By Kara O’Grady-Coen
It’s been four years since I was diagnosed with endometriosis stage 4. Before my diagnosis, I was one of the nine out of ten women who knew nothing about this disease. I had no idea what it would mean for my life and that it would change me beyond recognition. Diagnosis was only the beginning. Endometriosis has taught me to always see the silver lining. This is my story.
My journey really began when I was 13, my first day of high school and my first ever period. I had never experienced such incredible pain in my life. Over the next few years, that ‘time of the month’ became a living nightmare. Yet each doctor I saw continued to tell me that it was normal… “Some girls just get worse pain than others, that’s all.” Unbeknownst to me, all this time, from that very first day in high school, a monster was growing inside me.
Fast forward nine years: It was 2010, I was 22 years old and working full time, at the start of my career. Living and loving life like any other young woman, with just one difference; for 7-9 days every month I was in excruciating agony, balled up on the floor, hot water bottle pressed tightly to my stomach. Vomiting, passing out and praying that the pain would end.
By mid 2010 the pain was beginning to consume my life. It no longer came just once a month, it was with me every day. The next few months were a whirlwind. My life completely changed. I became a regular hospital patient. I had to leave my job, my flat and my life behind to have it replaced with pain, emergency surgery, debilitation and the discovery of this incurable disease inside me; Endometriosis.
My life view was irrevocably changed. I realised now how precious health and ability was and how much I had taken it for granted. In my time in and out of hospital these last 4 years I have encountered amazing strength and courage in the people I have met. Women who have fought endometriosis for twenty plus years and continue to fight with smiles on their faces, cystic fibrosis patients who know they won’t see thirty and yet find every moment of happiness from life that they can. And, to my surprise, I found this strength within myself.
I have endured pain, loss and deep depression that I would never have thought myself strong enough to get through and survive. I began to learn to always find joy in the small things.
Through the social isolation caused by this disease, I found myself reaching out to online endometriosis support networks. I was struck by the amount of care and compassion shared among these women who called themselves endo-sisters. Suddenly I was no longer alone. When I felt the pressure of this ongoing ordeal becoming too much, I could talk to people who understood, who would not pity me or tell me to try harder, but simply support me to get through the bad days.
Over the years and the surgeries, I became increasingly aware of how little was known or understood about endometriosis. How many millions of women were suffering unacknowledged by society and ignored by medical professionals. The average time until diagnosis of endometriosis is ten years, despite the fact that endometriosis is more prevalent in Australia than asthma or diabetes. I wanted to be a part of changing that.
I started my own online information, awareness and support group and ran awareness and fundraising stalls, donating the profits to Endometriosis Australia. So despite my pain and my debilitation I could still make a contribution to society, still do something worthwhile. Because when pain takes over your life, you lose all control. You do not decide. The pain decides.
All your dreams must change, you have to wrest what happiness and self-worth you can from your life living with endometriosis. It is astounding the inner strength you can find within yourself and discover in others fighting the same battle. It can at times be a lonely place and there is a sense of loss of dignity. Because no matter how many times your family and friends say they are there, they understand, they can never know your struggle and the emotional pain of no longer being able to do all the things you excelled at in this life.
Through becoming an awareness advocate, myself and many others like me have regained dignity, a sense of purpose and can once again feel we can contribute to society regardless of our disease. Endometriosis sufferers are fighting an uphill battle. I don’t want to feel this way and I don’t want other endometriosis sufferers to feel this way. I believe that together we can raise awareness and that life can change for women with endometriosis today, and those yet to be diagnosed.
Not that long ago, women with breast cancer faced these same challenges. Now, after years of hard work, the colour pink is synonymous with the push for breast cancer awareness and the fight for a cure. I work towards a day when people will see yellow and think endometriosis.