Endometriosis-associated pain, social impact, and information through internet survey

Abstract

Women with chronic pelvic pain, infertility and dysmenorrhea try to search for help about their problems. Although the most important symptoms of endometriosis are chronic pelvic pain, infertility, dysmenorrhea and dyspareunia, laparoscopic assessment in combination with histological examination remains the gold standard for the definitive diagnosis of endometriosis. The lack of information about these problems is accompanied by both uncertainty and emotional distress. Since the information should be easily accessible, an internet platform was developed by the EEIC allowing extensive information on endometriosis and also providing a so-called ÄEndo-Test' as well as anopen discussion forum. The needed information of endometriosis was studied through discussion forum and the endometriosis-associated symptoms and social impacts were collected through an internet questionnaire. The data were collected in an interval of time. Discussion forum were limited from January 2002 until July 2004. 2202 internet consultations were identified and analyzed. 10665 questionnaires were filled out from July 2003 to July 2004. 20 internet Web sites about endometriosis were evaluated based on criterion, which were published by Huang et al. Women with pelvic pain, dysmenorrhea, infertility, and dyspareunia need moreinformation about fertility, diagnosis of endometriosis, pain treatment, followed by tailoring of hormonal therapy, and follow-up after surgical therapy. 71% of our studied population (7616 of 10665 respondents) had chronic pelvic pain and the prevalence of chronic pelvic pain among our total visitor was 3.2% (7616 of 241,393). Extensive chronic pelvic pain was reported by up to 43% of the respondent.The distribution of dysmenorrhea was 97% (10332 of 10665 respondents) and theprevalence of dysmenorrhea among studied population (10332 of 241,393) was 4.3%. The distribution of dyspareunia was 61% (6479 of 10665 respondents) and theprevalence of dyspareunia among studied population (6479 of 241,393) was 2.7%.The distribution of infertility was 39% (4179 of 10665 respondents) and the prevalenceof infertility among our visitors (4179 of 241,393) was 1.7%. Quality of life was significantly reduced by a more frequent dysmenorrhea and higher endometriosis score (p<0.0001). The majority of respondents (51%) reported about extremely reduced quality of life. Productivity was significantly reduced with a higher endometriosis score (p<0.0001). Up to 50% from the respondents had an extreme limited productivity.More than 10 disability-days from work per year were reported by 296 (6.1%)respondents with the highest endometriosis score.27.2% (2906 respondents) having the highest endometriosis score could be suspected tohave endometriosis. Further study should be aimed at finding the correlation betweenthe questionnaires and the diagnosis of endometriosis.Information about definition, pathogenesis, symptoms, diagnosis, treatment,rehabilitation of endometriosis and also supportive therapy inclusive self-help group,chat room, online consultation can be found on the internet. The source of informationis considered a marker of quality, but the source does not guarantee that the informationis relevant and comprehensive.Web sites such as familydoctor.org, www.endocenter.org, www.endozone.org,www.endometriose.de meet the standard criteria. The HON certificate could help thevisitors to evaluate the quality of the Web sites. Professional organizations, universities,and government agencies are considered reliable and credible sources of health information on the Web. Standardization and certification could help the patients or internet surfers to find and evaluate the Web sites by themselves.