Characteristics and Preoperative Management of Adolescent Patients With Pathology-Confirmed Endometriosis: A Multi-Institutional Study

Endometriosis affects an estimated 25% to 75% of adolescent patients with chronic pelvic pain; the diagnosis is made surgically and treatment typically consists of hormone suppression and pain management strategies. The methods to address symptoms can vary from hormonal contraceptives, levonorgestrel-releasing intrauterine systems, and gonadotropin-releasing hormone therapy to nonhormonal medications for pain, pelvic floor physical therapy, and psychological support. Previous studies of endometriosis in adolescent patients have mainly been case series or single-institution studies, and there is little evidence surrounding preoperative management. This study was designed to characterize demographics and preoperative management of patients who underwent laparoscopy and were diagnosed with pathologically confirmed endometriosis. This was a multi-institutional retrospective cohort study. The inclusion criteria were patients under the age of 22, who had undergone laparoscopic surgical biopsy and had a diagnosis of endometriosis based on pathologic findings between January 1, 2011, and December 31, 2021. A total of 305 patients were included in this descriptive study, with a median age of 15.6 years at the time of first presentation to a pediatric and adolescent gynecology (PAG) clinic. The median age at first menstruation was 12 years, and a large proportion of patients had a family history of endometriosis (45.3%), many of these in first-degree relatives (68.1%). In terms of medical history, the median number of providers seen before presentation to PAG was 1, and these providers ranged from primary care physicians and adolescent medicine specialists to adult gynecologists, gastroenterologists, and physical therapists. Abnormalities in menstrual cycle patterns were uncommon, with only 15% reporting frequent cycles and 11% reporting infrequent cycles. Heavy bleeding was reported in 50.8% of cases, and 50.5% of individuals reported cramping before bleeding, with 58.2% reporting severe pain during menstruation. Progressive dysmenorrhea was reported in 76.7% of cases. More than half of patients missed school or activities due to dysmenorrhea, and many reported other symptoms, including nausea/vomiting, diarrhea, appetite changes, and headaches. The management before surgery consisted of several approaches, with many patients trying one or more methods before surgical diagnosis. These included hormonal menstrual suppression (70.8%), including combined hormonal contraception, medroxyprogesterone acetate injection, progestin-only oral medication, hormonal intrauterine devices, contraceptive implants, and gonadotropin-releasing hormone analogs. Comorbidities in this patient population included psychiatric (mood or anxiety) disorders and neurologic, gastrointestinal, and musculoskeletal comorbidities, with most patients reporting at least one (73.4%). Physical examination in this cohort primarily showed a presentation of pelvic pain or bilateral lower quadrant abdominal pain with normal exam findings. Improvement in symptoms was reported in most patients with pain medication and heating pad use, but there was a significant proportion that reported no improvement in pain (18%). These results indicate that there is a wide variety of presentation and preoperative management of endometriosis confirmed by pathology, as well as a large variation in comorbidities. Research has shown that the causes of endometriosis are multifactorial, but genetics is implicated as having a large role. The results of this study support this, as approximately half of the patients had a relative with endometriosis. Previous studies have also shown that many patients seek care from multiple providers before a diagnosis of endometriosis is given; the results of this study indicate that seeking care from a primary care provider rather than a specialist may expedite the process of diagnosis for many patients, as it can result in a referral to the correct specialist. Physical exam findings were most often unremarkable except in cases of mullerian anomalies; therefore, the decision to perform a pelvic exam can be individualized. Future research should focus on increasing the consistency of data through prospective research, as well as increasing the sample size and including patients who do not have pathologic confirmation of endometriosis but have a suspicion of it. Characteristics and Preoperative Management of Adolescent Patients With Pathology-Confirmed Endometriosis: A Multi-Institutional Study Plain Language SummaryThis study examined the demographics and preoperative management of adolescents diagnosed with endometriosis through laparoscopy. It included 305 patients under 22 years old, with a median age of 15.6 at first presentation. Many had a family history of endometriosis, suggesting a genetic link. Patients often saw multiple providers before diagnosis, indicating a need for better referral processes. Common symptoms included severe menstrual pain and heavy bleeding, with many trying hormonal treatments before surgery. Comorbidities were prevalent, including psychiatric and gastrointestinal issues. The study highlights the varied presentation and management of endometriosis, emphasizing the importance of genetic factors and the need for improved diagnostic pathways. Text is machine generated and may contain inaccuracies. FAQ