I was diagnosed with MRKH Syndrome Type 2 when I was 16, a condition that affects 1 in 5,000 females. I have no uterus, therefore cannot carry a child. Here’s my story.
NO LONGER BOTTLED UP
MRKH is a congenital disorder of the female reproductive system. Girls with MRKH have normal ovaries and fallopian tubes, an absent or incomplete vagina, no cervix and either an underdeveloped uterus, or no uterus at all.
MRKH syndrome Type 2 is also associated with at least one other malformation, such as renal, vertebral, or, less commonly, auditory and cardiac defects.
No Uterus – I was born without a uterus.
Underdeveloped Vagina – I made my own with dilators. 🙂
Renal (kidneys) – I was born with one pelvic kidney.
Vertebral (spine) – I have congenital scoliosis. This affects 1 in 10,000 people. It is a curvature of the spine caused by a defect present at birth. The spine may also be rotated or twisted, pulling the ribs along with it. Some of the segments in my spine failed to form properly, therefore I cannot undergo a spinal fusion as it is too complicated. I get pain during long periods of exercise and I can only sleep in one position, otherwise I wake up with a super sore back.
Auditory (hearing problems) – I grew up with hearing problems and had grommets implanted in my ears from young. They are tiny tubes which are inserted into the eardrum, in order for you to hear better.
Cardiac defects – I have never been diagnosed with a cardiac defect.
BABY BUMP CRAZY – 16 YEAR OLD ME
Can you imagine what it would feel like if you were ever told, “you will never be able to carry a child”.
16 year old me was delivered this simple yet significant sentence and it completely tore my world apart.
Up until the finding out, I was the most maternal toddler, young girl and teenager. The instinct lived in me and I knew my purpose in life was to be a mum. I got so excited by it all, from baby Annabelle, to fake pregnancy bumps, and the practice baby that you get to look after for a weekend from school.
I was always so interested in anatomy and the way the body works, but nothing fascinated me more than how a baby is formed. The thought of growing a little human inside of me, amazed me.
I was in awe of pregnancy bumps so I’d always stuff cushions or blankets underneath my shirt to make me look pregnant, and even made belly button outies!
It was a common joke that I’d be 16 and pregnant. I wanted a football team so if I coulda, I woulda!
I was a home bird so travel didn’t really interest me. My goal was to work hard on my education and become the best role model I could be for my children.
GUT SINK – FINDING OUT
The first suspicions came when I didn’t start my period. I saw a doctor at 15 years old, then 16 years old. Both times I was told to just wait and that I may just be a late bloomer.
A week after my second appointment, I received a call. The doctor wanted me to come back in for some tests.
First, I had a blood test that came back normal. I was experiencing the usual hormones that a teenager naturally goes through.
Then, the doctor referred me to have an ultra sound. During the ultrasound the nurse seemed confused, as something was blocking the view of my uterus (or lack of), which at the time, we didn’t know was my pelvic kidney.
She couldn’t understand the results so asked to examine me internally. This also seemed to be a struggle and was quite painful for me, so she booked me in for a further examination with a gynaecologist.
I had no answers at this point so I came home googling all the possibilities. (Wrong thing to do, although I found the diagnosis before I was told, and I dreaded hearing those words). I kept thinking, “please don’t be MRKH, please don’t be MRKH”.
After another internal examination, and all the tests combined together, the doctor said the words lightly… “You have a condition called MRKH, which means you were born without a uterus and the upper 2/3 of your vagina”.
I remember my mum asked seconds after, “so she won’t ever be able to carry a child?”. The doctor said no and there it was, the ultimate gut sink of my life. I shiver at the thought of that day.
After the news, they wanted to take further blood tests to find out what ‘type’ of this condition I was, and if my chromosomes were normal. During the blood test, I passed out and fitted because I think the impact of the news shook me so hard, my body decided to just switch off for a second.
My mum and my nan were very upset at the news and naturally, my mum felt a little to blame. She wondered if it was anything to do with something she did during her pregnancy.
This is definitely not the case and there’s absolutely nothing different that she could’ve done. It’s just a freak of nature.
I felt the sorriness from my family. They watched me all along pretending to be pregnant and never getting rid of my baby dolls. They endured a lot of heartbreak knowing that I was feeling empty and there was nothing they could do about it.
From those moments, moving forward there were no more pregnancy bumps, no more pratting around with silly baby gestures and anything maternal became a sore subject.
Every other problem became minuscule, and everyone else’s problems became an annoyance. All I could think was, how dare these people have the audacity to complain. It infuriated me when pregnant people weren’t smiling. I worked in retail at the time and I was made to tidy up the baby department, having never organised that section before. All I could think was, the world was out to get me. It’s like they knew and they were laughing in my face.
I carried the weight of the world on my shoulders. I felt so out of place in my own body. I was a stranger in my own skin. I hated myself and this new foreign feeling, and how the heck was I ever going to get over of it. I have always hated sympathy, so I kept it all to myself. I never wanted to be the one to have ‘issues’. I wanted to be crazy and make everyone laugh.
BLOCKING IT OUT
Day by day, I was strong enough to block out the problem. I was asked if I was ok, and offered an ear to listen from the few that knew, but I didn’t want to speak of it out loud. I never searched for advice or guidance because I always felt like a burden. No ones problems are ever as significant as your own and no one really knew what I was going through, so I wanted to go through it alone. I pushed people away in the process.
I didn’t get too attached with people because I didn’t want them to know the dreaded MRKH story. I was embarrassed and ashamed of it and didn’t know how to explain it to people when they asked, “what contraception are you on?” or “When do you want to have kids?”.
Every time I built the courage to break from that and open up to someone, I would just hear, look on the bright side, “at least you don’t have periods” or “you never have to worry about birth control”. This infuriated me so I decided not to share it with anyone, because they DEFINITELY didn’t understand.
I dread birth control questions and I struggle to deal with explaining myself. I don’t want to lie in case I get caught out and I hate feeling flustered. So I avoid all aspects of these conversations. I hope to be invisible every time this topic gets brought up.
I would constantly arrange things, go out with friends, find absolutely anything to do because the sorry feeling didn’t exist when I was occupied. I was able to switch off. I became obsessed with making people happy, cheering people on and I wanted to help people grow. And perhaps it was because, I myself had felt such sadness and didn’t want anyone else to feel that way.
I was scared to be alone because every time it went quiet, the pain came back.
I was completely disconnected from my existence and mentally and physically drained. I used to go through horrific panic attacks alone and not tell anyone because I didn’t want to have to explain or admit to why. I can recall countless times pulling over in lay-bys just to tell myself to breathe and get through the next 10 minutes. I was constantly convincing myself that my throat will NOT close up and I WILL be alright.
I bullied myself everyday into thinking I wasn’t good enough and I constantly asked myself, “why me?”
I was unable to express my creativity and let myself go. I was so uptight and I know I had so much fight inside of me but my hate towards the world was blocking my way. It cancelled out the happiness I wanted to gain, the fight I wanted to battle, and the fears I wanted to overcome. It had complete control over me. These feelings led me into restricting my diet, because I felt like it was the only thing I could control and it made me feel good. So I’ve always seemed to have eating issues, constantly wanting to be thin, and that in itself as been a constant battle too.
I longed for my picture perfect life before I found out the news – I wanted to feel what it was like to not know again, just so that my heart could rest. I was going to live an unfulfilled life and that’s all my mind would let me believe.
WHY DON’T YOU ADOPT OR TRY IVF & SURROGACY?
I grew up so excited to experience pregnancy and childbirth, and I couldn’t wait to start my period.
I couldn’t wait to bond with a little human that I cooked inside of me.
So it’s not easy to come up with an alternative way to becoming a mum. I’ve heard too many times, ‘you can adopt or there’s IVF & surrogacy too’.
There are so many emotional complexities to an infertility journey. The best thing you can do for someone going through this, is not to offer her a ‘solution’, but rather, sit with her as she grieves and processes.
The reason for not thinking about alternatives in the beginning is not because I wouldn’t want to. I was mourning a dream I won’t ever be able to live! I was hating my body for its rarity and incompleteness.
Now I’ve come to think about alternative journeys to motherhood, I’ve understood that adoption is quite regularly seen as a default option when other fertility paths don’t work. I think adoption is such a beautiful gift regardless of someone’s fertility. I think it’s important to not just pin adoption to infertile women. I have always loved the idea of this version of motherhood.
So deep down, I always knew that there will be a little child out there, that is meant to be mine.
Eventually it got to a point, where I was literally so tired of being sad and it made me angry that I felt this way.
Feelings changed over time and the urge to want to fight overpowered the every day sorrow.
I created myself a life goal and that was just to simply be happy.
I don’t know if it’s something that clicked in me one day or whether it happened over time but once I began to focus all my attention on things I loved and worked on taking the weight of my mind… I did become lighter. Happy people inspired me. I figured that the only way I’m going to be like these ‘happy people’ is if I go out and get it for myself. No one else was going to do that for me.
I began to see that I could control my happiness, so I wanted to stop wasting time.
I don’t know how it came about, but I took some time out to go travelling and I fell in love with the idea of doing more. In such a short amount of time, I felt myself healing. I had so many moments of ultimate, off the scale happiness. I created memories and relationships and saw things that changed my world. So, although it’s cliche to say that ‘travel changes you’, it’s true in my case.
Before I knew it, I hit a stage in life where ‘I became at one with it all’.
My passion for travel softened the blow of my failed dream to carry a child. It’s fair to say that I came back with a clearer and more positive state of mind.
After going through all these incredible motions of travel, I become obsessed with trying to make myself happy. If I hated a job, I wouldn’t waste time, I’d just leave. If relationships were negatively impacting me, I’d let them fade out and if something excited me, I would chase it.
I was curious about everything in life, so I went on many adventures. I stopped trying to create a life plan that might never happen. I’d discovered this new love for travelling because it just blew my mind, the places I witnessed and the feelings I experienced. I lived fully in every single moment, whether that be happy or sad, and I started to feel human again.
I felt utter contentment and joy, like a veil had been lifted and a whole new perspective of life was born. I was the girl with MRKH and I absolutely loved my life.
Finally I became free of sadness. Instead I became thankful that MRKH had made me such a strong person. I was so utterly proud of who I’d become and how I’d overcome all of this alone. I began to fall in love with who I was. I apologised for being so hard on myself before, and rewarded myself with this new found attitude towards life.
I may not have realised at the time, but my life now is made up of so many learnt behaviours and characteristics, all from people that have come in and out of my life and those who have stayed. The comfort of having these people there were crucial to every part of my healing journey. For me, the most impactful relationships have been with those that had no idea they were helping me through it, they were just there. Having my nephews and the opportunity to form a close bond with children of my bloodline has been massively helpful in moving forward.
To conclude my life and feelings at the present, I’ve fully accepted MRKH as a part of me. Before now, it was a special little secret, and it made me feel super rare and unique. I do get down days, because I know it’s not going to be simple to have a baby one day. However, I’m quite thankful that things turned out the way they did, because my life would absolutely never have taken the same path that it has. I wouldn’t have imagined a life like I have now and maybe that’s what’s given me the courage to write this. I will never know the feeling of carrying a child in my body for 9 months… but I will always know very well, the feeling of carrying the hope for a child in my heart.
I wrote this long before I published it, and was waiting for the right moment to share it with the world. I hope it inspires you in some way, or helps one of you on your own personal journey.
If I could go back and talk to 16 year old me, I’d tell her that she isn’t a freak and she’s certainly not alone. I’d promise her that time is not only going to heal her broken heart but shape her too, into a happy, grateful soul.
I’ve decided I want to be open about this, because every year, another girl gets dealt with this hand, and I want her to know that she doesn’t have to navigate this life alone.
Please be gentle with your body. It loves you more than anyone or anything in this world. It fixes every cut, every wound, every broken bone, and fights off so many illnesses, sometimes without you even knowing about it.
Even when you punish it, it is still there for you, struggling to keep you alive, keep you breathing. Your body is an ocean full of love, so please, be kind to it. It is doing the very best it can.
This feels so difficult to put into practice in the beginning because you’re hating your body for it’s incompleteness, but in order to love who you are, you cannot hate the experience that shaped you.
You have shed a thousand skins to become the person you are today. And if you ever feel overwhelmed by the many people you once were, remember, your bones have grown, but what makes them has never changed.
Your mind will always believe everything you tell it. So feed it faith. Feed it truth and feed it with love.
Remind yourself of what you’ve been able to overcome. All the times you felt like you weren’t going to make it through, you proved yourself wrong. You’re more powerful than you think.
Please do not lose hope. Believe that there are a thousand beautiful things waiting for you. Because sunshine comes to all who feel the rain.
Thank you for reading,
Lauren Ashley Cliffe – An MRKH Warrior xxx