I'm Glad I Never Told...

I just want to say thank you to all the wonderful people in my life.  You are truly amazing, and I am so lucky that I have surrounded myself with such incredible people.  I decided to tell my friends about MRKH on Monday (October 8^th) via my blog.  The outpouring of love and support from my family and friends has been amazing!  I have even gotten emails and messages from other people thanking me for sharing my story, and in return, they shared theirs with me.  There are lots of other people out there who cannot have their own children for lots of different reasons, and I want to say thank you to those people who have shared their stories with me.  

This blog entry is about the people I’m glad I never told…This should be a good one.

I’m glad I never told the guy that was making out with my face and neck, but never would kiss me on my lips because he had a girlfriend. (Side note:  I only found out he had a girlfriend after I tried to kiss his lips).

I’m glad I never told the guy who was supposed pick me up from work (when I lived in Florida) and take me to West Palm Beach to meet his parents (He never showed up, so I didn’t get the chance).

I’m glad I never told that stranger on the bus (that would have been weird).

I was glad at the time that I never told one of my friends in middle school because I got to pretend I knew what she was talking about when she was deciding what kind of tampons to use (she preferred OB…in case you were wondering).

I was glad at the time that I never told my PE teacher because then I wouldn’t have been able to use “cramps” as an excuse to get out of running the mile.

I am glad I didn’t tell the random guy in the female isle of the grocery store when he asked me which kind of “pads” he should buy his girlfriend.

I’m glad I took so long to tell people because if I would have done it any earlier, I’m not sure I would have been ready.  I am sure there are many other people I was glad I did not tell…  There might be another blog post about it another time. 

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 :) 

Uterus Transplant?

Ever since I read this article I cannot stop thinking about it.  You can read the story here, but it basically is talking about how a mother had her uterus removed and gave it to her daughter who has MRKH.  However, the medical team will not consider this a successful transplant until the daughter has given birth to a healthy baby.

I have pretty much planned on adopting since the day I found out about having MRKH.  However, now that I am married I guess someone else has a say in it as well. My viewpoint has always been "everything happens for a reason..." Cheesy I know, but its something that I honestly believe.  There are so many children out there in the world who need and want a loving home, that it doesnt make sense for me to NEED to have biological children. Sure, I think I'm awesome and I think my husband is slightly less awesome than I am, and together we would have really, really awesome babies...but thats not what its about to me.  I dont need my genes passed down from generation to generation.  A parent is someone who raises a child.  I dont care (anymore) that I will not have a child come out of my uterus (plus, I have a hard enough time staying in shape as it is!).  So, the uterus transplant is not for me (although my mother did say she would give me hers if I wanted it).

Back to the uterus transplant...Something I did not know is that segregate mothers illegal in some places.  Even some states in the United States. I think that is crazy!  I also do not understand the reasoning behind it, so for some people the uterus transplant may be a very valuable option.

Side note: I am lucky to have found a man who loves me for me, and who doesnt care that I cannot have his biological child.  I dont feel like this is something all men are ok with.  I feel so lucky every day!  He is 100% supportive, and I could not imagine going through life without him.

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 

Crap, I'm 30

I really cant believe I am 30!  It seems like just yesterday I was 3. Ok, well maybe not yesterday, but it definitely cannot be 27 years ago.  But if I feel this old, I can only imagine how my parents, and my husband (currently 31) feel! Over the last 30 years are there have been only a handful of days that I remember as vividly as I remember a day in 1997.  Let me explain a little bit about what my life was like before the day I am about to mention.  I have always felt pretty normal; great family (even though they my parents were divorced, that seems to be the norm), played sports (I wasn't naturally athletic, I had to work hard),  had great friends (still do!), I was a solid C student (totally ok with that), took summer vacations with my parents,  had boyfriends...You get the picture, I was about as normal as I could be.

 Except one thing...I was 15 and hadn't started my period.  As far as I was concerned, this was a great thing!  All my friends had started their periods and hated it! They were always complaining about having cramps, they couldn't participate in PE, and had to worry about bleeding. YUCK! Why would I want that?  I had big boobs, and that's pretty much all I really cared about. I think my mom asked me every day for an entire year "Have you started your period yet?", and I am pretty sure I responded with "Don't you think you would know?  Its not like I am going to go buy tampons by myself!" Then one day my mom didn't ask me the question, she just poked her head into my room and said "I made you a Dr.'s appointment to find out why you do not have your period." I was annoyed!  I didn't need to go to the Dr. I was sure everything was fine.  BUT, I was 15 and wasn't good at telling my mom "no" yet, so I went.

 The appointment was scheduled for a week later.  My mom and I met with my normal Dr., he asked me all sorts of questions and checked out my body.  I remember him telling me I "was developing quite nicely".  He did not have an immediate answer for what was going on with my body, so he scheduled an ultrasound to check my insides.   The ultrasound didn't reveal any answers, so they sent me to get an MRI.

A few days later the Dr. called and wanted my mom and I to come back into the office.  Since they were calling us back in, we assumed that they had found something and it wasn't something they wanted to tell us over the phone.  My mom called my dad (who lived a few hours away), and he came along to the Dr. appointment also.

So, this brings me to the day in 1997 that changed my life forever. My parents and I walked into the Dr.s office and he said "blah, blah, blah, blah, blah, blah, blah....you don't have a uterus... blah blah blah blah blah." ummmm, ok....I don't really know what that means. I am only 15. I saw both of my parents cry and assumed it must be bad.   What do I need a uterus for anyway? I think my Dr continued talking, but I have no idea what he said after that. I cried, but I wasn't really sure why I was crying. My parents hugged me a lot, and I could tell they were sad, but I couldn't really understand what the bid deal was.  Did my missing uterus just mean that I wasn't going to have a period, because I would have been totally ok with that!