Amy Schumer was 10 years old the first time her period pain knocked her flat, and even then she didn’t think to ask why. For years, she’d watched her mother crumpled on the bathroom floor, suffering from the same debilitating cramps, and assumed it was just what being a woman felt like.

“I was immediately in this grotesque pain and was just leveled—just barreled over, like someone was squeezing me tight from the inside,” Schumer tells TIME. “I just thought, ‘It’s my turn.’”

It would take nearly 30 years and a dozen doctors before Schumer finally had a name for what was happening to her: endometriosis, a disease in which tissue similar to the uterine lining grows outside the uterus, affecting an estimated 10% of reproductive-age women worldwide. The actor and comedian, who’s now 45, is telling that story in End of the Cycle, a documentary available to stream for free from the nonprofit The Endometriosis Collective. The film braids her experience together with those of other women, including dancer Julianne Hough, runner Brittany Brown, and actor Janel Parrish.

In a conversation with TIME, Schumer spoke about the years she spent being dismissed, the emotional and physical toll of not being believed, and what she wants every woman to know about advocating for herself in a health care system that too often isn’t listening. 

Living with undiagnosed endometriosis

For years, the pain had a routine. Schumer would end up in the middle-school nurse’s office, lying on a cot, taking Advil and praying she could keep it down long enough for it to work. Usually she couldn’t. She threw it up.

She went home early so many times that her friends turned it into a running joke—one they still tell today. “They go, ‘Is your mom gonna come pick you up, Amy?’” she says. But at the time, there was nothing funny about it. The bloating, the sensitivity, the cramping that arrived like a fist: It was “crippling,” she says, and it pulled her out of her own life again and again.

Schumer did what she'd been taught to do and pushed through. She played volleyball, working around the pain and marveling at teammates who never seemed to suffer the way she did. “I’d just feel like, ‘Oh, that’s strange,’” she says. “‘I guess I’m just unlucky.’” 

Getting an answer

She carried that uncertainty into adulthood. Then, in 2019, she had a C-section while delivering her son—and with her abdomen open on the operating table, a surgeon saw what decades of doctors had missed. “It looks like a bomb went off in your body,” she told her. Among the findings: a chocolate cyst on her left ovary, so named because it fills with old blood, causing it to resemble melted chocolate; an appendix being choked; and 33 lesions.

Schumer sobbed. Her then-husband was in the room with her, and the relief of being believed broke something open. “It felt really good to be there with my partner to say, ‘This isn’t me being lazy. This isn’t me being dramatic,’” she says. “‘I have a real disease.’” For decades, she’d been fighting an “invisible war” inside her own body, and no one had been able to see it. “To finally have it be acknowledged and proven, it was a feeling like nothing else,” she says. “I wasn’t lying.”

After having surgery to remove her uterus and appendix in 2021, Schumer feels dramatically different today. “I am a new person,” she says. More than anything, she feels like “a new mom,” able to keep up with her 7-year-old son in ways she couldn't before. “I have the energy and the strength to really play with my son,” she says. “I'm just so grateful.”

Still, she carries grief for her younger self, who endured it alone. “I feel so sorry for that girl. I picture it like it’s someone else, because my defense mechanisms have made me separate myself from that little girl,” she says. Undiagnosed, she’d spent her life doing “twice the work” and performing “mental and physical gymnastics” just to keep up. All the while, she wondered: “Is my body going to allow me to do this thing?”

What bothers her most, she says, is that no one ever stopped to ask why a young girl would invent this kind of pain. “I wasn't trying to get out of anything. I'm a hustler,” she says. “I wanted to stay out later with my friends, with the boy I liked—and I just couldn't.”

There's a sense of pride in what that pain proved she could withstand. “I can handle absolutely anything, because I've done it with chronic, horrible, crippling pain,” she says. “But I'm sad for younger me.”

When the system doesn’t listen to women

Schumer cycled through doctors before one finally took her symptoms seriously—and she wants to know why that’s normal.

She thinks part of the answer is cultural. Women in pain are still too often waved off as though they’re overreacting. “There’s such a stigma around women,” she says, “of being dramatic, of exaggerating, of not being trusted.” And that bias, she adds, doesn’t come only from men. “It’s the way we’ve all been conditioned to feel about women.” 

She also sees a failure of medical training, especially around diseases that primarily affect women. In her case, doctors were quick to offer the same solution without pushing further. “Just go on birth control,” she says, “and shut up, basically.” 

Schumer knows she has advantages most patients don’t. Yet, like anyone might, she walks into doctor appointments nervous, sometimes forgetting the one thing she came to ask. “Even with all the privilege, it’s still impossible,” she says. For women without means, and for women of color, the stakes are far higher—she points to the maternal-mortality gap, and to Serena Williams, who knew something was wrong during labor and wasn’t believed. “If you’re not believing Serena to know her own body, who are you going to believe?” Schumer says.

If she had a daughter, she'd send a man to go to doctor’s appointments with her. “It’s sickening to say that,” she says. “But people just listen to men more. Men listen to men more. Women listen to men more.”

The cost of not being believed

When a disease is invisible and no one believes you, the damage goes beyond physical pain. “You really start to question yourself,” Schumer says. “It makes you feel like you’re going crazy.” Over time, she stopped bringing it up—not because the pain went away, but because talking about it felt futile. With endometriosis, she points out, a good month isn't a pain-free one: "If you can get a couple good days a month when you're not in pain, you're lucky." So you go quiet. “You don't want to be a broken record and a downer,” she says. “It's so isolating.”

That silence can have consequences. By the time Schumer finally had a name for what was happening to her, the disease had been progressing for decades. She was in her late 30s when she was diagnosed; her mother, whose pain Schumer had watched since childhood, didn’t get the same answer until she was 76. As soon as she had her own diagnosis, Schumer called her. “I said, ‘Mom, you have this. I’ve watched you my whole life, crippled with pain,’” she recalls. Her mother brushed it off—“‘No, I don’t have it. I just don’t have it,’” Schumer remembers her mom insisting—until, eventually, she got the diagnosis too. She got a hysterectomy shortly after.

That delay is exactly what has to change, Schumer says. “Kicking the can down the road is not helping your patients,” she says. “These women need your help right away. Not when they're in their late 70s. Or never.”

How to advocate for yourself at the doctor

Years of feeling dismissed have changed the way Schumer approaches medical appointments. These days, she writes her questions down beforehand and rehearses what she wants to say. “Practice in the mirror,” she advises others who dread the exam room.

Part of the problem, she adds, is that women are taught to be liked—not to annoy anyone, not to take up too much time, and to defer to the authority who just walked into the room. By the time a doctor arrives, many are already talking themselves out of asking the question they came to ask. “You gotta shake all that off and take care of yourself,” she says. The way she pushes past that instinct is by reframing the appointment. “I’m not just a patient for myself,” she says. “I’m here for the women who are going to come in after me.” 

She even has a script for people who freeze in the exam room. Start with the truth, she says: acknowledge the discomfort out loud. “I really don’t want to annoy you, and it’s hard for me to ask you all these questions and pester you—but I’m going to push through for myself.” Saying it that way, she’s found, can make a doctor pause and pay attention.

If your courage falters, Schumer offers simple advice: “Take a deep breath, clench your fists, and just ask. Push and annoy them—for yourself, and for the patients coming after you.” 

For all her frustration, Schumer remains hopeful, largely because of who she sees coming up behind her. "We're really relying on the younger generation to help carry us forward," she says. “I'm so encouraged by these young women.” She points people toward groups like The Endometriosis Collective, which is working to change how endometriosis is researched, treated, and understood.

In the end, there's one thing she wants women who recognize themselves in her story to remember. “All women,” she says, “should love themselves like they're their own mother.”