My Not So Secret, Secret. (TMI post)

So. Now that I have decided to “come out” and tell my secret with the world, I want to try to educate you as much as I can with what Mayer-Rokitansky-Kuster-Hauser Syndrome is. I don’t want to type that out every time I refer to it so I am going to call it MRKH from here on out.

After the initial shock wore off, we made another trip to Cleveland Clinic to speak to the specialist to learn a little bit more ourselves. This time my very supportive and long term boyfriend came with us so he could also learn. But yea, you want to talk about awkward?! Picture me, my mom, my dad, and the boy who was sexually active with their daughter…all talking about her small vaginal canal and lack of a uterus. Just wait. It will become more awkward. I promise.

MRKH affects 1 out of 5,000 girls. It mainly affects the reproductive system. It causes females to have an underdeveloped uterus, vaginal canal, and cervix, however, all three or just one can be totally absent, like my MIA uterus. Things about MRKH I haven’t touched upon:
     Girls with MRKH look normal on the outside (which is another reason I didn’t know anything was wrong). My breasts were developed. I went through normal puberty besides having my menstrual cycle. From the outside I looked like what I was supposed to look like according to health books and PLAYBOYS (face it girls, we all looked). Not to mention, my boyfriend never said anything. I thought I was good.
     The “underdeveloped vaginal canal” means it is shorter and narrower than normal.
     Some cases of MRKH also have minor hearing loss (which may explain why my sister thinks I talk so loud and why I tend to not hear my mom, well, that or I just have selective hearing)
     Some girls with MRKH also may skeletal problems and spinal problems, such as scoliosis.
     I also have read that in some cases, some girls may have only been born with one kidney.

Believe it or not, there was good news in our second visit. As the specialist talked to us, she explained that although I could never CARRY a child, I would still be able to have a child that would be GENETICALY mine. I have my fallopian tubes and I also produce eggs. SCORE! So, if my future husband and I decided to have kids, we would be either to A. adopt or B. have a surrogate (they would take my husband’s sperm and implant it into my egg and implant that little concoction into a gestational carrier who would then carry our GENETIC child). I will get into those two options a little later into the blog.

Awkward part. Let’s talk about my vaginal canal, shall we? I was 17. I was sexually active. GASP! So, how is that possible with an under developed vagina? It’s not really. What I mean by that is…it is possible, but not nearly the way it was meant to be enjoyed. Sex for me in one word…painful. Because I was underdeveloped, the canal I had at that point was “man-made” so to speak. The more active I was with my boyfriend, the more I would stretch. The specialist suggested, in front of my parents and boyfriend, that I use a dilator. You see, if I went periods without penetration, my canal would start to shrink. But because sex was always so painful for me I would never want to engage in it, but it was only painful because I was small(ish) in that area. Catch 22. I declined. I wasn’t comfortable talking about having a dilator to try to fix something I hadn’t fully come to terms with yet.

13 years later and I’m only now starting to scratch the surface

The Car Ride Home

Okay so I know many of you are probably wondering…”how is she sexually active with an under developed vaginal canal?” I promise I will get to that.

But for now let me bring you back to the doctor’s office when she just told me I was never going to be able to carry a child. Oh and along with just being told I had no uterus and a tiny vaginal canal; in front of my mother and my father. Now at this point in the game they both already knew I was sexually active but it’s a little more embarrassing when I have to talk about the size of things and the lack of things with them there. But luckily, I have the greatest parents and they were/are wonderful with everything. My family has been through a lot up until that point and my diagnoses of Mayer-Rokitansky-Kuster-Hauser Syndrome (MRKH), was one more thing for us to tackle together.

The moment the doctor told me that news I pretty much shut up, which is a lot for me. I just went blank…numb. I blocked out everything she said after she told me I wasn’t able to have a child. I had pictured my life. I had it all planned. I was going to get married. I was going to be a wife. I was going to be a mom. I was going to be happy. One sentence changed everything I had imagined for myself.

The ride home was one of the longest in my life. I just laid in the back seat. I remember staring at my dad while he drove. I can still picture him. We were all pretty quiet. Up until that day, none of us have ever heard of MRKH. We never even knew that was possible. Especially me. Why was I born without everything I needed? Why was I the lucky 1 out of 5,000 girls that it affects? Why me? I couldn't help but to think about my parents. I wonder if they blamed themselves since I am a product of them. I didn’t want them to feel guilty for creating a broken child.

And that’s how I felt. Broken. On the ride home, I kept thinking about all my dreams and plans about being a mom were now just shattered. I could never carry a child. I wasn’t like every other girl. I was different….a freak. I remember feeling lost.

Why couldn’t I just be normal?

Wait. What?

As a teenager, I couldn't help but notice all my female friends were getting visits from their friend once a month. I still think men experience the monthly mood swing, but that's another topic. Anyway, I kept waiting for mine. Sure now I hear everyone curse it. But as a growing teen, that was your sign as "woman hood". So by the time I turned 17 and I still didn't get my visit, my mom became worried. 

Close you eyes mom. I was sexually active at the time with my longtime boyfriend. I didn't know any better. I was more worried that MAYBE I was supposed to start but I was pregnant instead. I couldn't tell you how much money I wasted buying tests just to make sure. Like I said, I didn't know any better. But I should've known then that moms are always right and she knew something was wrong. 

We went to go see the local gynecologist. I just remember the pain that I had to sit thru when he wanted to give me an ultrasound and then another. Drinking so much fluid and then having to hold it while he pressed down over and over, omg I thought I was going to explode! Then I remember one time I drank TOO much so he had me go to the bathroom so I could let a very tiny amount out. Yea okay. Imagine the Hoover Dam having a lil crack in it and it has to close before  all the water just bursts thru. That was my bladder. Anyway, after a number a tests, the local gynecologist wanted a second opinion so he sent us to see a specialist at the Cleveland Clinic. The specialist was a pediatric gynecologist so I was a lil confused because I considered myself an adult. I was technically still a minor so I had to go see the children's doctor. So here come more ultrasounds and more tests. 

But, the outcome was very different. 

Me, my mom, and my dad all sat down in the doctor's office, not a patient room, her actual office. She started to tell us that after numerous testing to try to find my uterus, they were unsuccessful because it wasn't developed. I was born without a uterus and an under developed vaginal canal. And I could never carry a child. 

Wait. What? 

This is me.

Hi. So I'm going to give this whole blogging thing a try and see how it goes. 

My name is Teri. I'm 30. Recently divorced and I moved back into my mom's house. Go me, right? No, this isn't going to be a blog about how terrible my marriage was or about me totally bashing my ex. Truth is, we just grew apart. I acknowledge I could have done things better but having him in my life made me realize things about myself and relationships in general and I will forever be grateful for the time we shared  and I will love him, always. And that's all I'm going to say about that. 

This blog is going to be about a topic that I have very rarely spoken about. Many people know that I cannot have kids. But most people don't know how or why. This blog is going to be about me opening up about how I felt when I found out when I was just 17. How I felt embarrassed and ashamed to be me. How I felt like I was less of a woman. How I felt like I was....broken. This is going to be about how I feel like I will never be able to experience what it feels like to have someone call me "Mom". This blog is going to be about my journey with Mayer Rokitansky Kuster Hauser Syndrome

Ladies, I hope on some level you can relate. Guys, some of my posts may be TMI. But honestly, I'm not doing this for any of you. I'm hoping that by me finally being able to talk about this and getting it out in the open, it will be some type of release and help me heal. You can read it or not. Love it or hate it. I'm sure many of you, relatives including, may think I should keep this private. But like I said, this is for me. I just hope you all can understand it.

-T