Incurable

Adapted from my Masters Thesis at Columbia, Incurable: Three Generations of Endometriosis and the System That Failed Them All, is a three-part profile series that follows a mother, grandmother, and daughter as they navigate debilitating pain and medical misogyny.

GREENWICH, CT - “She has Stage 3,” the surgeon told Carissa and Jeffrey Kent, who were sitting in the waiting room at Yale New Haven Health Hospital.

Dr. Masahide Kanayama had found 56 lesions – growths of tissue similar to the lining of the uterus – forming outside the uterus of their daughter, Lina. They varied in appearance and severity: some were red, some white, others blister-clear. “Powder burns,” some doctors call them. “Gunshots.” Lina’s left ovary had been pushed into her back. Her bowels were so affected that they had begun generating their own blood vessels.

She was 11 years old.

“It was a relief for me when Dr. K. saw it,” said Lina’s mother, “not because I was happy she had the disease, but because I could finally say that we weren’t crazy.”

The bed in Lina’s recovery room was draped in white sheets. A wheelchair was parked in the corner, and a stack of cardboard vomit buckets sat on the bed. The hospital had authorized an overnight stay, in case there were emergency complications or Lina needed stronger pain medication – morphine, maybe, or fentanyl.

When Lina finally sat up, the first thing she said was that she was hungry. She wanted to go home. She dressed, was pushed in the wheelchair to the hospital entrance, and walked slowly to the car.

The Kents had driven almost four hours from their home in Bethlehem, Pennsylvania. Carissa’s cousin had donated hotel points, so they could stay in town the night before surgery. They had packed blankets and pillows into the backseat so Lina could be comfortable on the drive home. Her mother knew that after surgery, every cough, every laugh sends a bolt of pain through the abdomen. She packed an extra pillow for Lina to brace herself against.

Kent is 41 years old. She has dark hair that drapes over hooped earrings in loose waves, and a bold paisley flower tattoo on her forearm. She is seldom seen without her silver infinity necklace. She is the kind of person who documents everything: There’s a folder of photos on her phone going back to Lina’s first period up to this surgery, with an image of Lina in her hospital bed, small under the sheets. Lina’s hair was mousy brown, loosely waved, blond at the tips. There was a white plastic band around her small wrist, and a paper mask hanging at her chin. She looked up at Kent’s camera, smiling with her mouth lifted slightly higher on the right side, just like her mother’s.

Toward the end of elementary school, Lina’s bleeding had been so severe that she couldn’t make it through a school day.

“It was insane,” Kent said. “Nonstop.”

Her red blood cell count was low. So were her platelets. She was severely anemic, and fell behind in her classes because of it. Her parents tried homeschooling, inviting a teacher to their house outside of school hours, so Lina could catch up with other students. The dances, the sports, the social architecture of a childhood, all ground to a halt.

The rhythm was familiar to Kent. By the time her daughter was having her first surgery, she had undergone nine.

Each one came at a huge cost. “I felt like a horrible parent,” Kent said. “I felt like my kid was going to die.” She and her husband were forced to withdraw funds from their 401K accounts. Family and friends donated any money they could, and one uncle launched a GoFundMe page. The cover photo was of Lina looking straight into the camera, with frizzing curls and a toothy smile.

The fundraiser soon caught the attention of their neighbors in Bethlehem. People gave from their own pockets, even selling items to raise money. They were showing up in ways Kent had not expected and would never solicit. “I was embarrassed,” she said, “but it gave me faith that there are good people out there.”

Today, repeat surgery remains the primary treatment available to most endometriosis patients. There is no approved pharmaceutical cure. Hormonal treatments can suppress symptoms, but cannot eliminate the disease. The surgical intervention meant to clear lesions can, over time, become a significant risk.

Lina’s diagnosis did not alleviate her pain. It could not cure the incurable. But the Kents were one step closer to treating the thing that was pulling their daughter apart.

In February 2026, the American College of Obstetrics and Gynecology released new guidelines, stating that surgical intervention is no longer required to formally diagnose endometriosis. Thousands of dollars and hours of recovery will be saved. Years lost to feeling — or being made to feel — crazy, will be won back. But guidelines cannot undo the decades of dismissal that shaped three generations of one Pennsylvania family, and thousands like them. The structural failings in women’s health research that made those years possible permeate.

Full piece available upon request.

Take me home!

Imani Amanullah Narrative Journalist & Documentarian

Imani Amanullah
Narrative Journalist &
Documentarian