Imagine being told at the age of 17 that you’ll never have children.
This was the devastating reality for me after I was diagnosed with Mayer Rokitansky Küster Hauser (MRKH) syndrome, a condition characterised by an absent or undeveloped womb, lack of a cervix and a shortened vagina.
I was told that – while I still had ovaries – there was no womb visible at all.
That’s why news this week of the first successful womb transplant in the UK is so remarkable. It’s not only an incredible feat, but also something that will give a lot of people in our community hope.
My journey to diagnosis saw me undergo lots of tests, after my periods hadn’t started by 16. I was put on the pill in the hope of triggering them, but it didn’t.
I also had a pelvic ultrasound and then a laparoscopy, where they put a small camera through my belly button to have a look into my abdomen. At the time, I just wanted the tests to be over and a conclusion to be given – it was the waiting that was so hard.
I count myself lucky because the process in itself took about eight months to reach diagnosis. I’d later learn how much longer and drawn out that process can be for others – even now.
I remember feeling numb after diagnosis. Those first months – possibly years – are now a bit of a blur trying to understand what it meant because there was very little information available at that time and I felt completely lost.
In sex education, we’re taught about periods and puberty, but not what happens when periods don’t occur – or that, for some of us, they won’t ever come on. As a result, I was completely unprepared for the reality of the situation.
Being told as a teenager that you don’t have a womb and that you will never be able to carry your own child brought forward adult topics of what the future holds far too early. I shouldn’t have needed to be thinking about whether I would be able to have children someday, yet it was all I could think about.
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After being referred to Queen Charlotte’s and Chelsea Hospital – a specialist centre for MRKH – I had the chance to meet with doctors who could explain the condition, tell me more about what it meant for me and that it affects one in 5,000 female births.
They also explained what options there were if I wanted to lengthen my vagina, what counselling support they offered but also – importantly – connected me with others through their support group.
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Walking into those groups and seeing a room full of others with MRKH was overwhelming. There were people from across the country at all different ages and stages of their journey. I didn’t feel so alone anymore.
Around 10 years ago, I first heard of MRKH Connect at one of these support group meetings. It’s a charity set up in 2014 to bring those with MRKH together, run by people who have it.
The hope for those within our community who wish to pursue a path to parenthood and carry their own child is not something to be underestimated
As time went on, I started to get more involved in the charity by helping with the member management and news items, then becoming a trustee in 2017.
Throughout this time, I’ve learnt that one of the most challenging things when speaking to others is that there is such a misunderstanding about our anatomy. Yes, we can still pee. How this could even be a question, I have no idea. Yes, I am still a woman too. And no, we are not ‘lucky’ not to have periods.
Then, in 2019, I was asked if I would take over the charity because the founders decided to step back. I remain grateful for that incredible opportunity. Our mission remains the same – to connect people with the condition, while raising public awareness too.
That’s why the first UK womb transplant recipient reportedly having MRKH too is so monumental. To see MRKH be so visible in the news feels ground-breaking and I hope it sparks discussions on these typically taboo topics to improve awareness of infertility across the board.
On a personal level, I felt such a sense of pride that this is now a reality. That MRKH and other non-functioning uterus conditions are being recognised and acknowledged by the incredible feats of science undertaken by the medical community.
Had I known this was an option 20 years ago, I wonder to myself if it would have changed my path. While I have chosen a path without children, I am beyond delighted for those for whom this news will provide another way. A way so many of us never imagined.
What womb transplants will bring to those in our community who want to have children is amazing. It provides hope and inspiration.
The hope for those within our community who wish to pursue a path to parenthood and carry their own child is not something to be underestimated. This feels especially remarkable because most of us are told when we are only children ourselves that we will never have that chance.
I am excited to see how this progresses, but also curious as to how accessible it will be.
I hope incredible scientific feats like this provide perspective and education, provoking discussion on the important topic of infertility, which is so often underrepresented.
For more information on MRKH Connect, visit: www.mrkhconnect.org
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