Updated: Mar 23, 2022
I was 13 years old when doctors told me I was born without a womb. I already had a long list of medical diagnoses before this and this was another one that I didn’t think I could handle. I had gone to the emergency room for an unrelated issue and after my surgeon reviewed some imaging I had of my pelvic region, he came to the conclusion that I was born without a uterus, cervix, and vagina. I had no idea the name MRKH existed for another 5 years after my diagnosis.
I initially felt angry at my body for betraying me, frustrated that the life I thought I’d lead felt foreign now, and confusion about what was happening to me. I pitied myself at first and felt a great deal of shame around my diagnosis.
Since I was so young and the adults in my life didn’t know I was sexually active, I didn’t receive further treatment immediately after my diagnosis. My doctor recommended dilation but told me to come back when I was ‘ready.’ I attempted to seek treatment for dilation therapy when I was 18, but was told that my insurance didn’t cover women’s specialized health. Now at 25, I’m ready to start dilating again just as a way to explore my body.
As for mental health, I was in therapy at the time of my diagnosis while I was dealing with family issues, but MRKH rarely ever came up because I didn’t know how to talk about it, and it felt like a secret I had to keep hidden. It wasn’t until just these past couple years that I really started opening up about my journey to a therapist. My therapist pushes me to step out of my comfort zone to meet more people like me and connect with my community. I didn’t know a community of women with MRKH existed until I was 18 and was invited to join a Facebook group. I made an introduction post and was immediately flooded with love and support from women all over the world, but most importantly people in my area. I was so overjoyed to finally feel like I belonged somewhere. It was incredible to see that I wasn’t the only person in the world born this way. I felt so alone for years and the love and support wasoverwhelming. I attended a conference in Philadelphia in 2016 and met several women in my area. Over the years, however, I grew further apart from the community because I still wasn’t ready to be open about MRKH.
It wasn’t until I started attending therapy that I gained the courage to join MRKH Stars; I messaged the Instagram account to tell them how much I adored what they were doing and how wonderful it was that they were offering a safe space to the newly diagnosed. Vics then invited me to join the writing team after I submitted a sample piece to the blog; I joined officially in December 2021 because I finally decided to start my advocacy journey. I love being a part of Stars because it gives me a sense of belonging and comfort; I find it therapeutic to journal and write to express my feelings and Stars gives me a positive platform to do so. All the women on the writing team are so inspiring in their own way and everyone was so welcoming when I joined.
At this point in my MRKH journey, I'm ready to start my advocacy and activism journey, I hope to one day be a patient care advocate and help people navigate the medical world the way I have from an early age. I know one day I’ll be able to make a difference in someone’s life the same way my life has been changed by those before me.