Endometriosis Is More Common in Teenagers Than Previously Thought, Study Finds

New research has found that endometriosis is more common in teenagers than was previously believed.

The study, which was published in late July in the Journal of Pediatric and Adolescent Gynecology, analyzed 19 studies that included 1,243 teens with pelvic pain. The researchers found that 648 of the 1,011 patients (64%) who had a laparoscopy were diagnosed with endometriosis.

What Is Endometriosis?

Endometriosis is a painful condition that occurs when tissue similar to the lining of the uterus grows in other parts of the body, according to the U.S. Department of Health and Human Services Office on Women’s Health (OWS).

Most of the research on endometriosis has looked at people who identify as female. It's estimated that around 11% of women of reproductive age (between the ages of 15 and 44) have the disease. However, it likely affects many more.

The symptoms of endometriosis can vary from one person to the next and do not necessarily correlate to the stage of the disease. People with stage I can have severe symptoms, while those with later stages may have few symptoms.

The Study's Surprising Findings

Thirteen of the studies in the review had categorized the patients’ disease severity. After analyzing the data, the researchers discovered that:

• 53% of patients had stage I disease
• 28% of patients had stage II disease
• 20% of patients had stage III disease
• 13% of patients stage IV (the most severe form)

“The prevalence of endometriosis amongst adolescents with pelvic pain symptoms is high,” the researchers concluded. “Despite recommendations to increase the awareness and knowledge of endometriosis in adolescence, minimal research has followed.”

The findings suggest that healthcare providers should screen adolescent patients who have pelvic pain for endometriosis, lead study author Martin Hirsch, MD, a gynecologist at University College London, tells Verywell.

“We need to move towards appropriate screening from very little screening,” Hirsch says. “We doctors have for a long time believed that period pain in young patients will pass with age and that these symptoms were often belittled. This study highlights that 64% of young patients with bad pain symptoms actually have a disease that can be treated.”

Appropriate screening “will have a high accuracy rate and reduce unnecessary anxiety associated with screening everyone,” Hirsch says.

Women’s health expert Jennifer Wider, MD, tells Verywell that it was a little surprising to see how common endometriosis was in young patients with pelvic pain. “The numbers were higher than I expected,” Wider says.

Providers can use this information to offer better care, Christine Greves, MD, a board-certified OB/GYN at the Winnie Palmer Hospital for Women and Babies, tells Verywell. “This raises awareness to healthcare providers that, if a patient is hurting, we could try to further look into what might be behind it and ways to help the patient."

The Case for Screening Teens

Anyone can be screened for endometriosis, Greves says. The process involves asking patients about their pain and following up with appropriate testing.

However, providers don’t consider endometriosis as a potential cause of pelvic pain in teens as often as they do in adult patients, Wider says.

Therefore, teens and young adults might have to have to wait longer to get a proper diagnosis than older patients. They are also more likely to be prescribed pain killers for painful periods. “These young women often wait years before being diagnosed,” Hirsch says. "Without a diagnosis, they are blind to the options.”

How to Get a Diagnosis

Getting diagnosed with endometriosis can be a long process and often involves many steps, including a pelvic exam, ultrasound, or MRI. The only way to officially diagnose the disease is to have a laparoscopy where a surgeon takes a sample of tissue to be biopsied.

There is no cure for endometriosis, but there are several treatments a person might choose to try.

One option is a type of hormonal birth control called a gonadotropin-releasing hormone (GnRH) agonist that puts the body into temporary menopause. GnRH agonists are not a long-term treatment option and can have serious side effects.

People sometimes use over-the-counter medications or alternative remedies for endometriosis symptoms they experiencing during their period and at other times of the month. However, these options may not offer consistent or adequate pain relief.

Surgery to diagnose endometriosis can sometimes be an opportunity to treat it. A surgeon with the right set of skills can remove the lesions they can see. However, surgery is not accessible to everyone with the condition. It also is not a cure—lesions can be missed and they may come back.

How Early Detection Can Help

Endometriosis is a progressive disease, and intervening early may slow the spread.

“Early detection and treatment can limit pain and suffering in patients,” Wider says. “All too often, patients are left suffering in silence without a proper diagnosis.”

Endometriosis is a chronic disease, says Wider, adding that “the goal should be to avoid a delay in diagnosis and direct effective treatments as early as possible.”

Typically, providers prescribe conventional painkillers or contraceptives to patients with pelvic pain. If symptoms continue, Hirsch says that further imaging should be done.

“I hope this study will encourage family doctors and general practitioners to consider endometriosis in more young women they see, improving their access to treatment, support networks, and reducing the time these patients spend suffering in silence,” Hirsh says. "This is about speeding the time to diagnosis to empower the patient and family to make the decision that is correct for them."