Page 98 - Diagnostic delay of endometriosis

Inform women with endometriosis, requesting information on their risk of developing cancer that (i) there is no evidence that endometriosis causes cancer, (ii) there is no increase in overall incidence of cancer in women with endometriosis and (iii) some cancers (ovarian cancer and non-Hodgkin’s lymphoma)
are slightly more common in women with endometriosis
Diagnostic delay
50 51 35 (75%) (76%) (52%)
Participants estimated the median time period between the onset of symptoms and diagnosis to be 42 months. When asked about which period of delay would be acceptable, 65 out of 67 respondents (97%) indicated that a period of less than two years from start of symptoms and diagnosis should be aimed for, and over half of the respondents (n= 35), advocated a maximum delay of 3-6 months.
The respondents state that patients, GPs and gynaecologists all contribute to the diagnostic delay of endometriosis. The responses to the open ended questions regarding which factors impede timely diagnosis are shown in Table 3. Factors relevant for patients, GPs as well as gynaecologists are trivialisation of complaints, lack of knowledge about endometriosis and failure to recognise symptoms. Patient specific factors were vague presentation of symptoms and avoidance of healthcare. Late referral to a gynaecologist was identified as a GP specific factor. Misdiagnosis, incomplete history taking and/ or incomplete physical examination and limitations in performing diagnostic tests were all identified as contributing factors in relation to gynaecologists and GPs. Misdiagnosis may be more common among GPs, whereas being restrictive in diagnostic testing was one of the most important factors among gynaecologists.
Interventions aimed at reducing diagnostic delay may be initiated by patients and health professionals (Table 4, open ended question). However, according to gynaecologists, organisations and institutions including the Dutch patient interest group (Endometriosis Society, ES), the Dutch Society of Obstetrics and Gynaecology (NVOG), the government, and the media, all may play a role in reducing the time to diagnosis. The respondents state that one of the most important actions for reducing diagnostic delay was increasing knowledge and awareness amongst all stakeholders, including young women, GPs and gynaecologists.
96 | Chapter 6