Nobody wants to talk about the most brutal time in their life, including Lindsay Jankovitz. For her, that was in high school nearly 20 years ago when endometriosis began taking over her body. But Jankovitz has bravely been sharing her story this year as she approaches running her first marathon for EndoFound’s Team EndoStrong. She hopes her advocacy will help others suffering from the disease.
“I’d been keeping an eye on the slots and finally worked up the courage to apply for one,” she said. “I think it’s an honor to be running with this team.”
Jankovitz lives in Newburgh, New York, and is one of 51 Team EndoStrong members from the US and Europe running in the New York City Marathon on Nov. 5. Their goal collectively is to raise more than $200,000 for EndoFound.
Jankovitz vividly recalls when her endometriosis symptoms began at 14.
“I had very, very painful periods that were long and never stopped,” Jankovitz said. “I eventually had several digestive issues that caused me to lose a lot of weight. It was every stomach issue you could imagine.”
Jankovitz and her parents, who never doubted their daughter’s pain, immediately sought to find the cause.
“As a teenager, I bounced around from doctor to doctor with none of them believing the pain I was in,” she said. “One doctor told us that I was looking for attention and needed psychiatric help instead. Another one said that my pain was probably the result of some bad habits that I didn’t know I had. I don’t know what that meant.”
It took three years for Jankovitz to be diagnosed. She was led to that diagnosis by a gastroenterologist.
“She was the one who said, ‘I think you may have endo,’” Jankovitz said. “She ran the panels for everything that was digestive-related and finally concluded that it likely was endo. Had I not gone to her, I don’t think my journey for a diagnosis would have ended that quickly. She was a lifesaver.”
That doctor referred her to an endometriosis specialist, and Jankovitz had surgery at 17, two months before her high school graduation.
“The endometriosis was extensive—on my ovaries, on my bladder, in my cul-de-sac. It was pretty much everywhere when they opened me up.”
That surgery, 16 years ago, is the only one she’s had, though the symptoms have never completely disappeared.
“I still have a lot of pain with my periods, and I notice now that I’m also having some digestive issues with my periods, but mostly it’s the pain—incredible cramping,” Jankovitz said. “The surgery I had made me well enough to have some quality of life, but it didn’t take away everything. I may have another surgery in the next year or two.”
Her focus now is on the marathon and raising awareness through it.
“I still go to some doctors with my surgery report in hand, and they continue to doubt that I have endometriosis, which is frustrating,” she said. “So I’m hoping to raise awareness to help others get diagnosed sooner and after they get diagnosed, because not many people know what to do with you once you’re told you have it.”
Jankovitz started running for enjoyment in college and has run a few half marathons. She’s been preparing for her first full one with stability training and by running five times a week.
“I’ve found that I feel better as I run more regularly,” she said. “It was hard at the beginning because of the pain, but as I started and kept up with it, it seemed to alleviate some symptoms.”
She said her ultimate goal is to finish the race, but she does have a target time.
“I’ve heard a lot of people say not to set goals for the New York City Marathon because it’s such a humbling course, but I’d like to do it in under five hours,” she said. “Somewhere in the fours would be great.”
As Jankovitz finished talking about her journey, she drifted back to when it all started and offered wisdom to teenagers today who are in the position she was in.
“I really feel for teens who experience this because it’s a hard time in your life to begin with. You’re trying to figure out who you are, and at the same time, you have doctors telling you that you’re looking for attention, exaggerating, or crazy. Eventually, that self-doubt stays with you because all of these medical professionals are saying the same thing,” she said.
“My advice is just to know your pain isn’t normal, you are strong, and you’re not crazy,” Jankovitz continued. “You deserve to be supported and believed. Stick with it and find somebody to listen to you. It’s hard, but if you keep speaking up, you will find someone along the way—whether it’s a different doctor or close friend or family member—who will believe you.”
To contribute to Lindsay Jankovitz’s New York City Marathon run for EndoFound, visit https://give.endofound.org/fundraiser/4746602.