As a teenager, Ally Hensley discovered that she had been born with the rare condition, Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome. resulting in the absence of a womb and a vagina.
Discovering her infertility just months after her sweet sixteenth, Ally had a job to do: create a vagina from scratch. What followed was a life of destruction, abuse and, as she says, a societal head-tilt asking, “Do you look like Barbie down there?”
I knew that unlike the FGM I endured, and which happened out of context, what happens on Harley Street was due to the harmful influence of porn.
While the ability to bear children is often associated with femininity and womanhood, Ally’s story reminds us that it’s not a defining factor. Now, she is on a mission to debunk the myths around what it means to be a woman.
What is MRKH?
Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome is a congenital disorder that affects the reproductive system, meaning it’s present at birth. It affects approximately 1 in 5,000 female births.
MRKH syndrome occurs following embryonic underdevelopment of the uterus, cervix and vagina during foetal development. As a result, people with MRKH syndrome can be born without a uterus, cervix, and vaginal canal. However, they can have functioning ovaries and can produce eggs.
“Do you look like Barbie down there?”
Dealing with the diagnosis of MRKH can be emotionally challenging, and many people benefit from counselling and support groups to help them cope with the condition and its impact on their lives.
Speaking of her experience, Ally said: “At the age of 16, I learnt I would never carry a baby. What’s more, I found myself sitting in a doctor’s office hearing the options of how I could ‘create’ my own vagina. I was bereft, confused and in shock.”
It all began for Ally when her period still hadn't come by age 16 - something common for those with MRKH, with another being difficulty having sex due to the narrowness of the vaginal opening.
MRKH syndrome is typically diagnosed through a pelvic exam, imaging tests, and blood tests to rule out other causes of menstrual dysfunction. There are multiple options following diagnosis, including vaginal dilation therapy and surgical procedures, with the end goal allowing for sexual intercourse and/or assisted reproductive technologies like IVF.
She created a video explaining why she chooses to be child-free - and label herself that - so others can “see what a life without children can look like”.
Ally’s experience with vaginal dilation therapy was incredibly difficult. She says, “When I was handed my ‘vagina making kit’, I had no idea the trauma that was about to land on my ‘womanly doorstep’. I was practically a child, being taught how to make a vagina. With doctor and nurse onlookers, I was guided through the twice daily practice of inserting objects into the ‘dimple’ (that’s the 3mm opening that never quite made it) morning and night. When my knuckles turned white, I knew I was applying the correct amount of pressure, that over time, would form a vaginal canal. I soon learnt that pain equaled progress. What a lesson to learn as a child? It’s unsurprising, that sex and shame soon came hand-in-hand, when I finally began to explore sexual relationships. Only now do I understand that my body isn’t anything to be ashamed of, and that body parts don't define your womanhood or worth.”
The ‘right’ treatment option for each in person depends on a variety of factors, including age, overall health, personal preferences, and goals for treatment.
“I was an absolute trainwreck for many years to come," said Ally. “Sadly, unable to express my inner turmoil, and feelings of disgust and inadequacy, I went on a rampage with boys, booze, and bingeing. If I could validate my lack of self-worth, I did," she added.
In the end, unable to find the support she needed, in her early 30s Ally decided to go on a mission to educate people about MRKH and de-stigmatise the shame associated with the condition. "I came to my own realisation that I am worthy. Really worthy of happiness, self-acceptance, healthy relationships, and perhaps, that this is my calling in life. To herald that the only thing normal in this world is difference.”
What about MRKH and Fertility?
People with MRKH cannot carry a pregnancy due to the absence or underdevelopment of the uterus. However, there are several options available for them to have children if that’s what they feel is right for them, including uterine transplant, surrogacy, adoption or ovarian tissue transplantation. These options may not be suited to everyone, and they come with their own set of risks and considerations.
“There are so many aspects to MRKH; sex and relationship, infertility, mental health, and social expectations. That’s a lot for any teenager (and supporting family) to unravel. Not to mention that so many women and people feel silenced, hidden, and ashamed of who they are. We need to tackle the taboo, not hide from it," Ally said.
Unlearning ‘Womanhood’
The idea of unlearning womanhood is about challenging and dismantling societal norms and expectations of what it means to be a woman, and rejecting the idea that there is a single, monolithic definition of womanhood.
A helpful way to think about this, is through challenging your own internal bias of the gender roles, expectations, and stereotypes that are often placed on women. This could mean examining our own assumptions, as well as the ways in which society reinforces these ideas through media, advertising, and cultural narratives.
“I didn’t feel that there was a dropdown menu for me in groups of women, or society even, as I memorised the names of contraceptive pills and sanitary products to fit in," Ally revealed. “The pressure is too much for anyone to handle alone, however, we need to create safe spaces to explore these discussions. We need to be able to ask the questions, even when we don’t always get the dialogue right the first time, to truly learn and empathise with each other. We need to build up confidence and worth, not based on a set of unachievable criterias, but what makes a person ultimately happy and included. All I’ve ever wanted is to feel happy living in my own skin. To love, and be loved. And to anyone who cannot untangle what it means to see “different”, well, that’s more on them. Difference is beautiful and the world needs it,” she added.
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It can also involve questioning the traditional binary system of gender altogether, and recognising the diversity and complexity of gender identities and expressions. This includes acknowledging and supporting the experiences of transgender and non-binary people, as well as challenging the rigid gender roles and expectations that can be harmful to all individuals, regardless of their gender identity.
A person's gender identity is determined by their internal sense of self and the gender they identify with, regardless of their physical anatomy. The progression of these conversations over the last few years has shown us the importance of respecting and supporting individuals in their gender identity and not reducing womanhood to one particular physical characteristic.
Ultimately, unlearning womanhood is a deeply personal and ongoing process that requires self-reflection, education, and a commitment to challenging societal norms and expectations. Listening to and learning from the experiences of those who have been marginalised by traditional notions of gender, is a great place to start.
Maddy Carty is the host of comedy podcast Mads World, the conversational comedy podcast exploring dating, relationships, feminism, sex & life in London. You can listen to her entire chat with Ally here: Mads World | Twitter, Instagram, Facebook, TikTok | Linktree
