Filmmaker Shannon Cohn on 'Endo What?,' a movement to address endometriosis

In 2016, producer and director Shannon Cohn created Endo What?, a film that gives an accurate, up-to-date base of knowledge about endometriosis, straight from experts. Cohn, who had dealt with the effects of endometriosis her whole life, is raising two daughters who are seven times more likely to have endometriosis because their mother does.

Thanks to Cohn’s expansive background in research and activism, the director was not content to abandon this film after its release: She has since grown her work into an entire movement. Cohn recently teamed up with Senator Elizabeth Warren and Senator Orrin Hatch to bring endometriosis treatment, research, and awareness to the forefront of the Senate’s health care agenda.

Cohn — who, by the way, used to practice international law and was part of the team that prosecuted Enron — recently spoke to the FBomb about her work and hopes for Endo What?   

The FBomb: What was your diagnosis story?

Shannon Cohn: My story reflects the story of so many. When I started having symptoms at 16, I was told that it was normal and that I was exaggerating. I just kind of grinned and beared it for many years — through college, through law school, then [when] I started working. It wasn’t until I was in grad school at NYU [Tisch’s Graduate Film and TV Program] that I was diagnosed. I was on set and working crazy hours and in so much pain. By complete and utter luck I googled “gynecologist near NYU’s campus” and I found one that was on Spring Street in SoHo who was an endometriosis specialist. She told me [she]  would be shocked if [I] did not have endometriosis and, of course, it was endometriosis. That was 13 years [after] I first had symptoms.

[The doctor] did excision surgery, which is when they go in and they cut out the lesions of endometriosis instead of doing ablation, which is kind of like burning the surface of the lesion with a laser. Ablation usually doesn't really help most people because you’re not getting the disease out, you’re just burning the top of it.

Why do you think people are so ill informed about endometriosis?

Unfortunately, the media often gets [endometriosis coverage] wrong. Also a lot of the medical resources  online — like the NIH or the Mayo Clinic — have incorrect information on their website. We’ve had the same research [and] the same drugs for three decades. That needs to change. A journalist goes [on these sites] thinking that he or she is going to find a reputable source and then no, it’s not accurate.

But we also still don’t know what causes the disease.There are so many more questions than answers. So until we know the cause, it’s so hard to say, ”Once we determine you have this, this treatment is going to help you no doubt!”

Which methods of treatment for endometriosis are you championing through this movement?

I think that excision surgery is the best treatment so far, but unfortunately there is a financial barrier to it: Most people who do it are out of network, so it’s really not a realistic option for a lot of women. I haven’t had to have more surgery in the eight years since the excision surgery. It’s like: Do you want the tumor out of your body, or do you want someone to come in and burn the top of the tumor? It’s a no brainer, right?

I think some of the most promising research is the non-hormonal treatments of the disease. Mary Alice, my partner at Endo What?, founded the Boston Center for Endometriosis, and one of their main researchers, whose name is Michael Rogers, has a cancer research background. He’s approaching endometriosis from the mindset of what he learned from cancer research. A major focus of Dr. Rogers’ laboratory is the identification of new molecular targets for disease therapy.

Which treatments do you find to be the most problematic?

[There are] a lot of hormonal treatments that kind of help for a short period of time, but as soon as you go off of them, your symptoms usually come back. Then you have to deal with any side effects that may pop up.

Not every treatment works for everybody; it’s such an individual disease. It’s time for different types of medical treatment beyond hormonal manipulation. That’s just been around for decades.

How did you get Senator Warren and Senator Hatch to support the movement?

My Endo What? co-founder Mary Alice is connected to Senator Hatch. She’s also been a long-time resident of Massachusetts as well as a women’s health advocate, so she also had connections to Senator Warren. Mary Alice and I approached both senators to tell them about the facts about endometriosis and what we were trying to achieve [with this movement]. They were completely shocked; Senator Hatch told us that even though he has been enacting health care legislation longer than anybody, he had never even heard of this disease. His granddaughter has endometriosis, and until she said something about it and we told him all of the facts he was like “This is absurd. Why don’t I know? I need to know these things!”

Of course Senator Warren is amazing and such a champion for women’s health that she was immediately on board. Endometriosis is such a serious disease that predominantly affects girls and women, and really holds them back from excelling in their lives — and we don’t have solutions or even proper methods of diagnoses for these people. Because of the taboo around endometriosis, people don’t want to talk about it. If we’re not going to break the taboo now, when are we? It’s a perfect time to be like “OK, enough of this before more people get hurt.” There’s a human cost to this.

Endo What? has been working on equipping school nurses with “endometriosis toolkits.” What does that initiative entail and how is it going?

We send a toolkit to the nurses that includes a poster, our film, a lesson plan, a discussion guide, and an eight-page packet that helps the nurses learn how to recognize the symptoms of endo. It really is meant to give them an accurate symptom profile, and give them suggestions on how to work with the kids.

The program is going really well! We launched just a little bit over a year ago and have gotten to approximately 700 schools in the United States. Hopefully giving school administrators and school nurses the tools they need to identify girls with endo and point them into the right direction.

What other awareness initiatives are you working on with your powerhouse team?

We are actually in production on a second film that we are going to release next year. It follows four women with the disease — a teenager, a woman in her 20s, and two in their 30s — for over four years. We are showing the human cost of the disease.

Working with these women on this film has fortified my conviction that we really need to shine a light on this disease, especially going beyond preaching to the choir. The women who have endometriosis, of course they need to be informed, and that was the goal of the first film we put out (Endo What?). This next film informs the mainstream about what is really going on in these women's lives.

We are also going to release nine to ten more PSAs with different celebrities this summer. The idea is that these clips will go on social media so that the public can put different faces to the disease so that we can really get the word out there in a huge way.

What sets the Endo What? movement apart from other endometriosis awareness initiatives?

What we are doing is really entirely patient led and puts patient first. We do not take any funds from pharmaceutical companies, and we are very unique in that regard. We have no industry ties. We just believe it is a conflict of interest. I know that there are certain financial realities, but how can you truly put your patients first if you are beholden to different corporate interests?