The average diagnostic delay is 6.6 years worldwide
Author: Haowen Xue
Artist: Bella Marwick
Editor: Celine Tedja
Endometriosis is a chronic, progressive inflammatory disease which affects more than 170 million women worldwide. It is a gynaecological condition where the tissue that is similar to the lining of the uterus, namely the endometrial-type mucosa, grows in places other than the uterine cavity. For example, the tissue could grow in the ovaries and fallopian tubes. However, the peritoneal cavity is not the exclusive location for the possible establishment and propagation of endometriosis. Currently speaking, the main causes are unclear, although several theories such as stem cells, possible genetic mutations, a dysfunctional immune response, and an aberrant peritoneal environment have been proposed to be the contributing factors. One of the major findings has concluded that endometriosis is oestrogen-dependent, as the activated form of oestrogen has a significant link with the progression of the pathology. Painful menstruation, severe pain during intercourse, disordered defecation, and dysuria are the most frequently reported symptoms.
Reports and statistics on the average years of endometriosis diagnosis have shown significant delays of 6.6 years across the globe, with one extreme case of 27 years reported in the UK. There is a wide range between the shortest and longest average delay, with 1.5 years in Australia and 11.5 years in the US. Although it is believed that up to 1 in 10 women of reproductive age are affected by the condition, an estimated 60% of the cases remain undiagnosed. Based on findings, it could take up to seven GP consultations before one is correctly diagnosed with endometriosis. Additionally, the review of over 300 studies has pointed to a relatively significant correlation between the length of diagnostic delay with the type of healthcare visit (i.e. public or private) and the accessibility to healthcare. These studies showed that those with better accessibility and affordability to private healthcare had an average year of diagnostic delay less than the groups in their comparison.
Due to the great variety of symptoms associated with endometriosis, many of which may overlap with other gynaecological conditions, there is an increased difficulty for medical professionals to correctly diagnose the disease. The patient’s lack of awareness and knowledge to correctly describe the conditionfurther hinders the possibility of a correct diagnosis, as it is then only based on conversations and basic medical examinations. Furthermore, surgeons and patients may be hesitant to use laparoscopy, which is the most recent and accurate technique for endometrial diagnosis, due to its relatively invasive nature. This could also delay the diagnosis and thus treatment. Not long ago, many biased voices were commenting on the disease being “career women’s disease”, as the ones with delayed pregnancies are usually working women. Nevertheless, research has shown that this assumption is not true, and that endometriosis could affect women at any age, including teenagers.
Endometriosis could significantly impact the quality of life for the sufferers in the long term. Lack of awareness and knowledge is the fundamental problem that has resulted in the unexpected length of the diagnostic delay. Although there have been measures implemented by both the private and public sectors, more effort is still required to significantly reduce the diagnostic delay. Particularly, as the funding for endometriosis research is disproportionately low compared to the proportion of women bearing the condition (e.g. 0.038% of the US National Institutes of Health’s budget), it can be concluded that people still need to bring more attention to this research area.
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