Powerless to empowered

Since being diagnosed with MRKH at 17, I have had some experiences of medical care that I remember for some not so pleasant reasons. I have also had the privilege of accessing medical care that I remember for all the right reasons; care that was driven by choice, collaboration, compassion, and making sure that I felt in control of what was happening to my body.

I have wanted to write about the impact of the former for some time, but haven’t quite found the right words until now. Whether you’re a person with MRKH, a medical professional, family member, friend or anyone else who’s been kind enough to read this, I hope you find something valuable in these words.


Knock on the door. Dread.
I stood resigned, as I undressed
beside the hospital bed.
I lay exposed and uncovered,
eyes streaming with tears.
‘Why are you crying?
There’s nothing to fear.’

‘It’s really not that bad…
just a bit of discomfort.
When you have a vagina,
it will all be worth it.’

She put her hand on my belly,
until my breathing steadied.
When I’d worn myself out,
she assumed I was ready.

She showed me the dilators.
White. Cold. Clinical.

It was only three days,
but the memories have stayed.
As vivid as a movie,
the scenes still replay:

‘Empty your bladder, strip,
lie down, legs spread,
feet to the sides of the bed.
Adjust your hips.
Guide the dilator along the lips.
Get the angle right.
Push harder, with all your might.’

Sometimes I eased my grip
to try to lessen the pain.
‘If you don’t use enough pressure,
you won’t see any gain.’

So, she would take over.
Anchor herself with one hand on my shoulder.
‘Relax. Stay calm. Deep breaths.’ she would say,
as she harnessed her strength to force it in all the way.

‘Good girl.’

‘Good girl.’

My breath stopped.

She didn’t.

After each session,
they would marvel at my progress.
Their hands examining my body
like I was just an object.

I can still feel their fingers
rooting around inside.
I told myself it was medical,
so it was justified.

I never asked them to stop.
I didn’t think I had a choice.
Yet somehow, I blamed myself
for not using my voice.

I surrendered my body.
I gave them permission.
If I could go back now,
I’d make a different decision.


I was young.

I was vulnerable.

I was powerless.

A ‘treatment’ based on what a man’s penis would measure.
Never even a mention of my sexual pleasure.
Just misguided words of wisdom they chose to impart:
‘Sex won’t feel like a dilator. No man is that hard.’

‘Men won’t know the difference
once you’re fully dilated.’
Like conforming to their standards
was something to be celebrated.

‘You’ll feel more comfortable in your
body and build your confidence.’
But disconnecting from my body
was my strongest defence.

Three times a day,
I put myself in pain.
Trying to push away the
embarrassment and shame.

A constant battle between
my mind and my body.
Severing their connection.
Becoming disembodied.

First, it was done to me.
Then, with their voices in my head,
I learned to do it to myself.

Sex, dilators and pain
became confused and conflated,
I couldn’t break associations
that felt so strongly integrated.

When I found words to talk about it,
I began to realise
That for so long
my body had been medicalised.

I believed I had to fix myself
to be accepted by another,
So afraid of what they’d think
if the truth was uncovered.

While I focused on preparing
my body for someone else,
I lost sight of what it meant
to feel comfortable in myself.

But, now I’m challenging ideas
of how my body should be,
Ideas so ingrained in society.

Tuning in to what I need
to be able to feel free,
Realising it may help
to not hide that part of me.

Working with my body
in a different way,
Taking back the power
to decide what’s okay.

Learning to turn down
the volume of her voice,
Reminding myself
that I do have a choice.

Swapping the clinical dilators…
trading white for pink.
Each small empowering choice
shifting the way that I think.

Opening my mind to what other women have to say,
Resisting the urge to shut down or run away.

Choosing not to distract myself
in the midst of dilation.
Instead, paying attention
to the sensations.

Taking it slowly, gently,
at my own pace.
Allowing the connection with my
body to regenerate.

Still sitting with not knowing
what the future has in store,
But as I give myself
the freedom to explore,
Discovering my body
as something to enjoy
not endure.

No longer powerless.

No longer choiceless.

No longer voiceless.

Reflections on connections.

It’s been 14 years since the day I was diagnosed with MRKH, and I could still recite that day to you moment by moment… but that might take a while, so I’ll start by sharing just one very vivid memory I have of myself on that day. I was standing on a busy, bustling street in Dublin, Ireland, where I’m from. I remember seeing all these people and cars rushing past me: a woman in a suit walking with purpose like she was going somewhere important, lots of people moving at pace looking like they had somewhere to be, a mother zipping up her child’s coat as they stepped off a bus and got ready to embark on their day, a group of friends just casually walking, chatting and laughing as if they didn’t have a care in the world. So many little moments that showed me the stark reality that other people’s worlds had kept on turning while mine had stopped.

It was like I had spent 17 years of my life weaving this web of intricate connections with things that mattered to me: family, friends, people I cared about, school, hobbies, interests, hopes and dreams for the future. Then one moment in a doctor’s office, being told that my body was not what I thought it was, shone a spotlight on the fragility and delicate nature of that web. It only took four letters to dismantle the web; MRKH destroyed it as quickly as and easily as you would brush away a spider’s web in your house.

One sentence was all it took to disconnect me from the world, the people around me, my body, myself. If you’ve every watched a spider spin a web, it’s fascinating to see how fast they can create such a beautiful structure within moments, like they know exactly every step to take to get them to where they want to be. But I didn’t even know how to take the first step; I didn’t know where to start. I could see people, but I couldn’t reach them and I didn’t know how to let them reach me. I knew what I wanted (or at least I thought I knew what I wanted), but I didn’t know how to get there. All I could think about was finding a way to make it go away so that I could go back to being the person that I was before, to being like those people I saw chatting and laughing on the street, without a care in the world.

Despite my greatest efforts to get a refund on my ticket to the MRKH club (excuse me… I think you’ve given me the wrong one… you see, I was supposed to be in the period club), I never did find a magic wand to wave and make it go away. So then I tried to find my way through it; almost like finding your way through a maze and coming out the other side, not quite knowing how you got there, but not really caring how you got there because you’ve got this new freedom where you can leave the maze behind you, never look back, and go and do whatever your heart desires.

But then while I was trying to find my way out of the maze, I met all these other people who were in the maze too. Some of them had been there for a while, and others, like me, had just gotten their ticket. We were all given our ticket to the maze in a similar way – sitting in a doctor’s office being told that our bodies were not what we thought they were, but we had all come to the maze from different places: different parts of the world, different cultures, different belief systems, different family backgrounds and life circumstances. So being in the maze meant something different to all of us; it impacted our lives in different ways, and we all had our own ideas about the paths we needed to go down to find our way through. But we all had one thing in common; we were going to be in the maze for a while, and none of us knew about the shortcuts to get out. We all tried to get through it in the best way that we knew how, and while we often chose different routes, we also crossed paths and learned from each other along the way.

Lots of us started by facing into the same path: the one that was filled with grief, loss and sadness. At first I was afraid to take a step onto that path, so instead I searched endlessly for the escape route – the secret passage to joy. When I had exhausted the paths that all led me back to the same spot, I started to learn that the only way to re-connect with happiness, excitement, joy, was to allow myself to feel pain, and to realise that one didn’t cancel out the other; that life is filled with moments of pain, laughter, joy, sadness, feeling connected and disconnected all at the same time. When I gave myself permission to step onto the path of grief and loss and just sit there for a while, to get acquainted with my surroundings and savour the scenery, all of these other paths started to appear. So I began to explore them, not quite knowing where they would lead, where I would end up, who I would meet along the way, or if I would like the view. I was scared, but I had explored every inch of the pain path, so I decided to venture out of it and try some of the new ones anyway, knowing that I could come back to that place I knew so well if I needed. As I meandered through the maze, I found myself circling the same spots, got lost a few times, took some wrong turns and some right ones, saw some beautifully unexpected scences and made some discoveries for myself. But my discoveries alone weren’t enough to find the way, and for a while I was afraid to ask for directions; I didn’t have the words to explain how I got here or where I needed to be. I dodged as many people as I could… I didn’t think they had much to offer. After bumping into more and more people over time, I took a risk started to stop and chat, not quite expecting the guidance and wisdom they imparted.

Before I felt brave enough to speak to anyone with MRKH, I saw someone walking towards me; a nurse, called Phaedra. I think she must have noticed I was lost. She approached me with such warmth and kindness, sat down beside me and told me that I wasn’t alone. I can’t say that I fully believed her at the time, but I think there was a little part of me that listened, and opened myself up to the possibility of what other people had to share.

Then I met a woman called Esther. I heard whispers that she was the first person ever to advocate for MRKH, and I remember thinking that I could never do that, I would never do that. I listened intently as she reflected on a piece she wrote, aptly named ‘The Missing Vagina Monologue’. She spoke with such passion about learning to feel comfortable in the body she had rather than the body people thought she should have. She challenged my idea of what I thought my body had to be, and taught me that learning to live with MRKH was not about fixing my body, but about finding a way to feel comfortable within it.

Then I met this doctor, Dr Laufer, who echoed her words. He was the first doctor I met who highlighted to me that MRKH was just one part of me, and that I could make a decision about the steps I wanted to take that fit best with my life. He had this way of making me feel safe. He told me that choices about my care were mine and mine alone, and that it was okay to take it at my own pace, or not to do anything at all. We all make different choices about how we want our bodies to be, and whatever we decide to do is okay.

Then I met Amy, Ally, Jaclyn and other people who spoke openly about MRKH. They taught me that I didn’t have to hide MRKH if I didn’t want to, that I could be part of a ripple effect of providing support to people with MRKH around the world; I could advocate, I could build connections with doctors and nurses, I could be the person to build the support network in Ireland that I didn’t have when I was diagnosed.

There was this ray of sunshine called Sunni, and she taught me how to laugh about MRKH (and trust me, I really didn’t find it funny… at all). She had this way of bringing a lightness to something that felt so dark. Our many conversations together also taught me that not everyone knows how to respond when you tell them about MRKH, but it’s okay to tell people what you need from them, to allow them to get it wrong sometimes, to encourage them to ask questions, and to realise that they might even surprise you by being open to it in a way you didn’t expect.

There was a person called Erinn, who is a therapist like me, and we had a wealth of rich and interesting conversations about marrying together the personal and professional; how our professional experiences met our personal insights and vice versa. We talked a lot about taking care of ourselves and each other, tuning in to how we feel when we’re walking through different parts of the maze, and knowing that it’s okay to sit down and rest for a while.

Later I met Wani, Badia, Hasna and Aysha, who taught me about what it felt like to have MRKH in different cultures, and how we need to do more to support people with MRKH on a global scale. They taught me to listen and learn from experiences that were different to my own.

And then I met Charlie, who worked tirelessly to make it possible to connect at a time when we all felt disconnected.

As well as the people who spoke openly about MRKH, I also saw so many others (who I won’t name in case they don’t want to be named), who quietly connected with each other, offering a listening ear, a comforting word, a hand to hold. I watched the web of connections build in person and online, and was moved by how committed people were to offering support, to approach another with warmth and kindness and let them know they’re not alone. I saw such beauty in this community of people that I once didn’t want to be part of. I saw people connect through MRKH, and I also saw people doing wonderful things that brought meaning to their lives that had nothing to do with MRKH.

So when I first got my ticket to the maze, and realised I couldn’t get a refund, I wanted to run as fast as I could through it to find my way out. But 14 years later, I think I’m still in the maze, and I imagine that I will be for the rest of my life. Somehow it doesn’t feel so scary anymore… if 2020 has taught us anything, it’s that we don’t always know what’s coming around the corner. And sometimes that is frightening, but other times it brings exciting opportunities: to explore paths in your life that you didn’t know mattered to you, to connect with special people who will teach you so much about yourself and the world that you wouldn’t have known without getting the ticket you were given (even if it did look like the wrong one).

You may be reading this from the beginning of the maze, searching for the escape route or feeling afraid to step onto one of the paths. Or perhaps you have been here for a while, and you don’t quite know which way to go next. Wherever you are, you may see some people speaking loudly and some gathering quietly, some people running and some walking slowly, lots of people looking lost or standing still. No matter where you are, you’ll see people holding out their hands, and they’ll stay there until you’re ready to take them; they’ll sit with you where you are, and perhaps even show you a place you didn’t know existed. While you’re navigating your way around, there’ll be some footprints there that you can follow, but don’t be afraid to make some of your own too. Take your time exploring different paths to find out where you want to go. While the paths we take will all be different, taking someone’s hand or reaching out yours might just make the walk a little less lonely.

A letter to my 17-year-old self.

Every year when I attend Boston Children’s Hospital’s annual MRKH conference, I’m met with the familiar, vivid memory of how I felt the first time I attended. And every year when I speak at the conference, I suppose I try to provide comfort to people who may be in the same place that I was in that first time. As I sat down to write my talk this year, I reflected on how the person I am really speaking to is myself at 17. So, this year I wrote her a letter to tell her some of the things I would want her to know.

Dear Susan,

I can still see you standing frozen outside this hospital, wondering how, when or if you’re going to find the courage to put one foot in front of the other and walk through the door. As you stand there choking back your tears, the grief and the loss that you have felt since your diagnosis feel so visceral. You haven’t told many people about MRKH, because you just don’t have the words to speak about it and you’re so afraid of what other people might think or say. So being far from home in a place where you can’t hide from MRKH makes you feel so vulnerable and exposed. You haven’t stepped foot inside a hospital since the day you were told about MRKH, so as you stand outside this hospital confronted by a day filled with MRKH, all of those memories come flooding back and you feel so frightened of what is to come.

It hasn’t been too long since you sat in the doctor’s office back home in Ireland, being told that your body was not what you thought it was. You sobbed for the future that you longed for but couldn’t have. It was hard to breathe easily, knowing that you could never get back the life you had just a few days before. I know it felt like a light went out inside you; you forgot how to laugh, and you no longer knew what it meant to feel joy. When your head hit the pillow each night, you felt so incredibly lonely and like nobody else could ever understand. How could they understand when you couldn’t make sense of it yourself?

As I see you standing there, with all those memories flashing through your head, paralysed by anxiety, there are things that I desperately want to say to you. I want to tell you that I’m sorry this happened to you. You are dealing with something that is far beyond your years, which just seems so incredibly unfair. As you prepare to put on your brave face, I want to tell you that you don’t have to wear that mask.

I know that you’re grieving, and I want you to know that it’s okay to grieve.

I know that you’re consumed by sadness, and I want you to know that it’s okay to be sad.

I know that you’re frightened, and I want you to know that it’s okay to feel fear.

I know that right now you would give almost anything to take this pain away; to go back to a time when you’d never heard of MRKH, or to skip forward to a time when you’ve somehow figured out how to fix it; a time in the future when you’ve fallen in love, had three children, and all of this has faded into the distant past. Right now, it feels like these are the only things that will make you feel whole again.

But I want you to know that you won’t have to wait until then for joy and meaning to creep back into your life.

I want to tell you that if you hold on to the pain just a little while longer, you will find a strange and unexpected beauty in your pain.

MRKH is going to take you to places within yourself that you didn’t ask to go, and navigating your way through those places is going to shape the person that you become, the qualities that you develop, and the passions that you are going to follow in your future. Although you may not believe me in the dark place you’re in right now, I want you to know that there will come a time when you wouldn’t change MRKH for anything. If someone were to try to take it away, you would hold onto it tightly, because you will cherish the things you have learned from this experience. You will cherish your insight, your compassion, your resilience.

I promise that there are brighter days ahead, but please don’t feel like you have to get there alone. So as you stand there outside the hospital, debating whether to go to your first conference, I want to go back to hold your hand and guide you gently through the door. I want to tell you that the step you’re about to take will be almost as life changing as the day you were diagnosed with MRKH, but this time it will be life changing for all the right reasons. You are going to learn from a medical team who will make you feel so safe and held. You are going to meet people who will become dear friends and colleagues, and you will form such special relationships that will last a lifetime. Stepping through this one door is about to open so many others that are going to bring more purpose and meaning to your life than you ever could have imagined.

The first time you come here, you’ll probably do more listening than talking, and that’s okay, because nobody is going to ask you to do or say anything you don’t want to do or say. But as you come here year after year, you’re going to find your voice and feel more comfortable with being open. In doing so, you’ll see how sharing your experiences and listening to those of others makes people feel more supported and less alone. Seeing the difference that this place makes to people’s lives will inspire you. It will ignite a fire in your belly that makes you want to change the world; to raise awareness about MRKH and do everything you can to improve care for MRKH globally.

Don’t worry – you’ll start off slow and steady; testing the waters by sharing MRKH with those who are closest to you, and you’ll feel humbled by their kindness and support. One day, in your own time and when you feel ready, you’ll openly disclose MRKH by writing a blog about your experience. I know that seems unimaginable now, but you’ll find a new freedom in being wholly and unapologetically yourself, without having to hide any part of you.

You’ll use this new freedom to speak loudly and proudly about MRKH. You’ll work with a kind and committed group of medical professionals and a team of inspiring women who share your passion to make a meaningful difference in the MRKH world. When you achieve your goal of becoming a psychologist, you’re going to combine your personal and professional passions by doing research on psychological adjustment in MRKH. You’ll work hard to ensure that your research has impact on mental health care provided to people affected by MRKH around the world.

With each of these experiences will come more and more healing. So despite the fear you felt that first time you came, there will come a time when you will feel so grateful to have had the privilege to travel to this day. You will be able to say thank you to your mam for bringing you here that first time, no matter how much you didn’t want to go. Every year, when you leave the Boston conference, you’ll feel sad for the other Irish women who haven’t had that privilege. But one day, you’ll email a doctor in Ireland suggesting that we have a similar day. She’ll welcome your suggestion with open arms, and you’ll work together to hold Ireland’s first ever MRKH day. When you leave her office after your first meeting, you’ll walk the same streets that you walked in floods of tears on the day you were diagnosed with MRKH all those years ago. But this time, you’ll walk those streets wearing a beaming smile so wide that it hurts your face. You won’t be able to wipe that smile away because you know that the next time a young woman is diagnosed with MRKH in Ireland, she won’t be told that there’s no support. Instead, she will be told that there is a place where people with MRKH from across the country come together for information and support. And you will know that when that happens, it will be because of you. You are going to feel so immensely proud, and believe that your ambitions have no bounds.

So from almost 30 year old you to 17 year old you, I want you to know that I’ve got you. Be kind to yourself now, trust in your future self, and be open to the opportunities that life brings, however unexpected they may be. When moments of joy and laughter creep back into your life and catch you by surprise, let them in and hold them dearly, because there is a lifetime more of them to come. And when your 30th birthday comes around, I promise that you won’t be mourning the things you don’t have. You’ll be celebrating wholeheartedly the things that you do.

Disclosure: a choice, a process, a privilege

“I want to write a novel about silence”, he said: the things people don’t say. – Virginia Woolf

“What are you thinking, Sue?”; a question my Mam has inquisitively asked periodically throughout my life at times when I’ve looked sad, or pensive, or uncharacteristically quiet. There have been moments when I’ve divulged my innermost thoughts and feelings, and moments when I’ve laughed and said “there’s probably a reason I’m thinking it and not saying it”. I’ve inherited my mam’s inquisitive personality, and developed intrigue in those parts of people’s lives that remain silent; the things people don’t say. I have pondered the reasons why people choose or choose not to speak their silences, what happens when the unsaid becomes said, and what a privilege it is to have the power and freedom to make that choice.

A Choice

It’s been three years since I made the choice to (very) openly share the part of myself that felt most silent, by writing a blog about my experience of living with MRKH syndrome. My decision to disclose came when the balance shifted from 10 years of fearing that the negative consequences of disclosure would be greater than the freedom it might offer, to one day realising that the discomfort of non-disclosure far outweighed the risk of disclosure. That moment of clarity came while sitting in a restaurant in Boston after giving a talk at an MRKH conference earlier that day. I reflected on how I had been mentally dividing my friends and colleagues into “those that knew” and “those that didn’t know”, which equated to “those around whom I could be fully myself”, and “those around whom I needed to censor myself”. I thought about how after every trip to Boston, I felt invigorated to advocate for MRKH, but how despite the fire in my belly that made me want to change the world, I found myself returning home year after year pretending that I had been on yet another extravagant “shopping trip”. I contemplated the many barriers to disclosure: shame, embarrassment, fear of being misunderstood, not wanting to be treated differently, concern about what others might think or say, to name but a few. Ultimately, I couldn’t find a barrier big enough to be worthy of enduring the stifling feeling of hiding an integral part of myself. The experiences I’d had because of MRKH and the way in which I’d coped with those experiences had shaped so much of who I was, that sharing it just felt like the right thing to do.

So for me, disclosure was about identity, being true to myself, and having the freedom to immerse myself in advocacy and research in the hope that I could make some kind of difference. Open disclosure felt to me like the best way to allow those things to happen. However, I appreciate that for most people, decisions about disclosure may be less about public proclamation on social media, and more about navigating how, when and with whom to share personal stories about one’s life. Throughout my career and personal life, I have encountered many people who have grappled with disclosure about a range of issues: medical diagnoses, mental health difficulties, trauma, sexuality, gender identity, and other challenges that life has thrown along the path. It has made me wonder about the number of people who have stories that are waiting to be told, and how their lives might be different if those stories were free to be spoken. In my experience of quieter, more private moments of sharing with friends, disclosure has invited disclosure, which has often been accompanied by expression of relief or lifting a “weight off” their shoulders. Somehow self-disclosure seems to nurture an environment where openness feels safe. But how can we make openness feel safe before the weight gets too heavy? I’m not sure I have the perfect answer, but perhaps in a world where we’re primed to present a polished image of ourselves, allowing the unfiltered version of our lives to rear its head every now and then may allow others to show their vulnerabilities too. Many of us are excellent at being reactive to distress, by showing compassion and support whenever we know it’s needed. Perhaps we could also be proactive when those needs are not so clear, by offering opportunities for disclosure amongst family, friends, colleagues, or people who may seem lonely or isolated.

Of course offering a listening ear may not always mean that people will choose to disclose. Despite my obvious bias towards disclosure, I also feel strongly that it is a very personal choice, and that sharing is not the right decision for everyone. Disclosure is often praised as brave, courageous and inspiring, which I believe is valid and true. However, I also feel that it’s imperative to acknowledge that the converse is not true; that non-disclosure does not mean a lack of courage, or bravery, or inspiration. The goal may not be to encourage people to disclose, but rather to empower people to be able to make a choice that allows them to live as comfortably as possible with the challenges in their lives.

A Process

Indeed, disclosure is probably less well conceptualised as a binary decision or a one off event, but rather as a process during which feelings towards and comfort with disclosure change with time and place. I vividly remember one of my earliest disclosures, which happened while sitting in a friend’s living room at age seventeen. At the time, my mind was consumed by MRKH, and I desperately wanted to share it with a friend whom I knew I could trust. Although I was safe in the knowledge that her only response would be kindness, as I opened my mouth to speak, my body started trembling and I found myself choking on the words that I needed to say. Eventually, I managed to bumble my way through by making vague statements like “I’m missing one of my organs and also what’s supposed to be attached to that” hoping that she would somehow guess by process of elimination of vital and non-vital organs. Thankfully, that friend had a good grasp of biology and would later train to be a nurse, so was able to guess and vocalise it for me.

For years, the words “MRKH”, “uterus”, “womb”, and “vagina” were unsayable, and every time I tried to say them I was faced with that same overwhelming anxiety (side note: see blog on why we need to normalise speaking about female anatomy). Even hearing people say “MRKH” made me flinch. So I gave myself time and space, and engaged in therapy to help me to make sense of it and process it in my own head. I then gradually started talking about it more honestly and openly with other people, until that anxiety slowly started to fade. Now, when I find myself in a new group of people who have never heard of MRKH, disclosing it only provokes minor and momentary anxiety. Twelve years post diagnosis, writing about it on the internet, speaking about it at medical or academic conferences, and saying the word “vagina” aloud barely feels scary at all.

So the risk of speaking my silence was absolutely one worth taking, but I’m also glad I allowed myself to move slowly through the process of getting to a place of readiness. I guess I feel the need to address that for the person who may read this blog or look at those who speak the loudest and think that they “should” be speaking loudly too; perhaps before they might be in a place where it feels safe to do so. As advocacy and speaking out have (thankfully) become increasingly acceptable and encouraged, I sometimes wonder whether people feel under pressure to join that movement. As admirable as it may be to raise awareness of important issues, it’s okay to do it at your own pace, or not to do it at all. Taking care of your own mental health first may enable you to have a wider impact if or when the time is right.

A Privilege

When I think about living with MRKH: the diagnosis, the treatment, the grief, it hasn’t always been easy to say the least. But when I reflect on the opportunities I’ve had and the support I’ve received through disclosure, I almost feel like I’ve reached a point in my life where I have taken more from MRKH than it has taken from me. Despite the challenges that MRKH has brought and will bring, the privilege of having the freedom to speak about it has enabled me to adjust to and embrace it in a way that I could never have imagined at seventeen.

I will be eternally grateful for the people in my life who have made disclosure feel so safe. I often wonder about the people whose struggles may remain forever hidden because they don’t share that luxury, no matter how desperately they may want to disclose. It saddens me to think about what it must be like to have MRKH in a culture where so much of a woman’s worth is measured by her ability to produce children, how it must feel to be gay in a country where certain sexualities have been deemed illegal, how challenging it must be to have a mental health problem in a context where that’s still taboo, or to live in any environment where disclosure is met with judgement or cruelty rather than acceptance and support.

Although we may not individually have the power to make immediate global change to acceptance of difference or having freedom to share silences, we do have the power to support those in our networks. It’s been heartening to see so many campaigns, individual stories, conversations and insightful documentaries gaining wide media coverage during Mental Health Awareness Week. While next week’s media coverage may be quieter again, let’s continue to look out for those within our reach. We may not all be open to disclosing our own challenges, but perhaps we could all be open to offering a space to listen for those who may need it.

We need to talk about vaginas and vulvas…

Fanny, pussy, vajayjay, “front bum” (yes, front bum)… just a few of the many terms we’ve created to describe our nether regions; perhaps because some sound sexier than real anatomical terms, or maybe because using nicknames for our lady bits has somehow become more socially acceptable and less likely to make people squirm in their seats. Finding words that challenge the taboo of discussing female genitalia has mostly been a good thing – we’ve created a language for ourselves to speak about body parts that were once unspeakable. But somewhere in the midst of lady gardens and hoo-hoos, we’ve created confusion about the ins and outs of female genitals. If given a diagram of their anatomy, how many people could correctly label their labia, urethra, clitoris, and who would know their vagina from their vulva?

“Vagina” is one of the few real anatomical terms that has fought for and secured its place in our everyday vocabularies (well done vagina!), but despite being given the thumbs up as a speakable word, a lot of the time it’s used inaccurately. People often say “vagina” to refer to everything that sits between a woman’s legs. What they really mean to say is “vulva”, a word that runs the risk of evoking the scrunched up face response. Contrary to the language we use, vaginas and vulvas are not the same thing. “Vagina” refers to the internal canal that can function for sex, menstruation and birthing babies, while “vulva” refers to the external parts of female genitalia, including the clitoris, labia, urethral and vaginal openings. Variations in sexual development mean that these structures and functions may differ somewhat between individuals, but the bottom line is that vaginas are internal and vulvas are external.

This may be news to some and familiar to others. Either way, you may be wondering if it’s really that important to be so pedantic about semantics. For me, personal and professional endeavours have affirmed my belief that it absolutely does matter! If you persevere to the end of my ramblings, hopefully you’ll find it’s important to you too.

On a personal level, most people who know me will know that I haven’t shied away from discussing my experience of living with Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH), a diagnosis that means being born with an absent or underdeveloped uterus, cervix and vagina. When I thought about publicly disclosing MRKH, one of the biggest barriers was feeling terrified about other people’s misconceptions. I worried about the consequences that misunderstanding MRKH would have in terms of how I would be perceived and judged by other people. If I said I was born without a vagina, would people picture something resembling a Barbie doll with no genitals? When you consult Dr Google, two of the most frequently asked questions about MRKH include (1) where do they pee from? answer: the urethra – the urinary tract and reproductive tract are separate entities and (2) can they experience sexual pleasure/orgasm? answer: yes – MRKH or no MRKH, women derive much of their sexual pleasure from the clitoris, which is part of the vulva (i.e. not the vagina), and women with MRKH can have vaginal intercourse after lengthening the vagina if desired. After much deliberation about how poor understanding of anatomy would impact on how people viewed me and what they would say about me, I carefully concluded “fuck it” and decided to adopt the “give less of a shit” model of coping and write about my vagina on the internet.

As it happens, disclosing MRKH has been incredibly liberating. It has enabled me to be wholly and unapologetically myself in all areas of my life, to speak openly and advocate for women with MRKH, and to join my personal and career interests by researching MRKH, which I hope will lead somewhere exciting in the future. So my experience has largely been a positive one, but I’m painfully aware that others may not feel so safe to disclose MRKH, other differences of sex development, or any other issues that involve unspeakable body parts. Although there are many factors that influence individual choices about disclosure, I can’t help but wonder, if we all had a better understanding of anatomy and didn’t have to be so elusive when discussing our “privates”, would people feel less shame and fear about discussing differences?

From a more professional perspective, I’ve had many a discussion with my health psychology colleagues about vaginas and vulvas, bladders and bowels, and the body parts and bodily functions that we all have, but don’t all feel comfortable to speak about. In health psychology, our interests include people’s health behaviours (the things people do to look after their health) and how people adjust to, cope with and manage long-term physical health conditions. One way of looking after our health is being able to notice changes in our bodies and getting checked out by a medical professional if we spot any unusual or concerning symptoms. If we don’t know our vaginas from our vulvas, and our urinary systems from our reproductive systems, how can we tell when they’re working properly and how do we describe our symptoms when they’re not? Another example of looking after our health is partaking in screening programmes like cervical screening, but if we don’t know what a cervix is, it’s unlikely that we’ll feel motivated to attend a screening appointment.

Even for people who know where things are “down there”, embarrassment about saying certain words out loud may prevent them from sharing important symptoms with their doctors. This may result in silent suffering rather than help seeking and being offered useful interventions or simple self-management strategies. There are a multitude of long-term physical health conditions in which people experience symptoms like sexual dysfunction, vaginal dryness, low libido and urinary problems. Despite being some of the most distressing and disruptive symptoms in daily life, they’re often the ones that remain most hidden. Perhaps if we were to educate people about what goes on “downstairs” and open up our dialogue to free the locked words that describe our anatomy, we would feel less embarrassed and ashamed and more supported and confident to speak out loud and proud about our “bits”.

So why not drop your hoo-has and cha-chas and get to know your vaginas and vulvas? Crack out a mirror, have a look at what’s where, check out a diagram and get chatting with your pals. With or without a difference of sex development or a “women’s health” issue, peeking out from behind the curtains of slang terms for our genitals may just result in less shame, more acceptance and freedom to talk about what lies beneath. Let’s not allow our “private parts” to be so private that they’re a mystery even to ourselves!


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.