Lily Brooks O’Briant to Share Endometriosis Story at Benefit Concert
Lily Brooks O’Briant shares her endometriosis story.
When Lily Brooks O’Briant was filming her Apple TV+ dramatic series Life by Ella last year, she curled into a ball on the floor between takes to alleviate her pain.
“As soon as they would call ‘rolling,’ I’d stand up and do the scene,” said Lily Brooks. She played Ella, a middle school student with cancer. “When they’d call ‘cut,’ I’d lay down right there and wait for the next scene to begin.”
Lily Brooks, 16, will share her endometriosis story and sing an unreleased song she’s written titled Romeo and Juliet at the second annual Warriors Benefit Concert. The show, to benefit EndoFound, will be at 6:30 P.M. Saturday, June 24, at DROM in New York City’s East Village.
The actress, singer, and songwriter was born in Memphis and lives in Los Angeles. She made her feature film debut at eight years old in Shark Lake with Dolph Lundgren, toured the country a year later as Matilda Wormwood in the Broadway musical Matilda, and now stars as Lucy Romalotti in the daytime soap The Young and the Restless.
Lily Brooks learned this week that she will have surgery for her endometriosis later this summer after suffering through three and a half years of symptoms, which began soon after her first period when she was 13.
“I felt excruciating pain, fatigue, migraines, nausea, and had a hard time eating. And within the first two months, I started passing really large clots,” Lily Brooks said talking about her endometriosis story. “My mom told me this wasn’t normal, that this wasn’t what my period was supposed to be like.”
Lily Brooks went to several doctors over the next couple of years. A gynecologist recommended that she change her diet. Another doctor performed an appendectomy, though Lily Brooks questioned post-surgery if she’d had appendicitis as her pain continued. A pediatrician suggested she had an eating disorder. And a therapist said it could be allergies.
“The point when I really decided something was wrong was last summer when we were coming home from a family vacation. I was in so much pain that I couldn’t even get out of the car when we got to the airport and had to catch a later flight home,” Lily Brooks said. “That’s when my mom and I knew we had to figure out what was happening. After doing lots and lots of research, my mom was sure it was endometriosis.”
Lily Brooks returned to her gynecologist last fall, who concurred that she might have the disease and put her on birth control. It eased the pain, but only for a few months. The mother and daughter then began to wonder if the pain’s source was stress and anxiety. This is what previous doctors had suggested.
“She’d been filming for four and a half months as the lead in Life by Ella,” Hope said. “It was long hours and very intense with a wide range of emotions, so it was easy to say that maybe the pain had increased because of filming. But I think the reason we thought that was because a lot of doctors made us think that was it.”
Hope and Lily Brooks were sure this spring that stress and anxiety had nothing to do with it.
“She was so happy all spring,” Hope said. “She’d just finished a short film and had nothing going on but school, which wasn’t a heavy load. She was enjoying writing her music. And Young and the Restless was pretty easy for her after Life by Ella.”
A turning point came three months ago when Australian television personality and conservationist Bindi Irwin went public on social media with her endometriosis battle.
“Her post was really touching,” Lily Brooks said. “And then (in May) I was invited to the Steve Irwin Gala Dinner in Los Angeles through my PR. There, I had the chance to talk to Bindi and share my endometriosis story with her. She encouraged me not to be afraid to take action and get answers about what was happening. That pushed us to go forward with finding a specialist.”
But that wasn’t easy.
“We went to a gynecologist first who gave us the names of two specialists in Los Angeles,” Hope said. “One couldn’t even get her on the waiting list until September. The other said they could see her in May 2024. So I started calling around, and the first two I called were unaffordable. I called ten more after that and finally found one I could afford who had a cancelation and could see her immediately.”
It was a nightmare visit.
“I was optimistic before I went in to see him, but it didn’t go well from the start,” Lily Brooks said. “He was very dismissive about what I was going through. Every time I tried to explain my experience, he cut me off. He told me not to let the pain get me down or break me.”
“Thank God I was there,” Hope added. “That’s what he said to her, word for word—‘Don’t let the pain get you down or break you.’ I about lost my mind, I was livid. I don’t get mad very often, but I’m still mad now thinking about it.”
Hope extended her search for a specialist beyond Los Angeles and found Dr. Seckin, founder of EndoFound, in New York City. After a video call with him, Lily Brooks and Hope took a red-eye flight across the country this past Monday. Lily saw Dr. Seckin for an exam on Wednesday and will return in a few months for surgery.
“He can’t know for sure what it is until he goes in there and looks, but from his tests and exam, he believes I have peritoneal endometriosis,” Lily Brooks said. The peritoneum is the membrane that lines the abdominal cavity and is where most endometriosis starts.
“It’s really nice to finally be able to put a name to it,” Lily Brooks said. “I’m just happy to know what the next steps are. I feel like I can breathe now.”
Considering many women with endometriosis do not receive a diagnosis for a decade or more, and well beyond their teen years, Hope realizes how fortunate Lily Brooks is to have received a diagnosis so young and offers three pieces of advice for parents.
“The first is to do as much research as possible,” Hope said. “The second is to write things down so that you have a concrete list of her issues when you see a doctor. I told Lily Brooks last summer that I needed to know everything she was feeling and when, and that’s when I associated it with her cycle. And the third is don’t become complacent. Just because this happens to her frequently and you don’t know why doesn’t mean you should accept it or that she should have to live with it. It’s not acceptable.”
Lily Brooks urges every girl and woman to stand up for herself and fight for their endometriosis story to be heard.
“The biggest thing is don’t let anyone tell you that what you’re feeling isn’t real,” Lily Brooks said. “It’s not normal to feel that much pain. If you do feel it, something’s wrong, and there are people who will believe you and want to help you.”
The Warriors Benefit Concert is at 6:30 P.M. on Saturday, June 24, at DROM in the East Village. All proceeds will be donated to EndoFound. A dozen artists, including Lily Brooks, will perform. For tickets, visit https://dromnyc.com/event/warriors-endometriosis-foundation-of-america-fundraiser.
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