Page 27 - Diagnostic delay of endometriosis

Introduction
Endometriosis is defined as the presence of functioning endometrial-like glands and stroma outside the uterine cavity, inducing a chronic inflammatory reaction.1 The estrogen-dependent lesions may be present intraperitoneally, in the ovaries or deep invasively, and are associated with pelvic pain and subfertility. The exact pathogenesis and pathophysiology are largely unknown.2,3 Several groups report on the prevalence of endometriosis, with numbers ranging from 1.9 to 20.7% until up to 50% in subfertile women.4-8 Due to the wide variety in presentation and severity of symptoms, clinicians frequently experience difficulties in diagnosing endometriosis. This results in delayed or suboptimal care for many women with endometriosis.1 The classical symptoms of endometriosis are dysmenorrhea, cyclic pelvic pain and dyspareunia. However, numerous other often aspecific symptoms have been reported.9 The disease has a large impact on the quality of life and is associated with extensive physical and psychological morbidity.10-14 Moreover, the cost of endometriosis is a burden to society due to medical costs of treatment and economic costs because of the inability to work.11,15 Diagnostic delay is unwanted, as in a part of the women with endometriosis, both symptoms and disease may progress without treatment, although evidence is contradictory.16-18 Various studies show a median diagnostic delay ranging from 2 years to 10.7 years.11,15,19-21 A number of causes for the variation in time to diagnosis have been identified. When women present with subfertility, time to diagnosis is relatively short, whereas in women presenting with pain as leading symptom, the time to diagnosis is longer.11,22 Moreover, both cultural and healthcare system-related factors are responsible for the difference in time to diagnosis between countries. The attitude towards menstruation and whether pain during menstruation is acceptable are factors that play a role in the time to diagnosis of endometriosis.11,19 Nnoaham et al. showed a difference between public- and private-funded healthcare centers.15 It is unknown how these factors may play a role in the time to diagnosis of endometriosis in the Netherlands.
The general practitioner (GP) fulfils a gatekeeper role in the Netherlands. Self-referral to a specialist is not reimbursed by the healthcare insurance. Therefore, in case of a health problem, people go to see their GP first. The main approach of the GP is to diagnose and treat the disease. Only when a diagnosis cannot be made or treatment has insufficient effect, the GP decides that a patient should consult a second-line medical specialist.
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