Sarah Fox has always had painful periods. “I just thought that was part of life, so I grinned and beared it,” she said.
Through the years, she experienced a host of other symptoms, including stomach pain and fatigue. Various doctors advised her to use heating pads and try muscle relaxers, but nothing helped.
It wasn’t until Fox was in her 30s that she was diagnosed with endometriosis, an often painful disorder that occurs when tissue normally found in the lining of the uterus grows outside the uterine walls. Left untreated, it can cause infertility.
Fox, who is now 44 and lives in North Haven, underwent a partial hysterectomy and finally found a doctor to treat her. But many women afflicted with endometriosis aren’t as lucky, said Rep. Jillian Gilchrest.
“I’ve had a number of women reach out to let me know about their experience with endometriosis,” said Gilchrest, a Democrat from West Hartford. “These women have been made to feel crazy about the physical pain they’re experiencing and how heavy their periods are, only to find out, years later, they were experiencing endometriosis and by that point in time, they’d become infertile.”
Gilchrest has formed a working group to raise awareness about the disorder and develop guidelines for medical practitioners. The panel will begin meeting this month and issue legislative proposals by the start of the 2022 session in February.
In 2019, New York became the first state in the nation to pass endometriosis legislation. The measure, which was signed into law by former Gov. Andrew Cuomo, amended the state’s public health law to include informational materials about menstrual disorders, including endometriosis. It also requires the state’s commissioners of health and education to make those materials available to school districts and medical practitioners.
“Women’s health issues are often ignored, overlooked and under-researched,” Gilchrest said.
The working group will include medical practitioners, experts in infertility, mental health providers and patients. It will also address health disparities that have resulted in women of color and poor women having less access to adequate care for the disorder, Gilchrest said.
“We really need to understand where are we as the state, what tips and tools do we need to get into the hands of medical providers and what can we do to ensure women have greater knowledge,” Gilchrest said.
Endometriosis is often thought of as a gynecological disorder because the tissue can attach to any of the female reproductive organs, including the outside of the uterus, fallopian tubes and ovaries. But it can also involve other areas, including the appendix, diaphragm and lungs.
It can also harm a patient’s mental health. Those who suffer from the disorder often deal with intense pain that can bring on depression or, in some cases, substance abuse.
Fox said she experienced that grinding pain for years. She was losing hope until she found a physician who removed all of the endometriosis and helped her manage the disorder. “He changed my life,” she said. “This is a story that needs to be told.”
