Why We Need to Talk About Endometriosis

This is my sister Holly’s story. Her personal experience with endometriosis has impacted her in many ways, and she’s been offering a wealth of information for other women.

March is Endometriosis Awareness Month, a time to bring attention to a condition that affects an estimated 1 in 10 women and people assigned female at birth worldwide. Despite being so common, endometriosis remains widely misunderstood, under-researched and under-funded. For many people living with it, including myself, the road to diagnosis can take years or even decades.

I was diagnosed with endometriosis in my early 30s, but my symptoms began when I was just 13 years old. Like many teenagers, I was told that painful periods were normal. Severe cramps, fatigue and other symptoms were often minimized or explained away. Over the years, I saw doctors and tried to manage the pain as best as I could, but not once was endometriosis mentioned as a possible cause. We so often misinterpret common for normal. It wasn’t until the day of my diagnosis that I even heard the word from a medical professional.

Endometriosis occurs when tissue similar to the lining of the uterus grows outside the uterus, causing inflammation, scarring and chronic pain. While often discussed as a reproductive condition, it is increasingly recognized as a systemic inflammatory disease that can affect the bowels, bladder, nerves and other systems. Because symptoms vary and diagnostic methods are limited, the average time to diagnosis is seven to ten years. During that time, many are dismissed or told their pain is simply “part of being a woman.” This delay has serious consequences for physical health, mental well-being and overall quality of life.

My story is not unique, and that’s exactly the problem. Endometriosis Awareness Month is about breaking the silence, supporting those living with chronic pain, and pushing for the research and medical training needed to improve care. No one should have to wait nearly two decades to hear the name of the condition shaping their health. By sharing our stories, we can help ensure that the next generation is heard sooner, diagnosed earlier and supported better than those who came before them.

Knowledge is power. For more information and resources on endometriosis, visit enodfound.org and learn more from Holly on her Substack.