Why I Write About My Endometriosis

We live in the age of online social networking, where we share even the most mundane elements of our lives. Not much is kept secret from our peers. But it is still deemed inappropriate to discuss your health problems online, for the world to see.

I didn’t start out with the intention of sharing my innermost secret health issues. In fact, I didn’t really know which direction I wanted to go in.

I had previously shared information and news articles about endometriosis on a Facebook group. I didn’t talk about my own problems on there though. As Facebook evolved, my group was deleted. I wanted to continue spreading the word about this little known disease, so I searched for a new outlet.

I started a general blog, adding things then deleting them. For some time, I didn’t know what I wanted to write about and I found it difficult opening up and sharing anything to the unknown. In 2011, “EMLWY” was created. A place where I could continue to share information on endometriosis and my own story.

I had come to a standstill with my own health. I had the Mirena coil in for 21 months and the experience had been a rollercoaster ride to say the least. It had completely stopped working by this point and the pain was back full force. I was disheartened and lost – I hadn’t considered the treatment not working.

I didn’t write very often back then, but when my endometriosis flared up in 2012, I embraced the blog and started using it as a source of therapy. What I really wanted was to find someone who understood what I was experiencing. I felt so alone in my struggles.

I wanted to show the world what living with endometriosis was like. What it actually meant to have it there every day, to cope with the emotions of it as well as the physical symptoms. My friends knew I had endometriosis, but I didn’t really talk about what it was doing to my body. Writing gave me that opportunity.

My symptoms had worsened as the disease had spread over the years, and, yet, people still didn’t know what endometriosis was. Some had never heard of it before. I felt people needed to know about endometriosis because I certainly wasn’t the only person in the world going through this.

As I gained confidence in my writing, the blog became almost no holds barred. Over time, I’ve spoken about everything from painful sex to constipation, from incontinence to fertility counselling and treatments, and everything in between. I quickly passed the point of embarrassment and sharing became much easier. I was tired of living in so much pain and keeping quiet.

My goal became clear. I wanted to shout about endometriosis from the rooftops, as loud as I could for as many people as possible to hear. If I could just get people to read the word “endometriosis,” they might retain some recollection of it. They might question what it is or go off and search for answers themselves. Maybe someone would read it who wasn’t diagnosed but was suffering the same problems, not knowing there was an answer for what was causing their pain.

EMLWY became not only a place for me to seek help, but also for others to gain information on endometriosis and support for what they were experiencing. I’ve spoken to young girls who didn’t know what was happening with their bodies, or who were newly diagnosed. It reminded me of how scared I was when I was diagnosed back in 2005, when I was only 21. Some girls were only in their early teens and experiencing that same fear alongside all the other difficulties of a normal teenage life.

Along the way, I found I was supporting other women without knowing it. Women who were just as lost as me, and who, in turn, supported me. It gave me perspective when I discovered women who were in a much worse position than me.

I have become somewhat determined to not keep my health problems hidden purely for the comfort of others. I discovered that sharing this information helped others. It empowered other women to start speaking out about their own problems, start writing them down for the world to see. One of my big hopes has always been that others will see what I, amongst so many other wonderful endo sisters, write and that they will do the same.

There is a disease out there, in the big wide world, called endometriosis. It affects millions of women across the globe. We need your realization, understanding and support. But we will never progress in raising awareness if we don’t speak out ourselves.