As a teenager, Angela Rossi had heavy, irregular periods. It was always like that. She was prescribed hormonal birth control to regulate her cycle – which only led to more discomfort. Growing up in Connecticut, Rossi recalled going to work in pain, and feeling a sharp shooting under her belly button that came with every step.
She was 18 then. After seeing several doctors, one said she likely had endometriosis, a disease that causes lesions to form in the pelvis and beyond. For many, it’s a lifelong disease that disrupts daily life.
“I just remember wondering if I was gonna have to live with this forever,” Rossi said.
Angela isn’t alone. Endometriosis affects nearly 200 million people across the world.
A new Connecticut law that went into effect this year is harnessing state resources to understand the often debilitating condition.
Lesions are made up of cells similar to the lining of the uterus. A formal diagnosis requires having that tissue surgically removed, and studied. Between the pandemic, school and getting dismissed by doctors, Rossi, now 25, hasn’t been able to get to that stage.
But her pain has continued.
“Sometimes it'll just be a dull pain like just a small burning, but other times it's like pouring hydrogen peroxide on an open cut,” Rossi said. “Then I cancel what I need to do, and then just hunker down in bed, and hope for the best.”
Misdiagnosed, ignored or ‘told it's in their head’
Right now there is no cure for endometriosis, and few treatments to fully alleviate its impacts, even though the disease affects at least 1 in 10 people born with a uterus.
Despite that, research into the disease has been chronically underfunded, which trickles down to the doctor’s office.
“With the lack of information and knowledge of health care providers, you have individuals being misdiagnosed, ignored, told it's in their head,” said Jillian Gilchrest, a state representative in Connecticut.
In 2021, Gilchrest started a state working group to better understand endometriosis and make policy around it. Two years later, Connecticut’s legislature unanimously passed a broad law concerning the disease.
The law established a program that’s now called EndoRISE, which works to educate people and look into early detection, diagnostics, treatments and cures for patients.
‘What else could I do?’
Severe period pain also started during adolescence for now 35-year-old Arielle Dance.
She wouldn’t be able to move, or would vomit or pass out. With her mom at her side, pushing doctors to consider endometriosis, Dance, then a teenager, was able to get a diagnosis following surgery.
“I learned a lot about my body at such a young age,” Dance said. “People are talking about infertility, but you're 15 and you're like, ‘I don't even know if I like kids, let alone do I want to have them.’”
Getting lesions removed is also one treatment. By the age of 21, Dance had five surgeries. She then decided to focus on meditation, movement and diet to curb the symptoms.
But endometriosis is systemic, meaning it can impact the whole body. Symptoms also overlap with other health issues, complicating efforts to detect and treat the disease.
Over a decade later, Dance’s pain and accompanying gastrointestinal problems again became unbearable. She had a lot of conversations with her wife and doctor. She then made a decision: She would have her uterus removed.
“What else could I do?” Dance said. “I would have just been miserable having surgery again, and again and again.”
Dance still gets muscle weakness from the decades of pelvic pain, but overall, said the surgery brought relief. It stopped her periods, which helped. But she knows a hysterectomy is not a cure.
Understanding the disease on a molecular level
Much about endometriosis remains a mystery.
“We don't know how it happens, how it evolves,” said Dr. Elise Courtois, a molecular biologist and director of single cell biology at the Jackson Laboratory in Farmington, Connecticut. “Usually, when patients get to the surgical intervention, it's been going on for years and years.”
Courtois and Dr. Danielle Luciano, a minimally invasive gynecologic surgeon at UConn Health, are co-directors of EndoRISE, the program spawned out of Connecticut’s 2023 law.
Lacking a diagnosis, many patients feel frustrated or misunderstood. It can also have an impact on mental health.
“They're told that's normal, or just go on birth control pills, or your mom had painful periods and your grandma had painful periods, and we all have painful periods,” Luciano said. “When you don't talk about it, or you normalize it … then it's this vicious cycle of not figuring it out.”
Establishing a biorepository to collect, study and catalog tissue samples from patients with the disease is part one of the new Connecticut law. The goal is to understand root causes of endometriosis and, possibly, pave the way to effective treatments and a cure.
After Luciano’s team operates on patients with endometriosis, tissue samples are then sent to Courtois’ team for testing at Jackson Laboratory.
Courtois likened her team’s approach to identifying ingredients in a smoothie: a complex process of teasing out variations in blood, fluid and tissue samples to better parse how cells of patients with endometriosis are different.
Hundreds of samples have already been collected and stored long-term in a cryogenic freezer. The next step of Connecticut’s law is to get samples from endometriosis patients at other hospitals in the state, to test an even wider group. Since the program is publicly funded, other researchers can access them to develop new diagnostics and treatments.
Ideally, Courtois said, their efforts could advance the discovery of new diagnostic biomarkers to be an alternative to the current diagnostic method of surgery. But Courtois said the field of endometriosis research needs more federal resources to continue.
Looking forward, looking back
Another stage of the Connecticut law includes education about endometriosis for health care providers. And Gilchrest, the Connecticut state representative, said she’s been speaking with people from other states to form their own working groups, to bring even more attention to endometriosis.
Angela Rossi, the 25-year-old who hasn’t been able to get the endometriosis surgery yet, says continuing to normalize conversations about periods – and other sexual and reproductive health issues – is part of raising awareness about the disease.
“It's not something that shouldn't be talked about, or should only be behind closed doors,” Rossi said.
Openness is key for Arielle Dance, too. As a teenager, it took a surgery for her to get diagnosed with endometriosis, and two decades later that’s still the method. But she has hope that technological and scientific advancements for early detection and treatment will help others living with the pain and frustrations of the disease.
“So that the next generation of people with the disease aren't struggling like some of us did,” Dance said.
That also includes understanding that everyone is dealing with something, she said – whether or not we can see it.
