Living with MRKH
PUBLISHED: 12:25 07 September 2020 | UPDATED: 12:25 07 September 2020
Ally Hensley talks about her experience with MRKH and how she’s learnt what it means to be different
“When I was 16, like any other girl, I was expecting some changes in my body to start taking place, especially my first period. It’s a rite of passage into womanhood after all. But my period never came,” says Ally Hensley, who grew up in Pangbourne, Berkshire.
“I went to see my GP and they told me to go away for a year, and to wait and see what happens. But when I returned, I was given an internal exam and the doctor immediately knew something was wrong. I was referred to the Royal Berkshire Hospital for an ultrasound and a laparoscopy, where they used a camera to examine inside my abdomen. When I came round I thought I’d be fixed. But that was not to be. The surgeon pulled the curtain around my bed and drew a diagram of what my reproductive tract looked like...”
That day, Ally was diagnosed with MRKH (Mayer–Rokitansky–Küster–Hauser syndrome), the under-development or absence of the reproductive tract, which affects one in 5,000 women. There is no clear reason why it occurs.
“The surgeon was explaining that externally your body forms normally, but inside, it doesn’t. All I heard was white noise. It was so overwhelming and unexpected. I couldn’t comprehend it,” says Ally. “There I was, in the middle of studying for my A Levels, already struggling with my teenage years, and then suddenly I was being referred to London for vaginal lengthening. I was basically a child, learning I couldn’t have a child. It interrupted the formation of my self-esteem, my femininity and my identity. My parents didn’t know what to say, and having your family focussed on something so intimate was embarrassing and terrifying in equal measure.”
A few weeks later, Ally went to London for dilatory therapy [surgery is also an option], and even though it was successful in creating a vaginal canal, she describes the three days she spent having the treatment as “hell”.
“When my mum collected me, I fell to my knees in tears. And after that, I stumbled into 15 years of destructive behaviour involving food and alcohol, and I was actually quite promiscuous. I wanted to know that things were working and it seemed like my ticket to womanhood. I had a lot of unhealthy relationships with men – I was basically doing anything I could to hurt myself,” Ally says. “Anything to affirm I wasn’t good enough. Worthless. I managed pubs for years, and hung out with people who had their own demons. And then I ran away to Australia; somewhere no one would know me.”
Then, seven years ago, in 2013, Ally’s mum suffered a stroke. “I flew back from Sydney, where I’m working as an Executive Assistant at a university, to Berkshire and when I saw her, I realised, if she can recover from this life-threatening condition, then I had to do the same. I was tired of being a passenger in life. I realised I had to take accountability for my happiness,” she says.
So when Ally returned to Australia, she contacted her local hospitals in Sydney to see if they had any support groups for MRKH. She partnered with the Royal Hospital for Women and that November, she held their first Peer Support Group and wrote a ‘coming out’ piece called Becoming Ally.
“Suddenly, I got it,” she says. “I realised this was why I was here. I had suffered enough to be able to empathise with other women who had MRKH, but I had also recovered enough that I could show it could be all right. Meeting others with MRKH, I’ve realised how brave women can be. How graceful – but also quiet.
“There are two sides to MRKH: the sexual function/identity side and the infertility side. Both are taboo subjects and come with their own stigmas. One in eight couples struggle with infertility, but no one ever talks about the gynaecological issues, do they? I wanted to create a safe space where they could do this.”
Ally went on to set up the Sisters for Love Foundation and last year, she received a funding grant to support MRKH peer support.
In March this year, when the coronavirus pandemic hit, Ally decided to board a flight home before they shut the borders in and out of Australia, so she could be with her parents in lockdown. And during her time in Berkshire over the past few months, she has been working on a new website.
It is a registered charity and not-for-profit organisation. Ally’s goal is to provide a private, safe space where people can come to learn, understand and find connection. It’s for women all over the world. With the right support, Ally hopes people can come to terms with their condition and not suffer the isolation, loneliness and impaired mental health that she did.
She says: “I think helping others has inadvertently helped me heal myself. I look back on the past 24 years and realise I never felt female. It’s only in the past six months that I’ve built a relationship back with my body. I finally like myself and feel comfortable in my own skin.”
Ally has also had to deal with her fertility grief. “There are constant developments in the medical world, for example pioneering uterus transplants, and surrogacy or adoption is also an option for women with MRKH, but I decided not to fix my fertility,” she explains. “I’m not someone who can live on a maybe, so I grieved and moved on. It was a difficult decision but I’ve decided I’m going to live my best life in the absence of having children. I love yoga, swimming and writing, and I’ve found my purpose in life and that involves helping as many people as possible.”