Results of internet survey and internet consultation about endometriosis

Introduction: Endometriosis is known to produce intense symptoms like dysmenorrhea, chronic pelvic pain, dyspareunia, infertility and also an impact on the social status of women affected. However, it has been characterized well as disease without lobby since it lacks public awareness, even though being one of the most frequent benign diseases in women. In order to provide adequate and easily accessible information for patients as well as health workers, an Internet Website was created, www.endometriose.de that enables interested people to inform themselves and counsel free of charge on their endometriosis-associated problems. Demographics, symptoms and social situations of the patients were collected through internet questionnaire, placed in the Website. Aim: To evaluate internet based survey and consultation of endometriosis associated problems. Method: An Internet Website, address www.endometriose.de, was developed to inform women and their family about endometriosis. The Website is written mostly in German language with translation in other European languages and provides overall information on endometriosis. By filling out the questionnaire, called “EndoTest“, the patient receives a computerized score as a feedback about the probability of endometriosis. Specific questions can be asked within a forum called “Expert consultation“. The contents of the individual questions were grouped, classified and evaluated. From January 2002 to January 2005, we received 2627 consultations. 14829 questionnaires were filled out from July 2003 to January 2005. Statistical analysis was performed by the cross tabulation and chi-square test. A p value of <0.0001 was considered significant. Results: The prevalence of dysmenorrhea in our population was 68% and chronic pelvic pain 25% respectively. Dyspareunia alone has no direct cause of infertility (p>0.0001). The severity of the endometriosis-associated symptoms increases significantly with the social impact in terms of quality of life, sexual activities, physical activities, productivities, impairment days and annual absent days (p<0.0001). 6% of our respondents had the most endometriosis-associated symptoms and needed more than 10 days absence from work per year. Women are curios about the chance of pregnancy (19%) when they are diagnosed with endometriosis. Other main topics addressed were: diagnostic procedure, treatment of endometriosis associated pain, and hormonal therapies. Side effects of the medical treatment, surgical therapies and alternative therapies occurred less frequently as well as question considering recurrence and disease follow up. Conclusion: Persons using the Internet for searching health information are better informed after reading, interactive tasks and virtual consultation. Websites must not deliver inaccurate information, promotion and marketing that can misguide the whole information. Health provider should be prepared to answer questions and offer suggestions for Internet based health resources. In our study, data collected from www.endometriose.de interactive platform enable us to inform health insurance companies, politicians, and doctors about the needs of endometriosis patients.