Padma Lakshmi was diagnosed with endometriosis in 2006, after experiencing symptoms for 23 years — and she’s been advocating for people with the condition ever since. About one in ten people born with a uterus have endometriosis, a condition in which tissue similar to the uterine lining grows outside the uterus, causing severe pelvic pain, particularly during menstruation or during or after sex. Other symptoms include heavy periods, fatigue, digestive issues, and in some cases, difficulty conceiving.
Lakshmi co-founded the Endometriosis Foundation of America (aka EndoFound) in 2009, and in the decade since, endometriosis awareness has grown considerably. As EndoFound celebrated its 10th annual Blossom Ball on last week, Lakshmi looked back at how far endometriosis awareness has come — and how much work there still is to do.
“One of the things I’m most proud of is that we started an international conversation that really wasn’t happening,” Lakshmi told Refinery29 on the Blossom Ball red carpet. “And now there are others — Endo Warriors, Endo Sisters, I see them on social media and I love it. They were the seeds we planted that are now blossoming.” Lakshmi has done her own part to spread awareness on social media, posting photos detailing her endo symptoms. “No matter how well things are going, #endo can always knock you down. It’s that invisible ball and chain that shackles your whole life,” she wrote in a post last year.
Model Alaia Baldwin, who received EndoFound's Horizon Award, tells Refinery29 that social media has been instrumental for people with endometriosis to share knowledge and support. “When I was first diagnosed in 2016, I remember going on Instagram and putting in the hashtag #endometriosis and finding nothing — and I found that to be really frustrating,” she says. “I promised myself that once I had my own endo for the most part figured out, I would help anyone I could.”
She adds that she's found a lot of support. “I’ve recently posted one photo that got the most likes I’ve ever gotten and it was a photo where I had a really bloated ‘endo belly,’” she says. “I got hundreds of messages on private DMs [from young people who had endo or were wondering if they had endo], and I still check in on them.”
As people have grown aware of the existence of endometriosis, Lakshmi says that the fight should now focus on calling for education, research, and access to healthcare. Media coverage is now "saying what it is, but they’re not really asking the questions," she says. "Why don’t we have more research? Why don’t we have a way to detect it without going in for surgery? Why isn’t there a blood test for endometriosis? Why isn’t [laparoscopic] surgery covered by all insurance companies?”
In a speech at the event, Lakshmi shared her own endometriosis story — including that she was once told she'd never have children. "I really wasn't thinking about having a baby yet, but when someone tells you you can't, at least if you're me, of course you want to, right away," Lakshmi said. "And I was very saddened by that. Because of the immense pain and sadness I felt, [endometriosis specialist and EndoFound co-founder] Dr. Seckin counseled me to talk about that. Beyond restoring my motherhood — I have a nine-year-old daughter named Krishna — he taught me to open my mouth, he taught me to use my voice, he encouraged me to speak out about an issue that is incredibly personal and not easy to talk about."
While EndoFound is working to increase education about endometriosis for both young people and medical professionals, right now, many people still have to fight for their symptoms to be taken seriously. “You have to advocate for yourself,” Lakshmi tells Refinery29. “You can’t just sit back until you’re in a critical moment — don’t wait until you wind up in the emergency room.”
Watch Lakshmi's speech at the event below:
EndoFound is raising money for much needed research to help with early endometriosis diagnosis and education. To donate, visit endofound.org or text “endo25” to 20222 to donate $25 / “endo” to 20222 to donate $10. Please sign the petition to support NYS endometriosis legislation. #letstalkperiod.