Incidence and Estimated Prevalence of Endometriosis and Adenomyosis in Northeast Italy: A Data Linkage Study

Abstract

Despite being quite frequent and having serious implications in terms of symptomatology and fertility, data on incidence and prevalence of endometriosis and adenomyosis following gold standard definitions are dramatically lacking. The average time from onset of symptoms to diagnosis in industrialized countries still ranges from five to ten years. Using the regional centralized data linkage system, we calculated incidence and prevalence of endometriosis and adenomyosis in the female population of Friuli Venezia Giulia region, Italy, for the years 2011–2013. Cases were defined as new diagnoses from hospital discharge records, following procedures allowing direct visualization for endometriosis and hysterectomy for adenomyosis, with or without histological confirmation. Diagnoses were considered “new” after verifying women had not been diagnosed in the previous ten years. Incidence of endometriosis and adenomyosis in women aged 15–50 years is 0.14%. Prevalence, estimated from incidence, is 2.00%. Adenomyosis, representing 28% of all diagnoses, becomes increasingly prevalent after the age of 50 years. Our results shows how the study of both endometriosis and adenomyosis should not be limited to women of premenopausal age. Further efforts are needed to sensitize women and health professional, and to find new data linkage possibilities to identify undiagnosed cases.

Trends in the incidence rate, type and treatment of surgically verified endometriosis – a nationwide cohort study

“…An Icelandic study with both visually verified and histologically confirmed diagnosis, during 1981-2000, reported an incidence of 0.1% (3). A similar figure of 0.14% of surgically verified endometriosis was also reported in an Italian study performed in the early 2010s, and showed a decreasing trend in the incidence (6). Thus, introduction of the laparoscopic surgery might have also increased the incidence of the procedures (2).…”

“…In our study the age-standardized incidence rates of the first surgically verified endometriosis diagnosis was 0.12%, being at its highest in 1987 and decreasing to 0.04% in 2012, even though more than 80% of the procedures have lately been performed via laparoscopy. The decreasing incidence is in contrast to many previous studies (3,4), but in agreement with the recent Italian study (6). Among patients who entered to our cohort during the first decade, there may be those with previous operations.…”

Epidemiology of endometriosis: a large population‐based database study from a healthcare provider with 2 million members

“…In a German population, the highest prevalence rate was observed among women aged 35–44 years (12.8 per 1000), similar to our age‐specific estimate. The average incidence rate of 72 per 100 000 in our study is comparable with that of other published database studies in the UK, Iceland, and Italy (range 97–112 per 100 000 population), as well as Sweden (77 per 100 000 person‐years) . Still, the true prevalence and incidence of endometriosis in real‐world settings is not sufficiently established.…”

The Pathogenesis of Adenomyosis vis-à-vis Endometriosis

“…In a rare population-based study, the estimated prevalence of adenomyosis in Northeast Italy is reported to be 0.18%, much lower than that of endometriosis (1.14%) [17]. The age-specific incidence of adenomyosis is very different from that of endometriosis, reaching its peak at the age interval of 46-50 years [17]. These numbers seem to be low, possibly because the cases were all histologically confirmed.…”

“…This wide variability stems from variations in the histological criteria adopted for diagnosis and the techniques used to procure myometrial samples [15]. In a rare population-based study, the estimated prevalence of adenomyosis in Northeast Italy is reported to be 0.18%, much lower than that of endometriosis (1.14%) [17]. The age-specific incidence of adenomyosis is very different from that of endometriosis, reaching its peak at the age interval of 46-50 years [17].…”