Woman born without a vagina didn’t realise until she was 16 - here’s how she found out

Warning: This article contains discussion of fertility issues which some readers may find distressing

Ally Hensley was just 16 years old when she was given news by the doctors that would change her life.

Trying a tampon for the first time, frantically getting your friend to check for a blood stain and bragging to your mates that your period has finally arrived are somewhat rites of passage for girls growing up.

However, for Ally, that moment never came, and that's when she realised things were going to be different for her.

She was diagnosed with Mayer-Rokitansky-Kuster-Hauser Syndrome (MRKH) - a rare health condition that means you're born with an absent or underdeveloped uterus, an absent cervix and shortened vagina. This congenital condition (meaning present at birth) affects 1 in 5000 women.

For a person with MRKH, the ovaries are still present and typically function (as variations can occur as a result of MRKH), in the same way as any other woman’s by producing eggs and the female hormones that keep you healthy.

Speaking to Tyla a year after she released her memoir, Vagina Uncensored: A Memoir of Missing Parts, Ally opened up about what it was like finding out she had this condition at such a young age, the mental toll it had on her growing up, and how she wants to squash taboo and become a voice for others with MRKH.

Tyla spoke with Ally Hensley about living with Mayer-Rokitansky-Kuster-Hauser Syndrome (Supplied)

Realising something wasn't right

Ally had a feeling something wasn't quite right at 16 when she didn't get her period, even after wearing period pads every day of her GCSE exams just in 'case' she was caught off guard.

Despite raising her concerns to doctors, she got sent away multiple times and told she simply must be a 'late starter'.

Ally recalled: "In that period of nine months between those two appointments, I did attempt to have sex on a holiday in Greece with a very, very hot barman, and it didn't work.

"He gave it a good crack. But I couldn't work out why. You hear about things like 'maybe it's the hymen' or, you know, 'the cherry's not popping and all that kind of thing'."

She added: "But again, because if you don't know something as big as this exists, you don't tend to go there.

"I went to the doctor, not thinking about what happened unsuccessfully on my holiday, where they did an external exam. And quite quickly, the doctors look - it's awful. You're 16 years old, and his facial expression.

"I just remember he was quite perplexed. It wasn't worrying, it wasn't dramatic, I was just quite confused. And then I went on to have an ultrasound, and then the sonographer - obviously they can't give you a diagnosis, but they did swiftly leave the room."

Ally was just 16-years-old when she got the news that changed her life (Supplied)

"I'll never forgot the day I found out"

Ally was then recommended she go for a laparoscopy, a procedure where a a camera is inserted through the abdomen, and that's when she was told she has MRKH.

She recalled: "I'll never forget the day that the doctor drew the curtain around my bed because he hadn't with any other patient on the ward, and he drew, with a pencil on a piece of paper, what I had and more what I didn't have.

"But I didn't factor in how serious it was at the time it would just felt like white noise. I just couldn't comprehend it. I was coming around from anaesthetic, but my mom's face said it all looking back."

Just as she'd reached the age of consent but before she could legally drink alcohol, Ally was told that if she wanted to have a vaginal canal or have penetrative sex, she would need to make her own vagina.

Ally was also informed that if she wanted to have children, she wouldn't be able to have them biologically.

To explain, the majority of women with MRKH are able to create a longer vagina by stretching the small amount of vaginal tissue already present, otherwise known as a 'vaginal dimple', however on medical advice, various surgical procedures are performed, which require vaginal dilation post operation.

As per the NHS, this is done by using specially designed smooth cylinder-shaped objects created for this purpose called vaginal dilators.

Faced with such a huge life decision at 16, Ally decided to go ahead with the dilator therapy. It was successful and took her nine months, but left her with a lot of shame and trauma because of the stigma surrounding it.

In her memoir, Ally goes into detail of how the diagnosis affected her teenage years (Supplied)

Making her own vagina

Ally recalled: "They said that when your knuckles turn white, you're doing it correctly. That's the that's the force of pressure that you need to do. To do that doesn't ever feel right for anybody, yet you're you've got to equate that with progress, and that's where I kind of started to associate intimacy with shame and intimacy with pain and pain with progress.

"And all the relationships that I made were unhealthy links."

Reflecting on the moment she got the news, Ally heartbreakingly recalled: "I think it's weird. First of all, your peers are going through all these rites of passage. So they're talking about their first period, they're talking about potentially going on contraception, they're talking about having sex for the first time, asking 'Have you got a spare tampon?', and I don't think we probably appreciate at that age - or any age - how many subconscious narratives take place around what it is to be like a woman.

"Honestly now, I don't think that I did compute it. I think I was just stunned. I literally was in a state of numbness for years. I mean, I acted out.

"I didn't have the ability to properly express myself, and I didn't actually know what I was trying to express. I just know that I was incredibly angry.I formed bad relationships and I massively misunderstood the difference between love, intimacy, and pleasure. I just thought sex was… sex! It’s quite tragic really."

Ally is now a vocal advocate for others and wants to squash the stigma around women's health (Supplied)

Squashing stigma and creating change

Now, after years of struggling to come to terms with her diagnosis, Ally wants to be a shining beacon for other women who have MRKH and may feel like they're alone.

Since 2021, she has held the position of Board Trustee with MRKH Connect, Europe’s flagship charity for MRKH support and awareness, as well as being a vocal advocate, writer and speaker.

'Vagina' is not a dirty word, and Ally believes that by reducing the shame, stigma and censorship around this is the way to make a change.

"I just knew that I didn't want anybody to go through what I had gone through, and that we need to start shining a light on MRKH - but we also need to start shining a light on women's health, especially when it comes to stigma and taboo," she said.

"It's lovely because MRKH is a part of my life, but it's not my life, it's not my identity. So I'm in this really wonderful, really great place where I feel quite liberated from it.

"I know my worth. I hold firm boundaries between good and not-so good people. I am eager to see what happens next for me."

Ally added: "When shame gets into your bloodstream, it can take forever to get out. I don't blame myself, and I don't take it on board of it being personal. I actually think probably my greatest achievements have been as a byproduct of this diagnosis."

You can buy Ally's book, Vagina Uncensored: A Memoir of Missing Parts, here.

If you have been diagnosed with MRKH and need support, get in touch with MRKH Connect.

If you are worried about infertility, you can visit the NHS site for more information here. Or for free, impartial support, call Fertility Network UK on 0121 323 5025 on Mondays, Wednesdays and Fridays, or 07816 086694 on Tuesdays and Thursdays, between 10am and 4pm.