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What is MRKH? Ellamae Fullalove’s story

MKRH is a condition that affects 1 in 5000 women, but chances are you’re wondering – What is MRKH? To raise awareness of MRKH and support those living with it, Ellamae Fullalove has been sharing her story and is growing a taboo-smashing online community. Here, Ellamae tells us about her diagnosis with MRKH and gives advice and support for anyone who has MRKH.

“The only time I attempted to insert a tampon into my vagina was at 15 years old. I wasn’t bleeding, I wanted to see how it felt because my friends spoke about them all the time. I can confirm, it didn’t quite work. Sometimes I would steal a few from my mum’s tampon stash, bring them to school, and pretend to use them. I liked to whip one out of my bag if any of my friends needed one during their monthly bleed. A gesture to proudly help as all the girls did. My red flow of womanhood did not show up though. I’m 28 now- and I have never had a period and never will.

At 16 years old pretending wasn’t cutting it anymore. The sex I tried to have resulted in pain and left me with the only vaginal blood I have ever experienced. I went to my GP who then referred me to Queen Charlotte’s Hospital in London. The team there were and are amazingly supportive but I would rather my body was not going through awkward examinations and scans. In the waiting room for an ultra-sound, there were pregnant women cradling their precious bumps, ready to take home their first scan. Bloated with my urine, I liked to think that the others thought I too was pregnant. Deep down I knew that would never be me. My desperate Google searches to understand my body led me to something I was dreading. Emptiness.

MRKH Diagnosis

Four letters then entered my life that would leave me grieving the body I was taught that I had. The body I had lived in for 16 years. The sex-having-menstruating-baby-making body that was the only type of a woman’s body in the curriculum. I had no reason to otherwise think there could be a different type of body.

My body was that of 1 in 5000 female babies worldwide born with Mayer Rokitansky Kuster Hauser Syndrome- M-R-K-H. MRKH is a congenital condition with varying anatomies in each person. Typical description for type 1 is “women born with an underdeveloped reproductive system”. Meaning functioning ovaries and 46 XX chromosomes but with no uterus or uterus remnants, an absent vaginal canal, or an underdeveloped vagina, no cervix, and no period blood. MRKH type 2 has further physical variations that could affect kidney development, skeletal structure, or hearing.

Challenges of accepting my body

At 16 my vagina was so underdeveloped that penetration was near impossible – hence why my tampon attempt didn’t end well. Doctors told me, though, that the attempts had “helped” it naturally stretch but to finish my ‘self-creating vagina’ project I could use medical dilators to stretch it over time. The first time I saw these clinical dildos I was sitting with my Dad. I had found out that I would never carry my own child, and that my body was unfinished. The best way I could describe how I felt was grief, emptiness, and shame.

My body was no longer my home and my confidence in my existence in this world as a woman was now lost to feeling unworthy. Less. Womb-less. Period-less. Vagina-less. MRKH was my big secret. I could not bear to let people into my reality. For years, I would only disclose this to people when I was drunk in a teary mess. All in the hope that no-one would remember or ask more questions in the morning. I would give a fumbled description of my womb being unable to carry a child, but I could never bring myself to say the words “Born without.” These words seemed too crippling to my womanhood. My mental health and self-destructive lifestyle had complex layers that needed time to grow and heal. And it did – I did heal.

Living with MRKH

Disclosure became a positive and liberating experience. Today I continue to grow with MRKH, and I advocate for the four letters that once threatened my worth. I started blogging about my journey on Instagram. Then launched a private FB group to plan social events in the UK.

In my new-found mission, I came across other powerhouse MRKH advocates who have all inspired me. My life found a new purpose – to shake stigma and be the woman I needed when I was a girl. The others I have met are also 1 in 5000 each with their own unique story. Life-long friendships have blossomed so beautifully with these people and I don’t know how I went through life without them. The fire in my belly now motivates me to ensure no-one ever feels alone. This community is fierce. We all connect globally which was soaring during UK lockdown with virtual workshops and global events.

I am also now a self-confessed ‘stigma shaker’, encouraging the world to talk loud and proud about our experiences. This includes all our body parts and the things they have been through. The last couple of years have revolved around growing my confidence in telling my story. This means being comfortable telling the world about my vagina! To be honest, as a full-time employee of a Housing Association I’m still sometimes on edge about my bare-faced reality being online. Although I did do a blog at work which was the most terrifying thing I had ever done!

My mission to raise awareness

My mission is wider than MRKH. Being open with my story allows me to open my heart and mind to so many other people. Individuals who are battling society’s idea of ‘normal.’ Bearing or not bearing a child has no bearing on worth and neither does our genetic make-up. We are all stuck between the four walls of stigma, shame, pressure, and guilt. I broke free and I want to help others do the same.

My passion to knock these walls down led to Va Va Womb being born! Va Va Womb is an anti-shaming, stigma-shaking community of storytellers and change-makers. I launched an online store, blog, and I host events that are loud, creative, and proud to raise awareness of hush-hush topics. We reinvest all proceeds into our on-going cause. Va Va Womb celebrates the conversation surrounding health and happiness. What we talk about is limitless, in the same way, that we’re all limitless. Your voice matters and you are enough.

I am excited to be raising awareness of MRKH in the world of period brands. We are often forgotten in a similar way to the trans or non-binary community. I too feel like I am part of the community who do not have typical bodies of their gender. Not all people who bleed are women and not all women have periods. It’s also important to note that not all people with MRKH identify as a woman.

MRKH Advice: Tracking ovulation

As people with MRKH generally ovulate, the eggs disappear into our pelvic cavity each month. So, we may still get symptoms but no period bleed. I have never tracked my own ovulation, but I asked around in the community and a few friends talked about tracking theirs. For example, Ellie, a 25-year-old MRKH warrior, shared her experience with me:

“The first time I tracked my ovulation it felt like I was finally in control of my own body. I finally felt like I knew what my body was doing even though I couldn’t see it happening. I have always used the ClearBlue Fertility Monitor, it’s around £80 for the machine and £20 for the test sticks, which I buy monthly. So, it is quite expensive but for me, it’s worth it and it has lasted me years. I love how I can look back on the months of my previous cycles. I do notice symptoms, including ovulation pain nearly every month and then I experience the general period symptoms like a stomach ache. There are no resources anywhere for women who don’t bleed and so I had to source information for myself.”

I find that those with MRKH are less likely to seek help or advice in tracking ovulation. This could be because not having a period can make you shy away from these conversations. In fact, a lot of the symptoms of ovulation for MRKHers are physically identifiable, the same as any other woman or person who menstruates. The only thing we won’t have is the cervical discharge or period blood. There are many ways we can track so I want to contribute to empowering our community in doing so.

Thanks so much to Ellamae Fullalove for sharing her story and for doing amazing work raising awareness of MRKH and supporting those living with it. To find out more about MRKH and find out more about Ella, find her on Instagram here. For stigma and shame-smashing talk, check out the Va Va Womb Insta page.

For more real awareness stories, take a look at our blog by Tanya Barad talking about living with Endometriosis.

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