Congresswoman Abby Finkenauer (D-Iowa) had wrapped up votes for the afternoon and was preparing to head home when she started to feel a familiar sharp pain in her lower back. This was about a month ago and at the end of the week—which meant an intense commute. Finkenauer has represented Iowa’s first district since 2018, elected with a wave of women who delivered control of the House of Representatives to Democrats. With relatives and friends still in her home state, she tries to make the trip from D.C. to Dubuque each weekend. But the flights out that night were late getting into the airport; she contemplated how she’d feel, sitting in a terminal for a few hours, her back screaming. To ease the pain, she’d shifted onto her stomach and into Child’s Pose. She couldn’t fathom the airport. She tabbed over to Google and tapped out one word: hysterectomy.
Finkenauer is 31 now, engaged to fellow politico Daniel Wasta (he was Elizabeth Warren’s political director in Iowa) and eager to have children. Second only to Congresswoman Alexandria Ocasio-Cortez (D-N.Y.), she is the youngest woman ever elected to serve in the House of Representatives and one of the few who has to think about how potential pregnancies might affect her reelection odds. Like 1 in 10 women worldwide, she also has endometriosis.
For decades, endometriosis has been explained as a “painful period,” but in fact the much more serious condition is the result of endometrial tissue growing outside the uterus—a phenomenon that leads to inflammation and scarring that, sure, can make periods painful but can also cause chronic pelvic pain and overall fatigue, make bleeding heavier than normal, require laparoscopic surgeries, and make sufferers infertile. The average patient will spend over a decade and have to see five doctors before she gets an accurate diagnosis.
Endometriosis has had—at least in the popular discourse—something of a moment. Celebrities including Lena Dunham, Alexa Chung, and Julianna Hough have all come forward to share their own diagnoses. In 2018, “What is endometriosis?” was one of the top trending health questions on Google. But despite the growing awareness, there aren’t enough Instagram posts in the world to compensate for lack of funding.
Since 2016, the National Institutes of Health (NIH) has continued to deprioritize research into the condition. To put that in perspective: In 2018 the NIH invested $755 million in breast cancer research and $1.6 billion in dementia and acquired cognitive impairment. It budgeted just $7 million for endometriosis. In 2019 a group of researchers and clinicians took stock of the gaps in research and the lack of treatment options in a review for the American Journal of Obstetrics and Gynecology. After the report was published, lead author Sawsan As-Sanie, M.D., who specializes in endometriosis-related surgeries at the Von Voigtlander Women’s Hospital at the Univeristy of Michigan in Ann Arbor, said in an interview that she draws a direct line between “minimal investment in this area” and the serious limitations in “our understanding of the disease and slowed progress in treatment.”
Finkenauer’s desperate Google search that night delivered her to the website for the Endometriosis Foundation of America; endometriosis, a line on the site said, is the leading cause of hysterectomies for women in their 30s. Finkenauer couldn’t believe it. Although she had been diagnosed relatively early, at 18, which makes her one of the condition’s more fortunate sufferers, she’d had no idea how common it was. “Over 7 million in the United States alone,” she tells me in a phone interview earlier this week. “I had no clue because I hadn’t talked about it. I hadn’t had conversations with people. I had just been dealing with it.” She kept scrolling and learned more—that endometriosis is one of the least funded conditions studied within the National Institute of Health (ranked 276 out of 288), that patients who experience its painful side effects seem to have to choose between life-altering surgeries and tablets of Advil to cope, that research to find a cure or at least better treatment options has ground to a halt.
Knees to her chest, Finkenauer made up her mind. She had worked through pain for over a decade, wincing as she knocked on doors in eastern Iowa on the campaign trail, muscling through floor votes. She had never wanted her competitors to think a woman couldn’t handle the rigors of the job—that “girl problems” made her weak. When she ran for her seat in the House, she was 29. Her competitors were three men in their 40s. “As a woman, I am already up against so many things,” Finkenauer adds. “I didn’t want to give people another reason to doubt me. But this is too important to not talk about.” This week she unveiled the Endometriosis Caucus in the House of Representatives and shared her experience in public for the first time.
The issue is urgent, and so, it seems, she doesn’t want to waste time perfecting the messaging around it. It is such a fine line to walk—stressing the seriousness of this condition, emphasizing what it has cost women and their families, asking for compassion, not to mention millions of federal dollars, but not wanting to lend credence to the notion that women are somehow “less than” because this is just one more in what can feel like an endless series of gendered hurdles to clear. In the 40 or so minutes we spend on the phone, Finkenauer does a masterful balancing act, but her nerves are obvious.
To be a woman talking about the things that disadvantage women is to become a target. To be a woman talking about the state of your reproductive organs? In America? Good luck.
Now Finkenauer has delivered the first ever speech in the House of Representatives about endometriosis. She has announced the formation of the bipartisan caucus that will call for an increase in funds allocated to research the condition. Joining her are fellow first-time elected women like Representatives Sharice Davids (D-Kans.), Chrissy Houlahan (D-Pa.), Xochitl Torres Small (D-N.M.), and Ayanna Pressley (D-Mass.). One congresswoman told Finkenauer her communications director suffered from endometriosis. Another said her sister dealt with it. Rep. Haley Stevens (D-Mich.), another freshman in the new caucus, said in a statement that Finkenauer’s example would give a voice to “the millions of women who suffer from endometriosis.”
“As millennial women serving in the House of Representatives, we are very close and often share in the ups and downs of this job,” Stevens added. She didn’t hesitate to join the group.
And men have rallied behind Finkenauer too. Rep. Colin Allred (D-Tex.), who’s 36, told Finkenauer when she approached him that he’s watched women close to him contend with the condition. Reps. Joe Cunningham (D-S.C.), Marc Veasey (D-Tex.), and Antonio Delgado (D-N.Y.) are also in the caucus. (Its lone Republican is Rep. Jenniffer González Colón, who serves as Puerto Rico’s sole representative in the U.S. Congress.)
Finkenauer appreciates the support, but who wants to make a speech about her uterus in front of every single one of her coworkers? Then again, she has told women in her district countless times to speak up at work, to be frank with their employers about the realities of their lives. “My employers are [my constituents],” Finkenauer says. “And so I am letting them know. I am letting my employers know: I can still do my job and that I will do it well and that I have been doing it well, but this is a thing that I have.”
She has derived some resolve too from the unexpected connections she’s made—just in the process of preparing for her announcement. Getting her hair cut a few weeks ago, she was on the phone with one of her staffers and talking about the then imminent floor speech. When Finkenauer got off, her hairdresser asked her if she had endometriosis.
“I said, ‘Yes,’ and she goes, ‘Me too. I feel like I’m being stabbed right now,’” she recalls. “I was like, ‘I know exactly what you’re talking about.’” The woman told Finkenauer that she works three jobs and can’t afford to take time off when the pain flares up. Remembering the conversation, Finkenauer sounds angrier even than when she talks about her own ordeal: “It’s so frustrating that this is where we’re at—that we can’t find something better.”
Or rather, that we haven’t tried.
Finkenauer is a firm believer in pulling the levers of government and knows that what stands between her and a cure isn’t just advancements in science but federal cash. It just so happens that the representative who chairs the subcommittee on funding for the National Institute of Health (NIH) is none other than Rose DeLauro (D-Conn.). When Finkenauer had to broach the topic with someone, that person turned out to be a woman and a survivor of ovarian cancer. DeLauro wasn’t just receptive; she signed on to Finkenauer’s caucus. Next Finkenauer went to Nita Lowey (D-N.Y.), who chairs the House Appropriations Committee. It was standard protocol—to go to the members in those positions to talk about a relevant issue. It isn’t standard that both are women. Before 2018, Finkenauer notes, “that wouldn’t have been the case.”
So much of the conversation around representation is treated like an exercise in political correctness or like a standard pursued for the sake of Etsy merch. But Finkenauer’s experience is proof: It matters who sits in government. No one needed a woman to launch this caucus. But endometriosis has been a known condition since the 1920s, and in that time no man has been its champion in the federal government.
“When it comes to women’s health, there is so much we don’t understand,” Finkenauer says. “And because [endometriosis] ranks at the bottom for funding from NIH, then there’s not those grant dollars available, so people don’t prioritize it.” All that misunderstanding and confusion mean women continue to get diagnosed with endometriosis later in life, sometimes after suffering with its side effects for up to a decade or more. As Finkenauer puts it: “We deserve a heck of a lot more than this.”
Less than 24 hours before she’s slated to head to the floor, I ask Finkenauer how she feels. “I’m nervous,” she answers. “I’m more nervous than when I decided to run for Congress. It is a vulnerable thing to share, and I think I am still afraid that people will read or hear or see the speech and think, How can she do her job? But I am the youngest woman who ever flipped a seat…and then I was the first freshman to pass a bill through the House in the first two weeks of the term. I have done the job. I hope constituents have seen me do it and want me to keep doing it. But this is one of my fights now. And this is going to be part of my story.”
The morning before Finkenauer’s floor speech, the Center for Reproductive Rights made its opening arguments at the Supreme Court, opposing an attempt in Louisiana to enact anti-choice legislation that would leave just one clinic open in the state that can perform abortions. The timing is not lost on Finkenauer, who feels her battle for research into endometriosis is tied to the battle for choice. “Having kids—I don’t know what that’s going to look like,” she says. “I have a supportive partner, who’s been there with me through this and understands it all.” But, she continues, even with the advantage of comprehensive health care, a partner who gets it, and access to incredible doctors, the prospect of navigating her reproductive future is daunting. She imagines how other women feel.
This is the full spectrum of reproductive health care. This is what we mean when we talk about women making informed decisions about their body. Finkenauer is late for votes, but she wants me to hear this: “Women’s health is complicated. It’s so complicated. There’s a lot to it, and the government should fund it—and then keep out of it.”
On March 5, smack in the middle of her place of work, Finkenauer took to the podium and stared out at her colleagues. She announced the formation of the caucus and narrated how the condition has affected her own life (hours in agonizing pain; two laparoscopic surgeries).
“There are so many women hearing this today who may be hearing their pain described for the very first time,” she said. She wanted them to know—they are not alone.
Mattie Kahn is the culture director at Glamour.
Originally Appeared on Glamour