Jumbo Sized Tampons and Excision Surgeries: The Bloody Trail of Endometriosis
- Roxana Azizi
- Mar 10
- 7 min read
What renders someone’s blood loss insignificant?
Most importantly, what makes a disease “silent” even with 170 million victims, or 10% of the global population of women, experiencing this condition?
As Jenneh Rishe, a registered nurse, recounts on The Today Show, her journey as one of these silent sufferers began when “she felt a pain that is etched in her memory.”
After almost four years of cyclical nausea, exhaustion, and strain, Rishe finally got the endometriosis diagnosis that she deserved, albeit after rounds and rounds of excruciating pain that left her unable to drive to work or walk from her bedroom door to the kitchen.
Much more than a painful, bloody period, endometriosis is a chronic disease “in which tissue similar to the lining of the uterus grows outside the uterus, causing a chronic inflammatory reaction.” It is essentially internal bleeding every month. But what exactly defines the line between a period and a gynecological disease? During endometriosis, the endometrium, the lining of the uterus, is shed into the abdomen as opposed to shedding out of the uterus. It is a progressive disease. In other words, endometriosis can lead to chronic pelvic pain and the accumulation of scar tissue, a product of heavy shedding, which can make this pain worsen over time. It is, additionally, accompanied by the slurry of symptoms that come with losing 80 ml or more of blood per cycle (almost 2.5 ounces and roughly 20 mL or more above the average amount lost during menstruation). These include bloating, pain during defecation, constipation, nausea, brain fog, fatigue, and what some women describe as “sharp cramping” that can be beyond the scope of over-the-counter medications. It is often endometriosis’ chronic intestinal and urological symptoms, such as bloating or pain during urination, that can differentiate it from other menstrual cycles. However, the “subjectivity of pain” and the frequent dismissal of pain with menstrauation make it difficult for patients to understand the severity of their symptoms.
The word “chronic” also holds a substantial bearing on the definition of endometriosis and, in turn, how it should be treated as well. As Dr. Taylor, a leading endometriosis researcher, reported, new research has shown that “the inflammation from endometriosis can activate white blood cells and create inflammation throughout the body… [which] can travel to different organs.” This body-wide cascade of changes can be responsible for the higher rates of depression and the “central sensitization of pain,” in which those with endometriosis might be more sensitive to painful stimuli, that so many people report.
The word may sound foreign to you. Maybe vaguely resemblant of some word tossed around in health class. Scary enough, for some physicians, such as Rishe’s own gynecologist and Director of Advanced Gynecological Laparoscopy Center in LA, Dr. Orbunch, four years of OB-GYN residency and all of medical school barely skimmed this disease. Almost 63% of general practitioners still feel uncomfortable diagnosing and treating endometriosis and half can't name the three main symptoms.
For Jenneh Rishe, her years of fighting for her body, including 7 trips to the ER with severe abdominal pain and a decade of searching for answers, finally ended in a surgery room, culminating in an excision procedure that would meticulously remove the disease from her body. This oftentimes involves making small incisions around the abdomen to insert the laparoscope camera and other surgical tools to both visualize and remove the endometrial tissue outside the uterus.
As shockingly undiscussed as it is, 1 in 10 women still experience endometriosis, dubbing them the “silent sufferers” under the bloody shadow of systematic neglect, medical gaslighting, and chronic underfunding of research surrounding women’s health. Most of these patients wait almost 4-11 years for a diagnosis, adding to endometriosis' unfortunate collection of harrowing patient stories. Among the reasons for misdiagnosis, physician-related causes of diagnostic delay remain paramount. Patients who reported painful cramps, for example, were “found to have a longer delay in diagnosis, than those who denied those symptoms.” Unfortunately, the tools used to diagnose endometriosis, such as an ultrasound machine, have not been shown to be entirely successful when diagnosing adolescents as well, leading to relatively high rates of delayed endometriosis diagnosis among teens. For example, atypical lesions are more common in adolescents but are harder to detect. However, sites such as EndoFound can impart helpful and relatively accessible information regarding endometriosis, providing an outlet outside medical spaces that might misdiagnose or “ignore” endo symptoms.
As detailed in the documentary headed by both Rishe and Dr. Orbunch, “Below the Belt,” the road to diagnosis is arduous, painful, and oftentimes advanced by patients themselves, with a huge portion of them finding out about endometriosis through Facebook posts or other online streams as opposed to proper medical offices. For some of the women interviewed, it took upwards of 35 physicians and an unfortunate assembly of sugar-level tests, colonoscopies, upper endoscopies, ultrasounds, and laparoscopies to reach diagnosis. This can lead to significantly decreased levels of productivity, with an average of 19.3 days of missed work due to endometriosis treatments and symptoms, $30,000 of debt from medications and doctor’s visits, and, as 82% of those with endometriosis reported, an inability to carry out day-to-day functions.
When excruciating pain– the likes that incapacitate you from walking around your apartment– is normalized, this bloody shadow of medical negligence under which thousands of women lie grows, obstructing the already limited information surrounding menstrual care from making its way to the patients rightfully seeking answers after years of agony. This lends itself to a broader conversation surrounding menstrual education.
Dating back to the third century BCE, women’s bodies were seen “as the inverse of the male body,” with any anatomical differences being chalked up as “defective” body parts. In this sense, the basis of medicine, a commitment to healing for all, is built on anything but impartiality. This bias towards seeing men’s bodies as the “ideal body” lingers today in modern medications, on the shelves of pharmacies, and doctors' offices. It wasn’t until 1993 that women were included more in clinical trials, and, even at that, only women with life-threatening conditions could continue in Phase 1 and 2 of clinical trials, as many health agencies feared that the “reproductive potential” of women’s bodies could be compromised. The ramifications of medicine’s fractured view on women’s bodies serve as one of the sources of women experiencing “adverse effects from medications at twice the rate of men,” as well as the chronic misunderstanding of endometriosis’ health effects and symptoms in the 21st century.
As part of the “ignorance studies,” the historical descriptions of endometriosis display women’s hysteria (or “behavioral disturbances believed to be caused by the uterus” first propagated almost 2,500 years ago). In doing so, these studies link endo with social deviance as opposed to a legitimate medical condition. Therefore, women’s pain in modern-day medicine is still underlooked, often skewed as an act of social disturbance, with women being less referred for further diagnostic investigations and more likely to be offered minor tranquilizers than more effective pain medications.
Places like Rishe’s own program The Endo Co and Endometriosis Foundation of America are notably spearheading the charge on this, publicly addressing the repercussions of misdiagnosis on public platforms. Most notably, in September of 2023, Jenneh Rishe met with the office of Pennsylvania Senator John Fetterman to discuss greater research funding surrounding endometriosis. However, a widespread misunderstanding of the full symptom profile and repercussions of untreated endometriosis from lackluster medical education in residency programs/medical schools continues to ravage the lives of thousands.
By implementing new approaches, such as broadening the scope of patients in modern-day clinical trials to involve a diverse group of women with different backgrounds and health conditions, or including the symptom profile for common gynecological conditions (such as endometriosis) in health classes, we can actively address this gap in medicine. In order to begin, we should start by including in the public school curriculum teaching the“common symptoms” of menses, along with symptoms that are indicative of other conditions, including chronic pelvic pain for endometriosis. This implementation could lead to greater exposure to menstrual diseases, which is needed to destigmatize these medical conditions. Additionally, by providing free menstrual care products in shared spaces, such as university bathrooms, we would legitimize these products as necessities for health-related human rights. They are, after all, used by a sizable portion of the globe.
We also need to increase fundraising initiatives for women’s health. While research that includes women for general clinical trials pertaining to all sorts of medications is important, so is fundraising initiatives that directly research conditions that focus solely on women’s health. Endometriosis has, historically, received less than $10 million in research funding per year compared to the $1 billion dedicated to diabetes, despite endometriosis being equally common as diabetes is among women. Rishe’s Endo Co was awarded a $20,000 grant to provide assistance to teens with endometriosis, but assuaging the substantial gap in women’s health research requires even more fundraising and awareness efforts, such as supporting Endo Co or EndoFound. By increasing funding for research, clinical trials can become more comprehensive, focusing on expanding the symptom profile of endometriosis and its potential treatments, thus bringing these issues to policymakers who can funnel greater resources towards endo research.
Pain might not discriminate, but its management almost certainly does.
As Rishe put it, “It looks like we are doing well but if you only knew what it took to have me standing in your face with a smile on you’d think differently.”
Endo’s supposedly indivisible tendrils pull on the people near you. It’s not an inconvenience, it’s, oftentimes, a life-changing interruption. Most of all, on behalf of the 170 million victims of endo and the millions left untreated or affected, it deserves its proper recognition to illuminate a bloody trail of misdiagnosis and underwhelming research that so viscerally upends lives.
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