Ok. So, here we go.
I’ve been building up to this post for a few years. Some of you might consider what I’m about to disclose is a bit of “TMI”. In many ways, I’m not doing this for anyone but me. On the other hand, I do hope that others who are dealing with private battles can take courage from my story.
This is intensely personal. In fact, it is about as personal as it gets. This story is about my battle with my body. This is a post about my battle with a gynaecological condition. It is a story of grief and loss and ultimately a triumph. So there is a happy ending to look forward to.
You have been warned. This is not going to be easy for me to talk about and it might not be easy for you to read. There’s a Musical Challenge at the bottom of the post if you want to skip straight there.
The story begins…
Let me take you back to that post from 2011 when I first made mention of my problem:
I was diagnosed with a condition … which affects nearly 20% of women between the ages of 18 and 60 so, statistically speaking, I suspect a number of you reading this are also afflicted. It is misunderstood and misdiagnosed by the medical profession and virtually unknown in the general community. Since I was diagnosed with this I wanted to scream from the rooftops, take out full page ads and get on TV and tell the world of this insidious condition which seemed to be striking at the very heart of what it was for me to be a woman. …and yet, I cannot say its name to you here in this blog. If you ask me about this, I will still probably not tell you about it. …And please don’t pity me or offer me hugs – this is just a fact of life that I have learned to deal with…like HECS debts and credit card bills.
The year was 2007. It was a year that saw my understanding of myself get turned on its head. It was the year I got married. It was the year I was diagnosed with this unknown condition that eventually undid me. It stripped me of my dignity, my femininity and, in many ways, my strength.
It is a chronic pain condition called Vulvodynia. (You’ve no idea how many times I just typed that and deleted it!)
Over the years I’ve had all kinds of treatment. From medication to alter my brain chemistry so it didn’t interpret touch as pain, to ointments and creams and analgesic gels to dull the sensation, to toxic injections to paralyse the nerves, to innovative and invasive physiotherapy, to psychological treatments designed for use in chronic pain management. I’ve had it all.
From the time I was diagnosed, I noticed that my idea about what it was to be a woman was slowly eroded. The physical differences between men and women exist between their legs. If those parts don’t work, then what is the difference between us? If I can’t function as a woman, then what am I? That’s where my head went and there’s where it stayed…for years.
Ultimately, my sense of who I was in the world was transformed. I allowed myself to be defined by what I could not do. I could not be a partner in my marriage. I could not fulfil my dream of starting a family. I could not see myself as a woman in any meaningful sense. I was dead inside.
I promised a happy ending, didn’t I?
After my marriage disintegrated, I was lucky enough to meet someone who accepted me in the full knowledge of what I was dealing with. Through communication and support we reframed “my” battle to being “our” issue to deal with. Partnership and teamwork were the key to unlocking the door to recovery.
It is seven years since I got that diagnosis. Quite a lot has changed in that time. In the beginning, visits to new doctors were horrible. Nobody had heard the name “vulvodynia”. I usually had to explain it. Most doctors thought it was a psychological barrier and were heartless enough to say “just get over it”. Very few accepted that it was a neuropathic pain disorder. Nowadays, I tell a doctor that I have this and I am met with a concerned face and words of comfort and occasional pity.
Almost nine months ago, I achieved something which neither I nor my gynaecologist would ever have dreamed was possible – I got pregnant…naturally. A natural conception was always my goal in the same way that it is my goal to win first division in the lotto. To have come from where I have to where I am now is testament to the fact that I didn’t really lose my strength after all. It was just a little bit buried.
I have learned that acceptance of a situation is not acceptance of defeat. I can still strive to change the situation, to improve it. Having gone through this and to be a mere eight days away from welcoming our first child into the world has taught me that I really do have quite a bit of courage and fortitude. Fortitudine Vincit. That’s my family motto – “he conquers with fortitude”. I did that…and I ain’t gonna stop now.
Thank you for staying to the end of the story. I know it was a little long and probably a little uncomfortable in parts.
Now for the lighter part of the post…Musical Challenge!!!!