Relationship between onset of symptoms and diagnostic delay in women with endometriosis

Abstract

Introduction: Endometriosis, one of the most common benign gynaecological diseases, is
characterized by a reduced quality of life due to various physical and psychological stresses. Late
diagnosis is associated with disease progression and higher healthcare costs. The aim of this
qualitative study was to gain further insights into the causes of the delay in diagnosis in women with
endometriosis.

Methods: Data basis are the statements of 90 women with diagnosed endometriosis from a
qualitative study on the experience with health care in Germany. Following Kuckartz, structuredthematic
content analysis was used to evaluate data. By comparing women with early and late onset
of symptoms, possible causes for diagnostic delay were to be identified.

Results: Women who experience an early onset of symptoms, often associated with menarche,
are predominantly not able to recognize the pathological condition of the symptoms. Lack of
knowledge and experience regarding a normal menstrual cycle, intensive influence of family
members and friends who tend to "normalize", "belittle" and describe the symptoms as fateful, late
use of healthcare services as well as ignorance and misjudgement on the part of physicians result in
a delayed diagnostic process.

Conclusion: The results of the present analysis confirm the findings of other studies indicating that
misjudgment and ignorance of the signs and symptoms are the most important reasons for the
delayed diagnosis of endometriosis. However, it will not be sufficient to bring about improvement
exclusively at the level of the treating physician. Further measures should be taken to improve
the level of knowledge of the general population. Thus, it is necessary to develop comprehensive
and target group-specific information offerings to provide young girls with comprehensive and
appropriate information as early as puberty.