In 2014, Lupita Nyong’o won an Oscar for her first feature film role in 12 Years a Slave. She also appeared on the cover of Vogue, was crowned a face of Lancôme, and was declared Woman of the Year by Glamour and Most Beautiful Woman by People. That same year, Nyong’o discovered she had fibroids, more than 30 of them, that she would have to undergo surgery to remove. “I was experiencing all these highlights, and then that came as a shock,” recalls Nyong’o.

Getting to a diagnosis required persistence on her part. Nyong’o was initially dismissed by her doctor, but kept insisting that something felt wrong. “I had actually been experiencing symptoms for a while, but hadn’t been taught to listen to my body,” she shares. Fibroid symptoms can include heavy menstrual bleeding; longer, more frequent, and more painful periods; pelvic pain or pressure; frequent urination; and, sometimes, fertility challenges. Because fibroids are a long-term condition, those symptoms can be chronic. They can also, for many women, be something they ignore or brush off—a fact that Nyong’o is hell-bent on trying to change. “When I was a teenager learning about my reproductive health, what I was told was that as a woman you should expect to be in pain once your period starts,” she says. “So when my period was changing, growing longer, and I was cramping and clotting more, I didn’t know to sound an alarm because I thought it was my lot in life as a woman to be uncomfortable and in pain.”

That notion is not an unusual one. Women’s lack of body literacy and what we are taught from a young age about enduring pain, both directly and overtly, is widespread and deeply entrenched. “We have communicated to women that pain is normal and that it hurts to be a woman,” says Maryland senator Angela Alsobrooks, who has teamed up with Nyong’o to push Congress to funnel funding into fibroid research. It’s desperately needed.

“Only .03% of our research dollars go to studying a condition that affects 80% of all women by the age of 50,” says Alsobrooks. And among Black women, who are disproportionately impacted by fibroids, that percentage is even higher. Last year, Alsobrooks, along with Wyoming senator Cynthia Lummis and Ohio Congresswoman Shontel Brown, introduced the Uterine Fibroid Intervention and Gynecological Health Treatment Act (U-FIGHT), legislation that aims to boost federal investment in research funding, spread awareness, address disparities in care, and improve early-detection screenings. Those screenings are critically important, because catching fibroids earlier would not only mean improving someone’s quality of life sooner, but also doing so without having to resort to more invasive means such as a hysterectomy (a common treatment for fibroids).

Lupita Nyong’o