Credits EndoFound for helping her come forward, creates caucus to raise awareness

Few people outside of family and friends knew that Rep. Abby Finkenauer had been living much of her young life with endometriosis – until she courageously shared her story publicly for the first time Thursday afternoon on the floor of the U.S. House of Representatives.

“I’m hopeful to keep raising awareness, push for more funding and give it the platform it deserves,” Finkenauer said prior to her testimony. “So many women with this disease push through the pain every day. They need someone in Congress who has their backs.”

Finkenauer, 31, was elected last year to represent Iowa’s 1st District. She has formed the first-ever Endometriosis Caucus with several of her congressional colleagues, and they have already directed the National Institute for Child and Human Development to allocate at least $26 million toward endometriosis research. It’s a lot accomplished in a short time considering she had no intention of going public with her disease until a few weeks ago.

“I was in my studio apartment in D.C. getting ready to head back home to Iowa, and I was in a lot of pain,” Finkenauer said. “With no direct flight and a long layover, I thought, ‘How am I going to be able to sit in an airport for that long in that much pain?’ I was so frustrated.”

Just how frustrated she was is a revelation into how horrific endometriosis can be.

“I googled ‘hysterectomy,’” she said. “I’m young, recently engaged, and I hope to have a family one day, and yet here I was googling ‘hysterectomy.’ That’s how I found the Endometriosis Foundation of America.”

Finkenauer was shocked to read some of the statistics on EndoFound’s website, including that one in 10 women in the U.S. have the disease and that it is significantly underfunded by Congress. She would also learn that despite there being “caucuses for so many things,” there was nothing for endometriosis.

“It was then that I said to myself, ‘I guess I’m in a position to do something about this.’ I knew it was time to tell my story,” she said. “I was elected to the Iowa Statehouse at 25 and have been in public service the last six years, and I’ve had the platform to talk about endo, but I never did. I just didn’t think people would understand.”

Finkenauer’s journey with endometriosis mirrors that of so many women who suffer with it. She began having irregular menstrual periods when she was 12. In her late teens, the pain kicked in. The first doctor that she went to didn’t know what was wrong. Neither did the second. Nor the third. This continued for a couple of years.

“It came to a head when I was hospitalized for four days because of the pain,” she said. “Everyone knew something was wrong but still didn’t know what. Finally, a doctor looked at my mom and said, ‘She might have endometriosis.’”

Finkenauer had laser surgery when she was 18. She had another one about seven years later. Though the surgeries provided some temporary relief, she still feels pain today and said she’s “gotten used to dealing with it.”

“But there are so many women who are in a worse condition than I am or don’t have the support system that I have,” she said. “They have multiple jobs or are raising kids, and they are trying to just get by day to day. And the most frustrating part is being told it’s normal when it’s very much not.”

Dr. Tamer Seckin, co-founder of EndoFound, thanked Finkenauer for coming forward. 

“Women with endo needed a powerful voice on Capitol Hill, and today they got it,” Seckin said. “As a doctor, I see firsthand the toll endo takes on my patients: multiple surgeries, misdiagnosis, infertility, hysterectomies, and a loss to their overall quality of life. Prioritizing research and awareness is key to treating this disease and giving women back the lives they deserve.” 

Finkenauer hopes that telling her story makes a significant impact on the lives of women everywhere. 

“I hope when they hear my speech that it empowers them to go back to their doctors and advocate for themselves,” she said. “I also hope we can bring in more funding for research because we need definitive answers. We need better options. We need to keep beating the drum for this for women across the country.”

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