Updated: Mar 23
Unsurprisingly, my journey to being diagnosed with MRKH type II was a result of each year going by without me starting my period. At age 14, my mum brought it up at the end of a doctor’s appointment. I was told to book another appointment if nothing had changed by age 15. A year went by. At age 15 I had another appointment and was told exactly the same - to keep carrying pads in expectation and to return the following year. It wasn't until my appointment at age 16 that my doctor began to express some concern. Initially, the fear was that I had PCOS - a hormonal condition that can cause irregular or absent periods.
The first test was a blood test on my hormones, to determine if I had excess testosterone levels causing menstrual issues. A few weeks later I got a phone call saying my testosterone was within the normal female range and that it seems I had started menstruating, but with no bleeding. It was at this point that the panic began to set in and I became seriously worried that something anatomical was not as expected. A few weeks later, I went for an ultrasound in which none of my reproductive organs could be found, except, funnily enough, an unclear image of a uterus which I was later wrongly informed by my GP appeared to be backwards. He then referred me to a gynaecologist, saying that my scan was “abnormal” enough to require the attention of a specialist. The next few months were so emotionally intense that in comparison my diagnosis seemed like a relief. I remember sitting in a study period at sixth form, separated from my group of friends and googling the various anatomical differences that could cause women to not bleed on their periods. I would regularly stay up till the early hours of the morning reading chat threads of people in similar positions to me to the point of unhealthy obsession.
However, when I came across MRKH, and in particular, the missing kidney associated with type 2 (which I was diagnosed with from birth), I somehow knew with absolute surety that I had it. Every night I would try to convince myself that I was overthinking and clung onto my diagnosis of a retroverted uterus, but in my first gynaecology appointment, my doctor made it clear she was going to send me for an MRI to test for MRKH. Finally, I was diagnosed with MRKH type 2 on the 7th May 2020. My poor gynaecologist tried her best, but her awkward delivery of “I’m really sorry but you don’t really have a womb” and “you have two healthy ovaries though, so that’s something at least!'' still came as a moment of absolute shock. Even though I had read so much about MRKH by this point, subconsciously I still held the belief that rare medical conditions and traumatic experiences were always bad dreams had by other people. Moments like that were too melodramatic, too serious for ordinary people like me. It’s like everyone has those moments when they grow up and realise that they aren’t exempt from the worst that life has to offer.
Overall, I’m lucky and thankful to say that I was supported. The first few months were the hardest as I learnt to cope with triggers that had never existed before - the period conversations at school, the pregnancy jokes my friends sometimes make, pregnant women on the street, even female historical figures in my lessons who I secretly and shamefully wished were infertile so I could at least relate to them to some extent. I grappled constantly to find someone I could genuinely admire who was like me. It’s obvious to say, but being diagnosed with MRKH had a profound impact on the way I viewed and perceived my future. Having and bearing children was always a natural expectation around which I shaped my desires in terms of career and university. But MRKH totally changed all that. I can now look back on this as a blessing of sorts. MRKH gave me freedom from the restrictive narratives of expectations of women that I had held my entire life. However, that doesn't easily and naturally replace the life we feel we’ve lost; a life that was never really ours in the first place. What was once a safe and structured script becomes an empty and expectation-less space.
Thus far, my entire experience with MRKH has been clouded over by the pandemic, and even had I wanted to, approaching surgery would have been near impossible and dilation is something I am yet to investigate. My sheer lack of experience with vaginal lengthening treatments causes it to be one aspect of the MRKH narrative that I cannot relate to, though my feelings around medical intervention have changed dramatically since diagnosis. Initially, the idea of medical professionals having any involvement with my ability (of lack of ability) to have penetrative sex just further alienated my from my own body. What was not a concern of mine in any way at age 16 became a toxic preoccupation I never asked for or needed, which I’m sure is something that resonates with a lot of us. Being at an age where sexuality, loss of virginity and relationships become realities for many around you at the same time as what I perceived as a total loss of potential for these things led to a lot of anxiousness surrounding these topics and their potential future relevance in my life. But, speaking from my frankly small two years of experience, whilst there was no one moment where all of this insecurity goes away, or one singular person who magically understood and healed all of those fears, they have subsided. Mostly what I’ve learned is that everyone - particularly other members of queer communities - has awkwardness and worries and concerns and fear surrounding these topics. It would be mostly avoidable if sex education in schools was less heternormative and more inclusive, which could lead us all on to an entirely different path. What remains, however, is that we are not alone in feeling ostracised from the conversations about sex and relationships in our mid teens. As I have learnt to be more open, I have found that so many people have related to me. Perhaps this is something that comes only with age and with the right people. At age 16 I would not have been ready for such brutally honest conversations about such brutally private feelings and memories, but they say time heals all wounds, and for me, toxic feelings surrounding vaginal lengthening treatment has definitely been one of them.
This finding of a community has been so key on my journey. It was through Instagram that I accessed many accounts of other people with MRKH that have made me feel less fundamentally alone. Not only do these spaces allow for learning and the sharing of advice and experiences (both of which are very helpful, particularly when it comes to learning about fertility and treatment options), but for the human connection which 16 year old me so desperately craved. It was through Instagram that I met Vics (who to date remains the only other person with MRKH that I have met in person - knowingly, anyway!), and eventually joined Stars as an editor when it was founded. Despite my consistently late submissions and chaotically sporadic style of working that she puts up with, working with Stars has been a wonderful experience. It has given me the opportunity and commitment to write things like this, and to record and look back on how far I’ve come since May 2020, something for which I will forever be grateful. Similarly, connecting with members of the LGBTQ+ community has been to find a place of total genuine acceptance of being intersex. Particularly at university I have found the queer community to be a space of connection and often unexpected similarity and relatability. It is through this that I have made some of my closest friends and been able to be a more true and authentic version of myself.
As things stand, I am in my first year of a Music degree at the University of Cambridge. My current intentions are to keep doing postgraduate courses to avoid the imminent future of employment as a music graduate who can do little else other than compose substandard string quartets and talk about mediaeval lutes. But life is good! Really good! And things are very happy and beautiful and wonderful and I can wholeheartedly say that without MRKH I would not be the (sometimes) secure and grounded person I am now. I certainly would not have had the courage to apply here. So take heart dear recently diagnosed - things will be okay. In fact, if you allow them to be, they will be better than you could have ever imagined.