Updated: Mar 23, 2022
I’m Vics, I’m 20 and I’m the founder and co-director of MRKH Stars.
I live with a condition called MRKH Syndrome, like most of our team do, but I didn’t always know I had the condition; I was diagnosed in 2019, when I was 17.
My journey to diagnosis was far from straightforward, it started off with a GP visit just after my 17th birthday because I hadn’t started my period. The GP ordered blood tests, then an ultrasound. The results of the ultrasound appeared to show that I had no womb, and no ovaries; this was wrong, but at the time I didn’t know that.
I was scared after those results. We were then told we would be waiting months before finding out anymore. So, we decided to switch from seeking answers with the NHS to meeting with a private consultant, and the whole process was sped up from there.
My mum and I met with her, and she ordered more tests. This time: an MRI, more blood tests, and a meeting with an endocrinologist (a hormone specialist). He then asked for the MRI to be conducted on my brain as well as my pelvic area and, of course, more blood tests.
After going through all that, and then the month long waiting period for results, I was diagnosed with MRKH on the 11th July 2019.
Initially, I felt so confused. I didn’t understand how I could be so unlucky. My whole life changed in that moment when I was diagnosed. I screamed, I cried and I completely lost myself. The first 18 months after receiving my diagnosis I was a mess and faced some serious battles; some with my physical health, others with my mental health. This diagnosis tested me in every way imaginable, and in some ways now, it still does. I was at my lowest from September-December 2020. It was a truly difficult time for me. I had just moved to university, which me really struggle with my MRKH diagnosis. I naively thought that I could leave my MRKH life behind me when I moved. I wanted uni to be a place where I could start fresh. I wanted to settle with that big change without the fear of my diagnosis getting in the way of my new life. I took a brief step back from advocacy, and barely spoke about my diagnosis to anyone, I even avoided it in therapy. But the pain was still there. I had moved my life to a different city, but MRKH came with me and, at the time, was an unwelcome addition to my new life.
Even before this big shift in my life, I spent a year after my diagnosis fighting through the system to desperately try and access the correct medical care. I was meeting doctor after doctor at various different hospitals feeling stuck, getting offered incorrect courses of treatment and advice. All I wanted was to be referred to the specialist team at the Queen Charlotte and Chelsea Hospital, a team I only knew about because the MRKH community led me to them. Without that influence, I probably would have been pushed into a surgery I didn’t want, long before I was ready.
The team at Queen Charlotte’s advised me that the treatment they offer (dilation) is non-surgical, less invasive than the surgery, and that there is no rush to start it. That conversation was 18 months ago, and I still haven’t started using the dilators because, quite simply, I just wasn’t ready to. Right now, though, in this moment in time, I am on a waiting list to start the treatment.
It took me being in psychological therapy for well over a year to finally feel ready to start that part of my journey and, whilst I haven’t started yet, we are preparing for it now. After all of the trauma I faced in and around hospitals, I had a deep-rooted fear of attending appointments. Now, slowly but surely, I am working through that, and when the time comes for me to start using the dilators, I will be as ready as I ever can be. Had I agreed to start treatment sooner, or agreed to the surgery before I had processed all of those difficult memories, I definitely would not have been in a position to do what I do now in running MRKH Stars.
When I was first diagnosed with this condition, it was the MRKH community that saved me. They advised me on the right course of treatment and were, and are still, an incredible support to me. I have found my second family in this community: a bonus mum, some big sister role models, some younger sisters, who I now support, and some of my best and most trusted friends and confidants.
We have had teary phone calls, and sometimes we argue, but we also spend nights talking and having a few drinks, or having movie nights. Having people around you who just get it, can help you work through your trauma and difficult feelings in the correct way. With no self-destructing or bottling, we take things step by step, is so important, and we do it safely. We have been through so much together, we have become a family, and creating MRKH Stars has led me to be a changemaker up there with the amazing people who have changed my life.
This journey hasn’t been easy. My people have seen me in some of my deepest darkest moments, memories that I would give anything to be able to erase for all of us. But, in time, they only made us stronger and now, I know we can face any challenge the world throws at us.
This journey isn’t meant to be fought alone. We are here to make sure you don’t have to. Right now, I have some truly amazing people in my life, who I wouldn’t have if it wasn’t for my MRKH diagnosis. I wouldn’t be here today without this community, we support each other unconditionally, and we are here to do that for you too! X