It is a painful condition, and experts say it is often undiagnosed: endometriosis.
The disorder impacts a woman’s reproductive system, causing her to feel cramps and other hormonal symptoms to the max. Endometriosis can even lead to infertility.
Now there are new conversations about the disorder. State Rep. Jillian Gilchrest, a Democrat representing the 18th District of West Harford, has started an Endometriosis Working Group. The objective is to ultimately change state laws.
Siobhan Feliciano, of Old Saybrook, has been living with endometriosis since she was a teenager.
“I was having this pain in my abdomen, didn't know what it was,” she said. “Bloating, fatigue, heavy periods. I started to get really sharp pains that were almost like debilitating.”
At a walk-in-clinic two decades ago, the doctor delivered an initial diagnosis.
“He said, ‘You know, I think you might have endometriosis.’ And I was like, ‘I don't even know what that is,’ Feliciano said.
The condition would change her life.
Endometriosis impacts 1 in 10 women, causing inflammation and pain in the reproductive system.
For Feliciano, it had even more severe consequences. After undergoing five surgeries, she lost her ability to have children.
“It's really, really upsetting. It was really hard, because if anyone knows about adoption, or sort of the more advanced fertility treatments, they're not inexpensive, and there's no guarantee,” Feliciano said.
At the Yale School of Medicine, Dr. Hugh Taylor, professor and chair of the Department of Obstetrics, says although the condition is common, it is difficult to diagnose.
“The traditional gold standard to diagnosis endometriosis was a surgical approach, but you can imagine that pain has to be pretty bad before you agree to a surgery,” he said.
Taylor adds that endometriosis is often misunderstood.
“Right now it's nearly 10 years from the time someone has classic symptoms of endometriosis until the time they get diagnosed. About two thirds of them are misdiagnosed initially,” he said.
Something as simple as birth control can curb the symptoms, but without a diagnosis, Taylor says women consider suffering.
“When I talk to women who are newly diagnosed with endometriosis, they tell me the first response that they got from their friends, their family members, and sometimes even health professionals is, ‘Oh, menstrual cramps are normal. Just take a Motrin, toughen up,'” he said.
That is why Gilchrest launched the new working group, hoping to change the culture surrounding the disorder.
“What we heard about is the normalization of female pain,” she said. “When women experience a really painful period to the point of throwing up, or two weeks of bleeding, they're just being told by their medical providers, by their family, by their friends, ‘That's normal. That's what being a woman is.’ But it's not.”
The group had its first virtual meeting last week. When the General Assembly Session starts in January, Gilchrest will bring legislation proposals based on feedback from the group.
“I'd like to better understand what insurance currently covers and does not,” Gilchrest said. “In order to get a diagnosis of endometriosis, there has to be surgery. Can't we do more? And then getting that training to health care providers so we can get some early diagnosis.”
Decades after first feeling symptoms, Feliciano has overcome endometriosis. A partial hysterectomy at age 40 finally put the pain to a stop.
“The past few years since the hysterectomy I’ve felt awesome. You know, no issues,” Feliciano said.
However, before that, she became a mom, able to have children thanks to an egg donor.
“I was lucky that I was successful on my first attempt,” Feliciano said.
She is loving every minute with her twins, who are now 9.
“It’s really great. I'm a total soccer mom, dance mom, you know, with them all the time. And it's really awesome,” she said.
Yet it was a journey, and one that the working group aims to make shorter and easier for other women in the future.
“As a feminist who's done women's health issues for some time, it just strikes me once again, we've under-researched something that disproportionately impacts women,” Gilchrest said.
The Endometriosis Working Group will meet every other Monday through December, apart from next week, when the meeting will be held on Tuesday, October 12 due to a government holiday.