The push is on to recognize endometriosis in adolescents

Some also have had diagnostic laparoscopies and been wrongly told that nothing is wrong. Endometriosis is “not all powder-burn lesions and chocolate cysts, which is what we’re taught in medical school,” she said. “It can have many appearances, especially in teens and adolescents. It can be clear vesicles, white, fibrotic, yellow, blue, and brown ... and quite commonly there can simply be areas of increased vascularity. I only learned this in my fellowship.”

Dr. Orbuch, who routinely treats adolescents with endometriosis, takes a holistic approach to the disease that includes working with patients – often before surgery and in partnership with other providers – to downregulate the central nervous system and to alleviate pelvic floor dysfunction that often develops secondary to the disease. When she does operate and finds endometriosis, she performs excisional surgery, in contrast with ablative techniques such as cauterization or desiccation that are used by many physicians.

Treatment of endometriosis is rife with dilemmas, controversies, and shortcomings. Medical treatments can improve pain, but as ACOG’s current Practice Bulletin (No. 114) points out, recurrence rates are high after medication is discontinued – and there is concern among some experts that hormone therapy may not keep the disease from progressing. In adolescents, there is concern about the significant side effects of gonadotropin-releasing hormone agonists, which are sometimes chosen if COCPs and NSAIDs fail to relieve symptoms. COCPs themselves may be problematic, causing premature closure of growth plates.

And when it comes to surgical treatment, there’s often sharp debate over which operative approaches are best for endometriosis. Advocates of excision – including many of the patient advocacy groups – say that ablation too often causes scar tissue and leaves behind disease, leading to recurrent symptoms and multiple surgeries. Critics of excisional surgery express concern about excision-induced adhesions and scar tissue, and about some excisional surgery being too “radical,” particularly when it is performed for earlier-stage disease in adolescents. Research is limited, comprised largely of small retrospective reports and single-institution cohort studies.