By Christina Hernandez Sherwood‍

Shireen Saxena has endured severe menstrual pain — along with headache attacks and intense stomach distress — before, during and after her monthly cycle for more than 15 years.

Saxena, who works in health care, sought relief from countless doctors, some of whom simply dismissed her pain. Others misdiagnosed her condition, suggesting irritable bowel syndrome, a pulled muscle, and even stress. One doctor told her to try eating burned toast and drinking black coffee.

When the pain became so intense in 2020 that she could “barely think,” Saxena took a medical leave, which in Germany, where she lives, was almost fully paid. Yet she returned to work two months later without a diagnosis. “Chronic pain is a very physically draining thing,” Saxena said. “I just had so many awful days of feeling like it was a lost cause.”

In a new role at Ada Health, Saxena decided to input her symptoms into the company’s AI-powered symptom assessment and care navigation platform on a particularly bad pain day. The top possible cause: endometriosis, a condition in which tissue similar to the lining of the uterus grows outside the uterus.

A Chronic Condition With Limited Treatment

Although her gynecologist had previously ruled out endometriosis after an ultrasound, Saxena decided to pursue this new lead. (Surgery is needed to diagnose endometriosis, which is often undiagnosed or misdiagnosed for years.) A laparoscopy confirmed it: Saxena was among the 10% of women worldwide affected by endometriosis.

Treatments for the condition are largely limited to pain management and preventing further tissue growth. For her part, Saxena now takes a hormonal treatment to ease symptoms, but she continues to endure high-pain days. “Half of my brain is always distracted by my pain,” she said. “I’m constantly feeling a stabbing pain around my ovaries and a shooting pain down my leg. I’m always thinking about it.”

Women with endometriosis lose an average of 5.3 hours of work each week due to employee presenteeism, which means they work while experiencing symptoms that make them less productive, according to a study on how endometriosis impacts work. Another hour a week is lost to absenteeism. The business cost of this lost productivity? More than $10,000 per year for each employee with the disease.

How To Take Action

There are several steps employers can take to make their employees with endometriosis more comfortable — and productive — in the workplace, Saxena said.

One suggestion is for employers to plan for the return-to-work period for an employee who was on medical leave by, for instance, setting up a personalized return to work place or a back-to-work interview, depending on the employee’s comfort level. “People can feel really self-conscious returning to work,” Saxena said. “I'd love for medical leave to be more normalized” by more people, especially managers, having open conversations about it. “Medical leave isn’t always because you’re dying of a condition. It can be mental or physical. It can be burnout, treatment or pain.”

At the same time, the employee who was on medical leave might have received a new diagnosis that changed their relationship with their body and the way they present themselves, Saxena said. 

“This is something that has changed the person’s world,” she said. “A formalized process… welcoming the person back and asking, ‘What is it that you need? How can I support you?’ would really make the person feel seen.”

Workplace leaders can also help by offering flexibility and normalizing behaviors such as turning cameras off for Zoom meetings and taking walking breaks during the day, Saxena said. “A flexible work environment means that if you’re having a high-pain day and need to turn off your video and put a hot water bottle on your stomach while you’re running a meeting, you can,” she said. “That is so crucial.”

Saxena said she’s found that kind of flexibility at Ada Health, where the leadership team is supportive of employees with chronic conditions like endometriosis. Their encouragement inspired Saxena to open up about her condition, which in turn led her to start My Ada Story, a LinkedIn campaign in which the company’s employees share how the app aided them on their path to diagnosis.

“I did the first story about endometriosis,” Saxena said. “We had someone talk about their [multiple sclerosis] story, and someone else talk about their rare autoimmune disease. It’s so cool to see how people are talking much more openly.”

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‍This article is the fourth installment in the Health Action Alliance’s six-part series on the Great Disrupters — a group of costly and “hidden” disorders and diseases that are both chronic and chronically under-diagnosed. Each week, we delve into one of these Great Disrupters, sharing personal stories and expert interviews.

Keep up with the full series here.