Mary Lou Ballweg, Founder, Endometriosis Association
Iris Orbuch, MD, Endometriosis Expert
Heather Guidone, BCPA, decades-long Endometriosis Advocate
Endometriosis is a systemic disease that occurs when tissue similar to the lining of the uterus is found elsewhere in the body & can cause pain, organ dysfunction and infertility. It’s most commonly found in the pelvis, but can also appear in the bladder, bowel, lungs, diaphragm and even the brain. While no one definitively knows the cause, theories include genetics, stem cells and blood & lymph system distribution. Inflammation is a key factor and certain environmental toxins have been linked.
Endometriosis is an individual disease, meaning that different symptoms appear in different people. The most common symptoms are very painful periods (pain so intense that one can’t do their usual routine), nausea, vomiting, diarrhea, constipation, fatigue, migraines, brain fog, pain with urinating, pain with sex, and infertility. While some people may have all of these symptoms, many have only a few or symptoms that change depending on the time of the month. Some people may have no symptoms at all until they have trouble getting pregnant.
Due to gender bias, misinformation and lack of non-invasive diagnostic tools, it takes an average of 7-10 years to be diagnosed. Upon first having symptoms, many girls are told pain is normal, in their heads of part of being a woman. It is not. Endometriosis can not be confirmed by imaging (x-rays, ultrasounds, MRIS, CATscans) or blood tests. It can only be diagnosed by laparoscopic surgery once a doctor receives confirmation from pathology.
There is no cure at the moment, but many people find relief pursuing a multi-disciplinary treatment strategy with excision surgery as the cornerstone. Painkillers and hormonal treatments, such as birth control pills and GnRH agonists, are commonly prescribed by OBGYNS, but these medications are only bandaids to manage the symptoms. It is important to realize that the majority of OBGYNs do not know how to properly treat the disease. As a first step, we suggest finding an endometriosis specialist.
People with endometriosis often feel overwhelmed and alone. We recommend joining one of the below online communities to speak with others and gain valuable insight and information.
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For over a decade, Shannon has produced award-winning feature films and TV series for Discovery Channel and NatGeo. Before that, she practiced international law and was part of the legal team that prosecuted Enron.
That’s what she’s done, but not who she is.
She’s a wife, a mother, a daughter. She’s a woman who lives with severe endometriosis. In her case, that means over 20 years of debilitating pain, miscarriages, multiple surgeries and misdiagnoses.
She started thinking about how little things have changed since she first had symptoms at 16. What if a film could help stop the vicious cycle? A film to put power in the hands of women.
This is that film.
Hailing from Argentina, Patricio ("Pato") is a world-traveling adventurer and filmmaker. For the past decade, he's produced award-winning independent films and TV series for Discovery Channel International and NatGeo. He's currently directing the feature documentary Prudy & Albert, where he filmed for weeks in India among 100 million spiritual pilgrims. He produced and appears in the travel adventure series Sea Nation, which currently airs in over 60 countries.
Endo is a personal experience for Pato as he is Shannon's husband. He understands firsthand the experience of being a partner to someone living with the disease. On making the film, he says, "It's helped me understand both the personal nature of the disease and its pervasiveness. I've heard countless women from around the world repeat similar stories. It's incredible to me that they still have to convince not only doctors and other professionals, but their own family and friends. We're making this film to not only help empower women, but also help those around them better understand what they go through on a daily basis."
Arix's work has aired on Discovery Channel, Comedy Central, Travel Channel, and History Channel. He started working in film part time, producing and directing commercials and short documentary style educational pieces. His production company AZA Productions, focuses on commercial work and film projects. AZA represents several brands, is currently the film company for SEASIDE® FL (location of the 1998 film The Truman Show), and has several films currently in production.
When Shannon asked Arix to join the Endo What team he was hesitant at first: "I knew it was a very heavy subject matter, one that I knew nothing about." After listening to the interview footage and doing research on the disease, he realized the confusion surrounding endometriosis. "There are too many women in the world being misinformed, misdiagnosed, and mistreated. Once you learn the truth about the disease and how it's handled in the medical community, it compels you to educate others. This disease affects everyone in the world, whether we realize it or not."
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