Endometriosis in adolescence

Timely diagnosis and personalized management of endometriosis in adolescents remain an urgent and unmet clinical need.

Endometriosis in adolescents: distinct features and clinical considerations

Endometriosis is a chronic, estrogen-dependent condition defined by the presence of endometrial glands and stroma outside the uterine cavity. Although typically associated with adult women, increasing evidence indicates that symptom onset frequently occurs during adolescence. In a registry-based study, two-thirds of adults with surgically confirmed endometriosis reported symptom onset before age 20, and one in five before age 15. Despite this, adolescents often experience a prolonged diagnostic delay, leading to suboptimal management and impaired quality of life.

A narrative review by Shim et al. published in “Obstetrics & Gynecology” provides a comprehensive overview of the evaluation and management of endometriosis in adolescents, underscoring the need for heightened clinical vigilance and individualized care.

Symptomatology and diagnostic challenges

Unlike adult patients, adolescents with endometriosis frequently present with atypical or nonspecific symptoms. Cyclic and acyclic pelvic pain, particularly dysmenorrhea unresponsive to first-line therapies, are hallmark features. In a retrospective study by Laufer et al., acyclic or mixed pain was the most common presentation (90.6%), whereas isolated dysmenorrhea was reported in only 9.4% of cases. Gastrointestinal and genitourinary complaints, such as nausea or urinary frequency, are also common and may mimic other conditions, including irritable bowel syndrome or interstitial cystitis.

Physical examination and imaging studies often yield inconclusive results in this population. Transabdominal ultrasound can help exclude obstructive anomalies or large endometriomas but is limited in detecting superficial or early-stage disease. MRI may be helpful in selected cases, especially in adolescents with suspected müllerian anomalies or deep infiltrating disease, although its cost-effectiveness and utility in routine evaluation remain under investigation.

Delayed diagnosis and contributing factors

Diagnostic delay is multifactorial, involving both patient- and provider-related barriers. Adolescents may normalize symptoms due to stigma or lack of education, while healthcare providers may underestimate the likelihood of endometriosis in this age group or fail to recognize its variable presentations. Additionally, implicit bias and disparities in healthcare access contribute to underdiagnosis, particularly among racial and gender-diverse populations.

Importantly, symptom severity does not correlate with age. Younger patients may report greater intensity of dysmenorrhea, dyspareunia, and noncyclic pelvic pain than older counterparts, further dispelling the misconception that endometriosis is milder in adolescents.

Medical and surgical management

Initial management should involve hormonal suppression, typically with combined oral contraceptives or progestin-only therapies. Continuous regimens are often preferred to reduce menstrual bleeding and associated symptoms. If symptoms persist after 3–6 months, laparoscopy is indicated for both diagnosis and treatment.

Laparoscopic findings in adolescents often differ from classic adult presentations. Lesions may appear as clear vesicles, red or white implants, or subtle hemorrhagic spots, and are frequently associated with stage I–II disease, according to the revised American Society for Reproductive Medicine classification. In one systematic review, 81% of adolescents had stage I or II disease.

The choice between excision and ablation of lesions remains controversial, particularly in the absence of high-quality studies in adolescents. Conservative surgical approaches are recommended to minimize adhesion formation and preserve reproductive potential. Radical surgery, including hysterectomy, is not appropriate for this age group and should be strongly discouraged.

Hormonal therapy considerations

Long-term medical management following surgical intervention often includes hormonal maintenance therapy. Options include norethindrone acetate, depot medroxyprogesterone acetate, and the levonorgestrel-releasing intrauterine system. Norethindrone acetate, while effective and well tolerated, has mild estrogenic activity and is not approved as a contraceptive.

GnRH agonists may be considered as second-line agents in refractory cases but should not be used empirically in adolescents without a confirmed diagnosis. Their use requires add-back therapy to prevent hypoestrogenic effects on bone mineral density, particularly during peak bone mass accrual in adolescence. Studies have shown that combined norethindrone acetate and conjugated estrogens improve bone outcomes compared to monotherapy.

Multidisciplinary and inclusive care

Given the complex symptom profile and frequent comorbidities, a multidisciplinary approach is strongly recommended. Pain specialists, physical therapists, and mental health professionals can offer valuable support. Pelvic floor physical therapy and acupuncture have demonstrated benefit in reducing chronic pelvic pain in adolescents.

Special attention should be given to inclusive, culturally competent care. Gender-diverse individuals, including transgender adolescents on testosterone therapy, may also experience endometriosis symptoms and should not be overlooked in diagnostic evaluations. Using inclusive language and respecting patients’ preferred terminology fosters trust and improves care.

Endometriosis in adolescents is common, burdensome, and frequently underdiagnosed. Early recognition and tailored management are essential to mitigate disease progression and preserve long-term health. Clinicians should maintain a high index of suspicion, initiate early hormonal therapy, and consider timely surgical evaluation when appropriate. A comprehensive, multidisciplinary approach that addresses both physical and psychosocial dimensions of care will best serve this vulnerable population.

Sources:
  1. Shim JY, Laufer MR, King CR, Lee TTM, Einarsson JI, Tyson N. Evaluation and Management of Endometriosis in the Adolescent. Obstet Gynecol. 2024 Jan 1;143(1):44-51. doi: 10.1097/AOG.0000000000005448. Epub 2023 Nov 9. PMID: 37944153.