Time to Diagnose for Adolescent Endometriosis in West Java, Indonesia Population: A Single Centre 2 Years Retrospective Descriptive Study

Endometriosis is recognized as a leading cause of secondary dysmenorrhea, followed by adenomyosis and the use of non-hormonal intrauterine devices. It affects approximately 10% of women of reproductive age and up to 20% of those with infertility. This high prevalence has increased awareness of endometriosis among adult women; however, the condition in adolescents remains frequently underrecognized and undertreated. 1 , 2 Delayed recognition in this population may adversely affect future fertility and contribute to broader socioeconomic consequences, particularly in Southeast Asian settings. 1 The early understanding of endometriosis pathogenesis was proposed by Munro et al in the 1920s, suggesting that the condition results from retrograde menstruation, a phenomenon observed in many healthy women. However, this theory does not fully explain cases such as endometriosis in patients with Mayer–Rokitansky–Küster–Hauser syndrome or other conditions in which retrograde menstrual flow is absent. These limitations have led to the development of alternative hypotheses, including the coelomic metaplasia and induction theories. 1 These theories provide a plausible explanation for the occurrence of endometriosis in adolescents, who may present with symptoms despite having experienced relatively few menstrual cycles. Chronic pelvic pain, whether cyclic or non-cyclic, is a key clinical feature suggestive of endometriosis in this population. Additional factors that may support early diagnosis include early menarche (<12 years), dyschezia, dyspareunia, impairment of daily activities due to pelvic pain, and a positive family history. This study aims to characterize the early clinical presentation of adolescent endometriosis over the past three years and to evaluate the time to diagnosis in this population. 1 , 3

Twenty-nine adolescents with histologically confirmed endometriosis were included in this study ( Table 1 ). The mean age at diagnosis was 20.31 ± 2.55 years, while the mean age at symptom onset was 17.8 ± 2.65 years, resulting in an average diagnostic delay of approximately 32 months. This indicates that patients typically experienced symptoms for nearly three years before receiving a confirmed diagnosis. Table 1 Baseline Patient Characteristics of the Study Population Characteristic Value (n = 29) Age (years old)   Mean (± SD) 20.31 (±2.55)   Range 13 – 22 Age at symptom onset (years)  Mean (± SD) 17.8 (± 2.65)  Range 13 – 22 Symptoms onset to diagnosis (months)   Mean (± SD) 32.28 (±22.74)   Range 1 – 72 Diagnosis to operative procedure (months )   Mean (± SD) 2.1 (±1.86)   Range 1 – 6 Symptoms onset to operative procedure/ definitive therapy (months)   Mean (± SD) 34.24 (±23.23)   Range 2 – 74 Menarche (years old)   Mean (± SD) 12.79 (±1.45)   Range 10 – 16 Menarche to symptoms onset (months)   Mean (± SD) 58.14 (±29.79)   Range 6 – 138 Symptoms type (n (%))*   Heavy menstrual bleeding 4 (14%)   Dysuria 1 (3%)   Dyspareunia 3 (10%)   Dysmenorrhea 15 (52%)   Severe Dysmenorrhea (VAS ≥7) 9 (31%) ASRM Endometriosis Staging (n (%))   Stage I (Minimal) 0   Stage II (Mild) 1 (3.45%)   Stage III (Moderate)  Stage IV (Severe) 15 (51.7%) 13 (44.8%) Note : * Symptoms may overlap; VAS, visual analogue scale. Baseline Patient Characteristics of the Study Population Note : * Symptoms may overlap; VAS, visual analogue scale. The mean interval between diagnosis and surgical management was 2.1 ± 1.86 months (range 1–6 months). Overall, the mean duration from symptom onset to definitive surgical treatment was 34.24 ± 23.23 months (range 2–74 months). The mean age at menarche was 12.79 ± 1.45 years (range 10–16 years), and symptoms developed a mean of 58.14 ± 29.79 months after menarche (range 6–138 months). Dysmenorrhea was the most common presenting symptom (52%), followed by severe dysmenorrhea (visual analog scale ≥7) in 31% of patients. Other symptoms included heavy menstrual bleeding (14%), dyspareunia (10%), and dysuria (3%), with some patients reporting multiple complaints. Operative findings demonstrated predominantly advanced-stage disease. According to the revised American Society for Reproductive Medicine (ASRM) classification, 15 patients were classified as stage III and 13 as stage IV, while only one patient had stage II disease and no cases of stage I endometriosis were identified.

This retrospective descriptive study was conducted at Hasan Sadikin General Hospital, a tertiary referral center in Bandung, West Java, Indonesia. The study included adolescent patients diagnosed with endometriosis between October 1, 2022, and October 31, 2024. Eligible participants were female patients aged ≤ 22 years with surgically and histopathologically confirmed endometriosis. Patients were excluded if they were aged > 22 years, had histopathological findings inconsistent with endometriosis, or were unable to adequately understand the Bahasa Indonesia questionnaire. Ethical approval for this study was obtained from the Research Ethics Committee of Dr. Hasan Sadikin General Hospital, Bandung (Approval No. DP.04.03/D.XIV.6.5/511/2024). The study was conducted in accordance with the ethical principles of the Declaration of Helsinki. Written informed consent was obtained from all participants prior to enrollment. For participants younger than 18 years of age, written informed consent was obtained from a parent or legal guardian before study participation. Data were anonymized using standardized coding procedures to ensure confidentiality. High-risk participants received appropriate referral and management according to standard clinical guidelines. Clinical data were obtained from medical records, including demographic characteristics, surgical findings, and histopathology reports. Additional information on symptom onset and clinical presentation was collected through a structured questionnaire administered in Bahasa Indonesia. Patients were contacted by telephone and completed the questionnaire after providing informed consent in November 2024. The primary outcomes were age at symptom onset, age at diagnosis, and diagnostic delay, defined as the interval between symptom onset and confirmed diagnosis. Secondary outcomes included presenting symptoms and disease stage, classified according to the revised American Society for Reproductive Medicine (ASRM) criteria. Descriptive statistical analyses were performed using IBM SPSS Statistics for Windows, Version 26.0 (IBM Corp., Armonk, NY, USA). Continuous variables are presented as mean ± standard deviation (SD) and range, while categorical variables are presented as frequencies and percentages.

Adolescent endometriosis remains underrecognized and may progress if not identified early, with potential long-term consequences including impaired fertility. In West Java, limited awareness and the normalization of dysmenorrhea contribute to delayed diagnosis. In this study, nearly one-third of adolescents reported severe dysmenorrhea, reflecting a substantial burden of untreated symptoms. Early identification of adolescents with persistent pelvic pain, particularly those unresponsive to conventional medical therapy, is essential to reduce diagnostic delay and improve long-term health outcomes.

This study demonstrates a clinically significant delay in the diagnosis of adolescent endometriosis in West Java, Indonesia. On average, patients experienced symptoms for nearly three years before receiving a definitive diagnosis, and most were diagnosed in late adolescence or early adulthood. At the time of surgical intervention, the majority had already developed moderate to severe disease, underscoring the progressive nature of endometriosis when early symptoms are not adequately evaluated. 1 In developing countries and low-socioeconomic settings, delayed diagnosis is often associated with limited awareness, the normalization of dysmenorrhea, and persistent sociocultural taboos surrounding reproductive health. 4 , 5 In West Java, Rakhmilla et al reported that nearly 83% of adolescent girls had low reproductive health knowledge, and 61.8% were unaware that their menstrual symptoms could be abnormal. 6 Similarly, a study from Tasikmalaya involving 166 adolescents found that almost all participants experienced dysmenorrhea, with more than half reporting severe pain. These findings are consistent with the present study, in which 52% of adolescents reported severe dysmenorrhea. 7 The diagnostic delay observed in this study is comparable to reports from other regions. As summarized in Table 2 , previous studies consistently demonstrate prolonged intervals between symptom onset and diagnosis in adolescents and young women. Our findings are similar to those reported by Dun et al, who observed an average delay of approximately two years. 8 A recent study from Israel in 2024 reported an even longer delay of approximately four years, with half of the patients experiencing delays exceeding four years. 9 Table 2 Delayed Diagnosis of Endometriosis in Adolescents and Young Women Across Previous Studies Study Country Mean ± SD (Years) Adolescent Group Mean ± SD (Years) Hadfield et al (1996) 10 UK (n = 84) USA (n =134) 7.96 (± 7.92) 11.73 (± 9.05) ≤ 20 yo UK (n = 6) 4.83 ± 3.37 US (n = 8) 4.38 ± 2.39 Arruda et al (2003) 11 Brazil (n = 200) 7.0 b (3.5–12.1) a ≤ 19 yo n = 5 12.1 b (8.0–17.2) a Ballweg (2003) 12 USA (n = 4,000) 9.3 <20 yo (38% of Subject) Not specified Husby et al (2003) 13 Norway (n = 400) 6.7 (± 6.2) Not studied Nnoaham et al (2011) 14 Multicentre 10 Countries (n = 745) 6.7 (± 6.3) Not studied Hudelist et al (2012) 15 Austria & Germany (n = 171) 10.4 (± 7.9) Not studied (> 18 yo) Dun et al (2015) 8 USA (n = 25) 22.8 (± 31.0) months (1–132 months) a ≤ 21 yo (n = 25) Staal et al (2016) 16 Netherland (n = 139) 89 months (7.4 years) (25–169) a Not studied Pino et al (2022) 17 Italy (n = 689) 11.4 < 20 yo 14.8 Beloshevski et al (2024) 9 Israel (n = 68) 4.0 (± 2.9) <4 years delay (n = 31) ≥4 years delay (n = 37) < 22 yo (12–22 yo) This study (2025) Indonesia (n = 29) 34.24 (±4.31) months (2–74 months) a < 22 yo (n = 29) Notes : a Range; b Median. Delayed Diagnosis of Endometriosis in Adolescents and Young Women Across Previous Studies Notes : a Range; b Median. Early identification of risk factors, including a family history of endometriosis, school absenteeism during menstruation, and prolonged use of nonsteroidal anti-inflammatory drugs, may help reduce diagnostic delay. 18 In West Java, Maryam et al also demonstrated a strong association between family history and dysmenorrhea among adolescents. 19 Given that endometriosis is a progressive condition and surgical intervention may impact future fertility, routine diagnostic laparoscopy in adolescents is no longer favored. Current approaches emphasize early recognition through careful clinical assessment and the use of noninvasive imaging when appropriate. Validated symptom-based tools, such as the ENDOPAIN-4D questionnaire and the screening tool developed by Chapron et al, may facilitate earlier identification and improve outcomes. 20 , 21 Figure 1 illustrates the pattern of delayed diagnosis in this study. Although diagnostic evaluation and treatment were initiated promptly after referral to specialist care, most patients delayed seeking medical attention. Administrative barriers related to Indonesia’s National Health Insurance/ Jaminan Kesehatan Nasional (JKN) administered by the Social Security Administering Agency for Health/ Badan Penyelenggara Jaminan Sosial Kesehatan (BPJS Kesehatan) may have further contributed to diagnostic delays, in addition to the aforementioned socioeconomic and cultural factors. Under the JKN referral system, patients typically access care through a primary healthcare facility (PHC), where adolescents presenting with dysmenorrhea or menstrual irregularities are usually managed conservatively with analgesics or hormonal therapy. Referral to a gynecologist at a secondary or tertiary healthcare facility is generally considered only if symptoms persist despite several months of treatment or if more serious pathology is suspected. Consequently, multiple visits to primary care may be required before specialist evaluation is obtained, prolonging the time to diagnosis. In contrast, adolescents with private health insurance or sufficient financial resources may directly consult a gynecologist without requiring referral, potentially shortening the diagnostic pathway. These differences in healthcare access may partially explain the prolonged diagnostic interval observed in our study. Figure 1 Timeline of delayed diagnosis in adolescent endometriosis in this study. A flowchart showing the timeline from menarche to operation and pathology confirmation in adolescent endometriosis in this study. Timeline of delayed diagnosis in adolescent endometriosis in this study. Consistent with Table 1 , most patients presented with advanced-stage disease (ASRM stage III–IV) at the time of surgery. This likely reflects the insidious onset of endometriosis, which often manifests with nonspecific symptoms such as dysmenorrhea, chronic or acyclic pelvic pain, and, in some cases, urinary or gastrointestinal complaints, leading to delayed recognition. 22 In contrast to several previous studies, disease in our study was already advanced at diagnosis. 3 , 8 , 22 The interval between menarche and symptom onset in this study was comparable to that reported by Goldstein et al, ranging from <1 to 5.9 years, with the earliest onset occurring five months after menarche. 3 Davis et al reported a mean interval of 9.4 ± 3.1 months. 23 The early onset of symptoms supports alternative pathogenic mechanisms, including coelomic metaplasia occurring before menarche or activation of Müllerian remnants. 24–26 Benagiano et al, in a recent review, proposed two distinct phenotypes of adolescent endometriosis: a classic form associated with retrograde menstruation and a potential alternative phenotype involving activation of stem cells around menarche. 26 , 27