Hon. Rebecca Millett, a former state senator and representative, lives in Cape Elizabeth. Hannah Kobel, her daughter, who has been diagnosed with endometriosis, lives in Westbrook.

Chronic pelvic pain, painful periods, unrelenting exhaustion despite healthy eating and sleeping patterns, bloating that limits enjoyment of meals and fighting depression with no relief in sight following one dead end diagnosis after another. These are just some of the challenges faced when living with endometriosis.

After years spent eliminating possible triggers for the pain, irritable bowel syndrome (IBS), urinary tract infections (UTIs), celiac disease and ovarian cysts to name a few, there is a perverse sense of relief to be finally correctly diagnosed with endometriosis.

This complex systemic inflammatory disease involving tissue similar to the endometrial lining of the uterus can take on average between 4 and 12 years for a correct diagnosis due to a lack of noninvasive diagnostic tools, medical provider indifference/dismissal, lack of training and significant underinvestment in research. And there is still no cure. It doesn’t have to be this way.

March is Endometriosis Awareness Month and we hope that we can help spark understanding and change. Far too many women are suffering with pain and being told it’s normal. It’s not.

In the U.S., approximately 1 in 10 girls and women of reproductive age (between ages 12-49) are affected. Because of the lack of education around endometriosis, pain and other symptoms are often dismissed as “part of being a woman.” In fact, this is a chronic immune and hormonal disease characterized by lesions, scarring, internal bleeding, bowel or urinary dysfunction or infertility leading to multiple clinical symptoms. 

The reality of living with this disease is brutal. Most days, pain is debilitating and can lead to absences from school and work. The annual burden of endo-associated symptoms has been estimated at $119 billion in the U.S.

Exhaustion doesn’t disappear with rest and early bedtimes. During the rare days when the pain recedes, and exercise and adventures with friends seems possible, fatigue can still overwhelm and make optimistic plans take a back seat to the need for rest. As bodies and minds struggle under the constant strain of endometriosis, focus is hard to maintain, words disappear, tasks can seem overwhelming. It can be hard to help loved ones understand how deep and nearly constant the exhaustion is and that “pushing through” or “staying positive” is not a helpful suggestion when dealing with this chronic illness. 

Nearly three years ago, Connecticut passed “An Act Concerning Endometriosis,” which created a first-ever endometriosis data and biorepository program to bring attention to the disease and fuel research through a partnership with UConn Health and the Jackson Laboratory. We would love to see our health institutions work with Jackson Lab to grow basic research and clinical collaborations here in Maine to find a cure, as well as strengthen physician and nursing training to include information on symptoms and best practices for treatment. 

According to a National Institutes of Health study, most chemical classes of endocrine disrupting chemicals are associated with higher odds of an endometriosis diagnosis. Two chemical classes reflect significantly elevated odds for the disease. In particular,  PFAs are associated with higher odds of endometriosis.

Public health agencies across the country are warning of the health risks for PFAs and also include risk of cancer, liver damage and immune issues, to name some. Maine’s leadership in reducing citizens’ exposure to forever chemicals must not be waylaid by opposition from chemical conglomerates and should continue to strengthen. 

Science has made huge progress in improving treatment and prevention for many diseases. Now is the time to push forward, keep investing in the research and give greater attention to endometriosis that negatively affects so many lives.