Delay in the diagnosis of endometriosis: a survey of women from the USA and the UK

Abstract

We investigated the length of time between the onset of pain symptoms and the surgical diagnosis of endometriosis in women from the UK and the USA. A total of 218 women with surgically confirmed disease, recruited through endometriosis self-help groups, completed a postal questionnaire. The mean +/- SD delay in diagnosis for women from the USA was 11.73 +/- 9.05 years, significantly higher than the equivalent delay of 7.96 +/- 7.92 years for women from the UK (P < 0.01). The stage of disease did not effect the length of time between the onset of symptoms and diagnosis. Therefore there is considerable delay in the diagnosis of endometriosis for women from both the UK and the USA. Efforts to reduce this delay are required to minimize the suffering of women with this disease.

Endometrial Stromal Cells and Immune Cell Populations Within Lymph Nodes in a Nonhuman Primate Model of Endometriosis

“…The initiation of endometriosis in women is difficult to investigate, as there is a considerable delay from onset of lesion development to clinical diagnosis. [35][36][37] Furthermore, it is ethically difficult to address these questions in humans, and thus studies of animals with induced disease are beneficial in allowing us to characterize and better understand early immunological reactions associated with the pathophysiology of endometriosis. We have demonstrated significantly increased presence of CD10þ endometrial stromal cells in femoral LNs of baboons with induced endometriosis compared to control animals.…”

Can symptomatology help in the diagnosis of endometriosis? Findings from a national case–control study—Part 1

“…Indeed, studies report average delays of 11.7 years in the USA, 2 8 years in the UK, 1,3 and 6.7 years in Norway. 4 A definitive diagnosis of endometriosis can only be made at surgery, generally via laparoscopy, and there are well-recognised risks associated with this.…”

The ‘sliding sign’ in conjunction with sonovaginography: is this the optimal approach for the diagnosis of Pouch of Douglas obliteration and posterior compartment deep infiltrating endometriosis?

“…, 5 This delay is not only due to suboptimal clinical assessment of patients 6 and the consideration of other differential diagnosis of chronic pelvic pain but also because of the surgico‐pathologic requirement for a definitive diagnosis of endometriosis 7 . Such delay pervades several aspects of a woman's quality of life and may lead to long‐term impairment of organ function, particularly in cases of DIE of the bowel or ureter 6 …”