As I sat down to start my letter to my 20 year old, freshly diagnosed self, I couldn’t help but get lost thinking about the day my life changed. Before I get to my letter, I want to take you with me on a journey back to that day in April, 2010, when I was diagnosed with MRKH.
I barely remember the car ride to the gynecologist’s office. For the life of me, I can’t remember if my Mom and I spoke one word in the 20 minutes between our house and the doctor’s office. I’m sure we made an attempt at small talk to lighten the mood. Our silver Hyundai pulled into the nearly empty parking lot. I let my Mom get out of the car first and heard her door shut. I took a quick moment to myself before getting out of the car. I remember walking bravely behind my Mom into the doctor’s office. I was breathing shallowly, from my chest, unable to get a full breath, no matter how hard I tried.
Amazingly, I managed to put one foot in front of the other. Walking up that ramp was like walking through quicksand. We were greeted by the gynecologist at the reception door. She gently directed my Mom into her office, and me into the examination room. There were a million thoughts racing through my mind, but the chaos of spinning thoughts mutated into white noise. Between MRIs, ultrasounds, and other specialist appointments, I’d seen four doctors in six weeks. One memory stuck at the forefront of my mind as I undressed and lay on the examination table. “It’s so strange. I can’t seem to find a uterus anywhere. I’ve never seen anything like this before.” Those were the last words the ultrasound specialist spoke a week prior. “…Can’t find a uterus anywhere. Never seen anything like this.” I received no explanation, just a referral to be there, on another examination table. The gynecologist gently knocked on the door, and asked if she could come in. I swallowed the lump of fear in my throat and gently choked out, “Yes,” knowing that within minutes there should be some sort of clarity around the bomb the ultrasound specialist dropped into my life.
She asked me to put my feet up into the stirrups, and I suddenly felt the cold stale air on my naked skin. Using a clinical, cold utensil, she prodded, invasively, where a vagina should have been. Feeling the horrible pressure, I remember trying to focus on the stucco ceiling and the flickering fluorescent lights, but I couldn’t focus on anything except the feeling. I knew in my gut something was not right.
After what felt like an hour, the doctor nodded her head silently, gently placed her cold latex covered hands on my shins, and said, “Thank you. You can get dressed and meet your Mom and I in my office.” She left the room. I sat up slowly, peeled the crinkly examination paper from my body, and stepped onto the ice cold tile floor. I pulled my jeans back on and attempted to tame my mind. It felt like I was thinking about nothing and everything at the same time. Once again, the chaos transformed into white noise. I took a deep breath and attempted to ground myself. I rolled my shoulders back, bravely against the fear, knowing that on the other side of that door, whether I was ready or not, was an answer.
I left the examination room and stepped into the office. I sat apprehensively in the aqua coloured chair beside my Mom. The doctor took a deep breath. What on earth could the doctor need to be preparing herself to deliver? It must be heavy.
It was raining that day. I was closer to the window than my Mom, sitting to her left. I remember looking at the raindrops hitting the panes of glass. I remember they were the only thing keeping me slightly tethered to reality. Part of me was trying to dissociate, float up and out of the office, and escape. The rest of me was fully focused on my Mom. Smiling gently, I tried to silently reassure her that everything would be okay, while simultaneously trying to run out of my body.
The doctor folded her hands and leaned in. “Kylie, you have Mayer–Rokitansky–Küster–Hauser Syndrome, also known as MRKH.” She paused. It didn’t even sound like English.
“MRKH affects 1 in 5000 women. The syndrome is a disorder that occurs in females and mainly affects the reproductive system. This condition causes the vagina and uterus to be underdeveloped or absent, although external genitalia are normal. Affected women usually do not have menstrual periods due to the absent uterus.”
With the raindrops on the window to my left, attempting to keep my eyes on the doctor in front of me, and my internal world feeling hyper aware of my Mom to my right, I couldn’t focus.
“Kylie, this means you will never have a period, carry your own children, or give birth.” Wait, what?
I felt the earth stop turning. A hard, jarring stop. The room went silent and still. No one spoke or breathed. Both parties waited for the other to make the next move.
I’m an empath. I have a sixth sense about other people’s emotions. I could feel the inside of my Mother’s chest cave around her heart as these words left the doctor’s lips. I looked at her and I felt her mirroring me. She attempted to put on her brave face to let me know it would be okay. At the same time, she was trying not to crumble under the weight of this diagnosis.
Looking back, it would have been okay to break. It would have been okay to let the armour crumble around our hearts. It would have been okay to cry, to feel, to let it sink in.
She hurt for me and for the opportunity that was taken away in that moment. I hurt for her and for what she had taken away. Nothing in life is ever guaranteed, but there are choices you expect to make for yourself, like pregnancy and birth.
Those choices were ripped from me in that moment, like a limb from my body. When had anyone ever heard about being born without a uterus or a vagina where a vagina should be?
The doctor went on to say, “You have a dimple opening of about 2-3 cm where your vagina is. Through surgery or dilation therapy, you will form a regular length vagina and be able to have vaginal intercourse.” That was it. It was too much. I wasn’t listening anymore. I was trying to wrap my head around this life stopping news.
I was concerned about my Mom, and the fact that I walked into the office as one person and would walk out as different one. The diagnosis and the missing parts of myself suddenly transformed into an emptiness I didn’t know I had been living with. I was suddenly so aware of the emptiness. I was born with it and there was no known cause. News like that changes you.
If I could travel back in time to that day, knowing what I know now, I would take my Mom’s hand in my own, and say, “It will be okay. It will be hard, and I know it feels impossible and heart breaking, but it will be okay.”
And that was the moment of my MRKH diagnosis on a rainy day in Oakville. The girl sitting in the aqua coloured chair, trying to be brave, is the version of myself this letter is for. Here is my letter to my 20 year old self:
Dear Brave, Fragile, Beautiful Kylie,
Be gentle with yourself. This is not something you will be able to wrap your head around. This isn’t something that can be easily healed, tied up in a pretty little bow, or brushed under the rug. This is big, ugly, weird, isolating, heart-breaking, soul-crushing, scary, heavy, intimate, and vulnerable. You have a long journey forward to lighter days. You have always, and will always, be a fighter. So, while this feels impossible, know that you will fight against it, fight with it, and ultimately, you will fight through it. One day you will wear your scars as badges, speak openly without fear, and take pride in every moment you thought would break you. Those are the moments that build you up and make you the warrior you are.
You’ve spent many years putting on a brave face, keeping things to yourself so as to avoid feeling like a burden. You are not a burden. You have never been a burden.
Sometimes the most powerful move you can make is being honest when you feel broken, don’t know where to turn, and ask for help. You need to lean on the people around you, especially your Mom. She just wants to support you, love you, and hold you. She is scared too. Neither of you have a roadmap for this journey, and it is okay to let your walls down and talk to her. Let her in.
It takes serious courage to open yourself up, take the armour off and say, “I’m not okay.” By doing that, it will not only bring you closer to your Mom, but towards yourself and self-acceptance on this journey. I promise you, you’ll slowly feel the weight lift from yourshoulders. You both will. Remember, you are experiencing this together, but separately. Find togetherness in this experience of tackling the unknown, and know the other is there for support. There is no roadmap or right next move for this. Being vulnerable and sharing feels like cracking yourself open, but I promise, every time you do it, you will build up your strength and your resilience. You can do it. But remember, be gentle with yourself, because it will take time.
As a life-long people pleaser, you need to know that you can’t keep the peace around you by suppressing your own emotions, experiences, or feelings. It doesn’t disappear just because you don’t talk about it. It gets internalized and it feeds on itself in ways that poison your insides. You are not protecting your Mom by not talking to her, attempting to keep the peace. You are building your walls higher. All you both need right now, is for you to open up, bring those walls down, and talk to your Mom. She is in your corner. You are not a burden. You are worthy. You can heal. You will heal.
Take a deep breath, this is a lot. You’re doing great. You have so much light inside you. Lean into that light.
I also want you to ask for a therapist. By letting those walls down, a lot is going to pour out, and that is okay. Sometimes you have to take something apart before you can put it back together. I, we, like to carry our own weight of the world alone, but this one is bigger than us. It is bigger than us, so we need to get in front of it before it gets in front of us in a crazy way. There is no weakness or admission of defeat in asking for help. Remind yourself of this everyday. It’s tough to break life-long patterns, but you’ve got it in you. You are a match for your mountains.
Just like leaning on your Mom, you need to lean on your people. As I mentioned before, suppressing or not sharing isn’t going to make something go away. It sure isn’t going to make it any easier when you suddenly want to talk about it. You’ve got to start small. Share small details with people you can trust. Practice sharing with people who feel safe.
Just like everything else in life, you’ve got to practice. Flex those muscles and get stronger. Try journaling about MRKH. Get used to having conversations about it with yourself. Sit with it and just feel feelings as they come. You can do it. You’re you. I know it’s not always comfortable to share, or sit in silence with your thoughts, but the more you do it, the easier it will get. You’ve got to get used to being uncomfortable. And try not to anticipate how people will judge you, or make up your own stories about what they will think when you do open up. It’s not helpful or fair to you.
Repeat after me. I am not weird. I am not broken. I am worthy. I am beautiful. I am strong.
On the topic of getting used to being uncomfortable, do your dilating. The time is going to pass either way, so while this physical therapy brings up all of the feelings of shame and unworthiness, this is part of your healing journey. Not all of it is pretty, but it will get you through this dark tunnel, to the other side. Remind yourself again. I am worthy. I am not broken. I am not a freak. This does not make me less of a woman. I will get through this. Journal about your feelings, say these affirmations, lean on your people, and talk to your therapist. You will start to see how these acts will come together and serve as tools you can access when you face hard moments. Hold these tools close because they will carry you forward. You already have everything you need inside yourself. You just have to believe.
And please, try not to put too much pressure on yourself. In time, you will get there. By the nature of this diagnosis and it’s subject matter, it isn’t easy to talk about. Talking about the fact that you were born without a vagina, therefore can’t have “normal” sex while being a 20 year old in college?! Having people potentially find out that you haven’t really had “normal” sex yet? I know that feels like the worst thing that could ever happen to you right now. Also, please know, the whole idea that vaginal intercourse is the only or main way to have sex, lose your virginity, or be intimate with someone is a societal construct. I know, that still doesn’t help you at this moment, but it’s an important reminder when thinking about what intimacy really means.
The weight of this isn’t easy. It’s crippling. Living with constant fear and shame that people will figure it out makes life feel like you’re always on the run, never truly showing your whole beautiful self. There will be countless times in your life when women around you bring up tampons, periods, cramps or their cycle. You will smile and nod, play along, and tell a little white lie about when your period comes, but every time a little piece of you crumbles inside. Remind yourself in those moments, “I am a woman and I am worthy of feeling powerful and beautiful in this incredible body I was given, just as it is.” We live in an empowering world where we are redefining what it means to be a woman. Not all women bleed, have children, or have vaginas. MRKH does not define you.
While we’re on the topic of periods, sex, and intimacy, I know the idea of being intimate with anyone is suffocating. You’re constantly horrified that they will touch you and find out that you’re different and figure out your dark secret. It’s okay to feel this way, but don’t beat yourself up about it. Just know, as I mentioned before, that cutting yourself off from connection in this way feels like protecting yourself, but it only builds higher walls. Baby girl, let people in! One day you will truly believe that your different has been your beautiful and your magic all along.
I’m excited to let you know that when you do finally feel confident enough to open up to a partner about it, their response is going to light you up. You’re going to tell someone who ends up being very special to you, while sitting at a two top table at Amsterdam Brewery on a hot summer night by the lake. They ask you what one of your tattoos mean. You go on to tell them about the tattoo and about MRKH. Sharing feels like stepping naked out of your armour for the first time, but you still open up. That takes so much courage. Your words land on the table in front of you and you look up and catch their eye. The way they look at you, feels like they are seeing inside your soul, who you are, for one of the first times anyone has. They tell you that this makes you even more beautiful and special. In their eyes, you see them seeing your strength, beauty, power and light. Let that wash over you. Years later, they will bring this nightup again and speak so highly of your ability to be vulnerable and confident enough in your own skin to share about MRKH. How awesome is that? That is you they are talking about.
And you know what? You are going to get through your dilating and your physical therapy, and you’ll have sex using the vagina you made. And it will be awesome. Come on, let’s smile about it! How many people out there get to say, “I built my own vagina. It was designed and created by yours truly.” Not many! In fact, it’s about 1 in 5000.
MRKH is going to change the trajectory of your life, but always remember that it does not define you. As much as you want MRKH to disappear or change, or sometimes you want to disappear or change, it isn’t going anywhere. And that is okay, because the human you are, and who you will become, is absolutely magical. The resilience, grit, strength, perseverance, grace, and light that you have within yourself will carry you through every battle, low moment, and every dark night. Even if you walk away from those battles tired, worn, bleeding and broken, you still walk away winning because you fought and ultimately survived. You should be so proud of you. Find pride in your story and do your best to find moments of joy and hope through the darkness of your journey.
There’s one last thing I want you to know before I sign off on this letter. The person writing this letter to you, the incredible human that you become, is confident, strong, powerful, and full of light. She is more and more present everyday, embracing her story as her own and using it to fuel her fire in this world. She does talk to her Mom, lean on her people, talk to a therapist, embrace being uncomfortable, and fall in love with life. She is constantly learning and growing. While it still hurts some days, she never lets go of hope and knows there is always a light at the end of the tunnel, even if she can’t see it in the moment. She doesn’t give up just because it’s hard. She falls and she gets back up. Every. Single. Time. She discovers the strength in vulnerability and the bravery it takes to fight forward when you feel you can’t go on. Her journey of reclaiming her worth, feminine energy, confidence and story is empowering, raw, and inspiring.
You were made for this story. It is part of you. It is yours.
You will conquer anything and everything you ever put your mind to.
You are strong enough to heal.
You will persevere.
You are made of magic.
I love you, truly.
31 year old You