*Fair warning* This part of the story may make you more uncomfortable than it makes me. Honestly, I am baring it all here and you can just about see right through me. It’s hilarious now that I am in my 30’s, I was mortified as a teenager. You may have to use your imagination, but I’ll do my best to use language that conveys the message and keeps it “toned” down. This is just the reality that people going through an MRKH diagnosis deal with.
This is the stuff a 17-year-old had to navigate.
(side note: if you know me well, most people don’t, I have a dark sense of humor and find inappropriate things hysterical. Also, I have been educated in the medical field and see a lot, so this is not as weird to me as it may be to you.)
Let me start by introducing you to Jenny. She has always been there. We met when I was 4, she was 5. All my life she was the only friend that could stand me, through thick and thin. Moves and all the changes – we always picked back up like time had not separated us.
I always loved her like a sister and still do to this day, even though life has taken us in two different directions.
She couldn’t stand my boyfriend but tolerated him for me. When I had to go back to OKC for one of the trips, she went with us. My parents had to work and be home because I still had two other siblings that needed them, one of whom was a new teenager.
Jenny was always supportive, loving, kind and positive. She reassured me that I would get through it. She loved me, too. My boyfriend helped me get through things that Jenny couldn’t, but at that time Jenny was the most important person to me.
I have never had another friend like her.
Anyway, the three of us took the drive to see a different specialist. This doctor specialized in reconstruction of the female anatomy.
Because I want you to understand what I was dealing with as a 17-year-old at the time I’m going to give a little info about that.
Why would they suggest reconstruction? As I briefly mentioned, the Tulsa OB/Gyn stated in her findings that I did not have a cervix or uterus. Without a cervix the vagina has no place to go… or grow. So, he was suggesting making one and in his terms “more functional”. As a doctor, you typically base your plans on science and what makes sense in terms of the body and how it “should” work.
The body has a way of adapting to what it is “missing”.
I was “missing” a vaginal canal – it should have opened up into a cervix – but my body adapted and made something else…
Are you uncomfortable yet? Sorry. The cards I was dealt were super uncomfortable for a very long time.
My anatomy is like an extremely thick hymen.. It stretches but has to continue being stretched. It’s skin after all.
The doctor said to reconstruct it we could cut it open and use an anal flap. (insert death emoji)
Look, nope, that’s all he had to say. No way. Even now at 35 – nope! I had limits. I cared, but it wasn’t going to be worth all that.
I have spent nearly a year with my boyfriend at this point (don’t be naïve) – I already knew my anatomy wasn’t that disadvantageous and I was going to be ok.
Moving on – sheesh – that was awkward.
It isn’t getting any better.
The next thing they explained to help me out, was to use what he called dilators. They ranged in size from carrot stick to award winning cucumber from farmer Joe’s farm.
I don’t care if I had “normal” female anatomy. ARE YOU KIDDING? Imagine a cucumber so big you could chop it up and distribute it into 5 salads.
Did I just ruin cucumbers for you?
Wow.
Anyway, the dilators were supposed to be used daily. Just like a tampon – you leave it there. Skin stretches and that was the idea. Go up in size as I could stand it.
The cucumber immediately went in the trash.
I am fairly certain Jenny, and I had some laughs about them. I was mortified, but for some reason packed them away and kept them for a few years anyway.
So, you want to know how my sweet mother attempted to help me? God bless her.
After all the visits, unwanted advice from the doctors and being left with a feeling of unknown my mom brings home an adult magazine and adult toy made of silicone…..
We’ll just sit here with that while you process…
To her credit this was 18 years ago and she wasn’t given any direction, consultation or understanding. And it isn’t like we discussed things in detail. I was always modest, my mother not so much.
Her purpose of the adult magazine was to show me I looked like the other girls. Normal, beautiful and nothing was wrong with me.
We weren’t allowed to watch PG-13 shows, even kissing scenes in movies were not okay. This magazine was completely and utterly shocking. For years I asked myself, “what was my mother thinking?” I know better and I have access to things she didn’t back then, so I would handle it differently.
How would you or I have handled it back then, nearly two decades ago?
The “toy” was to ease pain. It was still a shock. I was reeling and as she recalls, I was hateful and said something mean. Imagine that.
I know my state of mind about it all was not the same place hers was. She is a mother and has had 4 pregnancies. I am her only daughter, and this is so unexpected and unheard of.
She was seeing the things in the future I wasn’t. She was already hurting for my future self that wouldn’t be able to give my future husband a child. Hurting over experiences we would miss out on as mother and daughter.
I was 17. I wasn’t thinking about any of that yet. I hadn’t caught up. The devastation hits eventually.
I start to unravel, but it’s slow. Contained.
Until it isn’t and I give my boyfriend a big shock.