MRKH comes to the surface in Australia.

“In my life, I will avoid all circumstances where public speaking is required of me. In fact, I have been known to tell my past employers that if they ever ask me to speak in public; in front of my peers, I will more than likely resign first”. This was not a threat, this was my reality. As it happens, this statement was also my opening line – and confession – as I commenced my speech at the first Australian MRKH Support Group for women at The Royal Hospital for Women in Sydney, Australia; in addition to “I am really quite scared”.

I am writing this blog whilst sitting on a flight heading to a work conference in the Gold Coast, Queensland. The hour flight is precious and uninterrupted, as I dissect what has actually happened to me over the last year. For many years I believed that the universe owed me big time! I was due a very long and over-due reimbursement from life.  It was my consumer’s right to be compensated for the opportunities, experiences, laughter, and love that I had been denied for the last sixteen years. Furthermore, I wouldn’t have to lift a finger to receive it. I could sit in my office or slouch on the sofa every weekend for an entire year and it was only a matter of time before the cheque would arrive in the post, singed ‘The Universe’.

I started writing eleven months ago. What started off as one short story, turned into my first blog; the blog that released me from my shame and the palpable, demanding guilt I shared with myself daily. The second and third blog entry swiftly followed and the fourth inched its way out of me after a period of great sadness and raw confrontation. What happened after that was magical – I allowed life to happen and had a heartfelt reconciliation with ‘The Universe’.  I professed, after many tears, “it’s not you, it’s me”, and “please The Universe, can we be friends once again?”

Earlier in 2013, I wrote an email to The Royal Hospital for Women exploring if there was an opportunity available for a support group and a face-to-face forum for women who have been diagnosed with MRKH. After a short wait, I received a reply; yes, there was!

Overwhelmed with an immediate and encouraging response, I ventured to meetings and exchanged many emails to coordinate and plan the Support Group with The Royal Hospital.

Jennifer Morrissey, a wonderful, warm and approachable woman soon became the person who would share this journey with me. She would become our advocate and spend her precious evenings folding letters and her days speaking with executives and the hospital board, seeking endorsement to plan the support group with me. Our meetings would last two hours, sometimes more and with each visit I was learning the facts and, at times, the harrowing realities of MRKH. 

Dr Rebecca Deans, a gynaecological physician with extensive experience of MRKH, attended the fortnightly meetings and acted as our MC at our very first group meeting, in addition to presenting on MRKH and Embryology and the relationship between the two. Dr Deans, shared with me, that for many years, she wanted to see a support group form and that perhaps this was our time to do so. 

Both Dr Rebecca Deans and Jennifer Morrissey both worked in The Queen Charlotte’s and Chelsea Hospital London where I was originally treated back in 1997 and suddenly, the world felt like a smaller place. I would meet with Dr Deans and Jennifer regularly to discuss how the day would unfold and what we hoped to achieve from this relationship. Dr Deans once said: “please call me Rebecca” and I was suddenly in awe of what was happening. My silent monologue often started with “what have you done Ally, you are changing. Embrace, smile and set your intentions now!”

During one of the planning meetings, I was informed that Emeritus Professor Michael Bennett had expressed his enthusiasm and support of the MRKH Support Group Meeting and would be presenting on the day. The moment I shook Professor Michael Bennett’s  hand, I honestly felt like I was in the presence of something quite remarkable.  He was like Gandalf from the Lord of The Rings. He was polite and stoic and absorbed every comment in the room as he, (the only man) sat listening and I am sure I saw a very small tear as the day concluded. I had the pleasure of sitting next to Professor Bennett throughout the day and as I was about to offer my speech, I leant over to him as though he was my teacher, my friend, and I asked “how do I do this?” He paused for a moment looking longingly at the ceiling searching for the correct words, to then find my eyes and wisely utter, “Speak as though they are your friends, as they are indeed your friends”. That was all I needed and so I continued to offer the story of my childhood, my diagnosis of MRKH, and the challenges and the tears I had experienced along the way. Of course, in hindsight, I wish I had said different things; perhaps my account was a bit dark and too honest?  However, I remembered to speak as though I was delivering the 6.00PM news bulletin (as news readers always seem confident), I made eye contact and I confronted the fear that paralyses me. I almost think I may be good at it.

Mothers cried and offered gratitude and daughters looked at presentation slides with focus and a wanting to understand what lies beneath our skin. I, for one, felt that this was my diagnosis day, as the white noise and denial clouded any formal explanation that was offered to me from my doctors back in 1997 and here I was, a patient looking on.

A woman, whom I can now call my friend, shared her story and journey of MRKH, discussing surrogacy and the challenges that she had encountered as a woman whose true purpose and desire was to be a mother. To go through life, battling instinct versus body, to welcome her daughter into the world, her miracle as she says. She was the mum she had always dreamed of, and as I panned the room for response, there were only tears.

After the biggest day of my adult life, I phoned home and just sobbed in pure joy.

Now the real work begins.

You will often read the words, ‘you are special, unique and beautiful’ and although I know you are all of these things, my instructions on how positive affirmations can change lives, will often sound hollow and futile. The messages often mirror from one girl to the next, as do the realities and fears that we share and by me saying that it will be ‘okay’, is far too easy a sentence to write. I do however believe in the struggles and have found myself only recently in a position where I questioned how honest I could or should be. So, in a bid to avoid sounding disingenuous or cured from the harsh difficulties of this diagnosis, I would like to ask if I ever meet you or speak with you, can we become friends and work through this together?  – I am simply humbled by you reading this far- my sister, thank you.

– Ally


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4 Responses to MRKH comes to the surface in Australia.

  1. Valery Roan says:

    There are so many emotions and thoughts that I couldn’t express during last 18 years and I still fully can’t. It’s so liberating to read your writings Ally! Thank you!

  2. Ally Hensley says:

    Hello Valery- thank you so much for this comment. Somehow, writing offers me clarity and ‘mental space’ to really understand what is going on -Let’s keep sharing I say xx

  3. wazza3010 says:

    Beautiful writing Ally. X

  4. Pamela Alexander says:

    Beautifully said. Thank you for all that you do, you have helped and supported so many girls who otherwise would have remained in the dark thinking they were the only ones. You are an amazing and beautiful human being. Thank you.

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