Friday, December 28, 2012

Womb for Rent?

I have been thinking a lot lately about having a surrogate carry our baby.  During my research I ran across this article about surrogates in India.  I am just curious what people think about it. I am not sure that it is something I could personally do, but maybe for someone.  My Doctor, Jason and I think it would be great to know the person carrying our baby, or at least know of the person. It would be a bonus if they lived close...That being said, anyone want to carry our baby?  I am only a little bit joking :)

Monday, December 3, 2012

Youtube video

This is a great Youtube video about someone else with MRKH.  Check it out here

Wednesday, November 7, 2012

The Old Days

Some of you know that I am currently a college student, and have been for about 13 years. No, I'm not a Dr...I just really love going to different colleges and taking lots of pointless classes. But all of that is almost coming to an end. I will officially be done at the beginning of March!  YIPPY!  Anyway, the reason I mention this is because I have been taking a lot of woman's history / marriage / family classes and part of me finds them to be very sad.  I have read, ok more like skimmed several books that talk about woman in the old days and their roles in their family's.  Basically, their role was to be a baby maker, and take care of the family.  If they couldn't have children, then their husbands would divorce them, and no one would ever marry them again.  I just think that is so sad.  And even today in my MRKH support and awareness group on facebook, there are woman from all over the world on there.  One woman from another country said her family has basically disowned her because they feel she is useless.

What if I was born in the old day's? I cannot imagine my life like that. Those woman must have felt so alone. Anyway, I am glad I was born when I was.  And I hope that I can make other woman who maybe feel this way now, know that there is hope for them, and that they are not alone.

I did a google search for famous woman that have is what I came up with...Interesting :)

  • Eva Braun - Adolf Hitler's longtime companion!  Awesome, I am so glad we have something in common...also, we are both German. Although, this cannot be confirmed many believe that she had MRKH.
  • Amalia of Oldenburg  I have no idea who she is, but apparently she is famous and had MRKH 
And that concludes the list...Although someday, you might be able to add Jen Irwin to that list :) 

I Guess Not Everyday Can Be Good

Well, I'm just going to say it...I cant always have a positive attitude.  This week is definitely one of those weeks.  I have just been having a frustrating time with Dr. stuff.  It seems like I cannot really get any answers.  So I guess all of this frustrating Dr stuff is partially my fault. Besides this last week, I haven't really seen a Dr about my MRKH condition since I was 16 or 17 years old.  And even though I went back to the same Dr, they  don't keep records past 10 years. 

Jason and I were talking a few weeks ago and we decided we would maybe like to look into the possibility of having someone else carry our child (meaning, they would still use my eggs and Jason's "stuff" to put into another woman's uterus), before we explore the adoption process. So, I made an appointment with the Dr to explore this option.  The Dr. was great.  He spent an hour and a half talking to us about what our options would be and answering questions that we had (I could not believe he spent this much time with us).  I had some blood work done that day to start testing certain hormones and other stuff I don't understand.    They called me back later that day and told me I needed to come in for MORE blood work the next Monday.  So I did.  They took 15 tubes of blood for more testing. I was pretty sure I was going to die. The most annoying thing on this visit was the nurse.  When I first sat down to get my blood taken she asked if I was on my period.  I politely said "No, I dont have a period."  Then she asked "When was the last time you had your period.?"  And again I said "Never, I dont have a period."  Then, not even 5 minutes later she asked me again "When was the last time you had your period?"  This time I answered the question very annoyed "I. DO. NOT. HAVE. A. PERIOD!"  Then she just stared at me...but I think she got the point.

After my blood work, I had an ultrasound done to see if they could see what kind of condition my ovaries are in.  They did the typically ultrasound (the kind you have when you are having a baby), and then the did the vaginal ultrasound...That was super fun!  They stuck this big dildo looking thing up my vagina (sorry, I don't know how else to put it). The results were inconclusive, so now I am having an MRI.  I have not scheduled it yet because when I called to make the appointment, the scheduler said "I have never seen this kind of MRI test come across our desk before, so I will have to call you back when I find out what to do..." Still waiting.

Ok, enough bitching for now. I do have to say that I have an amazing husband who has been with me though all of this.  He has come to every appointment. He has wiped my tears, hugged me tight, and made me laugh. Even without a uterus, I think I am the luckiest girl in the world! 

Wednesday, October 10, 2012

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 8th) 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. 

Monday, October 8, 2012

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 :) 

Wednesday, September 19, 2012

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.

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, 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!