Jillian Lye had endometriosis symptoms when she was a teenager, but she wasn’t concerned. She had friends whose periods seemed to be much worse.
“I was on a junior national squash team in Singapore from ages 11 to 19. I was training six days a week for three hours a day and couldn’t miss one day or I’d fall behind,” Lye said. “I had some pain and heavy periods, but I just kept going because I was able to and felt like I had to. My endometriosis doctor later told me that the amount of exercise I was doing was probably masking how bad it could have been.”
Lye, 33, is a physical therapist in New York City. She occasionally has clients who have endometriosis, and she applies her experience with the disease to assist them with their rehabilitation. She recently took another step toward helping patients by joining EndoFound’s Team EndoStrong in the New York City Marathon on November 2. This will be her first marathon, which she is running with her husband, Darrell Leong. Lye has already surpassed her goal of raising $5,000 for EndoFound, but hopes to continue adding to that amount before race day.
Click Here To Support Jillian Lye's Marathon Fundraiser
“A lot of my friends didn’t even know I had endo until I started this fundraiser,” Lye said. “But I can see the awareness growing, and I want to be the voice that I can.”
Lye learned about endometriosis at a young age. Her mother had surgery for it in Singapore when Lye was around 16.
“I remember her OBGYN telling me that my mom had endo, and that there was a good chance my sister and I might get it,” Lye said. “She told me that if I felt any symptoms, I should go see her.”
Lye’s sister would never have symptoms. Lye was in her early 20s, no longer playing squash and attending college in Australia, when her symptoms strengthened—but not enough to slow her down.
“My college roommates tell me today that they aren’t surprised I have endo because I was always saying that I was dying of pain back in college. I don’t remember that,” Lye said. “I know that sometimes I skipped a lecture, but I didn’t even take pain medication. I just used a heat pack and continued with life.”
The pain became much worse around 2017, when Lye was in her mid-20s and had just moved to New York City. She visited a handful of doctors in the city over the next couple of years. They all told her that they didn’t know what was wrong, but they assured her it was nothing to worry about. It was then when Lye remembered her mother’s gynecologist warning her years earlier about endometriosis. Lye returned to Singapore in 2019, where she had surgery and was diagnosed.
“I was in stage III. They found it everywhere,” Lye said. “My ovaries, fallopian tubes, and cervix area. But because of my lack of education and resources on the disease, I had nobody to ask about it.”
Lye noted that because the surgery she had was laser. EndoFound does not recommend laser surgery for the removal of endometriosis.
“She just burned it and didn’t get to the root,” Lye said. “The surgery my mom had was also laser, but she was fine after. I wasn’t. They put me on a horrible drug called Lupron, and the symptoms got worse.”
Six months later, back in New York, Lye found an excision surgeon.
“He did an ultrasound and said that from what he could see, the surgery they did in Singapore made it worse, and he thought the endometriosis had progressed,” Lye said.
That appointment was in March 2020, at the start of the COVID-19 pandemic. The doctor put Lye on birth control and an inflammatory diet until he could do surgery five months later.
“He found stage IV deep-infiltrating endometriosis,” Lye said. “It was in my intestines, on my bowels, and pulling on my uterus. The recovery was longer and more painful, but I could feel the difference right away. My symptoms today are minimal. I’ve been pretty clear for five years.”
Lye started working out consistently at a CrossFit gym after her second surgery. Last year, she decided one day to go for a run, something she didn’t normally do. That led her to train for her first half-marathon, which she ran in April.
“I just started running for fun, and it turned into something,” Lye said. “I don’t really have a time goal [for the New York City Marathon]. I guess maybe under five hours. I’d really just like to finish it and not get injured, which I think are good goals. Maybe next year I’ll aim for a time.”
Her focus is more on the cause and the people who will benefit from it.
“I have a lot of patients with endo, and they are a lot more comfortable with me as their physical therapist because they know I have it, and they have a hard time putting into words what they feel,” Lye said. “But I know how they feel. I know how to modify their exercises and what strength training to recommend. I can also give them advice on what to do when they have a flare-up. The training I’m going through now [for the marathon] is hard, but the pain I feel from that is nothing like the pain those with endometriosis feel. I need to represent them.”
To support Jillian Lye in the New York City Marathon with a donation, visit https://give.endofound.org/fundraiser/6351953.
