Blog / 2011 / Why Endometriosis Awareness Matters

In the summer of 2009 over the course of a three-day hospital stay and an emergency surgery, I went from being someone who was mostly healthy to being someone with a chronic and incurable illness: endometriosis.

This disease is caused by cells similar to those in the uterus developing outside the uterus. During the monthly cycles of a healthy woman, a uterine lining is created and then shed. In a woman with endometriosis, lining is created wherever these cells are and is subsequently shed inside the body, resulting in internal bleeding, blood cysts, and scar tissue.

By the time I ended up in the ER a year and a half ago, endometriosis had been having its way with my body for years, but I had exhibited very few symptoms. In the end, it was the rupturing of a grapefruit-sized blood cyst that finally got me. The explosion meant extreme pain in the short term and a lot of damage in the long term: the rupture spread the endometriosis cells throughout my pelvic cavity. Though the surgeon cleaned up my insides as much as possible, he could only remove active endometriosis and not the individual cells that the exploded cyst had just circulated throughout my pelvic cavity.

In other words, if I had understood the symptoms I did have and if I had had the cyst removed before it ruptured, my endometriosis would not be as severe as it is today.

March is endometriosis awareness month. Though I’d love for new treatments to come out or for a cure to be found in my lifetime, those hopes are a bit premature. At this point, I’m sharing my story so that more people learn of this disease and can help others avoid my mistakes.

The two most important things that everyone needs to know about endometriosis are these:

1. Early diagnosis is key to treatment.

The major symptoms are pain with a woman’s monthly cycle and pain during sex. These symptoms can be caused by other diseases, but they are never normal.

2. If a person reveals that she has endometriosis, be gentle.

It isn’t easy living with chronic pain, and one of the more difficult aspects of this disease is feeling like no one understands or cares about what you're going through.