Brave MRKHer Emily shared her story of living with MRKH which is now available to view on the Truly YouTube Channel.

This was Emily’s first time sharing so publicly all of her story and as we all know that isn’t easy but she felt empowered to share.  We have known Emily a while now and we couldn’t be prouder of what she has done and her own confidence and growth with MRKH during that time.  A journey with MRKH is not easy but knowing there are people to turn to is so important.

Read a bit more about her story below.

Here are Emily’s words she shared with her video. Thank you Emily for your courage

“This is extremely hard for me to post, but this is my story. While this in no way defines me, it’s always going to be a part of who I am. When I was just 16 years old, I was diagnosed with a rare condition called MRKH Syndrome, which affects just 1 in 4500-5000 biologically female (XX Chromosome) births. For me, this meant that I was born without most of my reproductive system – complete absence of my uterus and cervix and missing the majority of my vaginal canal . The nature of the condition means that I have never and will never have a period, but I still ovulate as normal. I was fortunately born with both of my ovaries, and in the next few years I will be able to find out if these are healthy, which would determine whether I have the opportunity to have children that are biologically mine via IVF and surrogacy. I will explore my options more in the coming years, maybe even looking at uterus transplants or adoption!

I was lucky to be able to have surgery (after 18 months of unsuccessful dilation treatment) to create a vaginal canal. I had something called the Vecchietti Procedure, which was successful after 9 days of agonising treatment.

The diagnosis is devastating news, especially at just age 16, so my mental health really suffered as a result. I also can’t put into words the amount of confusion and pain you feel to mourn the loss of a baby that you may never have.

I am still learning to cope with the diagnosis and am constantly working on bettering my mental health. The amazing community of MRKH women empowers and supports me every day and I’m so grateful for the women I’ve met throughout my journey. (Special shoutout to Charlie Bishop for being a part of this video with me and being such a great friend). I’m also extremely thankful for the constant support from my wonderful family, friends and boyfriend – I really couldn’t have got through any of this without them all by my side

Thank you to anyone who has taken time out of their day to understand a bit about my journey if you want to learn any more about the condition then feel free to ask me any questions or look at MRKH Connect

And if anyone with MRKH comes across this then please message me and remember that you are NOT alone, you are enough and you are strong