How The Woman Born Without A Vagina Is Normalising Difference

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Ally Hensley was 16 years old when a doctor drew a diagram of her body, showing her the absence of a uterus, cervix, and vaginal canal. 

She was still waiting to get her period, and a recent failed attempt at an internal exam with her GP had led to an ultrasound and laparoscopy that showed something different… or rather, didn’t show anything at all. 

“Some people actually have some vaginal canal, I had nothing,” she says. “Mine was the length of a fingernail. It’s called a ‘dimple.’ Others can have some length, but I always think – if it’s just not there, then it’s just not there.”

Ally was diagnosed with Mayer-Rokitansky-Küster-Hauser, or MRKH, a rare disorder that causes an underdeveloped (or non-existent) uterus and vagina. The condition is thought to affect one in 5,000 women around the world. In Ally’s case, she was born with ovaries, which meant that she still went through puberty as expected, minus a period. 

Once she had a diagnosis, her doctor informed her of the next step – dilation and vaginal lengthening, or in other words – building her own vagina. 

“My dad took me to the hospital for my three-day inpatient treatment programme,” she says. “My mum had to work, and he was doing his best. How do you hand your daughter over to a doctor to make a vagina? 

“In those three days, you’re just literally taught how to dilate. So, you lie on your back, you split your knees into a butterfly, you insert the dilator into the dimple, and you press hard. I remember the nurse said when your knuckles turn white then you’re pressing hard enough. The blood has to drain out of your hands, it’s that level of pressure.” 

 

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Ally had to dilate for 20 minutes a day, every morning and every night. It took her nine months to create her vagina, amidst going to school, hanging out with friends, and generally just being a teenager.

These days, this sort of treatment would most likely be coupled with counselling or some kind of psychological support. When Ally received her diagnosis, she doesn’t remember being offered any. 

“At 16 I was practically a child. It was all very consensual, there was no duress, there was no force, but was I psychologically prepared to do that? No,” she says.

“I talk about how making my vagina from scratch became my biggest career break, but to me it was almost like self-harm, in a sense. Pain equals progress, length equals progress, but intimacy is so hard to wrap your head around when you feel like you’ve lost your virginity to yourself and you’ve done so in a very traumatic, taboo, uncomfortable, embarrassing, awkward way.”

It wasn’t long before she dropped out of school, started experiencing abusive relationships, and in her own words “went off the rails.” Once she had ‘built’ her vagina, she was eager to ‘prove’ her womanhood. 

She says: “I was like, ‘I can be like everybody else, I’m ‘normal’, and I’m going to make sure people desire me.’ I put my vagina to work. I was like ‘men want me and I’m having lots of sex, I’m completely ‘normal.’” 

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Ally has since removed the word ‘normal’ from her vocabulary. In recent years she has spoken at length about her experience on blogs, podcasts, and interviews, always taking care to address the stigma and shame that still exists around gynaecological issues, and the ways in which we can get better at speaking about them. 

Since 2021, she has been the Board Trustee of MRKH Connect, a charity dedicated to raising awareness and support for those living with the condition. She also hosts her own podcast, Stigma Shakers, where she chats evolving attitudes and beliefs around subjects still considered ‘taboo,’ like grief, masturbation, and sex work. 

When it comes to her work around MRKH, Ally is determined to tackle the stigma and shame that exists around the condition – and the ways in which it is treated. 

“I know that funding for any health service is always tight, but we know more now about medical conditions like vaginismus, and MRKH,” says Ally. “The process of treatment, psychologically, needs way more support than if I were to put a cast around a broken elbow. It’s so symbolic of privacy and intimacy and the stigma and shame. 

“It’s way more than just using a kit of dilators because you’re doing something incredibly personal and painful. If you’ve had pain or difficulty, how do you break the relationship between what you’ve had to do, and also have a really positive, healthy approach to sex and intimacy? How do you disclose with partners and have that open conversation?” 

 

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Conditions like MRKH, vaginismus, and vulvodynia may be characterised by physical symptoms, but oftentimes it’s their mental effects that are the most difficult to overcome… especially when it comes to intimacy. 

“It’s the biggest walking contradiction ever, isn’t it?” says Ally. “It’s so conflicting. We are taught that sex is pleasure, sex is intimate, it brings people closer, and it brings more empowerment. It’s supposed to build us up, but when you’re faced with something [like surgery or dilating], it can be hard.

“It’s one of the questions I had in my podcast, around the relationship of any kind of trauma, whether it be sexual or medical. How do we go about having the dialogue and having these conversations with sexual partners, or even ourselves?” 

Ally has been an advocate, a speaker, a writer, and a campaigner. Her work around MRKH has been extensive over the years, and she summarises it perfectly. 

“I’m trying to normalise difference,” she says. “I want to kind of convey to people why we need to start talking about this, not to recycle advocacy in the countries we know that it’s effective, but trying to reach the people that really need it.” 

You can find out more about Ally and her work here. 

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