The German documentary “nicht die Regel – Ein Dokumentarfilm über Endometriose” aims to show that endometriosis is not the norm. It aims to make the disease visible to the public and to combat false myths about it. To make it clear how many people are affected by endometriosis, the documentary is produced exclusively by endometriosis patients. The entire team consists of cis-women who are themselves affected by the disease. In this interview, initiator Ranya Schauenstein gives us an insight into the making of the documentary and what the future holds for the film about endometriosis. Many, many thanks for your important educational work!

Can you please introduce yourself: Who is all on your team?

Yes, of course. On the team are: Ranya Schauenstein, I am the founder of the project. Dina Tasic is the art director, Tabea Hablützel is our camerawoman, Dora Wojna is the project manager, Miriam Reichel is the editor, Vanessa Dworschak is the content creator and Saskia Höfer takes care of press inquiries and sponsoring. Last but not least: off-speaker is Carina Frei.

Die Doku “nicht die Regel - Ein Dokumentarfilm über Endometriose” möchte zeigen, dass Endometriose eben nicht die Regel ist. Er soll die Krankheit in der Öffentlichkeit sichtbar machen und die falschen Mythen dazu bekämpfen. Um zu verdeutlichen, wie viele Personen von Endometriose betroffen sind, wird der Dokumentarfilm ausschließlich von Endometriose-Patientinnen produziert. Das gesamte Team besteht aus Cis-Frauen, die selbst von der Krankheit betroffen sind. Im Interview gibt uns die Initiatorin Ranya Schauenstein Einblicke in die Entstehungsgeschichte der Doku und wie es mit dem Film über Endometriose weitergehen soll. Vielen, vielen Dank für eure wichtige Aufklärungsarbeit!

Ranya Schauenstein and Tabea Hablützel // Photo Credits: Nicht die Regel

How did you get the idea to make a film about endometriosis? How did you find each other as a team?

As I got I did a lot of research, but simply couldn’t find a full-length documentary about endometriosis in German. I had wanted to make a documentary for a while and then decided to make a film about endometriosis. Together with my friend Dina, our art director, we looked on Facebook for other women with endometriosis and very quickly put together a team of seven women. In June Saskia joined as the eighth member. All my colleagues have endometriosis, just like me. That connects us, even though each of us has made her own experiences. We have a common desire to make a difference and educate more people about this disease. That brings us together.

How has your journey been from the idea to where you are now?

The idea for the film about endometriosis came in 2019. I started a open call and used Facebook to look for women who have endometriosis and work in the film industry. The goal was to make a statement: It affects so many women that a team of people affected can be put together quickly. We then looked for affected women who were willing to talk about their experiences in front of the camera. I was completely touched by each individual story. Whenever a woman confided in me and openly told me about the pain she had to deal with due to endometriosis during her period or in general, it strengthened my determination to make this film.

The documentary is not only intended to create awareness, but also to combat myths surrounding endometriosis. That is why we have sought the support of leading endometriosis experts and have tried to provide a very comprehensive, interdisciplinary insight. This disease affects us women not only during our periods, but also when we go to work, in our free time and in our private lives – in intimate moments and when we think about family planning. This is why not only gynecologists, but also a psychologist, a physiotherapist, a former politician, as well as doctors from the fertility center and others are talking about it. The film is now in post-production. We want to finish producing the documentary with our current crowdfunding campaign and bring it to the big screen.

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Photo Credits: Nicht die Regel

What is it like to work in a team where everyone has endometriosis?

We are eight women and all affected, so we are very committed to the project. Because we do it voluntarily alongside our jobs, the filming took a while. We also shot during Corona, and that didn’t stop us either. The film is now finished and we are in the post-production phase. When eight women have endometriosis, it’s obvious that it takes patience. For example, on some days a team member spontaneously dropped out because of endometriosis. On long days of shooting we tried to select meals according to the dietary recommendations for endometriosis. In addition, we all showed great understanding if someone had to leave the set early or did not feel well for a moment – this is part of the job for a team of people who are all affected.

We often exchanged ideas and gave each other tips during shooting breaks or zoom meetings. The interviews with the experts and protagonists were very exciting and enriching for everyone, because we found ourselves in many stories. That was therefore very inspiring. We are not only a film team, but by now also friends and a kind of self-help group that encourages each other. The “work” has grown close to our hearts. So yes, it needs patience. But it is worth it. It was also an incredibly empowering time and we finished a film in about 1.5 years, shot it and then took it through post-production – including two lockdowns. I am proud of our team!

What has been your favorite moment so far, while turning your project into reality?

Wow, that’s hard to answer, because there are quite a few moments.
– Our first meeting as a team in the Caféhaus – long before Corona
– When the CI by Dina was determined final
– Our first interview with one of the three protagonists
– The confirmation of certain experts such as Jörg Keckstein
– A particularly emotional moment during the interview with Anna Wilken
– Go live of our website www.nicht-die-regel.at and Social Media pages– The start of our Crowdfunding
– DariaDaria shares our project and our following skyrockets

What is your wish and hope for your film about endometriosis?

I have such a big dream, but even if only a little bit of it comes true, I would love it. If our film could help to ensure that at some point a woman or girl no longer has to ask herself: “What is endometriosis?, that would be great.

It would be ingenious if we could contribute to shortening the long diagnostic paths by making society aware of the existence of the disease. It would be great if the documentary could help to minimize the dreaded stigma. Women who fear for their jobs or career opportunities because they could be considered “not resilient” because of endometriosis. It would be nice if the film about endometriosis became an essential part of education. And for me, that is irrelevant for the time being, whether it is in schools, for future managers, in medicine or alternative treatment methods. Every woman should be informed, because only in this way can we make a reflected decision for our bodies.

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Dr. Nadja Fritzer

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Tabea Hablützel

Photo Credits: Nicht die Regel

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Ranya Schauenstein and Tabea Hablützel

What are the reactions when sharing about your documentary?

Mostly good. Many women are enthusiastic about our project and I notice that the reactions are sometimes split. Not in “for” and “against”, but rather in “Oh great, this is really important” and “Endometriosis, what is it?” And that is exactly our motivation in a nutshell. 

What do you find particularly exciting in the educational work about endometriosis?

When women do not know what endometriosis is and then learn about it, something extraordinary happens. Many people wonder why there is still too little information about endometriosis when so many are affected. How is it that in 2020 we still do not know where the disease comes from? This lack of understanding is precisely what drives us. There is something encouraging about it, because it makes us feel that what we are doing is right. 

What is the next step for your film about endometriosis?

Successfully completing our crowdfunding campaign. We are currently at about half of our funding target. We want to collect 19,000 Euro by December 8, 2020. If we don’t achieve our funding target, we won’t get the money we’ve collected until then. So it is all or nothing for us. I am convinced that we will succeed. And we are committed to it! 

Why do we need a full-length documentary film?

Many women accept extreme pain as normal because this disease is unknown and can be very asymptomatic. The media response to this is now increasing, e.g. with magazine articles, articles and podcast episodes or contributions on radio and television. But there is no feature-length documentary film.

There are many aspects that can be discussed in relation to endometriosis. How differently the disease can occur and progress. The state of medical research. How women make the really courageous decision to have an operation – sometimes even several times – or ultimately to have their uterus removed. Involuntary childlessness. The question: How far do I go for my desire to have children? Myths about the disease, for example “endometriosis automatically means infertility”, “endometriosis is curable” etc. Questions about “having to bear pain” and public debates about periods and the breaking of taboos. Education of medical professionals. How should the labor market react to women with endometriosis? After all, the body “cycles” during office hours. What are the psychological effects of this chronic disease?

A continuation of the documentary ?

There are so many angles from which endometriosis can be looked at. And these are general questions. Every woman has a different route with the disease. It is really difficult to choose a first focus. But who knows, maybe there will be a continuation. *Wink* 

INFO-BOX: The crowdfunding campaign will run on Startnext until December 8, 2020, in order to be able to pay for previous initial production costs and to secure financing of the professional post-production. We can all be helping in making endometriosis better known!

Britta Wiebe, period education, Vulvani
Britta
Co-Founder Vulvani | britta@vulvani.com | Website | + posts

Britta Wiebe is the co-founder of Vulvani. She loves researching, writing and designing new articles or innovative educational concepts about menstruation all day long. When she is not travelling the world, she enjoys spending time with her loved ones in the beautiful city of Hamburg in Germany.