Difference can be a gateway to connection. This video was our inspiration for starting MRKH Connect:
We know from our own experiences that connecting with someone going through the same thing as you is life changing. No girl with MRKH should ever feel like they are alone and we want MRKH Connect to be the platform which helps you to find someone that you can really connect with. Having the courage to find someone with MRKH is hard, finding someone in the same location or the same age is even harder, but by using our map or forum, we hope to make that step easier.
Someone with the empathy, compassion and understanding that only someone who is going through what you are can give. There are people all over the world with MRKH. You just have to find them. MRKH Connect has been created to help you do exactly that – find them, no matter where in the world you are.
Mission & Aims
MRKH Connect was founded in 2014 by Kelly and Janet. Their aim, which remains today was to relieve and promote the relief of those suffering from Mayer Rokitansky Kuster Hauser (MRKH) Syndrome and to provide support both to them and their families.
Even though we are all different with unique experiences no one should feel alone. We aim to create a platform where you can connect with others and openly share thoughts feelings and experiences. To help you to find the confidence to live your life without fear or judgement.
We raise awarenes through fundraising events to allow MRKH Connect and the community to advance public education in MRKH whilst also facilitating connections both virtually and in person for those with MRKH and their families.
We aim to provide relevant resources regardless of where you are in your MRKH journey, from diagnoss to acceptance and beyond, whatever the future holds.
Our Founders' stories
“You have a condition called MRKH.”
I was diagnosed when I was 17, and like most girls, my diagnosis was given after several trips to the doctor’s to find out why I hadn’t started my periods. I had been on and off to the hospital since I was born; I also have scoliosis and a few other medical problems, too. This was just another thing to add to the list that my mum could try and explain to me on the car ride home. Needless to say, it was a lot to explain.
Hearing those 4 letters meant absolutely nothing to me at the time, even after I got back and carried out that nerve-racking google search. I picked up on a few words whilst scanning through but I didn’t care, I was 17 and was definitely not thinking about children any time soon! Little did I know, that wasn’t the half of it. I then went on to find out: I couldn’t have sex without surgery or dilators, I could never carry my own child, and I was 1 in 5,000…. The list went on and on. So I closed the page. And I closed my mind. School started to become very difficult and I found myself skipping lessons just to avoid any questions I didn’t know how to answer. For a while I found myself living a ‘fake life’ and trying to be like any other 17 year old. I lied about period pains, I skirted around the “Do you have a tampon?” question and I nodded along in an attempt to seem normal when girls talked about their sex life or the big family and white picket fence they always seemed to dream about.
After a long time of self-destructive behaviour and trying to push MRKH to the back of my mind, I had an unrelenting desire to know more. I simply couldn’t carry on the way I was going and it was time to make a change. I told myself I had nothing to be ashamed of and MRKH did not define me as a person. That was the stepping stone into the next chapter.
After doing endless amounts of research and longing to connect with women going through similar things, I found a support group online. Someone messaged me saying that she was new to the site and looking for someone to connect with, and the rest is history. After months of talking, weekly Skype’s and a spontaneous trip to America, this girl is now my best friend and co-founder of MRKH Connect. The support from my family and friends is remarkable, and I wouldn’t be where I am today without them. But having Janet, someone who knows exactly what I am going through at any given moment, is life changing.
Being 2 in 5,000, is a lot better than being 1 in 5,000.
As I sift through the memories of what defines me, what I want most to hear, and what MRKH has meant in my life, it is almost impossible to differentiate between the memories I created, lied about, chose to forget or want to remember. I think that is what my story is: a series of double lives I chose to live.
MRKH defined me at a young age. I was diagnosed at 18. I went to the doctor’s for an ultrasound, because I hadn’t started my period. I went through a series of tests and was told the results. Numbed. I locked MRKH so tight in a tiny box far away. I let it glimpse my life when I allowed it to. I needed this control to move on, but I never realized how much it slowly crept its way into all aspects of my life today. I threw myself into my career, my friendships, and my hobbies. I had a series of relationships, all ending before I had to reveal my vulnerabilities, my insecurities. I had convinced myself that as long as I was in control, it was all going to be okay. I let life go on like this for a long time. I graduated college, landed my dream job, and care for a great group of friends, but yet I still felt lost.
I would periodically google MRKH and see what the newest published article was, what yahoo group had formed and what update on Wikipedia there was. I think this was my futile attempt to win myself back. I knew there had to be some answers, and that I wasn’t alone, that there were others in silence living this life. Now at 30, after many years of deliberate google searches, I have been blessed with finding Kelly. I put myself out there looking for another person to talk to, to empathize with, to only have to live one life with, and she responded! We may be years apart in age, but it feels like we have been lifelong friends. It was instantaneous. I can be honest and truthful, without judgment or questioning, and she understands. Kelly has taught me that you don’t have to let MRKH define you. She is open, honest, and fearless about it. She gave me the strength and courage to tell my best friend.
One of the most important people in my life had no idea of this internal struggle for so long, and now she does. This was both exhilarating and terrifying. I can say that those two words have defined my last five months. I am excited that other girls will have the opportunity to share their stories, find support, and change their life. I wish I had that chance and had met Kelly at 18. I am starting to truly live my life now, without fear or judgement, just simply being. I think that MRKH is a daily struggle and it is a constant fight.
But taking on the day as 2 in 5,000 is way better than 1 in 5,000.