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One day, a roommate found Corinne Foxx balled up on the bathroom floor in the grips of menstrual pain. Since she started her period, Foxx experienced intense pain, nausea, chronic fatigue and bladder discomfort during menstruation. She thought that’s simply what a period was like.
“I had a roommate tell me, ‘Corinne, this is not normal,’” Foxx, producer, actor and daughter of Jamie Foxx, tells TODAY.com. “That was the moment for me where it just changed the trajectory of my life. And then I went on this journey to start figuring out, ‘Well, if it’s not normal, then what is it?’”
Foxx, 29, later learned she had stage 4 endometriosis, which occurs when tissue similar to the lining of the uterus grows in other places in the body and forms lesions. The condition impacts 11% of women between the ages of 14 to 44, according to the U.S. Department of Health & Human Services Office on Women’s Health.
“This isn’t a uniquely American kind of thing. This affects upwards of 200 million women worldwide and about 6 and a half million here in the U.S.,” Dr. Tracey Haas, executive director of the Endometriosis Foundation of America, told Foxx during a March 28 Instagram Live. “(Endometriosis) can be mistaken for lots of odd, different things. It’s common (to have) seven to 10 years of a delay from the first symptom to actually getting a diagnosis.”
For Foxx, doctors dismissed her concerns, and she visited “five or six doctors” who told her she had everything hormone imbalances to possible bladder cancer, she recalls.
“It was really a terrifying process and a frustrating process,” she says. “There’s a lot of medical gaslighting that goes into this journey. I think women of color, especially, are often silenced or not believed when they come in with symptoms.”
Still, she kept searching for help.
“You just have to keep showing up for yourself. I learned that no one’s going to fight for my health more than me,” she says. “That really empowered me in the long run despite being discouraged.”
Eventually, Foxx visited a doctor who knew what was causing her symptoms.
“Finally, a doctor had said, ‘I think this is endometriosis,” she says. “I didn’t even really know what that meant.”
The doctor told her she could schedule surgery without giving her any information about what the surgery was or what having endometriosis meant. At first, receiving that diagnosis didn't feel validating because she felt unsure what it was and what surgery she needed.
“I look back at that period of my life, and as difficult as it was, it was super empowering because I had to trust myself. I had to listen to my gut, literally,” she says. “ I came out stronger.”
Foxx began reading medical journals, following online groups and listening to podcasts to learn more about endometriosis.
“I did my own research and learned about the disease and learned about the right surgery that I needed,” Foxx says. “Then I got a specialist, Dr. Iris Orbuch, who ended up doing my surgery and ended up elevating so much of the disease for me.”
In October 2018, she underwent excision surgery with Orbuch. Considered the gold standard treatment for endometriosis, per the Endometriosis Foundation of America, the minimally invasive surgery involves specially-trained surgeons who remove the endometriosis lesions.
The surgery reduced Foxx’s pain and symptoms.
“I’m feeling so much better. The surgery I got changed my life,” she says. “I’m in semi-pain free — endo has a mind of its own sometimes and somedays aren’t the best — but for the most part, I’ve done so much better and it’s such a privilege.”
Raising awareness of endometriosis
Through her doctor, Foxx learned about director Shannon Cohn’s hope to make a documentary, Below the Belt. Foxx became an executive producer of the film, which was released in 2022.
“I (told Shannon), ‘I’ll do everything I can to help illuminate your new film and get it in front of as many people as possible,’” Foxx recalls.
The film focuses on four women with endometriosis and the struggles they encounter.
“We have women at different places in their lives,” Foxx says. “We have a young woman who is still in high school. We have a woman who wants to have a baby.”
Cohn and other producers, including actor Rosario Dawson, recently screened the film for members of the U.S. Senate.
“What’s really special about this is that we are getting bipartisan support,” Foxx says. “The goal of the film is education and awareness and also advocacy to get more research dollars for endometriosis so that we can find more affordable treatments, more affordable and effective imaging so you don’t have to do a surgery to find out if you have endometriosis.”
MRIs and ultrasounds do not always detect endometriosis, so definitive diagnosis is provided with surgery, according to the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Some insurances do not cover excision surgery, making it unattainable for many.
“I am advocating for making these surgeries more accessible. My surgery, I had to pay out of pocket,” she says. “Not a lot of people can afford that. Where I see there’s a lot more room for change is just making the treatment available and accessible to all people.”
Foxx also feels passionate about educating others about endometriosis and will serve as an ambassador to the Endometriosis Foundation of America's ENPOWR program, which will teach school-age children about the condition.
“If I had this information when I was learning about periods in my fifth grade health class, it would have made a world of difference for me,” she says.
Foxx tries talking to her sisters, who are 14 and 15, about it, but they often don't pay attention to their "so not cool" older sister, she says.
After her diagnosis, Foxx learned she had an aunt and grandmother with endometriosis.
“It’s something that was uncomfortable to talk about. Of course, it’s an intimate area of your body,” she says. “I want to (shed) light on reaching out within your own family and seeing if there is family history.”
The Endometriosis Foundation of America honored Foxx’s work advocating for people with endometriosis as an ambassador with a Blossom Award during its Blossom Ball on March 20. She says listening to Lena Dunham and Halsey's speeches when they received the Blossom Award helped her when she was trying to understand what an endometriosis diagnosis meant.
“I felt so seen and I felt like, ‘Wow these incredibly successful women also have endometriosis, and maybe this isn’t the death sentence I’m thinking it is,’” she says. “For me to be standing on that same stage and sharing my story, it’s very emotional, and I just hope to be able to inspire women the same way that I feel inspired.”
Endometriosis and mental health
Foxx also serves as an ambassador for the National Alliance on Mental Illnesses (NAMI), and she combined her two passions into one by hosting an Instagram Live on March 28 about endometriosis and mental health.
“There’s a mental component to it that we should be having a conversation about,” she says. “We’ve been working on a form of a campaign to illuminate the relationship between chronic pain and mental health. … There is trauma, there is depression, there is anxiety. So much goes hand-in-hand with living with chronic pain.”
Dr. Christine M. Crawford, associate medical director of NAMI, notes that often people who experience chronic illness and pain also experience worsened mental health.
“It’s (fairly common) to see an overlap with symptoms of depression, anxiety and chronic pain-related conditions like endometriosis,” she told Foxx during the Instagram Live. “It’s important jut to clarify what depression is because a lot of people tend to confuse it with symptoms of sadness or low mood.”
Crawford also encourages people to share how they’re feeling with loved ones.
“Oftentimes we feel as though because what we’re experiencing whether that be emotional or physical pain is not readily visible to everyone and that reinforces the sense that we have to keep it to ourselves,” she said. “People who have good, strong and reliable social connections do well overall in terms of their physical and mental wellbeing. We wouldn’t want those types of social ties to be disrupted because you’re keeping everything to yourself.”
Even discussing endometriosis among friends and family can go a long way to help others.
“Teach one person today what endometriosis is. We have to spread awareness. We have to decrease the stigma,” Haas said. “These types of conversations are so helpful for women who may not have the words or the language … to say what’s happening.”
Foxx hopes her experience helps people of color with endometriosis feel less alone.
“I am aware that me sharing my story is going to impact people who look like me and I hope that people see themselves in me and see a woman of color talking about her experience,” she says. “My hopes for being an ambassador with Endo Found is to make someone else’s journey a little bit easier.”
Throughout the month of March, TODAY.com is celebrating women across generations who have made history and continue to move the conversation forward by breaking stigmas, sparking dialogue and inspiring the next generation.
This article was originally published on TODAY.com