“Below the Belt” is a new documentary directed by Shannon Cohn and executive produced by Hillary Clinton that showcases the stories of several women as they overcome the challenges of living with endometriosis.
Back in May, former U.S. Secretary of State Hillary Rodham Clinton strode out onto the stage at the Museum of Modern Art in New York City to shed a needed spotlight on an understudied and often misunderstood condition: endometriosis.
“It’s so maddening that so much of women’s health is still not given the attention it deserves,” Clinton told the packed museum auditorium, making a call to action to the audience, with words that echoed her famous “women’s rights are human rights” speech at the 1995 United Nations Fourth World Conference on Women in Beijing.
The film details the experiences of four women from different walks of life, following them through years of appointments and surgeries, oftentimes marked by setbacks and medical gaslighting, as they try to put a name to their symptoms and chronic, debilitating, pain.
While each woman profiled has a very different story, Cohn’s film does trace a unifying theme that connects them all: resilience.
“We need to do more to continue to raise the visibility of [endometriosis] to get the medical profession to really buckle down and provide the support and services, and we need federal action,” Clinton said at the premiere, which Healthline attended.
“So, thanks to everybody who shared their stories, thanks to Shannon [Cohn] who produced this amazing look at a condition that needs to be dragged out of the shadows and brought into the light of day, so more women can be helped immediately,” Clinton added.
While endometriosis affects about 190 million women and girls globally,
For Cohn and her team behind the movie, the documentary offers a chance to put a humanizing face to the condition, generating more awareness and, hopefully, research.
Endometriosis is a condition where tissue that is similar to that of the endometrium — the lining of the uterus — exists outside the uterus. This can have wide-ranging effects, resulting in chronic inflammation that can generate scar tissue along the pelvis, for example, but can be found in other areas of the body, according to WHO.
Some other examples can include cystic ovarian endometriosis in the ovaries, and deep endometriosis located in the recto-vaginal septum, bladder, and bowel region.
Endometriosis can result in chronic pelvic pain, pain during or after sex, fatigue, pain during urination, painful periods, nausea and abdominal bloating, as well as anxiety and depression, among other symptoms. In some cases, it can also result in infertility.
This constant, consistent pain can have a negative cascade of effects on a person’s life, impacting their ability to work, to carry out normal day-to-day tasks, seriously affecting their social and family lives. It can also be a strain on one’s mental health.
You also might have no idea someone in your life has the disease. A
At the moment, the medical community doesn’t know exactly what causes this condition, with laparoscopy surgery currently the only way to diagnose it with certainty, according to Johns Hopkins Medicine.
There is no dividing line between who can get it. It affects women and other people with uteri all over the world, from all socioeconomic backgrounds and histories.
In the United States, alone, Johns Hopkins reports that endometriosis affects an estimated 2 to 10 percent of women between 25 and 40 years old. While it is most often understood as a condition that affects cisgender women, it can also be diagnosed in transgender, nonbinary, and intersex people as well.
While there is comparatively little research out there on endometriosis in cisgender women compared to other common diseases, there is even less out there on trans and nonbinary people with the condition.
A recent study was announced out of Stellenbosch University that will look at the condition among trans and nonbinary people. While exceptionally rare, endometriosis has even been found in men as well, with just a few documented by “English literature,” according to a 2018 paper.
When asked why it’s important to have her film out there right now, Cohn told Healthline it’s because many of the above facts remain unknown by the general public — and by many members of the medical community as well. She said people often draw a blank when the term is mentioned to them.
Also, during a time when access to care centered around women’s health seems under attack domestically, having a documentary that could potentially reach both national and international audiences is especially powerful.
“I think it’s really important for the 200 million people around the world who have this disease, to have a representation of their experience on screen,” Cohn said. “It’s validating, and hopefully… it’s educational but also empowering.”
Cohn said that often when we discuss diseases that are “quote-unquote ‘invisible,'” it’s hard to paint a clear picture to the public at large about what it is like to live with them. By seeing pain “communicated on screen” you are able to “see someone in pain” and that experience can then be communicated in a way that “is extremely validating.”
“Hopefully we can give endometriosis the platform that it deserves, you know, in this mainstream way,” she added.
“We as humans, we love stories, we’ve been telling stories since history has started being recorded, we love stories and stories resonate deeply with us,” Cohn said. “The goal of documentaries. for example, when you tell a story, you get an audience to care about the people in stories. The hope is — by extension — they care about the issues that those people are going through.”
This film was a labor of love.
Cohn first started shooting footage for the film in 2012, with a different version called “Endo What?” — a shorter educational film released in 2016 — that served as both a tool to de-stigmatize the condition and also serve as something of an opening act for “Below the Belt.”
The new film follows four different women: Jenneh Rishe, a registered nurse and endometriosis advocate; Emily Hatch Manwaring, an endometriosis activist, events coordinator and videographer, and the granddaughter of the late Senator Orrin Hatch (who was also an executive producer on the film); Kyung Jeon-Miranda, a visual artist out of Brooklyn, designer at Somos Arte and director of La Borinqueña Grants Program; and Laura Cone, a Canadian early childhood consultant and endometriosis advocate.
It offers a unique snapshot of some of the most intimate moments in the life of someone living with a chronic illness.
There are scenes of the women at home with their loved ones and caregivers, moments of frustration, and distressing conversations with their providers. There are also moments of levity, of connecting with support systems and community, of fighting for one’s health and livelihood in the face of adversity.
In the case of Hatch Manwaring, who was just a teen at the time of shooting, the film offers a unique look at a young person navigating a confusing disease while heading to Capitol Hill to advocate for more funding and support with her grandfather and Massachusetts Sen. Elizabeth Warren.
The stories are varied and Cohn said she wanted to offer such a broad look at the condition because endometriosis is “an equal opportunity disease.”
“No matter who you are, what race, what nationality, what socioeconomic status, what age, you can have endometriosis,” she explained. “I wanted that to be clear from the subjects that were going to be in the film.”
It’s also a highly personal project. Cohn herself has endometriosis. She first showed symptoms at the age of 16 but did not receive an official diagnosis until she was 29.
Cohn recounted that she spent 13 years chasing after explanations for her symptoms. Sometimes it would be confusing, she would experience painful periods that would be bad for a few years but then “would mysteriously get better.” Then, she would experience gastrointestinal symptoms, and then they would get better.
Sometimes there’d be migraine headaches, but then they would get better. It was this constant ebb and flow of pain and relief, without an explanation.
“It changed without rhyme nor reason from what I could see,” she stressed.
Cohn said one thing that she experienced that was reflected by the subjects of her film was the fact she would “see a GI doctor and they treat you and say ‘ok, nothing is wrong with you from what we can see,’ ” but then she would visit a gynecologist and receive the same thing. Same with a rheumatologist.
It was a constant parade of specialists telling her nothing was wrong, or at least, it wasn’t exactly what she was experiencing, which was incredibly frustrating.
When asked what it was like documenting people who might be going through the same thing she had experienced, Cohn said it was a visceral, powerful experience.
“Holding a camera, tears did come to my eyes more than once, and I would be trying to wipe them away, act like I wasn’t crying, because obviously I wanted to be professional, but I knew intimately the pain, what loss they were going through, on such a personal level,” Cohn explained.
“Honestly, I just felt so grateful that they were letting a camera crew and me into this space, because I know how vulnerable it is when you are emotional, when you are suffering, when you are in pain, when you are feeling a sense of loss, to invite a camera in, to invite people in to experience that, to witness that, I think you have to be really brave to allow that to happen,” she added.
Jenneh Rishe, BSN, RSN, is one of the women who let Cohn into her life. She also founded The Endometriosis Coalition, a nonprofit centered on raising awareness of and educational resources around endometriosis, as well as authored a book about “Part of You, Not All of You.”
In the film, Rishe’s journey as a healthcare professional trying to navigate a healthcare system that doesn’t fully understand or acknowledge her condition is powerful. It also showcases the power that can come from the support of loved ones and caregivers, as her now-husband Joe offers support by her side.
Cohn followed Rishe for about six years, an experience that she said “obviously is not natural,” but offered a unique opportunity to educate others about endometriosis.
“Just to have someone in the room with us was strangely comforting, and also having someone who understood [endometriosis] and offer support — Shannon and I became such good friends and she was just so respectful of our journey,” Rishe told Healthline about the six-year shoot. “She was not pushing and just her being open to how we wanted to share our story made it all so much easier.”
Even though she was a nurse, Rishe said she never knew anything about endometriosis before her diagnosis. It wasn’t really something that came up in nursing school, which has prompted her to make healthcare literacy about the condition one of her main focuses as an advocate. She recently participated in a panel where nurses from renowned hospitals and nursing schools nationwide came up to her and said “‘wow, I didn’t know any of this.’ “
“So, we are not doing a good job at all of educating our healthcare providers in how to spot what this disease looks like,” she said. “We haven’t scratched the surface. And what is happening is that patients and advocates are doing the leg work, we are doing as best we can outside the classroom and the hospital, but there is a lot of work that needs to be done, and to me, we aren’t asking for anything monumental, just education about a disease that is affecting a large percentage of the population.”
Cohn said that when she met Rishe, she felt she has a particularly compelling story to share. They met when Rishe approached her after the release of “Endo What?” and asked if she could be involved in some way.
“The fact that she is a nurse and was still being disbelieved just floored me and I thought it was an important perspective to have,” Cohn said. “Also, as a woman of color, just her experience of dealing with a chronic illness in [our healthcare system], how is that different for her as a person of color?”
Rishe said she doesn’t take the responsibility of her platform, as a healthcare professional, as an endometriosis advocate, as a Black woman offering a look at her experiences with this condition, lightly.
“There are so many reasons this disease doesn’t get the attention it deserves, I personally feel like people care about things they can put a face to. Oh ‘this represents my friend or my sister or my loved one, I know with this disease.’ Everyone has someone they know, they just likely don’t know it yet, so I just thought it was really important that if I’m going to talk about how we need to be talking more about this disease, how can I do that without doing it myself?” she said.
“I thought it was important to have a space that was very authentic to share the good and the bad, but is also educational at the same time so others can have the support to see themselves through my work,” Rishe added.
When asked what she would tell the younger version of herself who appears in the film, Rishe said “I would just like to encourage her in how powerful her voice is.”
Dr. Jeannette Lager, MPH, associate director of the University of California San Francisco (UCSF) Endometriosis Center, told Healthline that using the platform of a film like “Below the Belt” is effective because it “just helps show that there is a lot of public support for something that is missed and misdiagnosed and delayed in diagnoses.”
Lager, who is not affiliated with this film or Cohn’s work, said just the fact that this documentary can show the journeys of a group of different people with different experiences is a special educational tool that can make jobs like hers easier in getting the word out.
When asked why it’s so hard to just direct attention to this disease, Lager said that chronic pain, in general, is “poorly understood.”
“I think there is this issue of people with uteri, so women and nonbinary people, we know there has always been less research invested in gynecologic health,” she added. “The other thing is the overlapping diagnosis of pain and cramping with periods that for some people is normal to have some pain and cramping with their periods that is not endometriosis. So, I think because of the overlapping that is common, it may not be brought to the forefront as much.”
She said all of the associated GI symptoms, urinary symptoms, and complex pain symptoms that aren’t tied to periods and that can result in misdiagnoses, make this a disease that can fly under the radar. A doctor might come up with a diagnosis of IBS and then move on without further investigation. Meanwhile, the patient will continue to experience this inaccurately diagnosed pain.
“I think research can beget research and as we start to understand, for example, radiology findings for endometriosis, ultrasound versus MRI versus other forms of radiological ways for people to identify it better that would allow for even more research, then that would help increase the accuracy for diagnosis,” Lager added. “You would start to have seed money that would lead to other areas that would hopefully grow to lead to other investigations of treatments to help improve the patient’s quality of life.”
Another big issue that leads to so many misdiagnoses is the fact that “the stage of diagnosis does not correlate with the amount of pain” you could be experiencing. Lager said you could have severe pain but be in a “mild phase” of the disease. Or you could have “stage IV endometriosis and not have any pain at all.”
She said that level of complexity isn’t even taking into account all of the overlapping psychological issues with endometriosis and chronic pain.
Dr. Iris Kerin Orbuch is an expert who is prominently featured in the film. She specializes in the treatment of endometriosis and is the director of the Advanced Gynecologic Laparoscopy Center in Los Angeles.
She is closely connected to the film, not only because she is a leading expert in the field but because Cohn was her patient.
Orbuch also has endometriosis herself and came to her diagnosis in a roundabout way, not unlike many of the women who come into her office, looking for an answer after years of misdiagnoses.
She didn’t receive her official diagnosis until January of last year. She said her professional and personal lives first collided when her daughter Alexandra, now 20, was nine years old and started having issues with pain. Orbuch suspected then and there that her daughter had endometriosis. Not wanting to be the one to officially diagnose her own daughter she monitored Alexandra closely, using holistic approaches to alleviate her pain. Alexandra ultimately received her diagnosis at age 18.
After her daughter was diagnosed Orbuch said to herself “you know what? I’m going to trust my gut.”
She said she was gaslit for years over her own chronic pain by medical peers who said “you are taking on your patients’ pain, you don’t have endo.”
“I always wanted to punch my fists in the window in my office when I heard the struggles my patients went through to begin with, just to get to my office,” she added. “When I was finally diagnosed it was like, ‘oh, my God,’ I felt it more. I went through all of these years of pain, of being told ‘no, it’s in your head, you live with this disease, you are manifesting your patients’ pain.’ It’s pretty crazy.”
Orbuch echoed Lager in that she sees a film like this as an impactful tool for dispelling misconceptions.
Cohn said it was so important for the film to have “all of these wonderful, powerful, smart women attached …to help amplify” its message.
“With Secretary Clinton, we got the film to her and she saw it and she just said, ‘I cried multiple times that it was such an important story’ and that ‘I want to do whatever I can do to help and get this conversation into the mainstream and get more awareness around endometriosis,’ ” Cohn said. “And we asked her if she would be an executive producer and she said ‘absolutely’ and she is and has been an amazing partner.”
In addition to Clinton, the film’s other boldface producers include Hollywood actors Rosario Dawson, Corinne Fox, and Mae Whitman — who appeared along with Rishe and Orbuch at a post-screening panel at the New York premiere.
For the rest of this year, Cohn said the film will continue to be shown in various screenings. Right now, she is in the final negotiations for a “distribution deal,” but can’t share those details, yet. The goal is to see that materialize hopefully “early next year.”
“The goal with ‘Below the Belt’ is, yes, it can be entertaining, but it is just so much more than that,” Cohn said. “We want it to be catalyzing change for endometriosis and women’s health.”