The recruitment of people with endometriosis for the study took place online through various channels, such as Facebook groups and Instagram pages related to endometriosis.
By clicking on the respective link, participants were directed to the online questionnaire, which was based on the SoSci Survey tool. The questionnaire could be completed either on a desktop computer or on a mobile device.
The selection of symptoms included in the questionnaire was carried out in a three-step process.
First, standard symptoms according to guidelines (severe menstrual pain, lower abdominal pain, pain during bowel movements or urination, etc.) were included. This list was supplemented with symptoms that were mentioned to the initiators through social media and letters from those affected, in order to also capture rare or unusual symptoms. Finally, the list was reviewed and supplemented by experts.
For the remedies, all remedies mentioned by those affected were also collected and supplemented by experts. It should be mentioned that remedies were also explicitly included for which an effect is not proven, if they were mentioned in social media or letters, in order to get an impression of distribution and effectiveness.
All participants were informed at the beginning of the questionnaire about the goals of the study, the anonymity of their information, and the contact details of the medical management for questions, and then explicitly consented to participation.
Auf einer 5-er Likert-Skala konnten die Befragten angeben, ob die 49 erfassten Symptome bei ihnen "gar nicht" bis "sehr stark" vorliegen. Ebenso wurden die 32 Maßnahmen zur Symptomlinderung mit einer 5-er Likert-Skala erfasst, von "gar nicht hilfreich" bis "sehr hilfreich".
In addition, it was recorded when endometriosis symptoms occur: During the period, in the week after the period, around ovulation (middle of the cycle), in the week after ovulation, or in the week before the period.
The planning, implementation and evaluation was the responsibility of Endo Health GmbH.
The recruitment was supported by a large number of multipliers. Special thanks go to the Endometriosis Association.
In the statistical analysis, we also received voluntary support from Dr. Carole Dording.
The aim of the survey and evaluation was to deepen the understanding of endometriosis. An exploratory approach was taken. The data should not be considered representative due to the recruitment and questionnaire design.
Accordingly, this survey and evaluation is not intended to meet the high requirements of comprehensive scientific research. There is no guarantee or warranty.