Endometriosis can be a baffling condition due to its unclear cause, lack of symptom consistency, and the time it can take to receive an accurate diagnosis.

The condition—which affects an estimated 1 in 10 women in the U.S.—occurs when tissue similar to that which lines the uterus, known as the endometrium, grows outside of the uterus, typically on the ovaries, fallopian tubes, or the lining of the pelvic cavity.

Because it’s difficult to understand and diagnose, there are a lot of misconceptions out there about endometriosis.

“For so many years, little was known about endometriosis; therefore, many misconceptions were propagated,” Katherine Burns, PhD, an associate professor at the University of Cincinnati College of Medicine who studies endometriosis, told Health. “Awareness is starting to change some of the misconceptions and change the narrative, but not fast enough.”

Here, ob-gyns and endometriosis experts weigh in on the things they wish everyone knew about the chronic condition.

While it’s true that endometriosis typically affects the reproductive system, in rare cases, it can also affect other organs and areas within the body.

“Endometriosis can lead to inflammation throughout the body,” Christine N. Metz, PhD, a professor of obstetrics and gynecology at Feinstein Institutes for Medical Research and co-director of the Research OutSmarts Endometriosis study, told Health. 

Endometriosis is most commonly found on the:

• Ovaries
• Fallopian tubes
• Tissue and ligaments that support the uterus
• Surface of the uterus

Less commonly, endometriosis can be found in the:

• Vagina
• Cervix
• Vulva
• Bowel
• Bladder
• Rectum

Very rarely, endometriosis can spread to the:

• Lungs
• Nasal cavity
• Skin
• Brain

Treatment may help stop the tissue from spreading, which is why a timely diagnosis and prompt care are so critical.

Endometriosis is notoriously difficult to diagnose due to a lack of awareness of and knowledge about the disease, said Metz.

This is, in large part, due to the symptoms of endometriosis, which can be misdiagnosed for other conditions. “Most symptoms are vague and not specific for endometriosis,” said Metz. “[This makes] diagnosis difficult.”

The most common symptoms of endometriosis are intense, often debilitating pain around menstruation, but other symptoms include pain going to the bathroom or during sex.

Even after symptoms are identified, it may still take several years for diagnosis, partially due to the lack of standardized diagnostics for endometriosis.

Though there isn’t a blood test for endometriosis, diagnosing the condition can involve medical imaging or laparoscopic surgery, which is done through small incisions. A definitive diagnosis of endometriosis requires laparoscopic surgery with biopsies of lesions, Metz explained.

Researchers are working on less invasive diagnostic methods, she added.

Mary Lou Ballweg, president and executive director of the Endometriosis Association, told Health that, in the past, the medical community largely thought the condition only affected thin, white women in their 30s and 40s who waited until they were older to have children. 

“The myth that women of color did not develop endometriosis is especially pernicious,” Ballweg said. “In the Endometriosis Association, we knew this idea that Black women did not get endometriosis was a myth, as we had Black women as part of our support groups from the beginning.” 

Some research documents that Black women are less likely than white or Asian women to be diagnosed with endometriosis. Many people may not recognize or know that endometriosis also affects transgender women and non-binary people, as it’s often thought of as only affecting biological women.

Endometriosis can also affect biological men in very rare cases, Burns told Health. “There are very few documented cases,” she added.

In addition to difficulties accessing medical care among some minority groups, minority groups are less likely to be represented in clinical research. This means that a lot of medical studies aren’t truly reflective of biological differences in all people.

In many cases, endometriosis can be passed down from a parent. If your mother or sister have endometriosis, you have a 6-fold higher risk for developing the condition, Metz said.

However, you can still develop it if your first-degree relatives don’t have endometriosis, Metz noted.

Other risk factors and potential causes for endometriosis include:

• Never having children
• Long menstrual periods that last more than seven days
• Shorter menstrual cycles
• Health problems that block the normal flow of menstrual blood
• Immune system problems
• Surgical complications

“Severity of pain often does not reflect the extent of endometriosis severity,” said Metz. You may have mild endometriosis and severe pain or less pain, or you may have severe endometriosis and little or no pain.

Many people experience constant pelvic pain, and levels go up during their period, ovulation, or the middle of their cycles, Burns noted. Patients can spot during their cycles as a result of endometriosis, too.

Some pain is normal before or during your period if you have endometriosis, said Metz. “However, severe pain (the kind that keeps you in bed each month) is not normal,” Metz added.

There’s no cure for endometriosis, but medication, surgery, or both can help alleviate pain and reduce its progression. Endometriosis typically goes into remission after menopause, when the ovaries stop producing significant hormones.

“People don’t realize endometriosis can be a chronic disease,” Eve Zaritsky, MD, an obstetrician-gynecologist in Oakland, California, told Health. “Many people will require medical and/or surgical management.”

“Sometimes you don’t need surgery,” said Zaritsky. “For many circumstances, endometriosis can be managed medically.”

Even with surgery, medication may still be necessary to suppress the growth of the endometrium so it doesn’t recur, said Zaritsky. Pain comes back for up to 50% of people who have surgery in the five years after tissue removal, some research indicates.

“Birth control pills and gonadotropin-releasing hormone (GnRH) therapies do not cure disease, but put the lesions in a suspended state to not respond to the natural cyclicity of a woman’s hormonal fluctuations,” said Burns.