Access to care and Quality of care delivered
How to get the diagnosis?
The definitive diagnosis of endometriosis requires laparoscopic surgery, preferably with histological confirmation. There are tests, which the gynecologist may perform, including ultrasound, MRI scans, CA125, and gynecological examinations. None of these can definitively confirm endometriosis, though they can be suggestive of the disease, nor can they definitively dismiss the presence of endometriotic lesions/cysts.
What are the costs?
The average annual health care costs (medical and prescription) are more than 3 times higher for people with endometriosis compared with people without, even 5 years before and 5 years after the diagnosis. Above all, the total workplace productivity loss averages 11 hours per week, with the majority of that loss caused by presenteeism. This affects patients’ overall income and access to treatment.
What to do next?
Despite its high prevalence and cost, endometriosis remains underfunded and -researched, greatly limiting our understanding of the disease and slowing much-needed innovation in diagnostic and treatment option. The fact that there is no non-invasive, definitive diagnostic method for endometriosis is as frustrating for the healthcare provider as it is for people with the disease. Societal factors, such as clinical gender bias and inequities in the treatment of pain based on gender, have been well documented and may contribute to the under-prioritization of endometriosis research funding.
Because of that, one of the main objectives of the FEMaLe project will be developing a framework for inclusiveness and diversity in societal engagement under the header of healthcare-related ethics, gender balance and equality, and RRI.
What we know?
Endometriosis is specific for the biological female gender, due to the central role of the endometrium and the ovarian-uterine-cerebral axis. Moreover, gender is of central importance in special cultural societies, where female sexuality is suppressed, and pain problems related to the menstrual cycle are neglected. In addition, medical treatment of endometriosis symptoms often involves oral contraceptives, and early studies indicate that this conflicts with the traditional power structure of the male-dominated families. Research conducted are sparse on this topic, but it is suspected that a large number of individuals may be left without diagnosis and effective treatment.
Special efforts are needed to fulfill this aim as medical staff members of Western origin are easily misunderstood in ethnic minorities, due to lack of understanding of the cultural and religious context, especially when problems relating to sexual and reproductive function are of concern.
Also, health condition of members of LGBTQ community, lesbian and bisexual women, is critically understudied, and it seems to differ a lot from heterosexual individuals in relation to health risks and healthcare use. The data available indicate that these women suffer from endometriosis to the same extent as heterosexual women, but diagnostic delay as well as availability and acceptance of medical and surgical treatment are largely unknown. It is of paramount importance that FEMaLE reaches these vulnerable and marginalised groups and eliminate their obstacles in diagnosis and treatment.