Kids as young as 8 can have endometriosis. Here's what it is, symptoms to look for, and how to seek the right endometriosis treatment for your teen or tween.

By Lauren Levine Corriher
March 12, 2021
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An image of a teen girl on a couch in pain.
Credit: Getty Images. Art: Jillian Sellers.

It's fairly common to brush off painful periods, especially in teen years. It may even be the perfect excuse to get out of gym class and enjoy from the sidelines as classmates run sprints.

But when those cramps disrupt your child's daily life, it's time to take a closer look at the cause.

In some cases, it may be endometriosis—or when tissue similar to the lining of the uterus is found outside its normal location, often in the lower abdomen or pelvis, causing inflammation.

Endometriosis in Teens and Kids

Endometriosis, a chronic, inflammatory condition, affects about 6.5 million Americans, including girls as young 8, although the exact number in that age group and teens isn't known.

But it is the leading cause of painful periods and chronic pelvic pain in adolescents, says Smitha Vilasagar, M.D., FACOG, a minimally invasive gynecologic surgeon and endometriosis specialist at Atrium Health in Charlotte, North Carolina.

There's currently no cure for endometriosis, but a proactive treatment plan can prevent the disease from creating long-term health complications for your child.

Endometriosis Stages

Doctors classify endometriosis using four stages, with stage one indicating mild disease presence and stage four indicating extensive disease. However, the stages don't necessarily correlate with the patient's pain levels. Your child could have stage one endometriosis but experience intense symptoms. Those include painful, heavy periods, cramps, painful bowel movements, pain with sex, bloating, constipation or diarrhea with or around menstruation, back pain, and chronic fatigue.

"Endometriosis is a very enigmatic disease—it behaves differently in different people. Unfortunately, it's not one-size-fits-all," says Camran Nezhat, M.D., FACOG, FACS, a minimally invasive and robotic surgeon who specializes in treating endometriosis. He's also the founder and president of the Worldwide Endometriosis March and Worldwide Endometriosis Day and inventor of video-assisted endoscopic surgery.

Researchers are still working to understand the complexities of the disease, but they know there's a genetic component. Studies show that if you have a first-degree relative with endometriosis, you're up to seven times more likely to have it, too. Other risk factors include early menstruation and longer, heavier periods, says Dr. Vilasagar.

Endometriosis Diagnosis in Teens and Kids

Anywhere from 75 to 90 percent of teenagers have experienced pain with their periods, estimates Ellen Wilson, M.D., a professor at UT Southwestern Medical Center in Dallas and medical director of pediatric/adolescent gynecology at Children's Health. However, not every teen has endometriosis. So how do you tell if your child's symptoms warrant further investigation?

Dr. Wilson starts by asking patients if their period pain is keeping them home from school. Pain or cramps that impact your child's daily life may indicate that something's off. Teens with endometriosis may also experience noncyclic pelvic pain, or pelvic pain when the person isn't menstruating, says Dr. Vilasagar.

Because some endometriosis symptoms, like gastrointestinal issues, can be associated with other conditions, getting an accurate diagnosis is often a challenge. In fact, it takes the average person between seven and 10 years to receive an endometriosis diagnosis. Other reasons for this delay in teens include:

False beliefs about periods

"For hundreds of years, cultures have associated periods with pain," says Dr. Nezhat. "Mothers tell their daughters, and some doctors tell their patients, it's just how it's supposed to be because that's what they were taught." This can lead a teen to believe that their pain is normal.

Shame

Teens may feel alone if they don't hear loved ones talking about the symptoms they're experiencing, says Dr. Vilasagar. As a result, they may hesitate to bring these issues up. They may also lack the vocabulary to describe what they're experiencing.

Age bias

Though Dr. Nezhat says he has treated patients as young as 8, endometriosis is often only associated with adults. Parents may not think to consider endometriosis as a cause for a teen's pain, a reason being its connection to fertility as up to 50 percent of those with the condition face fertility challenges.

Difficulties with diagnosis

Dr. Nezhat explains that early stages of endometriosis typically don't show up on imaging, and most teens are in these early stages. This is why laparoscopic surgery, where a surgeon uses several tiny incisions to enter the body and remove disease, is considered the gold standard in receiving a definitive diagnosis. Additionally, Dr. Nezhat stresses the importance of a surgeon who knows what to look for, as endometriosis in teens is possible to miss even during surgery.

Endometriosis Treatment for Teens and Kids

Endometriosis is considered a progressive disease, meaning that in most cases it worsens over time without treatment. To prevent disease progression, a proactive treatment plan is important.

If you suspect your child may have endometriosis, Dr. Wilson advises consulting with their primary care doctor, who can make a referral to a gynecologist. If your area has a provider who deals specifically with adolescent gynecology, that would be the best option, though this specialty is not essential in order to receive proper treatment.

Once you've nailed down a doctor, Dr. Nezhat stresses the importance of vetting the provider. He encourages parents to look at professional experience and any articles the doctor has published to determine credibility.

When it comes to treatment, it's important to begin with conservative measures, he advises. In many cases, this means putting the patient on birth control. "Giving birth control to a young woman will stop the overproduction of estrogen, and with endometriosis, estrogen is like water to the grass," explains Dr. Nezhat.

Some parents may be alarmed at the idea of putting their teen on birth control, but there can be several benefits. Beyond preventing unplanned pregnancy, birth control can alleviate heavy periods, minimize cramps, and stabilize irregular periods, which is essential in managing endometriosis.

Unfortunately, the internet has no shortage of rumors about birth control side effects, ranging from infertility to cancer. Dr. Wilson says there's no evidence that birth control pills lead to infertility, and they have been shown to decrease the risk of uterine and ovarian cancer. There have been concerns about increased risk of breast cancer with pill usage. Dr. Wilson says if there's a significant history of breast cancer in your family, you should make the doctor aware of this. If your child feels no relief after roughly three to four cycles on birth control, their doctor may discuss laparoscopic surgery.

Regular exercise has been shown to complement the treatment strategies mentioned above, adds Dr. Wilson, especially exercises that strengthen the abdominal wall. Additionally, taking an omega-3 fatty acid supplement like fish oil can reduce inflammation in the body. Mindfulness practices, including yoga or meditation, may also be useful in managing pain.

The Bottom Line

Endometriosis doesn't only affect adults. If your child has any symptoms, including painful period cramps that are disrupting their ability to enjoy life, it's time to investigate the cause. Regardless of the treatment path that's most suitable for your child, being proactive is essential in order to protect their health both now and in the future.