MRKH, Trauma and I

This article discusses issues surrounding MRKH surgery, consent and medical trauma. If it raises any issues you would like to discuss, please reach out to MRKH Australia for support (info@mrkhaustralia.org)

Having just turned 50 I am reflective of how far I have come in accepting my MRKH diagnosis and more importantly I am incredibly proud that I no longer feel ashamed of it. I love my child free life and my sexual self is in a happy place. Despite this, I have historical trauma that still lingers and is just starting to find its voice all these years later. Sadly, I stand surrounded by echoing cries sharing much of the same stories of this additional and avoidable trauma. Equally sad is that only now do I feel brave enough to finally speak out about it.

Despite the commonality of them, these stories of trauma sometimes struggle to find their place amongst the other more shared and hugely complex issues of the heartache of being childless, self-acceptance and sexual distress that exist within the wider MRKH community. I hope that by opening up about the final part of my story of trauma I will give a voice to the voiceless and lay out the sometimes-overlooked parts of a syndrome that seems to have no end. That is; the significant part that others have played in impacting on our already fragile sense of self. In particular the unknowing harm caused by mothers, fathers, friends and other family and the unforgivable harm caused by both systems and individuals in the one place we had to turn for help; the medical profession.

Over the past six or so years I have become a passionate advocate in sharing the voice of the many MRKH women out there who are not so focused on the grief of being childless. This grief was not my struggle. When I first found out that my condition was not unique to me I was in my mid-30s. It happened via a web search in the infant days of the internet. This led me to finding a group of Australian women with a syndrome known as MRKH, an acronym clearly never heard of by my doctors so hugely foreign to me. Like many others well passed the initial diagnostic phase I was awestruck and overwhelmed to discover that there was a whole world of women out there just like me.  Despite this exciting discovery it took every ounce of my courage to make a trip from Melbourne to Sydney to have lunch and meet other women with MRKH for the first time. It was a truly incredible moment and what should have been the first step towards healing my damaged self. Instead of this first meeting propelling me into a new world of support and understanding, however, I walked back out into the abyss of isolation feeling more alone than ever before. I did not belong to this group of women that were undeniably and understandably grief stricken at not being able to carry a child and whom were living in a world of dilemma of how to get the family they had always dreamed of. But this was not me and because of it I felt more disconnected and alone than ever before. I truly was unique, I was the freak I had always told myself I was and I slunk back to my world of silence with an even greater load of self-hate to carry.

This is a story I have shared before, in fact it’s a story I don’t even feel is mine alone anymore. After another ten years of isolation I eventually found the courage again to try and seek support, this time from a different source, from a psychologist. Through numerous blindsiding and confronting sessions, she helped dig me out of my grave of self-hate and to move slowly towards self-acceptance. As part of this healing I was buoyed to reconnect back with the MRKH community and to look harder to find my peers and to become a voice for those of us that were happy to be childless, for those of us whose bigger struggles laid elsewhere. I did this with a level of bravery and fierceness that I never knew I had.

When I was diagnosed at 16 my biggest trauma trigger was the idea that I was not a ‘normal woman’ and that I needed to be ‘fixed’ to have sex. I was a prudish child that became a sexually inquisitive teen, this second phase began just prior to diagnosis. I was starting to become sexually active at 15, mostly what we would call ‘second base’ in those days but prior to diagnosis I tried to hit a home run and was caught out before I made it to base. Despite this epic fail I had no idea that it was because of me and the way my body had developed in utero at a mere 4-6 weeks into gestation. MRKH is congenital but has the unusual quality of typically being discovered when you don’t experience menses. Like most, it was at the fragile age of 16 that I first discovered there was something ‘wrong’ with me with a reluctant visit to see a gynecologist because of my lack of period. It was at this very first appointment that my avoidable trauma began.

I was taken to the doctors grudgingly; my mother’s fear was not my own. I wasn’t worried that my period hadn’t arrived, in fact part of me was secretly pleased. I was one of those teens that dreaded the idea of getting it, so I was quite content to continue through life without really understanding the full implications of its absence. With all good and loving intentions my mother persuaded me to attend an appointment to investigate what was wrong with me. Straight up you can see the divide; I was content and felt ‘normal’, she was worried there was something ‘wrong’ with me. 

In the end I reluctantly agreed on the proviso that the doctor was a female. I did not want no old man poking around down there. To be perfectly honest, I did not want any doctor poking around down there, nor did I really understand that was exactly what would happen when we went to that first appointment and the immediate shame it would cause me. I still remember the humiliation like it was yesterday, I remember the room and the screen in vivid detail. What I don’t remember is consent being asked for, instead I remember an intense expectation that I strip off and lay down and spread my legs. Understanding that I could say no to any of this was not even a remote option, had it been I would have fled. Had it been I would have perhaps felt a small sense of control over my own body and my own future and with what lay ahead I now see how critical every smidge of control would be in order to come out of this diagnosis somewhat mentally intact.

As a teenage intent on pleasing, I lay and was silent through the first of what was to become a regular routine of non-consensual examinations in which I never understood my rights, was never asked if it was okay. In every countless examination there was an absolute expectation that I strip, lay down and be prodded. I felt violated, ashamed, embarrassed, abnormal and to top it off the physical pain hurt like hell. I survived these assaults like many girls and young women when their bodies are touched without their consent. I in no way liken it to rape given the positive intentions behind almost all the examinations but regardless my emotional self detached from every experience and I found myself split between the person I once was and this new kind of nobody, someone who had no voice, someone that was worthless, someone who just didn’t really matter at all and the repercussions of this would become long lasting.

My emotional disassociation was shortly matched with a physical one. By the second appointment I had been referred on to an old male gynecologist, highly reputable, but none the less my mortification was deep seeded. The one thing I had asked for, a female doctor, was now taken from me. There were murmurs of concern from him but I tuned out, I was as far away from my traitorous body as I could be. A few weeks later, my detachment from my own story became complete when I was asked to wait outside the doctor’s room as he delivered the news to my mother following a small surgery to fully examine my teenage body. On the day of diagnosis, I was called in after what felt like a century of time to be faced with my mother’s sobs. This was something I was used to having seen her lose her husband and my dad only 6 months before. This time the tears were my fault, but the pain was clearly hers. I don’t even remember what I felt except an overwhelming sadness for my mum. 

At this appointment I was told that I had no womb, only one ovary and one kidney, that I would not be able to have children but having only one kidney would not affect my life. I was also told that sex for me would be hard but this problem could be solved and fixed by a reputable surgeon. Having any type of conversation about sex was hugely uncomfortable for me as a sixteen year old, so having this topic raised and discussed by an unfamiliar man, granted a doctor, and my crying mum sent me into an internal hibernation and everything told to me was white noise. I knew it was about sex and I remember the emphasis on how fixing me as soon as possible was the best way to go. The sense of urgency was frightening, I remember being told it was better not to wait and it would be better for me to get it all over with. I was 16, still in deep grief and distress over the loss of my dad and was now presented with a whole new set of complex problems that I had no chance of getting my head around. I was not ready and was given no time to deal with any of it, the best response was to nod at the adults around me and do as I was told. The decision to alter my body was made that same day and with the wisdom of adulthood I now know there is no possible way it was done with real consent.

The drive home was more white noise, a noise that would become part of my life for a very long time. I was dropped off and shortly after my mum disappeared again in the car. She was clearly in need of significant support. I was left alone, confused, embarrassed and suddenly fully parted from my once familiar world and my old self, the teenager I had loved being only weeks before.

Shortly after my mum’s disappearance my uncle turned up. Although I knew my dad’s older brother well, the much loved patriarch of our family, I did not feel in anyway an emotional connection. He had arrived at our home following my mum’s news to give his support to me at this incredibly fragile time. This older man’s intentions were wholly good but unknowingly played a significant part in me never speaking out loud again, my internal fight to deny began and I spiraled into decades of silence living in pure fear that others would learn about the freak I was. The one thing I could have had control over in this new world of hell was who would know about it, but this one thing had been shattered the moment my mum left the house. It became her story to tell and my disassociation was full and complete.

The following year was a struggle through one medical appointment after the other, each of them as painful and as humiliating as the next. I had been told that I needed to be ‘fixed’ and the sooner the better. This constant reinforcement of my abnormality damaged me in ways that would take years to undo. My self-hate was quickly embedded in my psyche and I masked it with alcohol and humour. No one could know my disgust, no one would know what an aberration I really was. 

My medical team now consisted of two old men; a renowned micro-surgeon was added to the list. An ancient and wise old man who had no bedside manner and treated me like a delightful find that he couldn’t wait to get his hands on. He loved the challenge of creating a neo-vagina using a new medical treatment only ever done on two women before me. No one thought that us three women might benefit from knowing each other. We were treated like guinea pigs and my understanding of what was going to be done was nonexistent. I had no idea and certainly never felt I had a say over it, my body was long gone from me, it belonged to a team of others. This was reinforced as medical students were paraded in front of me as I lay in the most vulnerable position connected to a catheter in a hospital bed for a week with a deep aching throb between my legs. 

Over the course of this week I found myself alone one morning and I decided to have a look at the medical chart that hung on the end of my bed. To my horror I saw two words and it is in this moment that I finally had an answer to the question of what was wrong with me, these two tiny words were the cement that drowned me, I read ‘absent vagina’. In all of the medical appointments before no one had ever mentioned these words, the surgery was never explained in a way that helped me understand my own body, what was actually going to happen and the real reasons behind it.

If I had an absent vagina was I supposed to be a boy? Who was I? What was I? I lay in silent stoicism with the horror of my find. My teenage friends came to visit a number of times that week. I had told them what was to become one of many lies; that I was in hospital for a kidney operation. Every visit was a silent torture as I willed them to not carelessly pick up and look at the toxic medical chart that hung on the end of my bed screaming those two little words. I had never felt such relief to see them go. Every teenager from the past and the future longs for one thing; a sense of belonging and sameness with their peers. This identity was stolen from me like so many other things that went missing that year.

I left the hospital following days of being bedridden, after countless awkward and painful examinations and only after my insanely obsessive medical team believed that I could pee straight. What they had aimed to do was make me ‘whole and normal’, what they had achieved was to completely break me into two halves; one public mask and one private terror and it would take over 30 years to bring the pieces back together again.

The immediate journey that followed was more countless, mindless examinations and a ridiculous expectation that a 17-year-old girl in complete shock and private shame would actually use a dilator in a house of a swinging doors because of an absent and heartbroken mother and needy younger brothers. I did try, I gave it a good hard go numerous times, but my heart was just not in it and my head hated that horrible tool, nearly as much as it hated my horrible body. 

The doctor visits continued after I was released from hospital. During this time there was the added shame of letting people down and what seemed like endless lectures on how important it was that I try harder during the recovery process. I lay still and complacent as I was prodded, measured and talked about. Only once did I remember feeling present when I was asked permission to share my unique condition and treatment in a medical journal. I was mortified.  I was still reeling from my silent discovery of what was actually different about me to being asked to share my medical story with a whole world of strangers when I still didn’t fully even understand it.

The one thing I did have control over was my silence and I had been grasping at anonymity for the past 12 months, I wanted no one to know. So, when I was asked for my highly traumatic medical experience to be publicly shared I finally found my voice and spoke; I said ‘no’. In my memory of that moment I want to say I shouted, but I didn’t. It was probably more a whisper, but regardless I did say no and it was loud enough for both my doctor and my mother to hear because they went on to talk me down with words like ‘important’ and ‘help others’. And so it went on the be published in a medical journal against my spoken wishes. I was Patient 3, aged 17.

In 2003 I found that article and for the first time could finally understand what treatment I had and what they had actually diagnosed me with at the time. The title referred to vaginal agenesis and treatment with a new vulva-vaginoplasty. Finally, after sixteen years, I had both a diagnosis and a medical term for my surgery. The article was suitably written in academic scientific jargon but by my early 30s I had a post graduate level university education and had enough language skills to be able to read and comprehend it. It is also something I could explain simply in lay terms to others, including an intelligent teenage girl.

As I read about myself and the two other women that had the same condition and treatment before me and I wondered where they were, how they were and if their stories were as traumatic as mine.

“I wondered things that my doctors never wondered; if they had survived the mental side of MRKH, if they had learned to love themselves, if they had had the chance to consent and make their own choices of what was done to them, if they had been supported and given a chance to talk through their worries and take hold of their own healing and story. ”

This year, against all odds, I met one of these women and her answers to my questions were my answers; she had struggled for years alone, silent and embarrassed, never once had she been treated as a whole person, she was given limited knowledge of her own body and what was done to her. Just like me, she was a medical experiment and treated as such and to this day holds the ongoing weight of humiliation where it has no place, has a PhD in a self-depreciating internal dialogue and an unwavering shame laden silence. 

I have heard these same painful responses resonating for the past seven years since I re-immersed myself back into the world of peer support for women with MRKH. For many of us older women, and sadly some younger, our experiences through diagnosis and treatment have been heavily laced with avoidable trauma. If we are to understand this condition fully we need to begin with the mental side and leave the physical for later, there is no hurry. Our identity and sense of self can be lost from the beginning when it is shoved aside by the good intentions of others; our mothers, our fathers, our aunts and our uncles and by the doctors that can have no true understanding of what it feels like beyond the physical implications and the need to get in there and ‘fix’. 

Jodie Coughlan, age 50 years, DX 16 years

Read more of Jodie’s writing on self acceptance on her Blog Footloose, Fancy and Childfree