‘You won’t carry a child.’ I never got a period. I’d memorize pill brands, so I wouldn’t flag as ‘not-quite-woman.’: Woman with MRKH Syndrome finds purpose in advocacy

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“I will never forget the day the doctor pulled the curtain around my bed, opened my hospital file, and explained I was born with a unique condition called MRKH. Mayer-Rokitanksy-Kuster-Hauser (MRKH) Syndrome, which affects one in 5000 females, is defined by the underdevelopment or absence of the uterus, cervix, and vaginal canal. I was just 16 years old at the time of this life-altering diagnosis. I was practically a child learning I would never carry one – long before I even contemplated motherhood. The doctor and nurse, clearly stunned when delivering this news, explained the treatment options, should I want to go down the path of vaginal lengthening, either surgical or non-surgical.

All I remember was white noise – the air became thick with a sickly punch of trauma.

Courtesy of Ally Hensley

If lucky, we will receive sex education at school. I faintly remember learning about periods, reproduction, sexual health, and the changes our bodies will likely experience as teenagers. We would hear the word ‘normal’ over-used in science classes as we all patiently awaited the ‘change.’

I am now not a fan of the word ‘normal.’

Before my diagnosis, like most teenagers ratting around the confusion of adolescence, I too was poised for my right of passage to womanhood. I now know womanhood to be a complex, intricate, and beautiful collection of moving pieces, beyond just the physical. I was here because I never received my first period – and nor have I ever since.

Sitting in the sterile hospital ward, my mother was holding my hand as we both attempted to absorb this news. Her expression was as ghostly as mine – stunned, afraid, and confused. Hospital consultations can be brief, and no sooner had I managed to swallow what remaining spit I had after general aesthesia, was the doctor and nurse moving on to the next patient.

After leaving the hospital, I took one week off from school as I was studying for my A-Levels at the time, hoping to go to university to study English and Theatre studies. Most of this time was spent fumbling through disclosures with the few I trusted. Quietly, I would lie on the sofa replaying the brief information I had been given repeatedly in my thoughts. It felt like life had just pressed pause and everything around me was motionless. It was explained to me, that whilst I was infertile, I did have the option to seek treatment for vaginal lengthening. This would take place in a London hospital a short time after my original diagnosis. I never did get my university degree, as I dropped out of school just months before my final exams due to my inability to cope with this life-altering bombshell.

Courtesy of Ally Hensley

With a bag big enough to fit three nights worth of clothes in, I set off to London. The reason people with MRKH opt to pursue treatment may vary, assuming they are privileged enough to choose for themselves at all. For some, taking control in a powerless situation feeds the unknown. For others, it’s about completeness, confidence, and of course, for the purpose of having a (penetrative) sexual relationship.

My family was my emotional anchorage. MRKH is a family diagnosis. Parents, siblings, and partners do not go unrattled in this overwhelming process. However, we — my family and I — collectively banded together and headed off to the hospital where I would commence vaginal dilation, a lengthening technique as part of an inpatient program. I completed this process ‘successfully’ nine months later. I would be upstairs doing this painful and intrusive act, while my family was downstairs desperately pretending I wasn’t.

Courtesy of Ally Hensley

The emotional impact a person will feel, despite their choices to complete treatment or not, has the almighty power to send a woman into a devastating spin. MRKH is so sensitive, complex, and layered with shame, identity, fertility-loss, hope, societal expectations, and belonging. Or in my case, un-belonging. Even now, recalling the first years after being diagnosed renders me numb. I never felt enough. I felt defected and apologetic for not being ‘complete.’ I would be grateful for bad relationships because I felt lucky enough to be in one. I would lie in social circles about contraception, memorizing the various brand names of the pill, so I wouldn’t flag up as ‘not-quite-woman’ (my words, not theirs).

Courtesy of Ally Hensley

Mastering bad relationships with food, men, and self – I would become a self-harmer in all aspects because I didn’t have the tools to express my pain in any other way. My emotional toolkit was not for the faint-hearted. Denial and façade would define me. My mental health was disguised in crowded bars, where I would appear confident and aloof. Deep down, I just wanted the noise to stop.

But my life was not to live like this. In my early thirties, I decided I no longer wanted to be a passenger in life, waiting for the universe to refund me a debt that simply was not owed. Taking accountability for happiness and acceptance often takes a series of turn-around moments. Seven years ago, my mother suffered a stroke. While she recovered from her trauma, I felt like it was an absolute injustice to her recovery if I wasn’t prepared to do the same. I needed to shed my victim status and start taking true responsibility for my happiness – whatever that was to look like.

Courtesy of Ally Hensley

During this time, I moved to Australia, and like so many in Bondi, I found my yoga mat, a place where Ally could sit in her pain. The only thing I asked of myself was not to run this time in the opposite direction to healing. Yoga holds no place for judgment, and I needed a spiritual home that would reverse what I had perfected – berating myself daily. A place where I could unpeel my long-sleeved clothes and expose the scars of my past. But the biggest ‘find’ during this time was my desire for self-acceptance. In the search for others like me, I sent a brave email to a Sydney hospital seeking support. As a former patient of the London hospital, I knew peer support groups existed and it was time for me to sit in the circle of one.

Courtesy of Ally Hensley

Unexpectedly, the email that changed my life landed in my inbox. It read, ‘Ally, currently we do not facilitate MRKH support groups, but we want to. We would like your help to do this. You have the lived experiences and skills to connect to others with MRKH in a way we cannot. We have the clinical understanding, space, and desire to do this. Let’s do this together.’

For the last eight years, I have committed every spare moment as an advocate, speaker, writer, and now co-founder of MRKH Australia – a not-for-profit dedicated to people impacted by MRKH, I have found my ‘why.’ We have built an incredible charity for people with MRKH, parents, and partners of those with MRKH and health care professionals. We are a bridge to all those who play a part in lessening the incomprehensible grief and devastation so often experienced.

Courtesy of Ally Hensley

MRKH as we know it is unbiased, uncompromising, and complex. MRKH has a global footprint – it spans to corners of the globe that are both accepting and unforgiving. MRKH rattles the societal norms relating to the abrupt interruptions of sexual development and infertility. We, my community, attempt to debunk the myths, challenge the stigma’s and trigger the movement to normalize differences.

Courtesy of Ally Hensley

For me, I am learning the liberation of living in my own skin. I have grieved the child I chose to not bring into the world through surrogacy. I no longer apologize for my diagnosis but use it as my most precious asset, because it has made me the tenacious and empathetic woman I am today. I now believe in movie-love and fill the space around me with extraordinary friendships. I believe we will never grow out of MRKH, we simply will learn to grow with it – for it even. I am now a truthteller who uses my passion for words to tell a different story. And this is hope.”

Courtesy of Ally Hensley

This story was submitted to Love What Matters by Ally Hensley, co-founder of MRKH Australia and The Happy V. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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‘Go home and rest. It appears there is nothing we can do to prevent this.’ I look over at my husband and his face breaks me.’: Mom adopts after infertility battle, ‘He chose us, he set us aside to be parents’

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