I am totally comfortable in my own skin. The only thing that has prevented me from telling the world about MRKH is how people act around me. I LOVE watching other people in uncomfortable situations just as much as the next person, ( I think this is why I love reality shows, embarrassing my husband, and button pushing just a little too much) I just don't really enjoy being in them myself. I just don't want other people to feel like they need to edit what they say in front of me just because I don't have a uterus.  I don't edit what I say in front of you because you do have one. Plus, how are you supposed to know? Its not like I wear a shirt that says "I don't have a uterus"...although how funny would that be? Talk about a possible uncomfortable situation.  Here are some examples of what I am talking about. 

I found out I could not have children just before my 16th birthday.  When I was almost 18 a family  member who was the same age got pregnant. For whatever reason, people wanted to keep it a secret, probably to spare my feelings, and I did not find out she was having a baby until she was 8 months pregnant and it was very hard to hide.  Lets go over how keeping this a secret could possibly make me feel better. 
1. I definitely would not notice a new baby around, which in turn would not remind me that I cannot have kids. 
2. I was not aware that most other woman could have babies... so keeping this a secret was a REALLY good thing. 
Does anybody else see how silly this sounds?   When you hide stuff like this from a person who has MRKH, it only makes them feel not normal.  Trust me, we know that most other people can have babies, and most of us have come to terms with it.  Please do not stop talking to us like normal women!

The first guy I ever told about MRKH was a douche bag (pardon my french)! It was right out of high school and I finally had the courage to tell someone other than my family about how I was different from most girls (besides the obvious; really sexy, amazing personality, hilarious...).  At first he acted like it didn't bother him, but then he started acting really weird around me.  When I asked what was wrong he couldn't deal with the fact that I didn't have a uterus.  I never really understood that.  How are you not ok with that fact that I don't have a uterus.  The part that really bothered me was he didnt take the time to understand what MRKH really meant. He was very judgmental and close-minded about the whole thing.  Oh well, it just makes me glad I don't have a uterus, that way I don't have to date idiots! 

So...long story short. Don't act weird around me.  Yes, i am strange, but its not because I have MRKH, its just because thats who I am...uterus or no uterus :) 

Turns Out It Has A Name

So, not only does this "situation" have a name, turns out I am not the only person in the world who has it.  Its called  Mayer-Rokitansky-Kuster-Hauser Syndrome...try saying that three times fast.  From now on I will just call it MRKH syndrome, it seems much easier. The cause is unknown, but what doctors do know is that when a fetus grows in a mother's uterus many systems develop, including the reproductive system, which happens to include the uterus, vagina, Fallopian tubes, and ovaries. These are formed during the first few months in the mother's womb.  So basically this system starts to develop but doesn't completely finish. Because it can happen at different stages, every person who has MRKH has it a little differently.  There are a few other symptoms that come along with it for some people;  hearing problems, skeletal abnormalities, kidney abnormalities, or being born with only one kidney. I think I have hearing problems, but that hasn't actually been proven. Seems kind of weird I know...but someone once described it to me like being born without a finger (this makes me feel better because I know so many people born without a finger).  

I bet you are wondering how many people this actually effects.  Once I tell you, you are going to feel even more special that you know me.  It effects about 1 in every 5000 women.  Seems kinda crazy because do not even know 5,000 people!  But, I'm not going to lie...I feel kinda special, I have (or don't have) something that you don't. 

There is not a lot of information out there about MRKH.  It was discovered at John Hopkins in Massachusetts, but a lot of doctors dont even know about it.  I had to drive to a Dr. hours away to get any kind of information.  I lucked out because it turned out the Dr I went to knew a guy that worked at John Hopkins who knew a guy, who knew a guy, who knew a guy...  Anyway, I was finally able to get some answers.  

Here is an interesting study done on MRKH