Abstract Study question What is the prevalence of endometriosis in Turkey, and what are the impacts of endometriosis-related symptoms on social, occupational, medical, and daily life activities? Summary answer Endometriosis is a debilitating disease that affects 18% of Turkish women of reproductive age. Social, occupational, and psychological functioning are all negatively impacted. What is known already Endometriosis is a chronic, inflammatory disease. It affects about 6–10 percent of women worldwide. It can alter the quality of life, mental health, relationships, and sexuality of the carriers. The delay in the diagnosis of endometriosis causes a loss of workforce, a decrease in productivity, and, most importantly, excessive finances. Previous studies from developed countries show endometriosis carriers have lower annual incomes and higher short or long-term workforce loss. Due to the difficulty of diagnosing most cases, the actual incidence of endometriosis in the population, including in developed countries, is unknown. Study design, size, duration This study used a web-based survey to identify the prevalence of symptoms and endometriosis-diagnosed women. For this purpose, the World Endometriosis Research Foundation (WERF) EndoCost tool was utilized and altered by the Turkish demographic and healthcare background. Between September 15, 2022, and November 2022, the survey was accessible. In this process, 16304 surveys were completed, with 15673 being counted. Participants/materials, setting, methods The survey's applicants were reached through social media platforms (Facebook and Instagram), which included social media accounts of influencers with followers from all over the country, reports of authors and women's support organizations, countywide student clubs of universities, and nurses working on family medicine in all parts of the country delivering to regions of responsibility. The ethical committee approval have been taken from an university hospital ethical commission (E-10840098-772.02-4247). Main results and the role of chance Our study showed that the prevalence of endometriosis in developing countries was not insignificant. This survey had 15673 participants, and 2880 (18.3%) were diagnosed with endometriosis. There was a significant difference in the impact of endometriosis-related symptoms on social, occupational, medical, and daily life between the participants with endometriosis and the non-endometriosis participants. The percentage of participants with endometriosis (1.3%) who reported quitting work/school due to pain was statistically higher than the non-endometriosis population (0.6%) (P = 0.001). Also, 21.2% of endometriosis participants reported feeling socially isolated related to their condition (P = 0.001). One thousand one hundred fifty-two individuals with endometriosis reported work/school difficulties (28.3%), and 224 respondents could not attend class/work due to endometriosis-related symptoms (7.4%). In addition, most respondents with endometriosis (46.0%) reported problems in a personal relationship, and interestingly, according to 1820 (63.2%) participants with endometriosis, people did not believe their pain or symptoms. There is also this to consider: our data shows that the average number of physician visits before diagnosis was four. Limitations, reasons for caution The study is limited by self-reported patient responses that were not confirmed by medical records or other complementary data. Wider implications of the findings Our findings can be used to increase awareness of the prevalence and challenges of endometriosis carriers, which may help develop future prevention programs. Since most participants with endometriosis experience financial difficulties due to their treatment, health policies can be designed to improve this issue. Trial registration number not applicable
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