The Ger¬≠man docu¬≠men¬≠tary ‚Äúnicht die Regel ‚Äď Ein Doku¬≠men¬≠tar¬≠film √ľber Endo¬≠me¬≠triose‚ÄĚ aims to show that endo¬≠me¬≠trio¬≠sis is not the norm. It aims to make the dise¬≠ase visi¬≠ble to the public and to com¬≠bat false myths about it. To make it clear how many people are affec¬≠ted by endo¬≠me¬≠trio¬≠sis, the docu¬≠men¬≠tary is pro¬≠du¬≠ced exclu¬≠si¬≠vely by endo¬≠me¬≠trio¬≠sis pati¬≠ents. The ent¬≠ire team con¬≠sists of cis-women who are them¬≠sel¬≠ves affec¬≠ted by the dise¬≠ase. In this inter¬≠view, initia¬≠tor Ranya Schau¬≠en¬≠stein gives us an insight into the making of the docu¬≠men¬≠tary and what the future holds for the film about endo¬≠me¬≠trio¬≠sis. Many, many thanks for your important edu¬≠ca¬≠tio¬≠nal work!

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

Yes, of course. On the team are: Ranya Schau¬≠en¬≠stein, I am the foun¬≠der of the pro¬≠ject. Dina Tasic is the art direc¬≠tor, Tabea Hab¬≠l√ľt¬≠zel is our came¬≠ra¬≠wo¬≠man, Dora Wojna is the pro¬≠ject mana¬≠ger, Miriam Rei¬≠chel is the edi¬≠tor, Vanessa Dwor¬≠schak is the con¬≠tent creator and Saskia H√∂fer takes care of press inqui¬≠ries and spon¬≠so¬≠ring. Last but not least: off-spea¬≠ker is Carina Frei.

Die Doku ‚Äúnicht die Regel - Ein Dokumentarfilm √ľber Endometriose‚ÄĚ m√∂chte zeigen, dass Endometriose eben nicht die Regel ist. Er soll die Krankheit in der √Ėffentlichkeit sichtbar machen und die falschen Mythen dazu bek√§mpfen. Um zu verdeutlichen, wie viele Personen von Endometriose betroffen sind, wird der Dokumentarfilm ausschlie√ülich 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 √ľber Endometriose weitergehen soll. Vielen, vielen Dank f√ľr eure wichtige Aufkl√§rungsarbeit!

Ranya Schau¬≠en¬≠stein and Tabea Hab¬≠l√ľt¬≠zel // 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 rese¬≠arch, but sim¬≠ply couldn‚Äôt find a full-length docu¬≠men¬≠tary about endo¬≠me¬≠trio¬≠sis in Ger¬≠man. I had wan¬≠ted to make a docu¬≠men¬≠tary for a while and then deci¬≠ded to make a film about endo¬≠me¬≠trio¬≠sis. Tog¬≠e¬≠ther with my friend Dina, our art direc¬≠tor, we loo¬≠ked on Face¬≠book for other women with endo¬≠me¬≠trio¬≠sis and very quickly put tog¬≠e¬≠ther a team of seven women. In June Saskia joi¬≠ned as the eighth mem¬≠ber. All my col¬≠leagues have endo¬≠me¬≠trio¬≠sis, just like me. That con¬≠nects us, even though each of us has made her own expe¬≠ri¬≠en¬≠ces. We have a com¬≠mon desire to make a dif¬≠fe¬≠rence and edu¬≠cate more people about this dise¬≠ase. That brings us together.

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

The idea for the film about endo¬≠me¬≠trio¬≠sis came in 2019. I star¬≠ted a open call and used Face¬≠book to look for women who have endo¬≠me¬≠trio¬≠sis and work in the film indus¬≠try. The goal was to make a state¬≠ment: It affects so many women that a team of people affec¬≠ted can be put tog¬≠e¬≠ther quickly. We then loo¬≠ked for affec¬≠ted women who were wil¬≠ling to talk about their expe¬≠ri¬≠en¬≠ces in front of the camera. I was com¬≠ple¬≠tely touched by each indi¬≠vi¬≠dual story. Whenever a woman con¬≠fi¬≠ded in me and openly told me about the pain she had to deal with due to endo¬≠me¬≠trio¬≠sis during her period or in gene¬≠ral, it streng¬≠t¬≠he¬≠ned my deter¬≠mi¬≠na¬≠tion to make this film.

The docu¬≠men¬≠tary is not only inten¬≠ded to create awa¬≠reness, but also to com¬≠bat myths sur¬≠roun¬≠ding endo¬≠me¬≠trio¬≠sis. That is why we have sought the sup¬≠port of lea¬≠ding endo¬≠me¬≠trio¬≠sis experts and have tried to pro¬≠vide a very com¬≠pre¬≠hen¬≠sive, inter¬≠di¬≠sci¬≠pli¬≠nary insight. This dise¬≠ase affects us women not only during our peri¬≠ods, but also when we go to work, in our free time and in our pri¬≠vate lives ‚Äď in inti¬≠mate moments and when we think about family plan¬≠ning. This is why not only gyne¬≠co¬≠lo¬≠gists, but also a psy¬≠cho¬≠lo¬≠gist, a phy¬≠sio¬≠the¬≠ra¬≠pist, a for¬≠mer poli¬≠ti¬≠cian, as well as doc¬≠tors from the fer¬≠ti¬≠lity cen¬≠ter and others are tal¬≠king about it. The film is now in post-pro¬≠duc¬≠tion. We want to finish pro¬≠du¬≠cing the docu¬≠men¬≠tary with our cur¬≠rent crowd¬≠fun¬≠ding cam¬≠paign and bring it to the big screen.

Nicht die Regel, Film √ľber Endometriose, Doku √ľber Endometriose, Ranya Schauenstein, Crowdfunding, Startnext, movie about endometriosis, endometriosis, documentary, period pain is not normal, sehr starke Regelschmerzen, unbekannte Krankheit, Vulvani
Nicht die Regel, Film √ľber Endometriose, Doku √ľber Endometriose, Ranya Schauenstein, Crowdfunding, Startnext, movie about endometriosis, endometriosis, documentary, period pain is not normal, sehr starke Regelschmerzen, unbekannte Krankheit, Vulvani

Photo Credits: Nicht die Regel

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

We are eight women and all affec¬≠ted, so we are very com¬≠mit¬≠ted to the pro¬≠ject. Because we do it vol¬≠un¬≠ta¬≠rily along¬≠side our jobs, the filming took a while. We also shot during Corona, and that didn‚Äôt stop us eit¬≠her. The film is now finis¬≠hed and we are in the post-pro¬≠duc¬≠tion phase. When eight women have endo¬≠me¬≠trio¬≠sis, it‚Äôs obvious that it takes pati¬≠ence. For example, on some days a team mem¬≠ber spon¬≠ta¬≠ne¬≠ously drop¬≠ped out because of endo¬≠me¬≠trio¬≠sis. On long days of shoo¬≠ting we tried to select meals accord¬≠ing to the die¬≠tary recom¬≠men¬≠da¬≠ti¬≠ons for endo¬≠me¬≠trio¬≠sis. In addi¬≠tion, we all showed great under¬≠stan¬≠ding if someone had to leave the set early or did not feel well for a moment ‚Äď this is part of the job for a team of people who are all affected.

We often exch¬≠an¬≠ged ideas and gave each other tips during shoo¬≠ting breaks or zoom mee¬≠tings. The inter¬≠views with the experts and prot¬≠ago¬≠nists were very exci¬≠ting and enri¬≠ching for ever¬≠yone, because we found our¬≠sel¬≠ves in many sto¬≠ries. That was the¬≠re¬≠fore very inspi¬≠ring. We are not only a film team, but by now also friends and a kind of self-help group that encou¬≠ra¬≠ges each other. The ‚Äúwork‚ÄĚ has grown close to our hearts. So yes, it needs pati¬≠ence. But it is worth it. It was also an incredi¬≠bly empowe¬≠ring time and we finis¬≠hed a film in about 1.5 years, shot it and then took it through post-pro¬≠duc¬≠tion ‚Äď inclu¬≠ding two lock¬≠downs. I am proud of our team!

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

Wow, that‚Äôs hard to ans¬≠wer, because there are quite a few moments.
‚Äď Our first mee¬≠ting as a team in the Caf√©¬≠haus ‚Äď long before Corona
‚Äď When the CI by Dina was deter¬≠mi¬≠ned final
‚Äď Our first inter¬≠view with one of the three prot¬≠ago¬≠nists
‚Äď The con¬≠fir¬≠ma¬≠tion of cer¬≠tain experts such as J√∂rg Keck¬≠stein
‚Äď A par¬≠ti¬≠cu¬≠larly emo¬≠tio¬≠nal moment during the inter¬≠view with Anna Wil¬≠ken
‚Äď Go live of our web¬≠site www.nicht-die-regel.at and Social Media pages‚Äď The start of our Crowd¬≠fun¬≠ding
‚Äď Daria¬≠Daria shares our pro¬≠ject and our fol¬≠lowing 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 lon¬≠ger has to ask herself: ‚ÄúWhat is endo¬≠me¬≠trio¬≠sis?, that would be great.

It would be inge¬≠nious if we could con¬≠tri¬≠bute to shor¬≠tening the long dia¬≠gnostic paths by making society aware of the exis¬≠tence of the dise¬≠ase. It would be great if the docu¬≠men¬≠tary could help to mini¬≠mize the drea¬≠ded stigma. Women who fear for their jobs or career oppor¬≠tu¬≠nities because they could be con¬≠si¬≠de¬≠red ‚Äúnot resi¬≠li¬≠ent‚ÄĚ because of endo¬≠me¬≠trio¬≠sis. It would be nice if the film about endo¬≠me¬≠trio¬≠sis became an essen¬≠tial part of edu¬≠ca¬≠tion. And for me, that is irrele¬≠vant for the time being, whe¬≠ther it is in schools, for future mana¬≠gers, in medi¬≠cine or alter¬≠na¬≠tive tre¬≠at¬≠ment methods. Every woman should be infor¬≠med, because only in this way can we make a reflec¬≠ted decision for our bodies.

Nicht die Regel, Film √ľber Endometriose, Doku √ľber Endometriose, Crowdfunding, Startnext, movie about endometriosis, endometriosis, documentary, period pain is not normal, sehr starke Regelschmerzen, unbekannte Krankheit, Vulvani

Dr. Nadja Fritzer

Nicht die Regel, Film √ľber Endometriose, Doku √ľber Endometriose, Crowdfunding, Startnext, movie about endometriosis, endometriosis, documentary, period pain is not normal, sehr starke Regelschmerzen, unbekannte Krankheit, Vulvani

Tabea Hab¬≠l√ľt¬≠zel

Photo Credits: Nicht die Regel

Nicht die Regel, Film √ľber Endometriose, Doku √ľber Endometriose, Crowdfunding, Startnext, movie about endometriosis, endometriosis, documentary, period pain is not normal, sehr starke Regelschmerzen, unbekannte Krankheit, Vulvani

Ranya Schau¬≠en¬≠stein and Tabea Habl√ľtzel

What are the reactions when sharing about your documentary?

Mostly good. Many women are enthu¬≠si¬≠astic about our pro¬≠ject and I notice that the reac¬≠tions are some¬≠ti¬≠mes split. Not in ‚Äúfor‚ÄĚ and ‚Äúagainst‚ÄĚ, but rather in ‚ÄúOh great, this is really important‚ÄĚ and ‚ÄúEndo¬≠me¬≠trio¬≠sis, what is it?‚ÄĚ And that is exactly our moti¬≠va¬≠tion in a nutshell. 

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

When women do not know what endo¬≠me¬≠trio¬≠sis is and then learn about it, some¬≠thing extra¬≠or¬≠di¬≠nary hap¬≠pens. Many people won¬≠der why there is still too little infor¬≠ma¬≠tion about endo¬≠me¬≠trio¬≠sis when so many are affec¬≠ted. How is it that in 2020 we still do not know where the dise¬≠ase comes from? This lack of under¬≠stan¬≠ding is pre¬≠cisely what dri¬≠ves us. There is some¬≠thing encou¬≠ra¬≠ging about it, because it makes us feel that what we are doing is right. 

What is the next step for your film about endometriosis?

Suc¬≠cess¬≠fully com¬≠ple¬≠ting our crowd¬≠fun¬≠ding cam¬≠paign. We are cur¬≠r¬≠ently at about half of our fun¬≠ding tar¬≠get. We want to collect 19,000 Euro by Decem¬≠ber 8, 2020. If we don‚Äôt achieve our fun¬≠ding tar¬≠get, we won‚Äôt get the money we‚Äôve collec¬≠ted until then. So it is all or not¬≠hing for us. I am con¬≠vin¬≠ced that we will suc¬≠ceed. And we are com¬≠mit¬≠ted to it! 

YouTube video

Why do we need a full-length documentary film?

Many women accept extreme pain as nor¬≠mal because this dise¬≠ase is unknown and can be very asym¬≠pto¬≠ma¬≠tic. The media response to this is now incre¬≠a¬≠sing, e.g. with maga¬≠zine arti¬≠cles, arti¬≠cles and pod¬≠cast epi¬≠so¬≠des or con¬≠tri¬≠bu¬≠ti¬≠ons on radio and tele¬≠vi¬≠sion. But there is no fea¬≠ture-length docu¬≠men¬≠tary film.

There are many aspects that can be dis¬≠cus¬≠sed in rela¬≠tion to endo¬≠me¬≠trio¬≠sis. How dif¬≠fer¬≠ently the dise¬≠ase can occur and pro¬≠gress. The state of medi¬≠cal rese¬≠arch. How women make the really cou¬≠ra¬≠ge¬≠ous decision to have an ope¬≠ra¬≠tion ‚Äď some¬≠ti¬≠mes even several times ‚Äď or ulti¬≠mately to have their ute¬≠rus remo¬≠ved. Invol¬≠un¬≠tary child¬≠less¬≠ness. The ques¬≠tion: How far do I go for my desire to have child¬≠ren? Myths about the dise¬≠ase, for example ‚Äúendo¬≠me¬≠trio¬≠sis auto¬≠ma¬≠ti¬≠cally means infer¬≠ti¬≠lity‚ÄĚ, ‚Äúendo¬≠me¬≠trio¬≠sis is cura¬≠ble‚ÄĚ etc. Ques¬≠ti¬≠ons about ‚Äúhaving to bear pain‚ÄĚ and public deba¬≠tes about peri¬≠ods and the brea¬≠king of taboos. Edu¬≠ca¬≠tion of medi¬≠cal pro¬≠fes¬≠sio¬≠nals. How should the labor mar¬≠ket react to women with endo¬≠me¬≠trio¬≠sis? After all, the body ‚Äúcycles‚ÄĚ during office hours. What are the psy¬≠cho¬≠lo¬≠gi¬≠cal effects of this chro¬≠nic disease?

A continuation of the documentary ?

There are so many angles from which endo¬≠me¬≠trio¬≠sis can be loo¬≠ked at. And these are gene¬≠ral ques¬≠ti¬≠ons. Every woman has a dif¬≠fe¬≠rent route with the dise¬≠ase. It is really dif¬≠fi¬≠cult to choose a first focus. But who knows, maybe there will be a con¬≠ti¬≠nua¬≠tion. *Wink* 

INFO-BOX: The crowd¬≠fun¬≠ding cam¬≠paign will run on Start¬≠next until Decem¬≠ber 8, 2020, in order to be able to pay for pre¬≠vious initial pro¬≠duc¬≠tion costs and to secure finan¬≠cing of the pro¬≠fes¬≠sio¬≠nal post-pro¬≠duc¬≠tion. We can all be hel¬≠ping in making endo¬≠me¬≠trio¬≠sis bet¬≠ter 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.