Why So Many Celebrities Are Finally Talking About Endometriosis — And What Every Woman Should Know

When Bindi Irwin revealed she had endured a decade of “unbearable” pain before being diagnosed with endometriosis, she became yet another celebrity to help crack open a conversation that’s been building for years. From Olympic gold medalist Tara Lipinski and actresses Emma Roberts and Tia Mowry-Hardrict to singer Halsey and reality star Savannah Chrisley, more public figures are speaking candidly about their endometriosis journeys. Padma Lakshmi, who spent 20 years searching for answers before her diagnosis, went on to found the Endometriosis Foundation of America.

Their stories share a common thread: years of pain that were minimized, misunderstood or dismissed.

According to Iris Kerin Orbuch, MD, founder of Iris Wings Sanctuary For Endometriosis Surgery & Wellness and author of “Beating Endo: How to Reclaim Your Life From Endometriosis,” that pattern is far too common.

“Endometriosis is an incredibly common disease, affecting approximately 1 in 8 of those assigned female at birth,” Dr. Kerin Orbuch says. “It is super common, and unfortunately, the majority of those living with the disease don’t even realize they have it.”

One of the biggest barriers to diagnosis is normalization — especially of pain.

“The most commonly normalized symptom of endometriosis is pain,” explains Dr. Deborah Ikhena-Abel of Aspire Fertility Clinic in Austin, Texas. “Severe menstrual pain and very heavy periods are frequently dismissed as just part of being a woman.’ But periods that are debilitating are not normal. In fact, research suggests that up to 8 out of 10 women with severe menstrual pain may have endometriosis.”

She adds that cultural messaging often reinforces the idea that women are simply better at tolerating discomfort.

“If your period disrupts your daily life, forces you to plan activities around your cycle, or regularly requires you to miss work, school, or social events, it may signal that you have endometriosis,” Ikhena-Abel says.

Importantly, pain doesn’t always look the same.

“Not everyone with endometriosis experiences classic pelvic pain,” Ikhena-Abel says. “Some women have little to no period pain but experience other cyclical symptoms, such as painful or bloody bowel movements during menstruation. This occurs because endometrial-like tissue can implant on the bowel or rectum and become inflamed during the menstrual cycle. The presentation of endometriosis can vary widely, which is one reason it is often overlooked.”

Kerin Orbuch notes that the disease extends far beyond menstruation.

“It’s often misunderstood as a menstrual disorder,’ but endometriosis is a systemic, inflammatory disease that affects nearly every organ system in the body,” she says.

Symptoms can be gynecologic — painful periods, heavy bleeding, painful sex — but also gastrointestinal and urological.

“Many patients experience significant gastrointestinal symptoms, such as constipation, diarrhea, bloating, and painful bowel movements. Many have been diagnosed with irritable bowel syndrome and hemorrhoids. Some patients experience urological symptoms, such as urinary urgency, frequency, waking at night to urinate, or feeling like they have a urinary tract infection despite negative cultures.”

And then there’s the exhaustion. “Chronic fatigue is also extremely common, which is often dismissed but is a very real and debilitating part of this inflammatory disease,” she says.

Endometriosis is “notoriously underdiagnosed,” Ikhena-Abel says, and often takes years to identify.

“When both patients and providers view severe symptoms as routine, further investigation may not occur,” she explains.

“The only definitive diagnosis for endometriosis requires laparoscopic surgery,” Ikhena-Abel says. Some providers hesitate to make a presumptive diagnosis without surgical confirmation, even when symptoms strongly suggest the condition.

Kerin Orbuch points to additional systemic issues. “There are a multitude of reasons why diagnosis is often delayed. Number one, there’s so much misinformation about endometriosis,” she says. “I often tell my patients that I learned more in my first week of fellowship, which was devoted to endometriosis, than I did in four years of OBGYN training, plus four years of medical school.”

She says that imaging often fails to detect the disease. “Ultrasounds, MRIs, and CT scans frequently fail to detect it, so there isn’t a widely available, reliable diagnostic imaging tool.” Even during surgery, endometriosis can be missed.

“In my residency, I only learned about two appearances of endometriosis, when in fact endometriosis can have multiple appearances at the time of laparoscopy. As a result, when general OBGYNs take a patient to surgery to look for endometriosis, they’re missing the varying appearances of endometriosis and they’re often telling the patient that there’s nothing wrong with them.”

For some women, infertility is the first clue.

“About 30%-50% of women with endometriosis also experience infertility, and for some, infertility is their only symptom of endometriosis,” says Ikhena-Abel.

She explains that endometriosis “can negatively impact fertility by blocking the fallopian tubes, making the uterine lining (also known as the endometrium) less receptive to pregnancy and decreasing egg quality.”

Kerin Orbuch echoes that the inflammatory nature of the disease plays a central role. “Endometriosis can affect fertility because it is an inflammatory disease, and is responsible for about 40% of unexplained infertility. It creates inflammation in the pelvis and throughout the body, and the inflammation can decrease egg quality and egg quantity, and also decrease implantation of the embryo in the uterus.”

Treatment options vary, but for some patients, pregnancy can be achieved following surgery to remove endometriosis, while others may be able to conceive without surgery.

“The most effective option for someone experiencing infertility from endometriosis is in vitro fertilization (IVF),” Ikhena-Abel says.

She notes that IVF “can bypass the need for an egg to fertilize in the fallopian tube and travel through the tube to the uterus for implantation by directly transferring it into the uterus” and “can also overcome some of the negative effects of endometriosis on egg quality and endometrial receptivity.”

Kerin Orbuch encourages patients to seek specialized care, warning that “general OBGYNs often perform the wrong surgery, the wrong surgery being ablation or burning of endometriosis, when the correct surgery is excision of endometriosis.” An endometriosis specialist, she says, “exclusively focuses on excision of endometriosis surgery, which is the gold standard of treatment.”

At her practice, she says, treatment is holistic, and takes into consideration the fact that many patients’ condition has been progressing for years before they even come in.

“At Iris Wings Sanctuary for Endometriosis Surgery & Wellness, we take an East-meets-West, multidisciplinary approach to treating endometriosis. Because diagnostic delays often span nearly a decade, endometriosis affects the entire body,” she says.

That means pelvic floor physical therapy, gut support and comprehensive healing — not just symptom management.

As more celebrities share their stories, one message is rising above the noise: debilitating pain is not normal. And women don’t have to spend 10 or 20 years searching for answers.