If she ever wrote one, Winnie Chan knows what the title of her memoir should be.
“I would call my story From Graduation Gown to Hospital Gown,” says Chan.
The 30-year-old endometriosis sufferer and co-star of EndoFound’s viral “I Am 1 in 10” video (above) says since her May 2017 graduation from New York University, she has endured a hellish series of procedures and complications from endo. She landed on the operating table twice in six months for two excision surgeries totaling 22 hours. She now owns a Master’s degree in healthcare management, but for 14 years and counting, Chan admits, the real test has been managing her own ailing health, which has included months of wearing an ileostomy bag after having portions of her endo-ravaged bowels removed, other times a catheter, sometimes both.
Her periods first began at age 16, and from the start, they were so bad that she scheduled her life around them. At 19, an OB-GYN removed multiple ovarian cysts. “One was the size of an orange, and two were the size of ping pong balls,” recalls Chan. “I thought that you remove them, and they'll be gone.”
Soon, other sly endo-symptoms sprung up. “I would eat a lot of Advil and all these other painkillers, and it got to the point where it was so bad, that I would crawl into the bathroom and have all these digestive issues.” The pain was so constant that Chan gave up her medical school acceptances. She was in and out of ER's, and still had no answers. “I would just stay there for four, five hours, and they did my CAT scans, and nothing showed up.”
For the next decade, Chan’s undiagnosed endo spread like wildfire throughout her pelvis, binding organs together and ravaging her reproductive system.
‘They drilled a hole in my kidney’
After that May graduation, Chan jetted off on a dream trip to China—but endo had other plans. She was unable to urinate properly and had sharp pains in her right abdomen. In the ER, “They thought it was kidney stones and then immediately I decided, You know what? I gotta come back to New York City early.” Once home, she checked into Mount Sinai hospital where doctors suggested placing a stent into her ureter, the tube that transports urine from the kidney to the bladder, to free up the flow. But doctors found an impasse and had to take a far more painful route. “They drilled a hole in my kidney, in my back” Chan explains, “because they weren’t able to put the stent up from below.” Two months later, the urinary problems worsened, and so did the periods. Chan booked an appointment with EndoFound co-founder and endometriosis surgeon Dr. Tamer Seckin at his private NYC practice. During her visit, Seckin immediately recognized that Chan’s urinary and menstrual problems were a sign of advanced endometriosis. “He said, ‘If you were my daughter, I’d send you to the ER right away.’”
The next time Chan and Seckin met again, she was being wheeled into the OR at Lenox Hill Hospital for what would be a 9-hour long surgery on July 31, 2017. Seckin called in a team that included urologist Dr. Michael Brodherson, and general surgeon Dr. Panagiotis Manolas. When Chan awoke, she learned her frightening diagnosis. “It was Stage IV Endometriosis and frozen pelvis.” Frozen pelvis occurs when endometriosis lesions are so widespread that pelvic organs become firmly fixed to pelvic bones, making them immobile or frozen. Endometriosis was also found in Chan’s bowels, including her rectum, so Seckin and his team performed a bowel resection by removing parts of her bowel. They also solved the mystery behind her urinary problems: a condition called hydronephrosis, or when a kidney swells due to a build-up of urine. “My endometriosis had actually wrapped around my bladder and wrapped around my ureter.” Seckin performed a ureter resection to remove endometriosis from her bladder and ureter, and added a new stent. But the success of the surgery was short-lived. She was hospitalized again for an infection around her surgical wounds and then once more when she developed sepsis following a subsequent procedure to replace her ureter stent. In December, the painful periods of the past came back, with a very troubling new symptom: shooting leg pain. An MRI would reveal Chan had frozen pelvis again, barely four months after her 9-hour long surgery to clean up all traces of endo. “It actually reached my sciatic nerve, so I wasn’t able to walk.” On Feb. 1, she was back in the OR, where Seckin and a surgical team of five including Brodherson; Manolas; Seckin Endometriosis Center associate surgeon Dr. Karli Goldstein; and Colorectal Surgeon Dr. Peter K Hon, converged on Chan for a 13-hour long excision surgery. The team corrected the frozen pelvis condition again and removed portions of her rectum. When she awoke, she looked down to find herself wearing an ileostomy bag. She lost so much blood during both procedures that she needed blood transfusions.
New life, new body
On May 3, Chan slowly started back at work at audit and consulting firm Deloitte and Touche after taking two short-term disability leaves during her recent surgeries. Her ileostomy bag and ureter stents now removed, she says her body is slowly re-learning how to eliminate the old-fashioned way. She hopes her story will let other endo women know they aren't alone in their suffering. In her spare time, she's begun organizing endo women meet-ups around NYC, taking yoga classes and trying out acupunture. Asked what else she plans to do now that she’s feeling better, Chan doesn’t hesitate. “Enjoy some really good food. I would love to go back to Hawaii.” And she’ll pack her positive attitude in her luggage. “Just focus on the present and live every day," she shares of the advice that keeps her going. "Go do what you got to do to make you happy right now. Live the moment now. And that’s how you do it. Because if you think about the past or future, you worry too much be happy. This is a new life for me, a new body.”