My name is Kelsey. I am 24 years old. I have MRKH Syndrome. I am an ambassador for the Sisters for Love MRKH Foundation and after 8 long years of hiding the truth about my diagnosis I am now ready to tell my story.
After two years of telling my mum she was over-reacting in her level of concern for the fact that I hadn’t yet got my period, at the age of 16 I reluctantly went along to the doctor to try and find some answers (or prove to mum that I was simply a ‘late bloomer’). Several blood tests, ultrasounds, laparoscopies and trips to specialists later; I was told I had MRKH Syndrome.
That fateful day that I walked in to the doctor’s surgery, I had no idea that I was about to embark on what is probably going to be one of the most emotionally challenging journeys of my life. I initially didn’t understand what this condition was or the full impact it would have on my life. At such a young age, my first concerns were ‘how am I going to cover up that I don’t get periods’ or ‘will I ever be able to have a real relationship’. The idea of not being able to have a family was one of the last concerns I had at the time. I immediately buried my head in the sand, not wanting to talk to my family or discuss treatment options, preferring to deal with my emotions alone and in silence.
It was 6 months after my diagnosis that I finally decided I was ready to undertake dilation treatment. My mum and I travelled down to Sydney where I spent a week at an inpatient facility. To say that treatment was the most confronting, hardest thing I have ever done to date would be an understatement but once I was discharged I felt stronger, prouder and more determined than ever before and I have not looked back since. I will be forever grateful to my mum, the doctors, the nurses and my MRKH mentor who supported me throughout the process as without them I probably would have quit on the morning of day 1.
The thing about MRKH Syndrome is that it is a cruel mistress. It’s a condition that makes you question who you are as a woman and at points I found myself struggling to identify who I was. It is such a taboo subject that you find yourself suppressing your emotions, not wanting to talk about it for fear of having to explain what MRKH is and deal with the potentially awkward reactions. It also doesn’t ever go away. Whilst I have dealt with the ‘no periods’ and ‘intimacy’ issues that the condition brings, I am now at a point in my life where friends and family are having children, which has emotionally opened a new can of worms. This is something that I cannot fix and is a daily reminder of the fact that I have MRKH. I am incredibly happy for these people that I love so much who are starting a family but I would be lying to say that I am not the slightest bit envious that I will never know what it feels like to carry a child. Each day gets a bit easier but I think this is something that won’t ever go away 100%.
However through these struggles, I am proud to say that I have come so far and that there is a light at the end of the tunnel. Last year I finished my uni degree and landed my dream job in Perth so packed up my life and moved here from Newcastle, NSW. I also have the most incredible fiancé who supports me 110% and accepts every one of my flaws including my MRKH. Together we are optimistic about what the future holds for us and that one day we will have a family.
I view writing my story down on paper as my form of ‘coming out’ with MRKH. I won’t deny that getting to this point hasn’t been easy – it has been one mighty struggle and I have almost got cold feet. However, I hope that by verbalising my journey I will help other women to no longer feel alone in their journey, to know that there are people out there who understand and are here to help. I also now realise that I am the person I am today because of MRKH and there honestly isn’t a thing I would change. I hope that all women with MRKH can one day share this view of themselves too.
Becoming an Ambassador for the Sisters For Love Foundation is incredibly exciting and the foundation presents many new opportunities for women with MRKH Syndrome. I know that together we can achieve great things here in Australia by creating awareness of not only the condition itself but the impact it has on the lives of women and how we can help them through this. I cannot wait to see what the future holds and be a part of it.
I look forward to hearing your story soon!
The Sisters for Love Ambassador Program
We can’t do this alone. We don’t want to do this alone.
By expanding and strengthening the global footprint of advocacy and support within a truly unique and diverse sisterhood of women, the future of MRKH connection and sustainability will continue.
By uniting as one voice, we can aim to make the world that little bit smaller for those looking to be heard. Be a Sisters for Love Ambassador and carve the future for those who will embark on this journey alone and where we will be waiting to meet them.
Ambassador- United Kingdom
Ko Samantha toku ingoa, Ko MRKH toku tātaritanga.
My name is Samantha, my diagnosis is MRKH. To write this, is a relief beyond measure, because it’s no longer lurking in the background, ready to strike just when I thought I had it all together and could take on the world. (Which, by the way, I still can.)
In reality, it has taken me nearly ten years to get to this point, and connect with the amazing network that is the Sisters for Love. Ten years spent blissfully in unknown denial, and a vague acceptance I was happy with myself and my diagnosis. Born and bred in the South of New Zealand, at 17 I accepted the impossible, thickened my skin (a little MRKH joke in there for you), and carried on doing what I was doing.
I began my official adult life with a job in telecommunications design, and after leaving for a three year stint in jaw-dropping Fiordland National Park, I went back. Fast forward in this brief but stunningly interesting story of myself, and I am still there, immensely enjoying what I do, now also a student/amazing expert studying my Diploma in Telecommunications Engineering. Almost a normal life. Almost. Except it’s not.
We have all been given a challenge in our lives. It takes guts, and courage. It’s full of sorrow and joy. I have no doubt you are all compassionate, beautiful women with so much to give this world. MRKH is our journey to share.
Fakataha ko tatou kaha.
As one we are strong.
Ambassador- Western Australia
I was born and raised in Melbourne (Victoria, Australia). I have lived, studied and worked in both Melbourne and the Gold Coast (Queensland, Australia) and I now call the Gold Coast ‘home’. I strongly believe in having and maintaining strong networks of family and friends.
I was diagnosed with uterine agenesis at 21 years of age after a laparoscopy. I was not referred on to counselling nor any further surgeries. I felt alienated after my diagnosis although I did have good support from my best friend. I then got on with life by throwing myself into work and relationships and I put my diagnosis to the back of my mind. After my divorce, I found myself seeking support, just someone to talk to. I searched Facebook and I found other women just like me! And with that, I learnt of the universal and umbrella term, ‘MRKH’.
I have spent the last six years coming to terms with this syndrome. I am now 39 years old and fast approaching 40 years of age. Right now I have good days and some low moments. I know I have a wonderful sisterhood of women all over Australia and indeed the world, in addition to the wonderful and supporting love from my mum. I have met some in person and I highly recommend meeting ‘sisters’ at the organised support groups meetings if you can- I have made some friends for life!
You do not have to go it alone. We are sisters and we can thrive.
My name is Jacqui. I am twenty-one years old and was diagnosed with MRKH 3 years ago. I've just managed to shock myself with the fact that it has only been 3 years since diagnosis, as it has become such a huge part of of the person I am today!
To begin with I let it get to me. I isolated myself, I made myself feel worthless and I told myself what I couldn't have but that's the thing... I put those thoughts into my head. It took hitting rock bottom to realise I was the only person who could stop these feelings. So I found my nurse and we started treatment and I told everyone... And I mean everyone! Telling my story to the media in England was my attempt at ridding any possible taboo and despite them giving the article the ugliest title imagineable, 'The Girl Born Without A Vagina' , actually helped (me). I received messages from girls all over the world!
My travel enthusiasm is what first introduced me to the 'Sisters For Love MRKH Foundation, whilst backpacking around Australia. I even attended my first ever support group meeting and had the opportunity to meet a group of courageous, beautiful and inspiring women. I walked into that meeting feeling good about myself but left feeling inspired. Being given the opportunity to speak at the following meeting as part of a a panel discussion was a feeling I couldn't describe and has left me wanting to do even more for this unique community.
I believe that with humour and support you can get through anything and so here I am, ready to make inappropriate jokes to get you through this.
This is me- I am a sister to three amazing girls and two great men. I am a banker by trade, which is slightly ironic because math was always my worst subject in school. I love to bake, and decorate cakes in fun ways, and I especially enjoy going on spontaneous adventures!
I was diagnosed with MRKH in 2003, when I was 16 years old. Unfortunately, in my case my doctors had no knowledge or experience in dealing with MRKH and did not provide me with any information or tools on what it was or what to do about it. I lived with my MRKH and the feelings of inadequacy it caused me to feel in near silence for ten years, before I finally broke free. At age 25 I finally realized that I am beautiful just as I am, and that not having most of my reproductive organs does not make me any less of a person. And I discovered that I am not alone.
With this new outlook on MRKH and life, I ventured on an adventure of self-discovery while doing my best to raise awareness for the condition and reach out to women like me. I was featured on two separate episodes of the daytime television show “The Doctors” in 2014, and write a weekly blog where I share the most intimate feelings and experiences that life with MRKH has provided me. Through social media, I have been able to connect with MRKH women all over the world. I have a passion to reach out to other women with MRKH with the hope that no woman will have to go through the MRKH journey alone, as I did.
I am super happy to be a part of the Australian Sisters for Love Ambassador Program – to connect our countries and bridge the gap between this unique sisterhood of women is truly changing lives, including my own.
Ambassador- United States
Ambassador- New Zealand
My name is Jodie Coughlan and I am a 44 year old wife, daughter, sister, aunty, cousin, niece, granddaughter, friend, social worker, teacher and Sisters for Love Ambassador and I have MRKH. No wonder I sometimes feel exhausted! I believe that no one role or label should ever define me and that I am indeed many things grand and wonderful and that, although life has thrown me some curveballs, I am and will always remain the driver of my destiny.
When I was diagnosed in 1987, there was no name and I felt completely alone and believed that no one in the world was like me. This did not make me feel special or unique but instead it made me feel odd and abnormal and I endeavoured to hide my condition because of feelings of shame. Now I am older, wiser and more informed and I look back on my younger self with empathy, compassion and a slight urge to slap myself!
I got married when I was 24 and after 20 years miraculously we are still together! In our journey as a couple we investigated various options for parenthood and were foster carers for a while. What we discovered along the way was just how much fun life can be as a couple without children and we live and appreciate every day of this. We often breathe out slowly with gratitude after leaving the homes of friends or family with kids and on entering the quiet sanctuary of our home we are genuinely thankful for it.
When I first met other women with MRKH I was astounded by the grief they felt about not being able to be a mum and this, in some ways, isolated me even more for a while.
I failed to feel this level of grief and wondered again what was wrong with me. Now I realize nothing, none of us are all the same, what we want from life is wide and vast.With age comes wisdom and I love nothing more than to impart mine. I want to share my story to inspire others with MRKH to learn to love and accept themselves and to seek whatever support they need to do this. I want women with MRKH to know that they are not alone, that the condition need not define who they are and that life can be good, if not great, regardless.