U.S. Rep. Abby Finkenauer opens up about her battle with endometriosis, pushes to raise awareness

WASHINGTON — U.S. Rep. Abby Finkenauer sat in her Washington, D.C., home last month, looking at the flight she was scheduled to take back to Iowa and the nearly eight-hour layover she'd have to suffer through.

The pain worsened as she stretched into a yoga position called the child's pose, a small trick she's employed over the years battling endometriosis.

As she realized the pain would prevent her from returning to her district, Finkenauer also realized that she'd had enough. Phone in hand, the Iowa Democrat and newly engaged congresswoman started googling hysterectomies, what could be the ultimate solution to a condition without a cure.

"I'm 31 and I am just tired of having this pain, and there just aren't many options," she said Wednesday, sitting in a chair in her Capitol Hill office, reflecting on the experience. "I am somebody who was just recently engaged. Daniel and I hope to have a family one day in Iowa and, you know, the fact that I went that far as to start googling that was just, it was frustrating."

The freshman Democrat who represents a swing district stared at her computer screen last month, then started digging deeper.

She read that about 1 in 10 women in the U.S. have the same condition she was diagnosed with when she was a teen, that it was a leading cause for women to get hysterectomies — a procedure removing a woman's uterus and thus taking away her ability to give birth — and that Congress provides relatively little funding to help combat the disorder, even though it affects nearly 200 million people worldwide.

In a 30-minute interview in her office, Finkenauer — for the first time — publicly discussed the years of pain and her worries that talking about endometriosis would make her appear weak in a politically charged environment.

While noting she was very nervous to talk about something so personal, the Iowa Democrat outlined how she was taking her battle against endometriosis public, launching a new congressional caucus on Capitol Hill that aims to both promote education and bolster the small amount in funding the disorder receives from Congress.

'Like getting stabbed with a knife'

Living with endometriosis is nothing new for Finkenauer, but it still hasn't gotten easier.

"It feels like getting stabbed with a knife," she said, motioning as though she was being pierced in her abdomen. She said while those sharp pains tend to subside, the pain in her lower back can last much longer and feels almost like her back is in "a vise grip."

She was diagnosed after spending four days in the hospital due to the intense pain. The painful disorder affects people whose uterine lining, endometrium, grows outside the uterus. Finkenauer had two surgeries in which doctors burned off the endometrium, which she said later grew back.

Finkenauer has worked to manage pain while performing her duties in Washington. Walking around the tunnels of the U.S. Capitol, casting votes on the House floor and attending committee hearings have all come with a price.

Finkenauer said she never thought too deeply about speaking out about the condition, even while serving in the Iowa Statehouse.

"When you are young and a woman, sometimes there are, you know, you can't afford to have people think you can't do it," said Finkenauer, the second-youngest woman elected to Congress. "I mean, they already think you can't do it because, maybe they think you can't do it because you're woman, maybe they think you can't do it because you're young."

"I didn't want to give anybody another reason for them to think I couldn't do my job," she said. Finkenauer was 25 when she was first elected to the Iowa House.

"And so I never shared it."

'Strong as hell'

But that one flight and the internalization of her condition that came after changed everything.

The thought of eliminating her chances to give birth, the millions of people who share this condition with her and the lack of money Congress spends researching the disorder led her to a conclusion.

"I started thinking about it and I'm like, 'Well, here I am in Congress with the ability to do something about this and say something about it and raise awareness of it ...,' " Finkenauer said.

She started reaching out to fellow members of Congress, talking to them about her story and the need to dedicate more resources to both researching the condition and raising awareness.

Finkenauer started off sending a message to a group of female lawmakers she's grown close with since coming to Washington, which includes a number of frontline Democrats.

U.S. Rep. Susie Lee, a Democrat representing a swing district in Nevada, saw the message and immediately offered her support, signing on as one of the more than two dozen inaugural members of the caucus.

"I think it's important for women around this country to see that their leaders experience some of the same struggles that they have," Lee said.

Finkenauer also approached others, including Puerto Rico's resident commissioner, Republican Jenniffer González-Colón, about the issue and told her story, which González-Colón called "very compelling" and personal. She noted that she also wanted to focus more attention on endometriosis due to a large number of Puerto Ricans who have the condition.

"I think it's a remarkable opportunity for somebody to spread and educate many other people," the Republican and nonvoting delegate said in an interview. She will serve as co-chair of the caucus. "This condition will not ask what party you're affiliated with," she said.

Finkenauer admits she is nervous talking openly about something so deeply personal.

But she hopes it can help others. She plans to tell her story on the House floor Thursday afternoon to announce the formation of her new caucus. Her fiance, Daniel Wasta, plans to watch the speech from the public viewing gallery overhead.

"It doesn't make me weak that I have this," she said. "In fact, I hope folks see that, especially women who do have it or are people who love the women who have it, realize that they are strong as hell."

Finkenauer says she hopes her speech and the focus she's putting on endometriosis will offer a glimmer of hope for those who suffer without a definitive cure.

"You're not alone in this and maybe there's hope," she said. "When you have this kind of pain, sometimes a little bit of hope that there might be something someday, it goes a long way."

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