Endometriosis in Adolescents and Teens

Learn about the unique presentation of symptoms in adolescents and how treatment is approached for teens and pre-teens

Incorrectly, adolescents are often thought to be too young to be affected by endometriosis. Studies have shown endometriosis in patients as young as 11 years old and other research suggests that two thirds of patients with endometriosis have symptoms before they are 20 years old. The prevalence of endometriosis in adolescents with chronic pelvic pain, and/or dysmenorrhea resistance to OCPs (oral contraceptive pills) and NSAIDs is 62 percent. As high as 75 percent of adolescents with chronic pelvic pain resistant to OCPs are later diagnosed with endometriosis.

Clearly, the adolescent population is commonly affected by endometriosis and experience an early onset of symptoms. This makes sense when you consider the hormonal changes taking place at this transitional time. During the developmental stages of teenage years, hormones begin to fluctuate and the body starts producing estrogen. This change in hormones can initiate the pain and symptoms of endometriosis. Endometriosis lesions have been found to occur in patients both before menstruation and early after it.

Those who experience menstruation at an especially early, pre-teen age –between the ages of 9-12 for example – may also experience difficulties in getting diagnosed and receiving the proper care because so few in the general public, as well as the general medical community, realize that endometriosis can affect patients at such a young age.
- Endometriosis of Young Girls and Teenagers

Symptoms

Symptoms can present primarily as chronic pain throughout the body or as urinary and/or bowel pain and dysfunction. As a teen starts to menstruate, their periods can become painful or they may have acyclical symptoms. This means that their symptoms occur in irregular patterns that are not synced to their period. Symptoms can happen at any time or even constantly. Studies have suggested that adolescents with endometriosis appear to experience acyclical pain more often than adults.

Pain and symptoms can greatly interfere with school attendance, academic performance, and social life. Reluctance to participate in activities due to pain is a common symptom of endometriosis and should prompt a medical evaluation. Since there is a genetic predisposition, some specialists believe it's important to evaluate adolescents for endometriosis if it runs in their family.

Adolescents may be wary of speaking about their bodies and health openly. Routinely checking for endometriosis would allow for a more open dialog that may uncover signs or symptoms that the patient has dismissed as normal. The stigma surrounding pain and menstrual pain has given many the false impression that pain is normal. This antiquated myth keeps many who are suffering silenced.

In addition, when endometriosis appears during adolescence, there is likelihood that the disease will progress and, if left untreated, produce adverse effects that go beyond pain, and include infertility. Finally, a majority of adolescent girls with chronic pelvic pain not responding to conventional medical therapy have endometriosis. For all these reasons, an early identification of the disease may go a long way in slowing or preventing progression.
- Endometriosis In Adolescents Is A Hidden, Progressive and Severe Disease that Deserves Attention, Not Just Compassion

Treatments

Specialists agree that laparoscopic removal of endometriosis is still the appropriate surgical treatment for teens. It is the only way to diagnose endometriosis and is considered the gold standard for endometriosis treatment. The lesions found at surgery may present differently than those in adult patients, which can be missed by general gynecologists and non-specialists. Adolescent endometriosis often appears as clear vesicular lesions, or red, white, or yellow-brown lesions. Adults often have darker chocolate or black lesions, which is associated with old blood and activity.

Endometriosis care for teens requires special attention and a fine-tuned approach for their unique needs. Studies on hormonal medication use in younger populations are limited. Due to this lack of data, the true impact of treatment is not known. Placing a teen on hormonal medications will suppress their natural puberty process and replace it with synthetic chemicals, which could potentially lead to developmental concerns.

Puberty is a critical life stage that is marked by rapid growth and changes in the body and brain. In animals, sex hormones such as estrogen and progesterone are known to affect how the brain develops during puberty. If the same is true for humans, taking synthetic estrogen and/or progesterone — core ingredients found in most formulations of the pill — during this sensitive period could affect development in ways that have long-lasting consequences on mental health.
- Taking The Pill As A Teenager May Have Long-lasting Effect On Depression Risk

The largest study on hormonal contraceptive use in women concluded that there is an increased risk for depression with the strongest relationship found in teenage women. Similarly, another study's findings suggest that oral contraceptives taken during teen years can have an enduring effect on a woman’s risk for depression. This can even last years after cessation, or ceasing to use the medication.

Interestingly, a retrospective study of 90 surgically-treated adolescents experienced pain recurrence and exacerbation of pain while on continuous hormonal medications. The efficacy and potential side effects of hormonal medications are discussed in further detail in Hormonal Medications for Endometriosis. Special consideration should be given to the potential side effects and long-term effects of hormonal medications. More research is needed to be certain of the outcomes of hormonal medication use in teens.

If a patient has symptoms consistent with a diagnosis of endometriosis, it is crucial that the diagnosis be proven before subjecting a young person to prolonged bouts of powerful drugs. Sometimes physical abnormalities can cause painful symptoms. Such abnormalities can be corrected surgically and are not helped at all by medications.
- Endometriosis in Teenagers

Since research has not focused on the treatment of adolescent endometriosis, we do not know if early treatment can prevent adult endometriosis. Progression of endometriosis in adolescents is characterized by extensive adhesions and lesion formation but further data is needed to understand the progressive changes.

Key Questions To Ask Your Teen or Pre-Teen

The Endometriosis Foundation of America has developed some important questions for parents to ask their teens and pre-teens if they suspect endometriosis.

It's advised that parents check in with their young teens and focus on these key questions:

Is your teen missing school every month because of their period?

Are they unable to go to school when they have their period, but when it's over, are they back to normal?

Are they unable to do sports?

If the answer is yes to any or all of these, he advises getting your preteen or teen checked out by an endometriosis specialist.

- How To Talk To Your Teen About Endo

Resources

The ENPOWR™ (ENdometriosis: Promoting Outreach and Wide Recognition) Project is a school and community-based endometriosis education program, the only one of its kind in the United States. ENPOWR™ raises awareness and promotes treatment-seeking behavior through an interactive lesson.
Vital Health Endo Blog features a personal perspective from a tenacious teen patient who learned how to advocate for herself early on in her endo journey.
The Endometriosis Foundation of America has several videos and informational articles focused on teen awareness.
Endometriosis UK provides a variety of resources for cis teen girls to learn about endometriosis.
This EndoLife discusses the often overlooked but imperative impacts of endo on teens who are already marginalized and highlights the importance of education.
Center for Young Women's Health offers resources for cis adolescent girls.
Taking The Pill As A Teenager May Have Long-lasting Effect On Depression Risk looks at the findings of their study on hormonal contraceptive use in teens.
Endometriosis In Adolescents Is A Hidden, Progressive and Severe Disease That Deserves Attention, Not Just Compassion provides scientific insights on endometriosis in the younger patient population.

For the next article in the Endometriosis Series, see Endometriosis Resources

Endometriosis Series

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