Diagnostic delay in women with pain and endometriosis

Women with endometriosis claim that delayed diagnosis is a problem. Anglo-American studies have shown a delay from 3 to 11 years between the onset of pain symptoms and the final diagnosis of endometriosis. The aim of this study was to find the time difference between the onset of pelvic pain symptoms and the final diagnosis of endometriosis among Norwegian patients.

Questionnaires were sent to 400 women, of whom 313 were members of the Norwegian Endometriosis Association and 87 were patients with endometriosis being hospitalized at St Olav's Hospital, Trondheim, in recent years. The response rate was 89%. Among the 356 questionnaires returned, 95 were excluded as not fulfilling the inclusion criterion of surgically verified symptomatic endometriosis or incomplete questionnaires. Data were analyzed from 261 women, of whom 223 were members of the Norwegian Endometriosis Association. In all included patients, pain was an indication for diagnostic surgery.

The mean delay in diagnosis was 6.7 +/- 6.2 years and the median delay was 5.0 years for the two groups in total. There was no statistically significant difference in delay between the two recruitment groups. Mean delay in diagnosis had not changed significantly with time. Women reporting infertility in addition to pain did not have a significantly shorter delay.

In Norway there is a considerable delay in the diagnosis of endometriosis, with figures comparable to results from Anglo-American studies. A greater awareness of symptoms of endometriosis and a more rapid investigation should thus be encouraged.