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.

Nicht die Regel, Film über Endometriose, Doku über 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 über Endometriose, Doku über 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 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.

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

Tabea Hab­lüt­zel

Photo Credits: Nicht die Regel

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

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.