Mayer-Rokitansky-Küster-Hauser syndrome

By: Tasha Bishop

Illustrated by: Jessica Vaughan - www.jessicavaughan.co.uk

Illustrated by: Jessica Vaughan - www.jessicavaughan.co.uk

I begin this story with some context. Right now, in 2016, I am 19 years old. Having met at boarding school, I have been with my boyfriend (lets call him L shall we, nice and mysterious) for two years now, he was my first everything, and sickeningly, he is quite possibly the love of my life. So here I am, present day Tasha, all shiny and happy. 

Rewind 3 years. I am 16, currently studying for my GCSE's and I’m sitting in a white sterile room, awaiting an ultra sound scan. Many, MANY doctor’s appointments, tears and statements like "I bet there's nothing wrong with you, you're probably just a late bloomer" lead me to this point. I am finally about to find out why I have never had a period in my whole life. Countless people tried to convince me from the age of 12 that I was just eating too many bananas, or I was stressing too much and my body 'sensed' it. Up until now I'd just sort of gone along with it to appease people. But something in my 16-year-old psyche was screaming THIS IS WRONG. So yes, here I am, 16, doctor's waiting room. An hour and a big smear of cold blue gel later, a taut and stern-faced female doctor looks at me, puzzled. Holding up two ultrasound images of the lower abdomen area, she shows me a normal one, and mine; a seemingly abnormal one. Using the end of her chewed black biro she traces the indigo fuzz and tries to point out a pattern. Mum and I clearly look completely disillusioned because she all of sudden and very brashly announces "There's nothing there” whilst pointing to my scan.

After more confusion, I was referred back to my original consultant, armed with ultrasound evidence. That afternoon I had my follow up appointment. It gets kind of gritty here, so I will try to be brief and to the point. In the uncomfortably normal setting of my doctor's office, and in the short space of about 20 minutes, I was told some pretty life changing things. 

She started slowly, explaining the route she’d taken to arrive at my only probable diagnosis, because of how rare the condition I had was. She told me I was going to be referred to a specialist hospital in London where a team of experts would assess me further and offer some support. Eventually, the words I’d waited almost four years to hear, were suddenly aired. Affecting 1 in 500,000 and formally known as Mayer-Rokitansky-Küster-Hauser syndrome (MRKH), I was born without a womb, meaning I’d never have a period and I’d never give birth to my own child and if I wanted to have sex, I would have to undergo invasive long term treatment. I can remember the room going very silent, as if I’d become momentarily deaf, and looking outside through the slits in the blind I watched the blue sky; the world seemed to stand still for a minute. The words I’d just heard somehow sank into me and embedded themselves, I’d never really expected something to actually be wrong. My body reacted for me and I remember crying and nodding a lot. Finally, as a farewell gift, the doctor added: “At this point, we assume you have a normal female chromosome pattern," glancing at my breasts, "but we will run some tests to confirm this.” Great, so I'm half human, half empty space, and they're not even 100% sure I'm a girl. Am I an X-Men mutant?

My mutation so to speak, didn’t make me feel special, or unique. I felt indescribably disgusting.  I was unable to do the two things my body was biologically created to do: have sex and recreate. I felt unwomanly and unworthy. I felt like I was grieving the loss of someone or something I’d never known, and I felt like nothing else really mattered much anymore; there was this irrecoverable piece of my body missing and I couldn’t even see the hole. There were days that summer, and many days after, when all I wanted was to curl up into a ball under my duvet and let my seemingly genderless, infertile body fester in sadness. Although my friends and family were, and still are, incredibly supportive, nothing any of them said could dull the pain I felt or make me feel normal.

People say you fall in love when you least expect it, so if you’re trying to prove the rule, I’d be a good example to use. Fast forward one pretty miserable year and along came L, who to me was like early mornings and moonshine. He couldn’t put a foot wrong, and when I finally felt able to trust him with the secret that was chewing up my insides like the hungry caterpillar, he guarded it like his own and supported me in a way he’ll never understand the full extent of. For the first time since I was 12, I felt like a woman, loved not for what I had or didn’t have, but for who I was.  

Fast forward another year and it’s the summer after my A levels. Having asked me out on my 18th birthday, we’d been dating for a year and waiting, sexless, for me to have my treatment so that I could lose my virginity. Even though the sexual tension was palpable and frankly unbearable at times, we found ways round it, and L was as patient as a saint. The summer months came around and finally I had the time to go into hospital and undergo the treatment that enabled me to have sex: an all-singing, all-dancing sparkly internal vagina was created for me! The treatment was painful and traumatic and not very nice at all, but fuck, it was worth it. L was going to university in Paris, so we’d strategically planned my momentous week’s visit in the city of love. Cheesy yet? Before we get down to the dirty details, let me just tell you how embarrassing saying goodbye to my family was that week. Of course EVERYONE knew why I had been in hospital, everyone knew why I was going to Paris, and everyone knew I wouldn’t be the same when I got back. Interestingly though, this almost helped. Being the last one out of all my friends to lose my virginity and feeling very late to the party, the nerves and apprehension was getting unbearable. After everything I went through though and the countless awkward conversations I’d had about sex, losing my virginity sort of lost its taboo.

Here I am, 18-year-old Tasha, self proclaimed virgin queen, standing outside L’s front door in Paris, new pants, hairless body, terrified. He takes my bag and pulls me in with one big arm and kisses me. We look at each other and burst out laughing. We manage to eek out the small talk for about 5 minutes, unable to stop smiling or take our eyes off each other. The excitement and a year’s worth of waiting gets too much and we sort of end up running/stumbling to the bedroom in under 10 minutes of arrival. 

I’m lying next to L staring at the ceiling, our fingers intertwined. My vagina hurts, but it’s a good pain. Our clothes decorate the floor. My eyes start to sting and a lump forms in my throat. Six years of pain and frustration and happiness and relief flood out. It was perfect because it wasn’t perfect. It hurt and it was awkward and I didn’t know what I was doing and it was probably shit, but it was sex for the first time with someone I loved more than words can describe, and that was enough. There were days when I never thought this would happen, but I can proudly announce I am virgin Queen no longer.

However, I have only very recently realised, a year later, that losing your virginity doesn’t fix everything, that the most valuable treatment I can give my body, is in fact, value. It has taken me months of thought, ineffable sadness and countless tears to finally reach the conclusion that I am actually worth something, a lot in fact. There may be a proportion of my internal makeup missing, and I may not be able to do things other women can, I may have to masturbate/dilate my vagina with a horrible medical plastic dildo so that I can have sex and endure days of total despair, but those small moguls are certainly conquerable and I am not my body; my body is a part of me, it does not define me. I am sure there will be far worse things to come, but at the ripe old age of 19, I can offer no gems of life wisdom, other than my truthful report that sex is not the be all and end all, and it is very possible to survive heartbreak, even if it seems unfixable, because usually there is nothing broken in the first place. For a while, I thought MRKH was this unsurmountable heap of sorrow, and I’d be the 40-year-old virgin, but I bigger than my body. 

Becoming a woman doesn’t happen overnight, no matter who you are: if in your mind you are born a girl, you will grow to be a woman through experience; it is not a biological process, it is not losing your virginity, nor is it one that can be calculated or defined: it is a staggeringly gorgeous uphill battle from chaos toward a balanced state of contentment, self belief, self love and empowerment. 

https://www.thepantsproject.com/