“Endometriosis Stole My Life”: What It’s Really Like to Live With the Condition

Anna Brown was 13 when she started her menstrual cycle, and 15 when she was told she was likely suffering from endometriosis—the same chronic and incurable condition that plagued her mother for decades. Her period cramps were so painful she’d regularly miss school. But her official diagnosis wouldn’t come until six years later when she was 19. “I remember getting back in the car with my mom,” she says, “and it hit me that I now have this illness that I’m going to have to deal with for the rest of my life.”

Yet getting a name for what she was experiencing didn’t bring any medical solutions—endometriosis is a condition that remains under-researched, pain management options are scarce, surgical options can be drastic, and many people report years of their concerns and pain being dismissed before being taken seriously.

Now 26, and a supervising producer at Warner Bros., Anna has spent half of her life suffering from debilitating cramps and gastrointestinal issues. During her bachelorette party in Las Vegas, she recalls, “I was in so much pain. Going to the bathroom was so painful. I was sweating and taking my clothes off. I was curled up in bed, taking shots, and doing my makeup.”

Anna Brown, alone, before surgery in 2022.

Unfortunately, stories like Anna’s are not unique. Today, 1 in 10 women worldwide suffer from endometriosis, with surveys showing that two-thirds of women report experiencing endometriosis symptoms before they were 20. But the impact of the condition on daily lives and relationships can be equally as challenging—and traumatic—as the physical symptoms. Anna, along with many others I spoke to in the reporting of this piece, told me how it affected physical intimacy with their romantic partners, friendships, education, and even their ability to fully show up for work. So what is it really like to live with endometriosis, and what does the future hold for treatment?

But first, what is endometriosis?

Endometriosis is a chronic reproductive condition characterized by abnormal growth of uterine tissue outside of the uterus. Common endometriosis symptoms include painful periods; pain during sex, urination, or bowel movements, which is similar to other conditions like irritable bowel syndrome (IBS) or polycystic ovary syndrome (PCOS), making it even harder to diagnose. As of 2025, the only way to definitively diagnose endometriosis is to undergo a laparoscopy—a procedure where a thin tube with a camera attached is inserted into the body to examine internal organs.

Temporary treatment and management options include painkillers and birth control pills, which can decrease the growth of endometriosis tissue. In recent years, celebrities like Halsey and Lena Dunham have spoken out about their struggles with endometriosis and have highlighted the limited treatment options available. At 31, Dunham revealed her decision to get a hysterectomy—which she felt, after more than a decade of intense pain and medical procedures, was her only recourse. Hysterectomies can be effective in the management of endometriosis, but they are life-altering, cause irreversible infertility, and some may experience symptoms again even after surgery.

On average, it takes eight to 12 years between when women start experiencing endometriosis symptoms to when they are first diagnosed.

“There isn’t a single blood test that can detect the presence of endometriosis, nor is there a specific symptom or physical exam finding,” Vanessa Pinard, MD, a board-certified obstetrician and gynecologist at Pure OBGYN, tells Glamour about the difficulties of diagnosis. “Additionally, the clinical presentation can often mimic other diseases such as fibroids, IBS, and pelvic inflammatory disease, making it even more difficult to diagnose endometriosis as the underlying cause.”

For many of these same reasons, it took around 15 years for Yaël Krinsky, age 34, a writer, to get her diagnosis. “I started having symptoms probably at 14 or 15,” she says. “I was not diagnosed until I was 30 years old.

“I didn’t really have period symptoms,” she continues, “I had extreme gastrointestinal issues. I had diarrhea every day for over 10 years, not one formed stool. I was not able to have a sex life or relationships. I looked bloated to the point that I looked pregnant. Doctors wanted me to take pregnancy tests, even though I said I have not been sexually active for three years.”

Ignored, Dismissed, and Misdiagnosed: The Reality of Endometriosis for Black Women

While people with endometriosis already face an uphill battle for diagnosis and treatment, research shows that Black women are less likely to get diagnosed than white women, and on average over two years later.

Jade Williams, 25, a Black female account executive at William Morris Endeavor, learned to advocate for herself after she says she was not listened to by a doctor. Her symptoms started at 13 years old, but she was only officially diagnosed last year. “In March of 2024 I demanded to be checked for fibroids, thyroids, endometriosis, everything,” she tells Glamour. “I said, ‘I need you to run every single test because what I go through every month is not normal. I’m not able to eat or get out of bed for two full days at a time.’”

After finally getting a doctor to do MRI scans, ultrasounds, and X-rays, Jade got a call that her results were ready. Even then, she says, she had to chase to find out what they said. When Jade finally heard back, she said the tests found a bilateral cyst on her ovaries and an enlarged fallopian tube. To remove the cysts, she underwent laparoscopic surgery. She says the surgery, which took place last December and was supposed to only last two hours, ended up being twice as long because the endometriosis had spread to other organs like her bladder, liver, and kidney.

Jade Williams, post-surgery, in December 2024.

Today, Jade tells Glamour, “If this was looked at earlier, would it have even gotten to the point of me having a diseased tube? Would it have gotten to the point of me needing to be completely gutted open? I’m still processing. I’m still processing the surgery, relearning my body, and regaining my core strength.”

On the racial gap in diagnosing patients of color, Dr. Pinard says, “It was once thought that endometriosis was less common in Black women, in part due to research that didn’t take into account contributing healthcare biases. Today we now know that there is no racial predisposition for endometriosis.

“In recent years, healthcare institutions and practices have incorporated mandatory implicit racial bias training, but there is so much more work to be done. Systemic barriers and lack of diversity and inclusion among healthcare providers further fuel the inequities that Black women face.”

OK, You’re Finally Diagnosed… Now What?

After she says she visited dozens of doctors over 10 years, in 2017, Yaël Krinsky took a more drastic step to find a solution to her excruciating symptoms—enrolling in graduate school in Oregon in the hope that she could find a diagnosis herself. That was the level of desperation she’d reached.

While this wasn’t the right move (“I learned pretty quickly that one should not go to grad school to heal themselves,” she says), she ended up babysitting for a family in Oregon where, coincidentally, the father of the child was a world-renowned endometriosis surgeon.

“One day, his wife says, ‘Are you sure you don’t have endometriosis?’” Yaël recalls. “And I said, ‘No, there’s no way. I don’t have that. I don’t have that.’ I was in denial.”

Eventually, she got an official diagnosis via a laparoscopy that aimed to remove all of her endometriosis cells. The surgery, which lasted five hours, left her recovering for many months, and it was two years before she felt like herself again. In the aftermath, she enrolled in an intensive outpatient program—and has pelvic floor therapy, which can help strengthen pelvic floor muscles and improve bladder and bowel control.

Yaël Krinsky preparing for surgery.

While many people may feel a sense of relief, after living with endometriosis for over a decade, Yaël says, “It felt like a part of me died on the table in the OR.

“I was overcome with grief. It’s like, for 10 to 12 years, you’re told that you’re not seeing the world in blue. You’re crazy. You need to take this medicine. You start questioning yourself. Am I crazy? And then one day, someone says, ‘Actually, we figured out that your eyes are different and you are seeing the world in blue.’

“There’s something so insane about something being tangible and being invisible. That is the fucked up thing that no one can see endometriosis, and people are invalidated and gaslit all of the time.”

According to an Alliance for Endometriosis survey, 90 percent of people with endometriosis say they are “disbelieved, dismissed, or ignored by others at least monthly.” The survey also found that many people with endometriosis symptoms are told that their struggles are a “normal part of being a woman” by family, friends, or employers as well as health care professionals.

“Endometriosis steals your life,” Yael says. “And it has stolen mine.”

Yaël Krinsky crying, in pain, over her symptoms.

Sex and Endometriosis: Breaking the Taboo

Then there’s the part that people don’t often talk about openly—not with their friends, family, or even intimate partners. When you have endometriosis, it can be incredibly painful to insert a tampon into your body, let alone engage in sexual activity.

Glamour’s commerce producer Leilani McQuay was diagnosed with endometriosis at 19, but her symptoms began in high school. “I remember missing school because of my period,” she says. “I would get in trouble and be told that I’m over exaggerating, or they thought I was doing it to myself and making myself throw up.”

“With one of my boyfriends,” she continues, “I threw up on him while we were having sex, which is so painfully embarrassing to even talk about. But I didn’t want to tell him how bad it was hurting.”

Experiences like this, as well as societal pressures that prevent women from having honest conversations with men about sex and their pleasure, led to Leilani feeling like, “Am I just being weak? Is this how sex is supposed to be?”

Yaël also recalls having similar challenges when engaging in sexual intercourse. “I have to go to therapy because sex has been painful ever since I became sexually active,” she says. “Crying, screaming in pain, never feeling safe or comfortable.”

The majority of the women that I interviewed for this article stated that they have had intense and painful experiences during sex with partners. Studies indicate that more than half of people with endometriosis experience dyspareunia—that is, vaginal pain during sex. A study published in 2020 in the journal Sexual Medicine recognizes that dyspareunia is a neglected symptom of endometriosis, which is attributed to “embarrassment and normalization by clinicians and patients.”

In Leilani’s case, on top of sex being extremely painful, she was also told by medical professionals that getting pregnant might be extremely difficult. “A doctor told me that I would be infertile because I have endometriosis,” she says. “I remember, thinking, ‘Okay, so I’m just not going to have kids.’ When you hold shame for that long, and you think, ‘I’m not good enough as a woman, or I’m not able to give my partner this,’ it starts to cause a lot of emotions within yourself.”

“I wasn’t even thinking about kids [at the time], but then having that in my head, I started believing I don’t even want kids,” she continues. “I don’t even like kids. I remember going through my whole twenties thinking, I don’t even want kids anyway. I don’t care, just trying to dismiss it.”

And while there is evidence to suggest endometriosis can cause some fertility challenges, it’s estimated that 60-70 percent of people living with endometriosis can conceive naturally.

For Leilani, now 29, that was the case. She and her partner weren’t trying for a baby, but it happened with ease, and she’s now four months pregnant. But after years of being told it was highly unlikely, this came with its own separate mental challenges: “One day, life just changes, and you’re like, ‘Oh, okay, I am going to be a mom, and my body’s going to change,'” she says. “So I’ve been struggling a little bit.”

Leilani McQuay, 4 months pregnant.

Medical Misogyny Is Nothing New—But Trump’s Budget Cuts Will Likely Make It Worse

The reality is that endometriosis research is severely underfunded in the United States. In 2022, there was only $16 million in funding allocated for endometriosis from the National Institute of Health while a 2024 McKinsey Health Institute report found that 11 start-ups addressing erectile dysfunction—along with other health conditions—raised more than $1.2 billion in a period of four years, while during the same time period eight start-ups addressing endometriosis raised just $44m.

In 2022, lawmakers first introduced the Endometriosis CARE Act to “advance research, promote advocacy, and provide patient support with respect to endometriosis.” If passed, the plan “would deliver $50 million annually to advance endometriosis research and expand access to treatment,” as relayed by Rep. Nikema Williams (D-GA), the 2024 bill’s sponsor.

The following year former First Lady Jill Biden launched The White House Initiative on Women’s Health Research highlighting the medical research gaps for endometriosis and other conditions that affect women.

Since then, the Trump Administration announced that they are cutting funding for “indirect”
expenses in medical research under the National Institutes of Health. However, medical researchers are worried these cuts will only increase health disparities and end up hurting patients in the long run.

Right now, women’s health is under attack. From abortion bans in nearly half of U.S. states to federal grant cuts for projects related to diversity and gender ideology, advocating for more research and equity in endometriosis will be an uphill battle. But not impossible.

Organizations like the Endometriosis Foundation of America are committed to increasing endometriosis recognition, championing stories of those living with the condition, and raising money for research through donations to increase early diagnoses and interventions. Their work also includes educating medical professionals to better identify endometriosis symptoms and the variety of what it can look like.

As Dr. Pinard says, “More and more, we’re seeing endometriosis specialists who are trained in minimally invasive surgery to treat and diagnose this complex disease. However, it’s imperative that healthcare providers across specialties familiarize themselves with presenting endometriosis symptoms which can manifest in different organ systems.”

It shouldn’t be the patient’s responsibility to fight to be heard or believed about their pain. For Anna, Leilani, Jade, Yaël, and countless others, endometriosis remains a battle to treat and get recognition of. But they refuse to give up. Reflecting on her journey, Anna says, “One day, you’ll wake up and realize, ‘Wait, I’m not exhausted.’ I don’t feel a hundred percent, but I feel a little bit better. You have to just take those small wins.”

Anna Brown with bandages over her stitches following her third surgery in 2022.

Anna Brown with stitches after her first surgery in 2017.