For 25 years, the Endometriosis Association Germany has been tirelessly raising awareness about endometriosis and providing support and advice to endometriosis sufferers. The fact that endometriosis has become increasingly well-known in recent years is also due to the great commitment of the Endometriosis Association! We spoke with the Endometriosis Association and would like to introduce you to the work of the association in more detail in our big interview.
Can you please briefly introduce yourself and the association? Who is behind the Endometriosis Association?
The Endometriosis Association is an association of people affected by endometriosis. The association was founded 25 years ago and basically wants to strengthen the help for self-help in endometriosis. In the past two years, our association has grown strongly. We now have over 2,500 members and support over 50 self-help groups throughout Germany. Our association is managed and directed by a volunteer board of directors. The office is staffed with employees who implement the concrete tasks.
What are the responsibilities of the Endometriosis Association?
In order to achieve our goals, employees and volunteers work hand in hand in various areas: A large and important part of our work is counseling those affected. Every year, our counselors conduct over 1,300 counseling sessions. We offer our counseling services, as well as all other support, free of charge. We provide intensive support for the founding of self-help groups and are also available to help with many other questions and problems. A second important area of our work is education and information about endometriosis. To this end, we create and distribute our own information material, operate several social media channels, and run campaigns to educate and inform. Every year, we send out many thousands of brochures and flyers to those affected, as well as to clinics, practices and other institutions. Our Instagram channel has become the largest German-language channel on the topic of endometriosis. We provide extensive information on our website. We address further topics in various projects and campaigns.
Recently, we have been paying special attention to educating and informing girls and young women. It still sometimes takes several years for those affected to receive a diagnosis and thus adequate treatment. We want to shorten this period by educating young people. To this end, we are very committed to making endometriosis a topic at schools and youth facilities. At the same time, we want to influence the quality of treatment. That is why we have developed our QuEndo certificate. QuEndo stands for “Quality development of self-help friendliness and patient orientation in endometriosis centers”. We certify endometriosis facilities according to a strict procedure based on concrete criteria from the perspective of those affected.
Currently, a very large area of responsibility is the representation of the interests of all those affected vis-à-vis politicians. Together with the community, we have drawn up 15 demands to be made of federal politicians. These demands will be addressed in a large-scale campaign, together with our members and many other affected persons, to many members of parliament and candidates for parliament. Our goal is to make women’s health and endometriosis a topic of federal politics and thus ensure that urgently needed measures, such as the promotion of research into the causes and treatment options, are implemented.
What are the goals of the Endometriosis Association?
We have three major goals that we have been pursuing with our work since our foundation 25 years ago. (1) the education, support and counseling of affected persons and their relatives, (2) the information and education about endometriosis in the public and (3) the cooperation with authorities, associations, institutions and persons who make important decisions for endometriosis affected persons.
What would you like to draw particular attention to? What are your core demands as an association?
We have formulated our core demands very specifically and in detail in our list of demands for the Bundestag elections. These are summarized as: A nationwide public and institutional education, more research and better diagnostics and treatment, consideration of the concerns of endometriosis-affected employees*, creation of political structures for the long-term and fundamental consideration of the interests of endometriosis-affected persons in political decisions and, lastly, international exchange and cooperation in order to participate in the experiences of other countries – not only in the medical field.
What can/should women do if they suspect they have endometriosis?
If a person suspects that they have endometriosis, they should seek the help of a good doctor. However, this is often difficult because gynecologists in private practice still consider endometriosis too rarely or too late as a possible cause of the problem or condition. Therefore, we often advise changing doctors if necessary, until those affected feel they are in good hands and are given the impression that their complaints are really being taken seriously.
What is the best way to contact the Endometriosis Association?
The best way to reach us is by e-mail at info@endometriose-vereinigung.de or by phone at 0341/3065305. You can make an appointment for a consultation on Mondays, Tuesdays, Thursdays and Fridays from 10:00 – 12:00 or Wednesdays from 12:30 – 14:30 by calling 0341 – 3065304.
What do you offer in counseling and how do you conduct it?
Our counselors have a lot of time, extensive experience, excellent expertise and a wide range of methodological skills to help each and every person affected in their individual search for a way to live with their chronic illness. The consultations last up to one hour and are completely geared to the questions and needs of the person affected or their relatives. The team of counselors consists of employees and volunteers. Once an appointment has been made, they talk to the person by phone, chat or video. We also answer inquiries by e-mail.
Are endometriosis sufferers also part of the counseling team?
The team of counselors includes women who are affected by endometriosis themselves, but also women who are qualified in the field of endometriosis counseling and have training in counseling or psychology.
Do I have to be a member of the association for a consultation?
Our consultations are basically free of charge and open to all people, regardless of membership. For our members, we also offer advice on socio-legal issues, such as the application for a Gdb (degree of disability) or appeal procedures. However, this is purely advice, we can not provide legal representation.
What are the advantages for club members?
First of all, every member strengthens our association. The larger our association is, the more forcefully we can formulate our demands. Further advantages of membership are discounts on participation fees for our events such as our annual conference, a regular newsletter for members only, access to the internal area of our website with many professional articles, literature recommendations and our newsletter archive and the described free consultation on socio-legal issues by a lawyer.
The Endometriosis Association certifies practices and clinics together with the Endometriosis Research Foundation and the European Endometriosis League. How does this work?
By May 2020, together with the Endometriosis Research Foundation (SEF) and the European Endometriosis League (EEL), we have certified more than 90 endometriosis centers nationwide and awarded a joint certificate. In this process, the SEF/EEL represented the medical side and we represented the self-help side. This joint work ended in April 2020.
However, it is a particularly important and urgent task for us to emphasize and promote the importance of self-help and the perspective of those affected in endometriosis centers – to demand and qualify it. Therefore, we have decided to develop an independent process of quality development towards more self-help friendliness and patient orientation in endometriosis centers – in short: QuEndo. We have taken this process a step further and now cooperate with endometriosis practices and clinics and actively support them in improving their self-help friendliness and patient orientation. This is done, among other things, by providing free information material, supporting events, arranging speakers, or supporting the establishment of self-help groups.
The audit process itself follows the classic quality circle as it is known from quality management. After the facility has been contacted, a cooperation agreement is concluded, which includes a survey form that records all relevant data and information. Once all documents are available, an appointment is made for an on-site or remote audit. During the audit, the aspects of the questionnaire are discussed with the management, a meeting is held with the social services and at least two patients are interviewed. The facility receives an audit report on the audit, which may contain specific information or recommendations for improvement. If there are no objections, we award the QuEndo certificate for three years, certifying outstanding self-help friendliness and patient orientation.
What successes have you already achieved as an endometriosis association?
A great success of our work is certainly that our association has now existed for 25 years. We have grown steadily over these 25 years and have continuously expanded our commitment. The fact that endometriosis has become increasingly well known, especially in recent years, is certainly also due in part to our tireless educational work. The great demand for our support services, such as our counseling, our publications, and the fact that endometriosis facilities are now actively contacting us to be certified by us are clear signs that we are on the right track with our work. This is also appreciated by many patients who decide to become members of the Endometriosis Association Germany. We also often receive small or large messages of thanks for our work. We are always very happy about that.
How can you get involved with the Endometriosis Association?
There are many ways to get involved. We often call for very specific actions to get involved, such as our #DIAGNOSEENDOMETRIOSE campaign, in which those affected hang up posters in their environment and thus draw attention to the disease, or our campaign for the Bundestag elections #endopolitisch, in which the aim is to approach as many politicians as possible, inform them and hand over our demands. But also a long-term and binding commitment as a leader of a self-help group, advisor, auditor or on the board is possible. We are also happy when those affected write book reviews or experience reports. In our working group Endo. Politically. Active, volunteers can deal with very specific topics and become active. We are also happy to receive your own ideas.
Currently, two women are volunteering to carry out a large sponsorship campaign for the benefit of our work. They have won committed sponsors for this. From July 24 to August 14, the two women and many other people are cycling as many kilometers as possible. The more kilometers accumulated, the higher the sum that sponsors donate for our counseling and education work in schools. #enduranceforendo
Thank you very much for answering our questions and good luck for your future work!
You can find out more here:
Endometriosis Association Germany https://www.endometriose-vereinigung.de/home.html
