Over the last decade, this writer has helped hundreds of women with endometriosis tell their stories to give them a voice, spread awareness about the disease, and provide readers who may have symptoms but no answers with someone they can relate to.
While Tracy Lewis’ story is like many others in terms of the pain she felt and the years it took to diagnose the disease, how she got it—after 50 years of never having it—is a first for these ears.
“It was October of this past year. I’m 59 years old and writhing in pain on the bathroom floor. It was unlike any pain I’d ever experienced,” Lewis said. “When my husband took me to the hospital, they did a CT scan and said, ‘Your uterus looks like it’s on fire.’”
Nine years ago, at age 50, Lewis was going through perimenopause—sometimes having a regular period and other times spotting. She said her gynecologist suggested that she do a uterine ablation to stop the periods completely.
“I had it done, and sure enough, my periods stopped,” Lewis said.
But that’s when her pain started.
In the first half-century of her life, Lewis never had any abnormal pain with her periods. She got pregnant and gave birth three times with no complications. She never had a single endometriosis symptom. But every month or every other month in the years after the surgery, Lewis hurt a lot. Sometimes on her left side. Sometimes on the right. Doctors couldn’t determine the cause.
Lewis’ sister, who lives in New York City, told Lewis that her symptoms sounded like those of her teenage daughter, who has endometriosis. She suggested that Lewis come to New York to meet with her daughter’s specialist, Dr. Tamer Seckin, cofounder of EndoFound. Lewis met with him on Halloween 2023.
“I had had multiple ultrasounds, MRIs, and scans before that visit, and nobody ever told me what Dr. Seckin told me after his ultrasound,” Lewis said. “He said it looked like I had endometriosis and a lot of it. I was taken aback, but the symptoms matched what was happening.”
Lewis had surgery a month later. Dr. Seckin diagnosed her with adenomyosis and stage IV endometriosis. The diseased tissue has adhered to several organs and caused digestive issues and decreased bladder capacity. The surgery, she said, also revealed how she likely got the disease.
“Dr. Seckin told me that he believed when the gynecologist did the ablation nine years ago, she didn’t ablate the uterus—only the cervix. He saw no signs of ablation while exploring the uterus,” Lewis said. “So, during all that pain that started after the ablation, I was still having periods, but they weren’t leaving my body because the cervix was closed. Dr. Seckin said he’d never seen a case like this.”
Lewis is now pain-free and back to living the life she had before the ablation surgery.
“The (endometriosis) surgery was life-changing for me,” she said. “A week later, I did 21,000 steps around New York City because I felt so good. I’ve been very careful during my recovery, but I’ve bounced back quickly.
“But what bothers me,” she continued, “is the word endometriosis is something I hadn’t heard until I was 59 years old. How is that possible? I am a huge health advocate for my family and me. I’m on top of all that. Yet that one word never entered my vocabulary or was uttered by any of my doctors in all those years. That’s crazy!”
On March 2 and 3, Lewis and her son, Stryker, 24, will share more details of Lewis’ journey over the past decade at the 15th Annual Endometriosis Foundation of America Patient Symposium in New York City.
“For the last several years, Stryker has been with me and has seen the issues I’ve had,” Lewis said. “We’d go to the gym and he’d see me in pain, or he’d see me sitting on the sofa with heating pads trying to get over this. He’s been very emotionally attached to what I’ve been through, so I’m glad he’ll be there with me for this.”
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.
