A big word, with even bigger consequences…
I got my first period over Christmas break when I was in grade seven. I remember looking down at the red streak in my underwear and not being happy or sad or confused or angry, just thinking, great, another thing to worry about. Looking back it appears that I was already feeling the weight of being a woman in a patriarchal society. Already knowing that having a period could hinder my life.
My periods continued over the years uneventfully — then one day I started having intense cramps and kidney pain. After surgery, I found out I had endometriosis, which was the reason for my non-functioning kidney. Endometriosis is a scary word for a 19-year-old who had never heard it before.
I asked the doctor what that was. He said it meant I would have problems getting pregnant and so I better ‘hop to it’ as he walked out of the room. And so, I was left to figure things out on my own.
My pain got worse after surgery, debilitating at times, but I kept on going and didn’t say much. Partially because I didn’t know what to say. I couldn’t explain to people what endometriosis was because I didn’t know. I was embarrassed that I didn’t know what was happening to my body.
Then one day my roommate found me passed out on the bathroom floor from pain. It scared her and me. I decided then that I deserved to know what was happening to my body, the only one I had.
I did some research, I read some books and websites, I found out very little because there is very little to find out. Endometriosis, being a “woman’s” disease, is not important in the medical world.
My pain continued — I had more surgeries, took some medications with awful side effects and I tried to get pregnant without success.
Today I continue to have pain and health care providers continue to be able to do very little to help me.
What we know is that endometriosis is a common chronic inflammatory condition where tissue, similar to the tissue that normally grows inside the uterus, grows outside the uterus. Sounds simple enough, but this condition causes severe pain which is often worse during menstruation. It’s a leading cause of infertility, and because the tissue can be found anywhere in the body, it can cause pain and problems with organ function, emptying of the bowel and bladder, movement, sex and even breathing.
March is endometriosis awareness month. A month to bring awareness to the condition that affects 176 million people worldwide. A condition that can take up to a decade to diagnose and yet disrupts life on a daily basis. More research is needed. A cure is needed.
Maybe then we can live in a world where a woman tells a health care provider they have pain and the healthcare provider listens to them, trusts them and has the research and knowledge to help them. A day when the dismissal of women’s pain does not exist.
For more information, visit TheEndoNetwork on Facebook.
Stacey Jacobs is a local sex educator and advocate.