When she was 16, Alison learned she had been born without a vagina or uterus.

Alison Henley doesn’t remember the moment she was diagnosed. Aged just 16 at the time, the doctor’s words were subsumed by white noise, by the cloaking numbness that comes with shock.

She was living with Mayer-Rokitansky-Küster-Hauser Syndrome – a condition affecting roughly one in 5000 women that’s characterised by the underdevelopment or absence of the vagina, cervix and uterus.

Physical examination, a laparoscopy and an ultrasound had shown that Alison’s vagina was roughly the length of the nail on her big thumb, her uterus missing entirely. Like many women with MRKH, it was the absence of menstruation that raised alarm bells.

“It’s so left-field you don’t even assume that this can happen, that these two parts of the female body will just stop forming,” the 37-year-old British-born woman told Mamamia.

“As we grow up we think there’s an automatic passage through to parenthood and partnership, we just assume they’re the two things we’ll do with ease. And so when you’re told you can’t perform as a partner in terms of sexual intercourse and that you would never be able to experience pregnancy…

“I was already a teenager who was experimenting in not liking herself very much. My self-esteem was quite low. And [the diagnosis] just gave me licence to validate that. I was in a poor relationship with food and self harm. And that’s what I turned to for many, many years.”

Alison underwent treatment in London within weeks of her diagnosis. While surgical options are available for some women with MRKH, she opted to use the dilatory method to create a vagina. This involves the repeated manual insertion of dilators – cylindrical tubes that stretch the existing, shortened vaginal tissue. Alison spent four days in hospital to be guided through this process.

“It awful really for me. A psychologist once said to me, ‘If there was any period in your life I’d work on with you Ally, it would those initial days days in hospital,” she said. “Then I was sent home with my dilator kit, with of various sizes of these really ugly, clinical, sterile tubes where you have to insert them for 20 minutes morning and night. [A clinician told me to] hold pressure until you see your knuckles turn white, to even feel pain – then you’re pushing hard enough.”

The process took Alison nine months.

While she had created a vagina by the end of it, emotionally there was no relief. The sense of difference and the isolation that comes with that difference persisted. Her mother was supportive, but couldn’t relate. Nor could the handful of friends to whom she divulged her diagnosis.

“You feel like living in a silent movie. You feel that you’re sitting on the side of a conveyor belt which is life, wondering if you’ll ever rejoin it. There’s a disconnect from people around you,” she said.

“Friendships, they’re very superficial because usually you’re having to lie a lot. If you think about how much we talk about sex and children conversationally… I would find out, say, the names of contraception just so I would have something to interject if I was ever in female circles.”

As she entered adulthood, the “darkness” began impacting her romantic relationships. She chose men who weren’t looking for wife or mother – the two things she felt she could never be. While the two long term partners she’s had over the years both knew of her diagnosis, neither ever spoke of it.

Even superficial sexual relationships weren’t without complications.

“When you have created your own vagina, whether it be through surgery and dilation or just dilation, you’ve already kind of interrupted the sanctity of that kind of part of your body. Well, it felt that way for me, anyway,” Alison said. “It was very hard very hard find beauty and intimacy and something that I had basically been forming myself for nine months.”

Alison has since spoken to other women with MRKH about their fear around sex, around whether their body can perform, whether their vagina is long enough. For some, this stems from the fact that their first sexual encounter was the moment their MRKH was discovered.

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It was only five years ago that Alison truly came to terms with the fallout from her diagnosis.

“You know, I use to feel that the universe was heavily in debt to me and I’d get my reimbursement into the mailbox any time soon. But I realised being a victim and not opting to heal and take accountability for my life, that debt was going to expire soon,” she said.

“I realised that through yoga, to be honest, and through therapy and through surrounding myself with strong women and people who’ve been through darkness as well.”

When not working as an executive assistant, Alison focuses her attention on helping those women. Along with fellow MRKH survivor Jaqi Quinlan, Alison founded Sisters for Love MRKH Foundation in 2014; this is the first and official organisation in Australia to support to those who have been diagnosed with MRKH and their loved ones.

She is also President of the MRKH Support Group Committee at The Royal Hospital for Women in Sydney, and has co-founded The Happy V, an online sexual well-being resource for women with (and without) MRKH. Through it all she hopes to help women connect, to realise they have choices in treatment, in relationships and around motherhood, to learn they are not defined by their anatomy.

Of course, she still has personal struggles.

“Just recently someone said ‘I’m having a baby’ and – and this will go for any infertile women – you have a profound sense of happiness if you’re in a good place. But it also showcases what what was wrong with you or what was what was different about your body.”

But that darkness she once felt has lifted, the numbness has subsided.

“I always say that I believe I was meant to have MRKH, wholeheartedly. I was meant to have it bad enough that I could understand inner workings of MRKH, good enough that I was able to heal. But when I decided to start [the foundation] I didn’t realise at the time what I was starting, because my first goal was just to speak to my 17-year-old self.

“I didn’t realise that in doing that I was an advocate. I just realised that I needed to tell my story and I needed to connect to women.

“You never grow out of MRKH; you grow with it.”

The University of Queensland Institute for Molecular Bioscience is recruiting women for a landmark genetic study into Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome. For more information or to participate in this study please visit the IMB website.

As Alison says, “It will help improve resources that will maybe one day help you with your journey. Do it for the woman who’s going to be diagnosed tomorrow. Do it for your peer, do it for your sisterhood.”