MRKH: a (half) marathon, not a sprint.

Hi, I’m Susan. I’m Irish, live in London, currently doing a PhD and training to be a health psychologist. I write, I run, I travel, I dabble in make-up artistry, I wine & dine, and I’m lucky enough to have a wonderful bunch of people in my life. I also happen to have Mayer-Rokitansky-Küster-Hauser Syndrome, or MRKH. MRKH is a congenital anomaly of the female reproductive tract. Women with MRKH are born with normal ovaries and fallopian tubes, but with an absent or underdeveloped uterus, cervix and vagina. Women with MRKH cannot carry a pregnancy, but if they choose to, can have treatment to create a “normal” length vagina by stretching the tissue that is already there but shorter than typical length. Ten years post diagnosis, having facilitated support groups and spoken at conferences, writing openly about it just feels like the right thing to do. To the 1 in 5,000 women with MRKH, I hope you find something helpful in my writing. To everyone else, I hope there’s something in it for you too. 

To mark the 10th “anniversary” of my diagnosis, I’m going to run a half-marathon for the Center for Young Women’s Health at Boston Children’s Hospital; a place that’s become a big part of my life over the past 10 years. In a nutshell, they provide excellent online resources, host monthly online chats and annual conferences for young women (age ≤25) and their families, and their healthcare is second to none. So to kick-start this blog, I thought it might be a good idea to publish the talk I gave at their 11th annual MRKH conference earlier this year. It gives an overview of my experience of MRKH, and perhaps offers some insight into why I’ve chosen to run for CYWH. 

MRKH Conference Talk, Boston Children’s Hospital, March 2016

I was diagnosed with MRKH 9 ½ years ago, and I’ve been coming to this conference almost ever since. As I thought about what to say here today, I spent some time reflecting on how I felt the first time I came here; how it felt to walk through those revolving doors that you all walked through this morning, and to sit here in this auditorium just as you are doing now. I felt scared, lonely, exposed and like I wanted to be anywhere but here. I distinctly remember two conversations I had with my Mam that day. The first happened just outside the hospital as she encouraged me to walk through the door. I was acutely aware that when I did, it would be the first time that I would be in a room full of people who would know that I had MRKH, and that thought seemed to be enough to glue my feet to the ground. She looked at me and said “I feel like I’m torturing you”, to which I may have responded “you are”. The second conversation happened just at the back of this room where we sat that first year, as we listened to a woman with MRKH share her story. My Mam leaned in and whispered to me “you never know Sue – that might be you one day”, to which I responded emphatically “not in a million years”. As it turned out, her encouragement to get me through the door that day was life changing, and it took a lot less than a million years for me to feel brave enough to stand up here and share my story. But although I have grown to love it, coming here for the first time was not an easy thing to do. It took a lot of courage, just as I imagine it has taken many of you a lot of courage to be here this morning. So I’d like to welcome you all – both those of you who I’ve had the privilege of getting to know over the years, and those of you who are here for the first time and might be feeling a bit lost, lonely, nervous or uncertain about what to expect. Or perhaps you might be feeling hopeful, or relieved, or comforted by the knowledge that there is a place like this for you to turn.

Since coming here for the first time, I’ve met a lot of women with MRKH, and one thing that always strikes me is that MRKH doesn’t target any particular type of person. We are all coming from different backgrounds, cultures, beliefs, perspectives and personal experiences, and each of us has a story to tell. We are also coming from different stages of MRKH in our lives, so we may be trying to navigate our way through different challenges at the moment. However, whether you’re here because you’re a parent trying to support your daughter, a sibling trying to support your sister, a partner trying to support a partner, or a young woman trying to find support for yourself, we are all here because we are trying; trying to seek out information that will help us to understand a condition that is not well-known, trying to find support for ourselves at a time when we may feel very isolated, and trying to offer support to each other by sharing our own experiences, and listening to those of others. So I hope that by the end of today, you leave feeling informed and supported, and that perhaps you may even find it more difficult to walk back out through those revolving doors than you did to walk in.

So to tell you the story of how a girl from Ireland ended up speaking at a conference in Boston, I’ll take you from my diagnosis at 17 right up to now. As I sat outside the doctor’s office awaiting the results of my MRI scan, I listened to comforting music on my iPod to help me to stay calm. I promised myself that no matter what the outcome, I would keep it together and stay strong. But when my name was finally called and the music stopped playing, I remember feeling like I was tensing every muscle in my body to try to hold myself together. And when she looked me in the eye and said “your womb didn’t develop darling”, I fell apart. I was a child being told that I would never have a child. I couldn’t breathe, the room started spinning, and I sobbed. I felt suffocated by the realisation that I would never again know what if felt like to not have MRKH. From that day onwards, the world looked different to me. It almost felt like I was living in a parallel world where I could see everyone else, but nobody could see me. I lost a sense of who I was, and felt like I was defined by my diagnosis. MRKH became the first thing I thought about when I woke up in the morning, the last thing I thought about before I went to sleep at night, and the only thing I knew how to think about during every waking moment in between.

I will always remember something that my Dad’s aunt Jennie, one of the dearest people in the world to me, said to my parents when she learned of my diagnosis. She said that she had noticed a sadness in me, and that she could see that my “little sparkle” was gone. It broke my heart, because I so desperately wanted to be that person with the sparkle in my eye, both for myself and for those people who cared about me so much, but I didn’t know how to re-engage with a world that I no longer knew how to be in, and I couldn’t find a way to re-connect with the person that I used to be. My diagnosis didn’t come with an instruction manual on how to cope. The only information I got from my doctor was a post-it note, and on it written, “MRKH”.

So in the absence of any helpful information, my Mam did what she always does and advocated for me at a time when I couldn’t advocate for myself. She searched the internet for information and found a hospital in the UK with experience in treating women with MRKH. She pleaded with me to go and meet the team there, and I reluctantly agreed. At my first appointment, they confirmed my diagnosis and explained what it meant: I was born without a womb and cervix, and there was nothing that they could do about that. And I was also born without a vagina, but if I wanted to have treatment, there were options available to me – I could have surgery or use dilators. Although I already understood my diagnosis, hearing it out loud again felt like being kicked in the stomach. But without giving it much thought, I decided to start treatment using dilators – at the time, it felt like there were just so many aspects of MRKH that I couldn’t control, and this felt like a problem that had a solution. So I spent a few days in hospital and continued treatment at home three times a day, every day for three months. It was one of the most physically and emotionally demanding experiences that I’ve ever faced, but I just wanted to get it over with. And at the end of three months, they told me that I was done and that I would never have to use a dilator again. So I went home and tried to erase it from my memory.

But when I attended the conference here for the first and second time, I realised that I had been given the wrong follow-up advice. I heard the consultant say that when you’re finished with treatment, you still need to continue to use a dilator about once a week. So two years after finishing treatment, I came here for a second opinion and it confirmed my fears – if I wanted to have treatment, I would have to do it all over again. I was devastated – I was so angry and frustrated and upset that I had gone through so much for nothing. MRKH had taken me to three different doctors, in three different hospitals, in three different countries. But they say that the third time’s a charm, and in this case, it most certainly was. I often feel like whenever I have an ‘MRKH-related’ experience, I leave a piece of myself wherever it happened, and I carry a piece of that place with me. Sometimes I wish I could rescue myself from those places that didn’t treat me with the care that I deserved, but when I think of the piece of myself that is here, I feel safe and supported. Here, I was treated with kindness, compassion and respect. They saw me as a person first and a patient second and I knew that I had the power to make a decision that I was comfortable with. So although it still wasn’t easy, when I decided to go through treatment for the second time, I could trust that I had been cared for properly.

After that, I started to get more involved in these conferences by co-facilitating support groups and talking to young women with MRKH on the online chats that are hosted here. The experience I have here on this day every year is always incredibly emotional and so cathartic. This day is special to all of us for different reasons. For me, coming here every year has enabled me to give MRKH some sort of purpose in my life – to share my experiences and viewpoints in the hope that they may resonate with some other people here. It has given me the opportunity to meet other inspiring women with MRKH, whom I respect and admire so much. It is also perhaps part of the reason I decided to pursue a career in health psychology, so it’s safe to say it’s had a big impact on my life. But as wonderful as it is to have this day, it’s always hard to go back home and try to process the intense emotion that you feel here. And then you have the other 364 days of the year to live your life.

For me, MRKH didn’t stop me doing anything I wanted to do during those other 364 days of the year. I went to college and got my degree, I worked at the same time, I played hockey, I had a great social life, and I had the most wonderful friends and family that anyone could ask for. So after finishing treatment and attending the conferences, as far as I was concerned, I was fine. I had overcome MRKH and I felt invincible. I was so strong that there was nothing that could get in my way. But sometimes when you go through a traumatic experience, it can feel like you’re hurtling through it at such speed that you don’t really get a lot of time to just pause, and breathe, and process what you’ve been through. And then when you finally do get a chance to breathe, it can all come crashing down on top of you.

Three years ago, I had just finished my undergraduate degree, had taken a year off studying, and worked part-time. So for the first time in a long time, I had a lot of head space think about all that had happened to me since the day I was diagnosed with MRKH six years previously. I began to relive all of those experiences that caused me so much pain. Unwelcome flashbacks flickered through my mind day in and day out, and that suffocating, panicky feeling that I once knew so well reintroduced itself to me. At a time when I thought that I had “overcome” or “accepted” MRKH, it started to intrude into my life again and it caught me off guard. It scared me, because I once again had that fear that I was losing to it and that I wasn’t strong enough to cope. After six years, it felt like I was waking up from a trance and frantically trying to grasp on to some sort of explanation for why this happened to me, and trying to make sense of something that made no sense to me at all.

I had always prided myself on the strength I showed in dealing with MRKH, and I was sometimes reluctant to seek help when I may have needed it. But when I started to feel those feelings again, I decided to take on board a piece of advice my Dad had offered me when I was first diagnosed: “Please don’t let your inner strength become as much a burden as it is a help”. So I booked an appointment with a therapist. I decided that I owed it to myself to find a space to talk through my experience of living with MRKH and to give myself the time I needed to try to understand it and find a place for it in my life. And although it was deeply challenging at times, that decision turned out to be one of the most rewarding, and life-changing decisions I have ever made.

In the beginning it was difficult to allow another person to delve so deeply into an experience that felt so private and personal to me. It was hard for me to allow myself to feel vulnerable and to talk about the parts of MRKH that made me feel so unsettled and upset. But as the weeks went on, I found myself talking more openly and honestly about how I felt about MRKH than ever before. And in doing so, I gradually teased apart the knots that MRKH had tied so tightly in my head. I have learned so much about myself since then and I have gained an insight into myself that I know will be invaluable to me for the rest of my life. I have learned that sometimes, it is okay not to be okay. I have learned that it is imperative to honour the sadness, the grief and the loss that I have felt since being diagnosed with MRKH. But perhaps most importantly, in giving myself permission to honour my experience, and in giving myself the time and space I needed to find meaning in that experience, I have given myself the freedom to honour my life; to give all of myself that I have to give, and to embrace all of the opportunities that life has to offer.

I know myself well enough to know that there will be times when MRKH is tough, and upsetting, and pushes me to my limits. But I also know myself well enough to know that during those times, I will have a greater capacity to cope because of all I have achieved in the past 9 ½ years. I trust in myself enough to know that if there comes a time when I want to have a child, or indeed do anything that I feel I can’t do because of MRKH, I will make those things my priority, and do everything in my power to make sure that they happen. So in moving through your life with MRKH, please give yourself permission to honour your sadness, your grief and your loss. But also give yourself the freedom to honour your life; give all of yourself that you have to give, and embrace all of the beauty that life has to offer. And remember that although the meanings that we all find in MRKH may differ, each and every person’s experience is just as important, just as true and just as valid.

Thank you for reading.

If you’d like to sponsor me for the half-marathon, you can do so here. Alternatively, please ask any doctors/gynaecologists you know if they’ve heard of MRKH, and perhaps enlighten them if they haven’t. Thank you.

9 thoughts on “MRKH: a (half) marathon, not a sprint.

  1. Susan, I am in awe at your bravery, your honestly and your strength. I clung to ever word from the first to the last. I had no idea the struggles you have faced, or possibly have yet to face, but rest assured your determination will see you through. Stay shining as a beacon to help lead others along their way. You are amazing xx


  2. Susan I’m reading this in my local cafe with tears streaming down my face. I can’t wait to meet in Sydney at the end of the year, the incredible young woman behind these powerful words and her amazing parents in Ireland at Christmas. Love and hugs Lee Willis (Sam’s mum) XXXOOOXXX


    1. Thank you so much lee! I really appreciate your lovely message. I cannot wait to meet you in Sydney! Can’t even tell you how excited I am! Thanks in advance for putting us up 😊 And thank you so much for your donation xx


  3. I have always of you as a very strong girl Susan but after reading your blog I have to tell you how impressed I am by your bravery and determination, you are a very special person and always a joy to meet xx


  4. I have always thought you were a very strong person Susan but after reading your blog I am amazed at how great you are, any time our paths cross I am impressed with your outlook in life and your obvious determination to live life to the full, truly a wonderful girl xx


    1. Thank you for such a lovely note Patricia, and thanks so much for donating. You’re so kind. I am en route to Portugal as we speak. Hope to catch you for dinner or a cocktail some night if you’re still there! 😊 x


  5. Susan this makes for an enlightening & inspirational read. Congrats on completing what must have been a life changing presentation for some of those in attendance at the conference, there’s not many people who can say they have made such an impact on the lives of others, you should be immensely proud of all you have achieved. Very best of luck with the mini-marathon! I will be sure to donate to this great cause. x


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