Endometriosis in Teenagers

Endometriosis is often associated with adult women (as this is when the condition is typically diagnosed). However, endometriosis can occur in anyone who menstruates, no matter what age they are. In fact, more than 6.5 million women in America and 89 million women worldwide are living with the condition.^1,2

Diagnosis in teenagers can be challenging, often because of care providers who shrug off reported symptoms as somatic, or because they're unaware that the condition can present in younger women. This results in years (or even decades) of untreated symptoms, leading to more extensive endometriosis.²

How many teens have endometriosis?

The actual prevalence of endometriosis in teenagers is unknown, but it is estimated to be approximately 30% of adolescents with chronic pain, and up to 80% of adolescents with chronic pelvic pain who don't respond to any conventional medical treatment.³ It's important, then, for patients to know their bodies, be informed about symptoms, and be able to talk with their providers about what's going on.

Increased awareness has helped medical providers be more sensitive to possible symptoms of endometriosis, resulting in better diagnosis and expedited treatment. According to studies done at Boston Children's Hospital, if endometriosis is found and treated early, it is more likely not to get worse as time goes on.⁴ This research means that it's even more important for early recognition, diagnosis, and treatment.

What are the symptoms?

In teens, the most common endometriosis symptom is pelvic pain and/or severe period cramps.⁴ Pain with sex, exercise, or a pelvic exam might also occur. Less commonly, teens report painful urination or frequent urination, or diarrhea or constipation with accompanying pelvic pain. These symptoms don't necessarily signal endometriosis, but are a sign that they should see a doctor for further examination.

What causes endometriosis in teens?

There is some hypothesis that some teens are at increased risk of developing endometriosis if they have female relatives with the condition, but more research is necessary to draw definitive conclusions.⁴ Right now, there is no definitive known cause for the condition.

How is endometriosis diagnosed in teens?

Because symptoms of endometriosis can vary, it's not always easy to diagnose the condition, especially in teens. Other conditions need to be ruled out, even if the doctor is leaning toward diagnosing endometriosis.

Diagnosing endometriosis typically includes a clinical interview about the pain, taking a medical history, a pelvic exam, and sometimes, vaginal cultures. A trial of oral contraceptives might also be prescribed, to see if this eases the painful periods, along with regular exercise, diet modifications, and relaxation techniques.⁵ The only definitive way to diagnose endometriosis is to do a laparoscopy, a minor surgery that lets the doctor examine your pelvic organs through the belly. Prior to a laparoscopy, though, your doctor might want to do some imaging tests like an MRI or an ultrasound, to see if there are any other possible conditions that might be causing the symptoms. Especially with teens, invasive diagnostic tests are not the first-line option. If the symptoms still persist, a laparoscopy will then likely be done.

How is endometriosis treated in teens?

Once endometriosis is diagnosed in a teenager, it can be treated. Depending on your medical history, extent of endometriosis, and presenting symptoms, treatment can vary. It might include hormonal therapy (oral contraceptives) and monitoring, surgery, lifestyle changes, complementary medicine, or pain relief. Sometimes, a combination of treatments is most helpful. Treatment can change at different points if it's not working well. While there is no cure, early treatment is important to help reduce the severity of endometriosis and protect your fertility.

If you think you (or a teen you care about) might have endometriosis, talk with your parent or health care provider. Endometriosis can occur at any age, and the earlier it's found, the sooner your symptoms can be addressed.