“I think to myself ‘why now?’” – a qualitative study about endometriosis and pain in Austria

BACKGROUND: Endometriosis is a chronic, benign, and oestrogen-dependent condition and about 10–15% of all women of reproductive age are affected by endometriosis worldwide. It is not curable and pain is one of the most common symptoms of endometriosis and leads to low quality of life in affected women. To our knowledge, in German-speaking countries, no studies with qualitative methods approaches are available concerning women who suffer from pain caused by endometriosis and possible associated coping strategies. Our study aims to familiarise ourselves with the individual pain experience of selected women who suffer from endometriosis in Austria and their coping strategies. METHODS: A qualitative study design was based on problem-centred interviews for data collection and qualitative content analysis for data analysis. The research participants were women aged between 18 and 55 diagnosed with endometriosis and living in Austria. The interview period was from 27 February to 26 March 2019 and interviews lasted between 50 and 75 min. RESULTS: Eight categories were formulated, of which category 3 (thoughts and feelings regarding endometriosis and pain - ‘why?’), category 5 (effects and changes caused by endometriosis and pain – ‘quality of life’), category 7 (taboos – ‘don`t talk about it’), and category 8 (talking about it – ‘contact with others in the same position’) were relevant for this article. The remaining four categories [1–4] have already been published elsewhere. CONCLUSION: Our data show that the social environment plays a fundamental role in coping strategies concerning pain caused by endometriosis. Women in our study reported that exchange with peers offers support. This opens a door for information events, patient organizations like support groups, and the inclusion of these in the supporting system. Involving occupational medicine and workplace health promotion departments in companies should be further goals to support affected women.