Endometriosis is a condition that can occur when tissue that is normally found lining the uterus, known as the endometrium, begins to grow outside of that organ. With this disorder, the tissue can be found growing around other nearby organs — the ovaries, intestines, and even tissue that lines your pelvis.

Because endometrial tissue is affected by hormonal changes during the menstrual cycle, it’s not uncommon for people with endometriosis to experience pain and discomfort just like they would with endometrial tissue in the uterus. And just like that tissue, this tissue breaks down too — but isn’t expelled.

As a result, endometriosis can lead to the growth of scar tissue, irritation, and even infertility. But while much is known about endometriosis in adult women, the condition isn’t as well-researched in children or adolescents.

Language matters

In this article, we use “male and female” to refer to someone’s sex as determined by their chromosomes, and “men and women” when referring to their gender (unless quoting from sources using nonspecific language).

Sex is determined by chromosomes, and gender is a social construct that can vary between time periods and cultures. Both of these aspects are acknowledged to exist on a spectrum both historically and by modern scientific consensus.

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Officially, there is no known cause of endometriosis — regardless of the age at which it’s discovered. And almost all researchers agree that limited studies in younger age groups, as well as healthcare professionals delaying diagnosis by several years, can contribute to its progression that often leads to infertility and other negative outcomes.

There are a few theories that highlight potential reasons, but no theory has proven to be conclusive yet. We’ll take a closer look at the best supported theories to-date:

At what age can you get endometriosis?

While the condition is most common for women in their 30s and 40s, in truth, endometriosis can happen to people of any age.

As of publication, there hasn’t been enough research into adolescent endometriosis for us to know for sure how early it can develop. In rare cases, even males or children that were premenarchal (not yet menstruating) have been diagnosed with endometriosis.

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Retrograde menstruation

Retrograde menstruation is a condition in which blood that is expelled from the uterus flows back toward the fallopian tubes rather than out of the body through the vagina. This scenario is more common than you may expect, with roughly 90% of women experiencing it at some point during their menstruating lives.

But for some, this backflow can lead to endometrial cells adhering to organs or cavity tissues, or what’s known as endometrial lesions. This is why it is currently considered a key factor in developing endometriosis.

Menstrual pain and endometriosis

A 2013 study conducted in Japan found a link between the incidence of menstrual pain and the need for medical interventions. While the study found that roughly a third of all menstruating Japanese women experienced pain significant enough to require medication, of that group, 6% did not experience any improvement after taking medication.

More importantly, this study found that roughly 25 to 38% of adolescents that complained of chronic pelvic pain were later diagnosed with endometriosis. Meanwhile, the most common solution offered to adolescents is pain medications, which will not treat the cause of the pain.

Stem cells and endometriosis

That same 2013 Japanese study noted that some respondents were diagnosed with endometriosis while having never menstruated (premenarchal). This discovery has encouraged researchers to consider that other underlying mechanisms might contribute to endometriosis rather than retrograde menstruation.

Some researchers further hypothesized that endometriosis diagnoses in premenarchal participants could be caused by stem cells that later develop into endometrial tissue — and are later activated when menstruation begins.

While we often think of endometriosis as a condition exclusively impacting women, the reality is that it can also develop in nonbinary or transmasculine (people assigned female at birth that later transition to boys) adolescents as well.

A 2020 study reviewed previous research that focused on 35 trans participants ages 26 and younger that were diagnosed with dysmenorrhea (or menstruation-related pain) and treated for that condition. Of the 35, seven of the patients were evaluated and found to have endometriosis — some of which were diagnosed after transitioning — and included one participant that had already begun testosterone treatment.

Of the seven patients, treatment varied from oral contraceptives, testosterone treatment, and other drugs such as danazol and progestins. The study found that results were mixed. While some respondents found success with testosterone therapy for resolving symptoms, this wasn’t the case for everyone.

Ultimately, the study recommended that trans masculine people experiencing dysmenorrhea symptoms should be screened for endometriosis, and that testosterone therapy alone isn’t necessarily a complete solution.

Endometriosis in teenage males

While very rare, endometriosis can be diagnosed in males too. To date, only 16 cases of male endometriosis (not including transmasculine cases) have been recorded.

Similar to females, the endometrial tissue attaches to organs or other tissues in the lower genitourinary tract (this is the system that connects the kidneys, bladder, and genital organs). Most commonly, it’s found on the bladder or lower abdominal wall.

As with all cases of endometriosis, there is no confirmed cause for the condition in males. However, researchers have offered several theories including estrogen therapy, liver cirrhosis, chronic surgical inflammation — and even hormonal changes caused by obesity — as potential causes of endometriosis in males.

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Although less is known about endometriosis in adolescent or teenage populations, symptoms tend to be consistent with those found in adult women. These include:

If you or your child is experiencing symptoms of endometriosis, keep reading to learn about getting diagnosed.

Consistently, the research and medical communities agree that early detection of endometriosis is the best way to prevent acute spread which can lead to infertility. Checking for endometriosis on your own is not possible. But letting your doctor know that you’re experiencing chronic pelvic pain, heavy or long periods, or any of the other common symptoms associated with endometriosis is important.

Your physician might start the diagnostic process by performing a pelvic ultrasound to ensure that any other underlying conditions or infections aren’t causing your symptoms. Usually, endometriosis is diagnosed with laparoscopy. This is a minimally invasive procedure where your physician inserts a thin tube with a light and lens through a small incision into the lower abdomen. With this procedure, they can look for endometrial lesions to determine if endometriosis is present.

Unfortunately, it’s common for period pain to be dismissed as a regular part of life, and for many people it can take more than a decade to receive a proper diagnosis. If this is the case for you, don’t hesitate to advocate for yourself and seek a second opinion if you’re unable to find a treatment plan that works for you.

What happens if endometriosis is left untreated?

Endometriosis is a leading cause of infertility, but this isn’t the only side effect of leaving this condition untreated.

Chronic pelvic pain, as well as painful and heavy periods, are other side effects of untreated endometriosis. These can impact your overall quality of life.

For adolescents, this might mean more missed days in school or an inability to participate in extracurricular activities, especially during your period.

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Currently, there is no cure for endometriosis. However, just as in adults, the goal of treating adolescent endometriosis is to control and prevent disease progression, provide symptom relief, and preserve fertility.

Several treatment methods may be recommended depending on the amount of endometrial tissue that is present (disease progression).

Medications

Treatment options can center on hormonal therapy to control estrogen levels — a key factor that influences endometrial growth. For some patients, this might include taking oral contraception, or a progestin-only agent to prevent or minimize the onset of periods, as well as nonsteroidal anti-inflammatory drugs (NSAIDs) for pain management.

Be aware that you might need to try several different types of hormonal therapies before you find the right option that controls your condition.

Some patients might also be prescribed Gonadotropin-releasing hormone (GnRH) agonist therapy. But this is usually reserved for adults, because research suggests that this treatment can impact bone mineralization in adolescents.

Surgery

Surgery is often used for both diagnosis and treatment. While some surgeries can remove endometrial lesions, this is not a permanent solution for everyone.

Research has proven that even with surgery, endometrial lesions can return.

Living with endometriosis

Endometriosis can be a difficult diagnosis to receive at any age, but especially so as you’re also grappling with puberty. And since chronic pain associated with the disease as well as other associated risks can impact your quality of life and emotional outlook, it’s important to have a strong support group around you.

Consider reaching out to the following organizations to find support groups near you or to connect with online communities.

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Most endometriosis conversations center around female patients. But it’s important to remember that trans men as well as those born male are also at risk of developing this disease.

Once thought to only be an issue for menstruating females, research suggests that endometriosis can also be detected in premenarchal youth.

There’s no cure for endometriosis. But experts, advocates, and the medical community agree that early interventions for the condition are critical for limiting its spread, controlling symptoms that can impact everyday life, and preserving fertility — especially in adolescents.