Unheard, uninformed and vulnerable: a qualitative study of women who seek endometriosis care outside of biomedicine

Background Endometriosis is a complex, chronic inflammatory condition affecting women and persons assigned female at birth and often characterised by symptoms including chronic pain (pelvic and other pain), fatigue, painful urination and bowel movements, and painful sex along with other comorbidities. Women with endometriosis are frequently dissatisfied with available medical treatments and management. Such dissatisfaction means women with endometriosis are often high users of health care, and use a wide variety of health disciplines, including high use of out-of-pocket and traditional, complementary and integrative health (TCIH) therapies that may be outside of biomedicine. The purpose of this study is to identify people with endometriosis who engage with healthcare providers outside formal biomedical pathways to explore their experiences of the healthcare types they access, have accessed, and their healthcare needs. Methods Qualitative methods were used where focus groups were conducted during 2021, with Australian participants > 18 years diagnosed with endometriosis. Participants were recruited via the Australian endometriosis advocacy organisation QENDO, via social media support groups for endometriosis and via social media pages of clinicians with a clinical focus on endometriosis. The focus groups explored three topics: (i) Healthcare needs and experiences, (ii) experiences with naturopathic medicine, and (iii) healthcare within a group setting. This paper is reporting the results of the first topic (healthcare needs and experiences). Data were analysed using reflexive thematic analysis. Results Two focus groups were conducted with a total of 11 participants. Three primary themes were developed from the dataset: Feeling unheard, neglected and disempowered, receiving poorly coordinated and informed care , and experiencing financial vulnerability due to health system failure. Conclusions The findings of this study reveal that women are consulting with TCIH providers after lengthy, financially burdensome and often harmful “trial-and-error” processes within the medical system. It also reveals the costs of endometriosis health care to be unfeasible, and that healthcare providers across the board (medical, TCIH and allied health alike) require up to date education and information on endometriosis. Improvement at a health systems level is needed including the development of clear referral pathways and inclusion of TCIH healthcare types in allied health plans.