17 year old high school student Vics Lane, hadn’t yet started her period. She went through puberty, as every young adult around her did; but never started her period. She made a promise to her friends and got support from her school teachers, to make the GP appointment that eventually led to a diagnosis of MRKH Syndrome.
MRKH - or Mayer-Rokitansky-Küster-Hauser - Syndrome, is a condition where someone is born with underdeveloped reproductive organs.
They may also have a shorted vaginal canal. In Vics’ case, she has no womb (only two tiny uterine remnants, which she calls her “womb buds”) and an absent cervix, and her vaginal canal is only about 2cm long. MRKH affects approximately 1 in 5000 AFAB (assigned female at birth). Like Vics, it’s usually the absence of a period during puberty which will prompt a journey to MRKH diagnosis.
She recalls the story; “one of my teachers found me an empty classroom at school so I would have some privacy, and I phoned the GP there and then. From that first phone call I could hear the alarm bells ringing in my GPs head, I could feel a sense of worry in her voice, I don’t think she had ever come across this before. She called me in for a consultation for some time in the next week. I cancelled the first appointment because I was too nervous, I just couldn’t face this by myself - I had a hunch it would be bad news”.
Vics mustered the courage and went for her appointment the following week, with her best friend in tow. She was referred for some blood tests and an ultrasound, which had a waiting list of around 2 months. On the day, there were 3 sonographers present who correctly diagnosed the absence of a uterus, but also misdiagnosed the absence of her ovaries. “I think that memory will haunt me always” tells Lane. “It started off with one sonographer, she looked confused, so went out and got someone else, and then again, they got a third person in, so by the end there were three people whispering to each other about me, they couldn’t even look at me, I knew something was wrong. In that moment, I had never felt more alone, or scared, my mum wasn’t even allowed in there with me. It was horrible. I remember going back into school after the scan, I found one of my friends who asked how it went and I just screamed “I can never have a baby!” and I burst into tears. I was heartbroken and completely devastated;
I felt broken, damaged, I didn’t see how I could come back from this.
At this point she went on a googling spree and came to terms with the possibility of an MRKH diagnosis, and was officially diagnosed with MRKH syndrome on 11th July 2019. “It wasn’t all bad news though, because my gynaecologist told me that the MRI scan revealed that I have two fully functioning ovaries, which before that moment, I didn’t think I had. I celebrated having ovaries but I grieved the rest, my world stopped, and my life changed forever, and the journey only got harder from that moment on”.
Her then gynaecologist advised she hadn’t seen a case in over 10 years, and referred Vics for an incorrect invasive course of treatment; plastic surgery to lengthen the vaginal canal. Not surprising when out of the 10 doctors Vics has met on her journey to diagnosis, only 3 has even heard of MRKH, and two of those were at the specialist centre, Queen Charlotte’s. The MRKH community rallied around Vics and supported her during her diagnosis journey and beyond.
“After I was diagnosed, the MRKH community was what saved me. Some of the girls in the MRKH community are some of my best and closest friends,
they’re who I go to when I’m struggling with diagnosis. Having a community around you when going through something like this is so important, which is why I created my own in MRKH Stars, and running that foundation has led me to cross paths with an incredible woman called Tk who I now jointly run the foundation with, we both have MRKH and she’s one of my best friends, we support each other through everything and are an amazing team! We view peer support as a necessity rather than a luxury, which is why we run a buddy scheme called Shooting Stars, which was set up and is coordinated by Tk”.
If I was to offer any advice to someone newly diagnosed, I would tell them this quote by Ally Hensley, a writer who also has MRKH and has been a huge role model to me on this journey. When I first set up my foundation, she said to me- “it’s always good to stand on our own two feet. But, it’s always good to hold hands whilst we do it.”