BOSTON — For a condition that affects 11%, or approximately one in 10 of reproductive age-women, endometriosis is on hardly anyone’s radar, including medical professionals.

But several legislators, including state Rep. Lindsay Sabadosa, D-Northampton, and state Sen. John Velis, D-Westfield, are hoping that recent legislation they filed will help serve as a “conversation starter” for the chronic disease.

Endometriosis, which can start at a person’s first menstrual period and last until menopause, is a disease in which the tissue that lines the uterus begins growing outside of it and seeps into other areas of the body, and can impact the spleen, kidney, bowels and even the brain. This causes severe pain in the pelvis, vomiting, and can make becoming pregnant more difficult.

Sabadosa and Velis, along with state Rep. Christopher Hendricks, D-New Bedford, and state Sen. Robyn Kennedy, D-Worcester, all filed legislation that seeks  to establish an 11-member volunteer task force composed of experts in public health, advocacy, research, drug development, and individuals with personal experience living with endometriosis to produce a database for research and treatments, and for enhancing awareness.

Amanda Berg is one woman who could be called upon to serve on the task force. The Hadley resident was diagnosed with the condition in 2017, but actually began experiencing symptoms 24 years ago. Those symptoms included monthly vomiting and feeling like a knife was “carving me to scoop the guts of a pumpkin out.”

She faced debilitating pain and inflammation that reduced her quality of life in many ways, causing her to  cancel plans and miss work.

“Live with it” was the best advice medical professionals were able to give before her diagnosis, which on average takes between seven and 10 years to figure out.

“You’re just having abnormally aggressive cycles,” is what they would tell her.

But that wasn’t true at all.

A friend with the same symptoms asked Berg in 2017 whether she had heard of endometriosis, to which Berg responded with her own question: “Did you just make that up?”

But after asking her doctor, she received a diagnosis via laparoscopic surgery, since ultrasounds cannot detect endometriosis.

“Oh, you’re riddled with it,” she said her doctor found. “I was officially diagnosed in 2017 and finally saw a specialist in Boston at Mass General who validated and heard my plea, resulting in my surgery in December 2024. I am 1 in 10,” said Berg.

This is fairly typical experience for women, as doctors receive limited training to address endometriosis.

While Endometriosis Awareness Month just wrapped up, both the legislators and advocates are hoping to raise awareness of the condition no matter the time of year.

Velis, the only male to file a bill for this cause, first heard about the condition a year and a half ago when his wife was diagnosed with it.

“I’m a pretty well-read dude, and my wife is a well-read woman,” said Velis, noting that he and his wife were shocked to have never come across the condition, despite her long battle with aggressive pelvic pain.

Sabadosa, who is a champion for women’s health in the state’s Legislature, remembers learning about endometriosis in seventh grade, but that it was presented to her as, “something than can happen but wasn’t that prevalent.” She spoke last week with a yellow ribbon on her desk, which is the advocacy color for the condition.

Sabadosa said she was inspired to file legislation after Connecticut passed a bill in 2023 to create an endometriosis task force and created a data and biorepository program aimed at increasing awareness, advancing research, and improving care for those living with the condition.

She is confident that the cause to pass the bills will gain momentum and lead to better patient care by forming a biorepository for molecular studies on tissues. This, she said, will “push forward collaborative research” and allow women to be diagnosed sooner.

Velis, who said his wife has been “happy and healthy” since having an operation, hopes the legislation will highlight the conversation around the illness.

“What I’ve heard is that this is an afterthought in [medical] schools,” he said.

Berg, who has been in communication with Sabadosa since she learning about the legislation, called the bills fantastic.

“It probably should have been (done) a long time ago, but hopefully it will make a difference for girls and women in the future,” she said.

Berg has been feeling better since an operation last year, although she is not cured, and understands endometriosis can grow back. The goal going forward as she vocally advocates for awareness is “for people, doctors, lawmakers, and professions to begin saying, this is what we need.”

Samuel Gelinas can be reached at sgelinas@gazettenet.com.