Ciji Castro has three young daughters. She’s also suffered through seven miscarriages due to endometriosis, which took two decades to diagnose. On March 2 and 3 in New York City, she will speak at the 15th Annual Endometriosis of America Patient Symposium.
Castro shared her story at the 2023 symposium. This year, she will take the stage with her husband, Miguel, for a presentation titled “Endo at the Dinner Table.” They will discuss how their family has navigated endometriosis, while their eight-year-old and five-year-old daughters will explain their understanding of the disease in a short video aired at the event.
Research has shown that the risk of developing endometriosis is higher—seven to ten times more likely, according to some studies—in women who have a close relative with the disease.
“I’m a strong believer that if we prepare these kids to know the signs and symptoms and what can be done to help them, they won’t be scared and will be able to advocate for themselves,” Castro said. “I work with EndoFound’s ENPOWR Project, which is for high school students, but I believe you can start as young as you want.”
Millions worldwide know Castro as the Domestic Gourmet, a moniker she’s used since 2021 when she started teaching, through YouTube and social media, how to cook gourmet dishes from scratch using garden ingredients. As her popularity grew, she expanded to traveling the country and interviewing top chefs, including several at Michelin-star restaurants. Castro’s global audience on all platforms today is more than seven million. She also creates and shares recipes with anti-inflammatory properties that include infused oils and spices made from scratch and gears them toward children.
“I cook with my kids, and what sets my work apart is that my recipes include notes on how to incorporate children of all ages in the cooking process,” Castro said. “My goal is to create these kid-friendly, youth-friendly recipes that won’t be detrimental to an endo flare-up.”
Castro’s journey with endometriosis dates to her childhood. She had her first period when she was nine and suffered from day one with severe cramps and vomiting.
“I would be bedridden for the first day, sometimes for two or three days, and I would always miss school every month,” she said. “I was told it was part of becoming a woman—that narrative we hear so often.”
Castro would fight through symptoms for nearly 20 years with no solutions or correct diagnosis. When she was 28, she had surgery to remove a mass on her left ovary, which is when she was finally diagnosed with stage IV endometriosis. She would have a second surgery four months later, a third one two and a half years after that, and a fourth one last year at age 38.
“And in between, there were many, many hospital stays,” she said.
Even before her most recent surgery a year ago, which was after a pain attack that brought her to her knees and to the ER in an ambulance, she was admitted by the ER staff as a gastrointestinal patient—even though she told them she had stage IV endometriosis.
“I’ve been through it all,” Castro said. “I’ve done all the treatments, seen all the specialists, taken all the tests. I’ve seen what 30 years of endo treatment looks like, from people having no idea what endometriosis is to all these new drugs coming out to me trying all these new drugs.”
Her surgery last year was her first with Dr. Tamer Seckin, co-founder of EndoFound.
“He found my rectum connected to my cervix, my bladder connected to my uterus, cysts on my ureters, my left cavity completely filled with an endometrioma. It was a massive surgery.”
Castro said when she woke up from surgery, she walked to the bathroom on her own.
“The relief I felt was incredible,” she said. “It just goes to show how painful endo is. Women with endo are the strongest, most badass people I know. You don’t even realize the pain tolerance you have until it’s gone. I feel amazing today.”
A significant part of navigating this disease has been answering her children’s questions.
“When it came to my last surgery, it was important for us to let them know what was going on, what was involved in the surgery, and that it should fix this so that I’m not going to the hospital as often.”
That interaction and the importance of it is what she and Miguel will share at the symposium.
“We teach our three girls everything,” Castro said. “When they have a question, we break it down and they’re going to learn. The two weeks I was in New York for my surgery last year was the only time my kids didn’t struggle with me being gone because they knew I was there to fix the problem.”
The 15th Annual EndoFound Patient Symposium will be from 9:30 A.M. to 4:30 P.M. on Saturday, March 2, and from 10 A.M. to 4 P.M. on Sunday, March 3, at the 4W43 Building, 4 West 43rd St. in New York City. For tickets, visit www.endofound.org/patientday.
To learn more about Ciji Castro and her work, visit www.domesticgourmet.com.
