If you had to narrow down the most important thing in life… you may conclude that it is your health. If you don’t have good health, you can’t have quality of life – or can you? If you have chronic pain, is it still possible to smile or laugh, enjoy a film, a birthday party, a concert? Certainly, there are varying levels of chronic pain and poor health and they don’t just affect the person living with it. There is your circle – your friends, your family, co-workers and the public. Pain can look invisible to an outsider but there can be a real knife-fight going on inside somebody’s body and they’re doing their damndest to fake normalcy. It’s not always at top of mind when you see someone agitated at the grocery store and snapping at someone. I think we could all try to be a little more empathetic to individuals living with chronic pain and take some time to listen.
Some forms of chronic pain seem to choose its host, based on gender. Endometriosis affects 1 in 10 women, but that number could actually be higher. Since being officially diagnosed with the condition involves surgery, many women still continue to be undiagnosed. As a man, I had no idea of the numbers of women impacted by this condition but I was up for an education when I knew I was going to be chatting with filmmaking dynamic duo – Camille Hollett-French and Dr. Ipek Ensari about their film, Endomic. Both women were brought together through the Symbiosis Competition for the 13th Annual Imagine Science Film Festival in New York City. It will be premiering at the Slamdance Film Festival as part of the festival’s inaugural Unstoppable program for visible and non-visible disabilities this February 12-25.
ENDOMIC is seen through the unique “snarky” lens of the two women creators who deal with the disease on a daily basis; Ensari, through her work, and Hollett-French with her own health saga that started long before she was diagnosed with “endo” in 2016. There is a wealth of information that is easily digested and there’s even an angry uterus named ‘Andy The Angry Uterus’ that pops in from time to time, much like sporadic pain. This film is long overdue and it has the potential to start conversations, spread awareness and generate more research for a cure.
Camille Hollett-French is an multi-award winning director with a plethora of accolades, such as the £20,000 Craghoppers Film Prize Winner (UK), a Women in the Directors’ Chair (WIDC) 2019 Alum, a Whistler Film Festival Producers Lab 2020 Alum and recently won “Best Live Action Short” at the 2020 Calgary International Film Festival and the “Avant Garde Award” at the 2020 Imagine Science Film Festival (NYC) for her film FREYA. You can also catch her on The Twilight Zone, Motherland: Fort Salem and Big Sky. Ipek Ensari, PhD, is currently on faculty at the Data Science Institute at Columbia University. She works on Citizen Endo, a research project that uses patient-tracked data to better understand endometriosis. Her current research areas include investigation of endometriosis through mobile health-based techniques, health disparities among racial/ethnic/sexual minority groups, and personalized approaches for disease self-management using machine learning models. This is also a Science Film Productions, Ensari’s new science-themed NYC-based production company.
Symbiosis selects 6 scientists and 6 filmmakers worldwide and pairs them to make a science-inspired short film from concept to completion in 8 days.
HNM “How did you both come together to create this film for the Symbiosis Competition?”
CAMILLE “It all stemmed from my last film Freya, which recently won Best Audience Choice and Best Directing at the Vancouver Short Film Festival. It had screened at Imagine Science, which prompted an email to my producer and Ipek. My producer asked if I’d be interested in submitting, which I did. Through a series of events, we reached a point where it was 1-week prior to the competition and they were allowing us to see the rest of the participants. After reading that Ipek does research work around endometriosis, she was my first choice. I was diagnosed with endometriosis in 2016 and since then it’s been a dream of mine to make a film about it.”
HNM “Does that mean, you already had something prepared on the subject before teaming up with Ipek?”
CAMILLE “No, but I was trying to crew up beforehand, if we were accepted. It was interesting to gauge the reactions of some of the people I’d ask. You could tell who would be on the project by looking at their faces when I asked them. It would either be complete dread and terror… or they’d be really excited and couldn’t wait to get started. I think our cinematographer, Tanya Jade was the first to say that it’s scary but exciting. I was trying to find enough people, so I could hit the ground running once we found out if it was accepted, but everyone wanted to know when we’d start production – and all I could tell them was, I’m not sure if I’ll need you or not, until Thursday.”
HNM “Now Ipek, was it difficult for you to dedicate your time to the project, as an active researcher?”
IPEK “I’m a research scientist at Columbia University and do work full time… but thanks to Camille, it has been smooth. I have to give her so much credit for making the scheduling work and for her kindness throughout it all. The other part of this is, the themes that we cover are so central to my work. It was so organic, I almost didn’t feel at all that I had to switch my research hat to my filmmaker hat in the evening. If I was writing something up, I could send it to Camille to ask her opinion on it. There were also discussions that we’d have, which would inspire my work at the university – so they’d crisscross really nicely, in that sense.”
HNM “I was fascinated to learn that there wasn’t a lot of progress in finding a cure for endometriosis.”
CAMILLE “I had a conversation with my doctor after a second surgery in 2019… and she thought there were great options available for women living with the condition – then suggested I go on stronger pain meds, even after I informed her that they were wreaking havoc on my body. She suggested that the other choice was a hysterectomy and to consider both as viable options and to let her know. That to me, is very indicative of what the problem is. We can’t have access until we shift our mindset toward ‘what needs to be done’ and how important that is. When it comes to chronic illnesses, it’s not just about finding a way to live with it, it’s also about living fully.”
HNM “Now Ipek, I’m sure that you must be quite informed on the funding available in finding a cure, but is there more that could be done to better initiate more research?”
IPEK “One of the bottlenecks with that is, we have very limited funding for endometriosis in general, in regards to treatment, finding a cure and self-management. It doesn’t get enough attention and there is a lot of room for improvement. As a researcher that does research on patient oriented/self-management of their health and their disease – I’m a big proponent of not removing an organ if you have a problem with it or medicating until the pain caused from the organ is gone. I’m very much a believer in self-management and self-regulation through a holistic approach in determining how to live your best life, a quality life. You can come across people that live with a lot of pain, but they can report that they are very happy, they’re content and have a high quality of life, due to having a great support system of people that are empathetic to their condition. It’s a multifaceted and multi-layered situation that we need to look at and we really need a multi-perspective approach to target endometriosis to give individuals a much better life that they’re currently getting. We also need more research funding, so that we can investigate some of these open research questions. The patients also need a toolbox, so they can regulate things on their own – rather than waiting for a surgery that’s 6 months down the road.”
HNM “Is this condition still very difficult to diagnose?”
IPEK “It is. The average time for diagnoses is 7 years but if you look at the literature, it is even up to 10 yrs. There’s a lot of doctor shopping and you cannot even get an official diagnosis until you have surgery – so the entire procedure is very evasive.”
CAMILLE “The numbers are even higher than that, because many times women will be told by many doctors – that they suspect they could have endometriosis… but there’s no point in doing the surgery to confirm it because there’s no cure, so try these meds. There’s this big question mark – with what’s going on here. If you don’t have all of the proper data, how can you find the source and the solution. You also can’t deny that we’re talking about ‘women’s health care’, which is historically ignored, more than its counterpart; there’s definitely systemic issues in terms of health care that’s predominantly for women.”
HNM “Is part of the problem for lack of funding for this research, due to it being a new field of research?”
IPEK “The first description or mention of endometriosis was back in around 1900, where it was first clinically described. It has been around a long time but it’s been largely ignored. This could be due to the way it was portrayed in literature – saying that it was a disease that Latin women or wealthy career driven women get. Even though we now realize it’s not from those things, over the decades it’s led to the belief that it might be over exaggerated menstrual pains as opposed to trying to understand it and collect more data on it. To be fair, it’s getting better but the research funding isn’t thriving. If a physician is better informed, more aware and more vigilant about this condition, at least send the evidence – so they can do evidence-based practice to help their patients. That’s where the other bottle-neck happens, so we need a more systematic approach.”
HNM “Has there been any recent breakthroughs?”
IPEK “I wouldn’t say breakthroughs but last year, they did increase the funding. It went from a whopping $9.00 per person to $13.00 per person. It’s still very low and about 35th from the bottom if you were to list everything being funded at the federal level. Younger physicians have a better awareness and more informed approach to this condition and I think that is a starting point and can help us to make better advances. I believe we will have a breakthrough soon in the area of self-management, because it is a low-hanging fruit and it does happen to be my area of research. We do have evidence from pilot work, but I need large scale federal funding to get to a point where I can reach findings with the public.”
HNM “When you mentioned ‘self-management’ are you referring to ways that you can self-manage the pain and discomfort?’
IPEK “Physical activity is one approach that is very attractive because it doesn’t have the same side effects or adverse effects that the drugs have. It also has additional health benefits and the reason I bring this up, is because we do have evidence from other chronic pain conditions that benefit from targeted personalized exercise. It would look different for every patient. You can actively stop pain if you can stop the cascade/expurgation of pain. Exercise is just like a drug, a medicine that needs to be prescribed and has many parameters. There is also more research going on to create better effective pain medications but with the current opioid crisis they’ve stopped prescribing them. In the long term, patients don’t want to be on pain medications and many physical therapists that I’ve spoken to, have told me – one of the primary reasons people take physiotherapy, is to get off their pain medications. They’re looking for a different approach to target their pain.”
CAMILLE “One of the very cool little mobile learning models that Ipek works on is an app called Phendo, that has 13,000 participants worldwide, for patients to track everything on their own. It’s a crowd sourcing model for finding solutions for health problems. In our film, we show that there is a huge discrepancy between the information showing up in medical reports that doctors are writing and what patients are saying. Regardless of the reason it’s happening, it’s creating an inaccurate picture of what’s really happening. Apps like Phendo, that Ipek and her colleagues are working on are really important, they’re innovative and it gives a voice back to the patients, which is very important and a powerful thing. It’s part of that first big step and it’s exciting.”
HNM “What do you hope for your audience to walk away with?”
IPEK “We have multiple goals, but initially we want this to be a conversation starter to raise awareness about some of the disconnects that pertain to endometriosis. We would love for everyone in the world to see this film, it’s not just for the people that live with the condition, but also for their families, their friends, their partners and physicians. A lot of these issues pertain to other chronic conditions as well, so there are definite messages that can be applied. The idea of using drug-patient-input and going to the source, listening to the patient and taking it all into account in a more systematic manner has applicability across many different domains and scenarios. We really want to change the system with this film and perhaps it will initiate a domino effect and inspire change down the road.”
CAMILLE “Or tomorrow (laughing). This is why Ipek and I balance each other very well. She has the very pragmatic fact-based approach and I have the crazy approach, but we meet in the middle – where it’s realistic.”
HNM “This is an incredible film to only have 8 days to produce. Did you know that going into the competition?”
CAMILLE “Yes, but it gave us the ability to move fast and run with it. It was a lot like improv, where you have to say yes to a lot of things and find a way to do it, rather than sitting there. If you say no too much to ideas from the team, then before you know it, it’s due tomorrow and we haven’t started. It really helped to give an accurate idea of the endometriosis experience, even in its aesthetic. For instance, our animator and co-producer Phoebe Titus is an exceptional artist and all her work is hand drawn. Our approach – was the fastest and simplest one, which is very much comparable to the endometriosis experience; they’re setting you up with something that hopefully works and you’re leaving the office saying you’ll catch up with them in six months. We used that approach and it worked really well. It actually added to the ridiculousness and absurdity of it all with Andy, the angry uterus. Phoebe started doing sketches on Friday and by that time I had already contacted my costume designer Karyna Barros, who I work with a lot. I called her in a frenzy, ‘Karyna, we need a human size uterus costume!’ She told me to leave it in her hands and the next night she had dropped it off at my home. We started to do the animation around the same time the costume was being made. Karyna was sending photos on the progression and Phoebe was implementing that into her sketches, so the two Andy’s looked alike. We had to go fast and heavy and on the third or fourth day, we completely changed the vibe/script about what we were saying and how we were saying it. I think we all slept about 3 hrs/night that week.”
HNM “There’s a wealth of information in this film but it’s not overwhelming. Was it important to keep that balance?”
CAMILLE “I think Ipek did a really good job of doing that. She’d give us snippets of info and then tell us to pare it down, so it’s accurate. In science, it really matters what you’re saying. If you switch a word out for one with a similar meaning but not the same meaning can change the entire meaning and that’s just irresponsible. Ipek was really good at doing that.”
HNM “Where can the film be seen?”
CAMILLE “It’s going to be at Slamdance from Feb. 12 – 24th on demand. The year is the first year they’re doing very accessible passes and the entire theme for this year’s festival is accessibility and to greenlight yourself. Passes have gone down from 350.00 to 10.00 to access the entire festival. You can buy a pass at Slamdance.com and if you love us, you can vote ‘Audience Choice’ which would help us to make the subject of endometriosis more mainstream and talk about it more and change the system. You can also find us on the handle, ‘A Bloody Crisis’ on Instagram.”
HNM “At the end of the film, there’s a graphic video of a surgical procedure. Dr. Ipek, have you ever performed surgery on an endometriosis patient?”
IPEK “No, I’ve not performed surgery, but through the process of trying to find a video for the credits – I ended up watching many hours of surgery. I also know from the literature about the surgery but I personally focus on the research aspect of the condition.”
This film was an eye-opener for me and an education that I needed. I have had some amazing women in my life and still do. After watching Endomic, I feel like I can better appreciate women for their strength, their humility and their personal sufferings for being chosen, to provide the world with our children/our future. We can all say thank you by donating to medical research.