Written by Priya Raj
Being born with an absent or underdeveloped uterus affects 1 in 5,000 female births. Stylist speaks to one MRKH syndrome patient about what it means for her.
When Vics Lane was a 17-year-old school student, she’d been through puberty just like every other young adult around her. But she still hadn’t started her period.
“I was born prematurely, so I always thought I’d be a late bloomer,” she tells Stylist. “But when I turned 17 in February 2019, I started to become concerned.”
Eventually, Lane’s friends nudged her to see a doctor. After an initial GP appointment, 100 mg nortriptyline she spent two months on a waiting list for blood tests and an ultrasound. When the day finally came there were three sonographers present.
“They were whispering to each other about me, they couldn’t even look at me,” says Lane. “I knew something was wrong. At that moment, I’d never felt more scared or alone.”
Six months after her first doctor’s appointment, Lane was officially diagnosed with MRKH syndrome.
Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome means someone is born with an absent or underdeveloped uterus, an absent cervix and shortened vagina. It’s a rare congenital condition affecting 1 in 5,000 female births.
Despite being present from birth, MRKH usually remains undetected until puberty. “Patients often still have their ovaries,” Dr Ravina Bhanot, NHS women’s health specialist and founder of Zonas Fertility, tells Stylist. “This means they produce oestrogen and have normal secondary characteristics like pubic hair, breast growth and increased body sweating.”
MRKH can be diagnosed earlier if a patient’s had previous scans for other underlying health conditions, however, it’s usually the absence of a period during puberty that will prompt a journey to diagnosis. According to Dr Bhanot, MRKH is behind 15% of cases of an absent period.
Looking back, Lane only vaguely remembers what happened during her wait for a diagnosis due to the severe amount of stress she was under. She went on a googling spree to try and come to terms with what an MRKH diagnosis would mean.
An extract from a blog written by her teacher Bex Moody, who supported Lane through her diagnosis, says the teachers “did their best to talk her through the thoughts and feelings bubbling in her very confused, frightened and angry teenage mind”.
“At first she didn’t know what body parts she had; she didn’t know what was missing; she didn’t know what her future would hold,” Moody writes. “She did know, at the tender age of 17, that she was highly unlikely to ever become pregnant, carry a child or give birth herself. This is something that, at the time of writing, I still struggle to fathom as a revelation for a teenage girl to have to deal with.”
Infertility is common in MRKH patients, due to the underdeveloped or absent essential reproductive organs. So, although a patient with functioning ovaries can extract their eggs and opt for options like IVF, becoming naturally pregnant and carrying their own children isn’t a possibility.
“Painful and difficult sexual intercourse is also common due to the vagina being shorter,” explains Dr Bhanot. Although there is research being done to make treatments like uterus transplants and lab-developed vaginas available, there’s no real treatment available for MRKH.
The majority of existing treatments help to tackle painful or impossible intercourse. This is usually through dilation therapy – inserting specially designed plastic tubes into the vagina to stretch it over time – or invasive plastic surgery. But, it’s a personal choice, not a requirement.
MRKH is a rare condition, which means many doctors haven’t come across it. Out of the 10 doctors Lane met on her journey to diagnosis, only three had even heard of the syndrome.
“I very quickly became used to being my own advocate,” says Lane. “I knew what websites to show doctors and who to call when things went wrong. But it felt like a role reversal, that I – the patient – was teaching doctors about my condition”.
The mental health toll of an MRKH diagnosis is huge. “The unexpected nature of the diagnosis and it being a condition many doctors know little about can significantly affect your emotional wellbeing,” Charlie Bishop, director of charity MRKH Connect, tells Stylist. “Being told you cannot carry your own children when you are just a child yourself is impossible to describe. For those interested in having children it’s especially impactful.”
“It affects your relationships and how you feel about intimacy and pleasure,” adds Bishop. “Being told that penetrative sex may be painful or even impossible is daunting. You’re faced with adult-level problems in your formative years”.
Lane’s mental health became progressively worse as her diagnosis sunk in. “There was trauma from many hospital visits gone wrong, coupled with infertility grief as well as friends not accepting me because I have MRKH,” she says. “I felt like I was damaged goods.”
When she started university in September 2020, Lane found herself “in a really dark place”.
“We were in lockdown and none of my university friends knew about my diagnosis. I was too scared to tell them because of bad past experiences telling friends,” says Lane. “Living in a new city with new people, I wanted to leave my MRKH life behind. But, I felt like I was living a lie. My isolation was on another level.”
Lane moved back home in December 2020 and made a new year’s resolution to come back from rock bottom. Along with help from her friends, family and a specialist psychologist, it was finding a community among other people with MRKH that really helped her “get the real Vics back”.
Through charities like MRKH Connect and social media, Lane was able to meet others going through exactly the same experience –people who understood. One helped her to contact a specialist clinic, another, Jemma, became “like a second mum”.
“Jemma talked me through everything that was worrying me,” says Lane. “She helped me process such a life-altering diagnosis. She gave me a real sense of safety, just knowing I wasn’t alone.”
Lane went on to create MRKH Stars in April 2021 to help young and newly diagnosed people living with MRKH find help and support. “Having a community around you when you’re going through something like this is so important,” says Lane. “We want to reach those younger MRKHers who feel lost, alone and isolated.”
“Seeing others go through experiences you know will happen to you is like a window into your future, and that can be scary, but I also know I’ll be as prepared as I can be for whatever the future holds, and I won’t be alone.”
You can find more information about Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome on the NHS website.
For support and advice visit MRKH Connect and MRKH Stars.
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