I write this post the morning of what is fast becoming my main purpose as the Victorian Ambassador for the Australian ‘Sisters for Love MRKH Foundation’. Today I get to host, for the second time, a casual, all inclusive, non-threatening catch up with a group of women who have common experiences that match my own. It is hard to describe how I feel. I was so alone with this syndrome for so long, the silent, hidden burden was incredibly isolating. I literally had no one to talk to that could ever understand.
When you are sixteen years old and you are told by an old and experienced gynaecologist that they have never come across a case like yours it is pretty easy to see how you can come to the conclusion that you are the only one. And I was basically told just that. When your doctor says your case is so unique you are not given a name of a syndrome but instead a list, and in my case as it turns out an inaccurate one, of medical issues.
I got whisked off for specialist treatment to really what can only be described as a specialist who had no real experience in cases like mine. The resounding message I walked away with over and over again was that I was, purely and simply, a freak of nature. It is of no surprise that I felt completely and utterly alone with an unnamed and unique diagnosis and I carried this inside me for years.
To once again be having the opportunity to meet up with other women who not only have the same diagnosis, but have shared and similar experiences to my own still blows my mind. To actually have a name for my condition is equally remarkable to me. What a turn around from the first 25 years. These days I have links with women world wide. I participate in Australian based activities and are part of a global network of women that reach into the thousands. Support now is just a quick click away.
The acronym MRKH stands for Mayer Rokitansky Kuster Hauser Syndrome, a ridiculous mouthful. Yet the first time I heard it it was instantly adopted into my known vocabulary, I never once stumbled on the name or the spelling of this unusual syndrome. The significance of this is not wasted on me one bit. I know that having a name, at long last, for what was wrong with me was my first chance of grabbing on to a life raft and getting to some place safe. Australia having a relatively small population compared to most Western countries is possibly one of the keys to why it has taken so long for the name of this syndrome to reach our shores. But to be honest I still struggle to fully understand this.
The first siting of the not yet named syndrome is recorded as far back as 400 years BC. It wasn’t until the 1800s, however, that the need to actually classify the symptoms began to be discussed in medical circles, with a full blown diagnostic name for the condition finally occurring in Europe 1961. My unnamed diagnosis occurred in 1987. The term MRKH only begun to be bandied around amongst some experts in our medical system, as far as I can tell, as recent as 2013 and is still widely unknown by most gynaecologists and certainly by every single GP I have ever come in contact with. This is my experience at least. I constantly shudder to think of how many girls in Australia today may be experiencing the same level of isolation I felt and, quite frankly, it is just not good enough. MRKH is considered a rare disorder but in the scheme of rare disorders 1 in 4500 is certainly not that uncommon.
To me MRKH is as much a disorder of the mind as it is the body. The psychological impacts are huge and we can make a difference to this through education, and I’m all for beginning with our medical profession. Even more significantly is the difference we can make for an individual woman on a solo journey by holding meet ups like the one I am about to host today. It is on occasions like these that for a whole afternoon you can get face to face support from really the only people who can fully understand, how wonderfully normalising and uplifting it is to be able move from a life raft and on to a ship!