Chapter 17: Endo Legislation

Recently I stumbled upon an article that my home state of New York was the first state in the country to pass legislation regarding endometriosis. What is it and why is it necessary?

Current statistics say that one in ten women are diagnosed with endometriosis. That is about 7 million women in the United States. It is not an uncommon disease, yet many people do not even know it exists. This bill aims to change that. It was passed in the Assembly and the Senate, and is awaiting Governor Cuomo's signature.

The bill will amend New York State’s public health law to include informational materials concerning menstrual disorders, including endometriosis. It is the first bill in the United States to require a state’s commissioners of health and education to make the materials available to school districts and medical practitioners statewide. This bill would educate young women to learn about the disease at the age of onset- when they start menstruating.

My own school's sex ed definitely left a lot to be desired. In 5th and 6th grade we had "experts" come in to teach us about our changing bodies. They all said periods weren't supposed to hurt. This is so harmful. For years, I just assumed that my pain tolerance was lower than that of my peers. Why was I missing school when I got my period in 6th grade and they weren't? Was I weaker than the other girls in my class? Were they braver? It never once dawned on me that something was actually medically wrong with me until college, 8 years later. And then it still took another 8 years to find a specialist.

If I had known what symptoms to look out for (killer cramps, very heavy bleeding, pain during ovulation, pain during intercourse, painful bowel movements, pelvic pain... etc.) I would have sought help earlier. Instead, I internalized everything, thinking it was a mental weakness on my end. It wasn't. And I have the pictures of my insides to prove it. The fact that the Endometriosis Foundation is campaigning for a change in New York to prevent this physical and mental suffering to future generations of women makes me relieved and hopeful.

"Based on current trends, every five seconds a baby girl is born who will grow up to develop endometriosis,” said Dr. Piraye Yurttas Beim, Founder, and CEO of next-generation women's health company Celmatix and Board Member of the EndoFound. “As a patient myself, I know the consequences of learning too late in life that the symptoms of endometriosis are not a normal part of being a woman. There is a pressing need to get more information and resources about this devastating condition into the hands of women earlier in their lives. I am delighted that New York is setting an example for others to follow." I hope other states do follow New York's lead and that the governor signs this bill into law soon.