Life as an MRKH advocate
If you didn't know already, I was born with MRKH syndrome. This condition affects 1 in 5000 people born female, and we usually find out at young ages after not starting our periods. The condition means we are born with a totally absent or underdeveloped womb, cervix and vaginal canal. MRKH is a DSD (Difference In Sex Development). There are many other DSDs that you can read about on DSD families charity.
I have recently done some big things in this world of advocacy like talk to Sky News and be shortlisted for a National Diversity Award, which I am so proud of myself for but it is a big reminder of my "why". Why am I doing all of this? It's because of my teen-shame, and my deep desire to be the woman I needed when I was a girl. I want the next me to see this. To see us all. I wanted younger me to see, me. I was so broken.
After years of shame and secrecy, I became an advocate - joining a whole bunch of other amazing advocates around the globe. I started an anonymous (because fuck talking about your body online!) Instagram page to blog about my journey with MRKH, and got pretty obsessed with making content that I would have loved to have seen as a teenager. Teen-hood was complex and sad. Navigating this diagnosis and living in a body with experiences that didn't comply to the norm; from knowing I will never have a period, or get pregnant, or give birth, to creating my own vagina using vaginal dilators at 16 years old, believing if I didn't, I could never have sex. I wanted to teach people everything I wish I knew, to shake the stigma, but I was so trapped myself I found it so hard to be open. Coming out was, terrifying.
The support groups in the UK I used to go to when I was a teenager were in a Hospital setting. As great as the team here were, it always felt like a big trigger heading back to where "diagnosis day" happened and in the clinical setting of my 3-night hospital stay to introduce me to vaginal dilators. I would always leave feeling less alone, but like I didn't make proper connections.
When I was 23, after building more confidence in telling my loved ones about my condition so I could embark on more advocacy, like sharing my story in the Metro...
I decided to set up a Facebook group in London to start some socials. And it worked!
Me, Grace, Natalie, Jo and Georgia, having never met before, went to a restaurant and had dinner. I was my usual chaotic self, nervous, awkward, loud blended with shy- but I met some forever friends that day and it's a feeling I'll, we'll, never forget. We all have MRKH, all different people with difference experiences of this shared diagnosis, girls with no womb (not all identify as girls of course).
We set up a WhatsApp group with just 4 of us, and now there's 80 of us.
Grace hosted an event in Kent not long after this, then Laura hosted one in Birmingham.
We even went to visit the Vagina Museum in London, to shake up the stigma of chatting before we had our meal
Had many a themed cake for events!
Since then, in London, we've carried on with annual MRKH picnics...
And Christmas dinners with secret santa where everyone who brings a gift, gets to swap it out for another.
When life gives you MRKH, look into your heart and you will find your sparkle.
You can check out the MRKH Hub here for quotes, print outs, our podcast and events in London!
A small team of us also send gift boxes to people with MRKH in the UK, you can buy a box for an MRKHer here too or send gifts to include via our wishlist! MRKH Connect also sponsor boxes, where we have not been able to self fund them. We'd also like to thank MRKH Connect for more recently making our events more affordable and being sponsors for travel funds, to contribute to bills and more!
If you want to sponsor our events directly you can buy an event and/or gift voucher here, and we will email you to let you know how we've spent it!
If you are thinking of becoming an advocate, for whatever your reason, I am happy to give you some support and advice on where to start hello@vavawomb.com just pop me a line!