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
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