Pain that hit 'like a truck'

Worley said that at the first sign of menstrual blood, she'd make sure her calendar was clear and lay down, waiting for the pain to hit her "like a truck." She'd vomit and have diarrhea at the same time, a common endometriosis symptom, and sometimes the pain felt so bad, she felt suicidal.

"Every time I experienced it, I'd tell myself, 'I can never go through this again,'" she said.

During a typical menstrual cycle, the endometrium — which is the tissue lining the uterus — thickens to prepare for a pregnancy. If a fertilized egg doesn't come, then the tissue sheds through menstruation.

But in people with endometriosis, similar tissue grows on the outside of the uterus, providing no exit route, which can cause extreme pain, especially during menstruation and sex, alongside gastrointestinal symptoms. Oftentimes, scar-like growths called adhesions will develop between organs and can require surgical removal.

While endometriosis affects a fairly large number of women, it takes seven to nine years after a woman's first symptoms to get a diagnosis, in part because of limited diagnostic tools but also because of a lack of awareness, dismissal by doctors, and symptoms that can often resemble other illnesses.

Worley's parents never took her to the doctor to discuss her symptoms, and she said she didn't even hear the word "endometriosis" until she was in college when a professor suggested it after Worley missed class because of her pain and nausea. Still, she wasn't convinced she had the disease. "It was just so ingrained in me that this was normal," she said.

The only way to definitively diagnose endometriosis is through surgery, though some doctors will move forward without confirmation and use birth control or a new type of hormone-blocking drug to treat the symptoms that suggest endometriosis, according to David Adamson, an adjunct clinical professor at Stanford University and president of the World Endometriosis Research Foundation.

While some new technologies may be on the way, noninvasive options are limited for now. MRIs and ultrasound scans can be helpful for some patients though not for others. Multiple experts said there's not yet enough evidence to endorse tests from startups that claim to detect the disease through menstrual blood or other methods.

According to Ja Hyun Shin, chief of minimally invasive gynecologic surgery at NewYork-Presbyterian and Weill Cornell Medicine, many women struggle to find doctors who recognize that their symptoms aren't normal menstrual cramps.

That's what happened to Worley, as she was sent home from multiple doctors with no answers and some prescriptions for opioids, which she didn't feel comfortable taking because of the risk of addiction. Instead, each month, she'd take two to four times the standard dose of ibuprofen on the first day of her period.

A diagnosis, surgery, and a lawsuit

Less than two months before the date of her surgery, Worley experienced the worst abdominal pain of her life. A CT scan from the ED showed stomach inflammation, a common complication resulting from ibuprofen overuse.

After her doctor told her to stop taking ibuprofen, Worley approached her supervisor at the North Carolina Department of Public Safety and requested a medical accommodation. Since she couldn't manage her pain anymore, Worley requested to work from home one day a month.

According to a lawsuit Worley later filed, her supervisor accused her of using "excessive" sick leave and having a "poor work ethic." Worley was told the department would not provide accommodations and might even let her go. Feeling she had no other option, Worley resigned.

Matt Debnam, a spokesperson for the department, said it denies Worley's claims.

Accommodations under ADA are case-by-case — one person might qualify while another with the same diagnosis might not. A condition must "substantially limit" one or more "major life activities." When Worley filed her case, a handful of courts had said clearly that a plaintiff with endometriosis qualified while other courts didn't.

Almost two years after she canceled her surgery, Worley had the money and insurance coverage to reschedule it. On March 5, 2024, she finally had the surgery, which confirmed her endometriosis. Adhesions had stuck her right ovary to the membrane that lines the abdominal and pelvic cavity.

The surgeon cut out the lesions and inserted an intrauterine device (IUD) to give Worley lighter periods. The first period following the surgery was hard, Worley said, but the second one was "pure bliss."

While endometriosis can recur after surgery, Worley has done well so far. "The IUD plus the excision was the golden ticket," she said. "I have not had any issues since."

Meanwhile, the lawsuit moved along for almost two years. While several legal questions weren't answered, in one memorandum the judge said that Worley had "established that her endometriosis qualifies as a disability under the ADA."

This past January, Worley signed a settlement for over $70,000 and a commitment by her former employer to provide training on reasonable accommodations. No one acknowledged wrongdoing in the settlement.

The department said it settled to "avoid further controversy, expense, and inconvenience," according to Debnam.

Worley's case is one of only a few in which courts have acknowledged endometriosis as a disability. Since ADA judgments depend on individual circumstances, other people with endometriosis might not have the same outcome. But according to Jasmine E. Harris, a professor at the University of Pennsylvania Carey Law School who specializes in disability law, Worley's case could be part of a slow movement toward legal recognition of the effects of disease.

Harris said it could mirror the shift that occurred regarding fibromyalgia, which also disproportionately affects women and has been downplayed in the past. Fibromyalgia has increasingly been recognized as a serious disability, even when patients are able to mask their pain in daily life.

"I'm wondering as I watch this, and I'm watching closely, whether we will see a similar trajectory for endometriosis," Harris said.