Tuesday, July 31, 2012

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 

Monday, July 30, 2012

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!