A new film sheds light on the frequently neglected disease of Endometriosis, bringing awareness to its distressing nature.
Jenneh Rishe, a registered nurse, possesses a relentless spirit when it comes to unraveling health enigmas.
Residing in Los Angeles at the age of 30, she resolved to unravel the origin of her abdominal agony that led her to frequent visits to the emergency room over a span of two years. Alongside this distress, she experienced additional symptoms such as breathlessness. Despite consulting various specialists, including OB/GYNs, pulmonologists, and cardiologists, all the tests yielded normal results.
“I began to contemplate whether I was facing a terminal illness or some exceedingly uncommon ailment. Yet, as I delved into online research, I discovered countless women enduring precisely what I was going through,” elucidated Rishe.
In the opening moments of “Below the Belt: The Last Health Taboo,” a recently released documentary tracking the arduous quest for viable endometriosis treatments, she recounted her journey.
This enduring inflammatory condition, known for its association with excruciating menstrual pain, remains shrouded in misconceptions. Endometriosis entails the growth of tissue similar to the uterine lining outside of the uterus, often affecting the ovaries, fallopian tubes, bowels, and other organs.
Apart from the occasional incapacitating menstrual pain, endometriosis can give rise to excessive bleeding and infertility. According to an international study, women suffering from endometriosis reported an average loss of 10.8 hours per week of work due to the symptoms associated with the condition.
“In spite of the unfamiliarity and unfriendliness of the term ‘endometriosis’ to many individuals who have never encountered it, the reality remains that it affects everyone,” commented Shannon Cohn, the director of the film, in an NPR interview. “Either you personally experience it or you care for someone who does.”
According to the American College of Obstetricians and Gynecologists, this condition impacts an estimated 1 in 10 women of reproductive age. Cohn asserts that the lack of awareness surrounding the disease, both within the general public and among medical professionals, stems from the historical undervaluation and underfunding of women’s healthcare.
The documentary, “Below the Belt,” was recently broadcasted on PBS and is available for free streaming on PBS.org and the PBS streaming service until July 19, 2023. Here are seven significant insights derived from viewing the film and conversing with Cohn.
- Endometriosis extends beyond being mere menstrual difficulties.
Cohn, who encountered symptoms at the age of 16, reveals, “Interestingly, my initial symptoms were related to gastrointestinal (GI) issues. I went through an array of inquiries regarding my persistent stomach aches. It’s actually quite common for individuals with endometriosis to initially manifest GI symptoms rather than experiencing painful periods.”
Additional prevalent indications comprise migraines, dyspareunia (painful intercourse), chronic fatigue, abdominal bloating, and consistent pelvic discomfort throughout the menstrual cycle.
The diverse range of symptoms often poses challenges in diagnosing endometriosis, as surgical intervention is necessary to establish a definitive diagnosis. Typically, patients undergo a lengthy journey, spanning from four to ten years from the onset of symptoms, before receiving an accurate diagnosis.
2. Frequently prescribed medications often provide minimal relief in addressing the symptoms.
When patients visit their OB/GYN complaining of menstrual pain or related issues that arise or worsen during their period, the typical response from the doctor is to prescribe medication for hormonal cycle suppression. Frequently, hormonal contraceptives like birth control pills are recommended, which alleviate symptoms by inducing a lighter period or completely halting the menstrual cycle.
It is crucial to grasp that these hormonal medications do not actually treat endometriosis, as emphasized by Iris Orbuch, an endometriosis specialist featured in the film. “We are using the same medications that have been available for approximately 30 years. They do not eliminate endometriosis; they do not dissolve it,” Orbuch explained. “However, the side effects are likely more detrimental than the benefits that women derive from the medication.”
The individuals interviewed in the documentary recount a range of adverse effects, such as fragile teeth, hot flashes, depression, and an intensified experience of premenstrual syndrome (PMS) akin to “PMS on steroids, on crack, on cocaine, and every conceivable stimulant.”
3. Endometriosis cannot be cured by undergoing a hysterectomy, nor does pregnancy provide a cure for the condition.
“Over 100,000 hysterectomies are performed every year for the disease and…most are unnecessary,” says Heather Guidone, surgical program director at the Center for Endometriosis Care in Atlanta, Ga. Another common myth is that if a person with endometriosis gets pregnant, their symptoms won’t return after their cycle resumes.
Guidone says the idea that both these false notions are based on an outdated theory that says if you stop periods, the disease goes away. A study of endometriosis patients who had hysterectomies and took painkillers showed no reduction in the amount of opioid and non-opioid painkillers prescribed in the three years after surgery.
Why? One theory about the origin of endometriosis is that it’s the result of retrograde menstruation – meaning that during menstruation, some of the shed uterine lining travels through the fallopian tubes and implants in places where it shouldn’t be. People who ascribe to this theory think hysterectomy would help but still is not a cure.
But other surgeons like David Redwine, who also appears in the film, point to evidence that endometriosis tissue actually appears during embryonic development. And so removing the uterus wouldn’t affect that tissue that’s been there since birth.
A hysterectomy is however the definitive treatment for adenomyosis – a disease where tissue from the uterine lining invades the muscle wall of the uterus. Adenomyosis also causes painful menstruation and infertility, and many patients have both conditions.
4. Endometriosis accounts for as much as 50% of infertility cases.
Kyung Jeon-Miranda, a talented artist based in Brooklyn, is among the featured individuals in “Below the Belt.” Her artwork showcased in the documentary serves as a reflection of her struggles with fertility and her deep longing for motherhood. Despite being told in her early twenties that conceiving would be impossible, Kyung, now 39, is actively trying to have a baby with her husband.
Endometriosis can significantly impact fertility through various mechanisms, including pelvic anatomical distortion, scarring on the fallopian tubes and ovaries, hormonal environment changes, and alterations in immune system functionality. Surgical removal of endometriosis and fertility treatments may enhance the chances of achieving a successful pregnancy.
5. A significant number of surgeons perform endometriosis surgery incorrectly.
Laura Cone, a 28-year-old individual from Saskatchewan, Canada, featured in “Below the Belt,” underwent four surgeries conducted by general OB/GYNs. Unfortunately, her condition continued to worsen, interfering with her ability to drive and manage her business. The surgeries Laura underwent involved ablation, a procedure that involves using an instrument to burn away visible endometriosis tissue.
Although ablation is the most prevalent type of endometriosis surgery, it often overlooks tissue that remains hidden from direct observation. Similar to Cone’s experience, many patients find themselves seeking repeat ablations when their symptoms resurface.
“The analogy I often use is, if you have cancer and there’s a tumor, would you prefer someone who lacks expertise to burn off the surface of that tumor, or would you rather have a specialist surgically remove it?” remarks the director of the film, Cohn.
Excision, the preferred surgical method, involves the removal of endometriosis lesions along with adjacent tissue. Studies demonstrate that excision surgery leads to a greater reduction in symptoms compared to ablation, and fewer patients require repeat surgeries.
While routine care OB/GYNs commonly perform ablation, excision surgery requires specialized training and is typically performed by surgeons with specific expertise. It is worth noting that many of these specialists do not accept health insurance.
The film elucidates that despite the substantial difference in procedure duration, both ablation and excision surgeries share the same medical billing codes. Ablation typically takes under an hour, while excision can extend to four hours or more. Ted Anderson, past president of ACOG, acknowledges in the film the economic pressures faced by healthcare providers, including the need to cover staff salaries and overhead expenses. Balancing these financial concerns with the imperative to provide optimal care adds to the complexities of the situation.
In the documentary, Cone’s father shares that he resorted to taking out a second mortgage to gather the necessary $25,000 to fund his daughter’s excision surgery in the United States.
The film highlights that there are surgeons who possess the qualifications to perform excision surgery at teaching hospitals, and many of them do accept health insurance, as emphasized by Cohn.
6. To receive adequate care, patients must assume responsibility for their own health.
Both Laura Cone and Jenneh Rishe discovered information about excision surgery through fellow patients on the internet. Online platforms like Endometropolis and Nancy’s Nook, found on Facebook, offer spaces where individuals can seek advice, share experiences, recommend doctors, and even exchange surgery photos. Additionally, endometriosis specialists and nurses frequently participate in these groups by providing answers to questions. TikTok videos related to endometriosis have amassed over 1 billion views, indicating the significant interest and engagement surrounding the topic.
According to Cohn, when individuals feel unsatisfied with the responses they receive from healthcare providers, they tend to seek information elsewhere. While acknowledging the prevalence of misinformation online, Cohn highlights the importance of conducting thorough research, connecting with others who have shared similar experiences, and piecing together information to gain knowledge and insight.
Cohn advises patients to ask direct and specific questions during medical appointments, particularly when considering surgery. This includes inquiring whether the surgeon performs excision surgery and the frequency of their experience with endometriosis surgeries. Additionally, seeking feedback from other patients who have undergone surgeries with the specialist you are working with can provide valuable insights.
In general, receiving excision surgery earlier in the course of the disease can lead to less suffering since endometriosis symptoms tend to worsen over time during the reproductive years. While changes in diet, exercise, and alternative therapies like massage and acupuncture may provide symptom relief for endometriosis patients, experts emphasize that only excision surgery can effectively halt the progression of the disease.
7. A collaborative bipartisan endeavor is underway to secure increased funding for research on endometriosis.
Emily Hatch, the youngest individual featured in the film, faces the challenge of endometriosis jeopardizing her prospects of attending college as a high school senior from Massachusetts. In a notable scene, Emily’s mother converses with her grandfather, the then Utah Senator Orrin Hatch, expressing concerns. Senator Hatch expresses his willingness to offer assistance.
Emily Hatch, her mother, and Project Endo, the organization responsible for “Below the Belt,” collaborated with Senators Hatch and Elizabeth Warren to secure $9.2 million in funding for endometriosis research from the Department of Defense in 2018. Following Senator Hatch’s retirement in 2019, Senator Mitt Romney has joined forces with Senator Warren to advocate for funding from the National Institutes of Health.
In March, Senators Warren and Romney hosted a screening of the documentary in the Senate. Notably, Hillary Clinton serves as one of the film’s executive producers.
Cohn emphasizes the pressing need for increased research funding to address the multitude of unanswered questions surrounding endometriosis. She expresses the hope for discoveries regarding the root cause of the condition, as understanding this aspect is crucial for developing effective treatment strategies. Cohn also envisions the development of non-invasive diagnostic tools to spare women from enduring years of uncertainty about their bodily condition. Furthermore, she hopes that research efforts will uncover non-hormonal treatment options to expand the choices available to patients.
