Updated: Jan 14
I am Ellamae, founder of Va Va Womb. On international women's day 2019 I wrote this blog so I thought I'd kick start Va Va Womb with a little about me:
I want to be the woman I needed when I was a girl. Being a woman is not about our genetic makeup. Let’s find beauty in what makes us different and empower each other by celebrating uniqueness. Together we are a movement of change here to inspire the generations to come by breaking the silence, fighting for what is right, sharing our stories and encouraging conversations.
With a personal story that once threatened my self-worth. I’m on my own journey to accepting myself and I’m nearly there.
Does having a uterus make you a woman? Does bearing a child define your status as female? Is starting your period the essence of womanhood? Is losing a child or assisted fertility seen as failure?
I am a woman who was born without a womb. There are 1 in 5000 people AFAB like me. There are also 1 in 6 couples who face infertility and there are 1 in 4 that experience mental health.
When I was a child, at just sixteen, the dreams of being a mother were stripped away from me. I received a diagnosis that had the word “syndrome” in it and I felt like a freak.
Everything about my body appeared typical of a teenager going through puberty (and hormonal!) but I didn’t start my period. After examinations and an ultrasound I found out I had a rare 1 in 5000 condition that essentially meant I had an underdeveloped female anatomy. I didn’t have a womb or cervix and my vagina was underdeveloped. I knew I was genetically a female, I had ovaries that produced eggs and XX female chromosomes, but my mind was tangled in self-doubt about the meaning of my existence in this world, as a woman. This was everything I associated with being womanly at that age, and I had missing parts. An empty space that will never experience the feeling of pregnancy.
A= Without MRKH
B & C = different versions of MRKH
MRKH Type 1 affects the reproductive organs only, whereas MRKH Type 2 can cause hearing, skeletal or kidney defects too. More info on MRKH: https://www.mrkh.org.uk/
I went through invasive vaginal dilating treatment to enable me to comfortably have sex, it was never impossible but the term “underdeveloped vagina” was pretty terrifying to hear when most people think your vagina is your vulva- will they think I am a barbie? It varies in each girl, with either narrower or shortened vaginas due to the absent cervix. It was probably the biggest reason it has taken me 11 years to share this part of my story. The word vagina is a taboo in itself, and the fact this seems to be the focal media interest for our condition makes you want to hide away- why is my vagina the click bate to my experience? What about my worth, my mental health and my infertility?
I was taught at school that I will start my period and sex results in babies- and that’s just how it was. Biology did not teach me about my own body. I longed for my red flow of womanhood which I knew would never turn up, and with the word intimacy replaced with the use of clinical tubes (medical dildos) to enable it; I felt like a rare and incomplete anomaly.
My heart ached at my lack of ability to carry out its female duties. And for years, I was stuck in a mind that hated its failed body, so I did not respect it. I didn’t talk about it, I couldn’t bear to let people in to my bare reality. I couldn’t control it and I was powerless.
I mastered an awkward lie and ruffled tampon wrappers in the toilets, I just wanted to be like everyone else – I wanted to join in the big period conversation with my friends. It was a bloody hard job without the blood!
When you trap a voice that’s yearning to be heard it can cause outbursts in other ways. For me this spiraled to panic attacks and getting caught up in blocking it out. I had poor relationships with men, and a poor relationship with myself. What I had was not life threatening, but mental health is just as important as physical health. There is a definite difference between empathy and sympathy, we fear telling those who may not be able to understand. At the same time I have so much gratitude for everything I do have. (Like my own eggs to create my own biological child!)
It was time to stop letting my condition consume me, and to start growing with it. I needed to love myself, love my body inside and out and fight my mind for self-worth. I learned to associate sexual relationships with meaning and enjoy it for what it should be. I travelled alone, found love and built a career. I was lifted by the women and men around me who loved me for me. There was no way I was letting this stop me!
I am teaching myself that it’s ok to expose your vulnerability if it can help you heal how you see yourself. After 11 years I am finally starting to be an advocate for myself and for those who need me. I joined the community of advocated and story tellers, in turn I am supporting girls who are still figuring out how their bodies are making them feel.
The women I’ve met or spoken to are some of 1 in 5000 worldwide. They were also given these letters M-R-K-H to figure out, and they have uplifted me to somewhere I’d never thought I’d be- proud.
I’ve come to terms with my fate of needing the help of a surrogate one day. When the time comes, the journey will take me somewhere emotionally I have not yet been but I’ll embrace it. I am in total admiration of the women who choose to gift their bodies to couples who cannot carry a child themselves. I am in awe of all mothers and what their bodies endure to bring life. It’s amazing- there is no question there. I am happy when I see women carry successful pregnancies, who knows how long they tried for or how anxious they may be. I am sad when I hear of infertility and I feel the pain in every journey.
Saying that, most journeys are suffered in silence. If I can help contribute to breaking the silence I have succeeded!
Are we all stuck on the spectrum of taboo? I sometimes feel like we are drowned in what we don’t talk about. A wave of silent voices and injured minds. Our invisible selves should surface. There is a never-ending list of subjects that are shadowed by stigma, causing mental health which is the biggest on the list. Any condition that profoundly affects how you see yourself can stunt the growth of self-acceptance, stealing the minds ability to flourish at young ages. It's such a shame that human beings are ashamed of their bodies failure to comply with the norm.
There is a realm of reasons people suffer infertility- including men with sperm that doesn’t work causing question to their manhood, and girls with ovarian failure or who have suffered miscarriages. Some of these are problems I’d never even thought about simply because I’d never dream of talking about my non-existent period and absent womb, until now. Opening up is opening your mind.
I believe in the power of mind over matter. My “incomplete matter” won’t define who I am, although it has interrupted my mind in many ways, it has greatly contributed to the strength of it after winning a battle against itself. Being a woman is about your courage, strength, compassion and love.
Learning to be comfortable in your skin is so important, I’m happy in mine. I may be womb-less-period-less but I am no less. I can confidently say I feel like the woman I needed when I was a girl.
More blogs to come on this as MRKH is not the only condition or experience that leaves a human feeling less of who they are in their heart because of their genetic make up. Va Va Womb support you all!