From the Vault - Endometriosis: Menstrual Backwash (Ep 88)

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• Endometriosis is technically defined as the presence of endometrial glands and stroma outside the uterus, which causes inflammation, scarring, and often severe pain and infertility because the tissue responds to hormones but cannot exit the body.  Copied to clipboard!
• The prevailing theory for the origin of endometriosis is retrograde menstruation, or "menstrual backwash," where endometrial tissue flows backward through the fallopian tubes into the abdominal cavity, though this does not explain why only some people develop the disease.  Copied to clipboard!
• The history and perception of endometriosis strongly encapsulate issues of misogyny and gender inequality in medicine, as the disease's association with 'women of childbearing age' has historically led to its dismissal as normal or psychological rather than a serious, physical condition.  Copied to clipboard!
• Endometriosis is an ancient disease, not a modern epidemic, despite its clinical definition only being established relatively recently, and historical descriptions of painful menstruation date back to ancient Egypt and Greece.  Copied to clipboard!
• The systemic mistreatment and undertreatment of women in medicine is rooted in a 'knowledge gap' (understudied women's health) and a 'trust gap' (dismissal of women's symptoms), legacies stemming from historical biases like the concept of 'hysteria'.  Copied to clipboard!
• The classification of endometriosis as a 'benign condition' in medical literature likely contributes to its underfunding and the dismissal of the severe pain and suffering it causes, despite evidence that it behaves invasively and increases the risk of ovarian cancer.  Copied to clipboard!

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Susie Soloviev’s Endometriosis Journey

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(00:02:10)

• Key Takeaway: Susie Soloviev’s experience highlights the decade-long struggle with symptom dismissal, including attributing severe pain to psychological factors stemming from purity culture, before receiving a diagnosis.
• Summary: Susie ignored early symptoms like bad cramps and anemia, later assuming painful sex was psychological due to her upbringing. After childbirth, her cramps worsened, leading to bladder spasms and eventually blood in her stool, prompting medical investigation. Her eventual diagnosis of Stage IV endometriosis followed a traumatic period where doctors suspected cancer.

Endometriosis Definition and Biology

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(00:08:58)

• Key Takeaway: Endometriosis involves endometrial glands and stroma growing outside the uterus, causing inflammation and potential damage because this tissue still cycles hormonally but cannot exit the body.
• Summary: The technical definition of endometriosis is the presence of endometrial-like tissue outside the uterus, such as on the peritoneum, bladder, or ovaries. This misplaced tissue responds to estrogen and progesterone, proliferating and degenerating monthly, leading to inflammation, scarring, and symptoms like pain and infertility. The exact mechanism for how this tissue implants outside the uterus remains unknown, despite theories like retrograde menstruation.

Theories of Endometriosis Origin

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(00:32:18)

• Key Takeaway: The ‘menstrual backwash’ (retrograde menstruation) theory suggests endometrial tissue travels backward through the fallopian tubes, but this fails to explain cases in people without a uterus or implants outside the abdominal cavity.
• Summary: The ‘menstrual backwash’ theory posits that menstrual products containing endometrial tissue enter the peritoneal cavity via open fallopian tubes, where they implant. However, since this occurs in many people without endometriosis, it is insufficient alone. Other theories involve bone marrow stem cells differentiating into endometrial tissue or coelomic metaplasia, where existing abdominal cells mutate into endometrial cells.

Genetic and Inflammatory Factors

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(00:41:35)

• Key Takeaway: Endometriosis development is thought to result from a combination of genetic predisposition (involving at least 10-15 gene loci, often related to hormonal regulation) and unknown environmental insults, leading to significant local inflammation.
• Summary: Genome-wide association studies show a strong genetic component to endometriosis, with associated gene regions often relating to hormonal regulation, suggesting it is an estrogen-dependent disease. Local inflammation and immune dysregulation are key drivers of pathogenicity, causing fibrosis and adhesions, though it is unclear if inflammation causes the lesions or vice versa. This comorbidity with autoimmune disorders suggests a similar genetic/environmental trigger mechanism.

Lesion Types and Pain Correlation

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(00:46:17)

• Key Takeaway: Endometriosis is classified into superficial peritoneal lesions, ovarian endometriomas (chocolate cysts), and deeply infiltrating endometriosis (DIE), but lesion severity does not reliably correlate with pain intensity.
• Summary: Superficial lesions lie on organ surfaces without deep invasion, while endometriomas are cysts on the ovary filled with old blood, giving them a ‘chocolate’ appearance. Deeply infiltrating endometriosis (DIE) invades structures like the bladder or colon, potentially causing blockages. Crucially, the physical extent of the disease seen during surgery does not predict the severity of pain experienced by the patient.

Neurobiology of Endometriosis Pain

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(00:52:02)

• Key Takeaway: Endometriosis pain is amplified because implants often have higher nerve fiber density and sensitization, and chronic pain physically alters brain architecture, increasing pain signal transmission.
• Summary: Endometriotic implants are more densely innervated and respond to stimuli at a lower threshold, increasing pain signals sent to the brain. Chronic pain causes structural changes in the central nervous system, priming the body to experience more pain from the same stimuli, which is a physiological change, not a psychological one. This chronic pain experience is also highly comorbid with depression and anxiety, which further disrupt brain function and exacerbate the pain experience.

Treatment Limitations and Infertility

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(00:58:26)

• Key Takeaway: Current treatments for endometriosis, including hormonal birth control, GnRH agonists, and surgery, are often ineffective for a significant portion of patients and do not offer a definitive cure.
• Summary: Hormonal birth control helps some patients by reducing or stopping periods, but fails for one-quarter to one-third of sufferers. GnRH agonists induce early menopause to block hormones but carry side effects like bone density loss. Surgery, once considered the diagnostic gold standard, can improve pain but may also increase inflammation and adhesions; hysterectomy is not curative.

Historical Context and Medical Bias

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(01:06:32)

• Key Takeaway: The narrative surrounding endometriosis perfectly encapsulates historical medical misogyny, where gendered biases lead to the dismissal of women’s pain and delay necessary healthcare.
• Summary: The research focus shifted from a purely biological timeline to examining how gender inequality impacts diagnosis and treatment for endometriosis. Labeling the condition as a ‘women’s disease’ allows society to dismiss debilitating symptoms as normal or due to poor pain tolerance. This bias is compounded for trans or non-binary individuals whose experiences fall outside the typical patient description.

Endo as Ancient Disease

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(01:15:24)

• Key Takeaway: Endometriosis is not a modern epidemic; historical texts from ancient Egypt (1855 BCE) and Greece describe symptoms consistent with the disease.
• Summary: Calling endometriosis a modern disease is misleading because humans have likely experienced it for millennia, despite definitive diagnosis only becoming possible in the last century. Ancient Greek texts linked menstrual dysfunction, pain, and infertility to untreated conditions, sometimes suggesting pregnancy as a cure, a recommendation still given today. Descriptions of painful menstruation dating back to 1855 BCE in ancient Egypt support its ancient origins.

Hysteria and Historical Misdiagnosis

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(01:18:56)

• Key Takeaway: The nickname ‘career woman’s disease’ in the 1960s-1980s mirrors ancient Greek texts linking gynecological disorders to unmarried or childless women, all falling under the umbrella of ‘hysteria.’
• Summary: The term ‘hysteria,’ derived from the Greek word for uterus, served as a catch-all diagnosis for many female complaints, including what is now understood as endometriosis. This historical labeling implies that women who rejected social roles, like delaying childbearing, were responsible for their own suffering. Many women diagnosed with hysteria likely had endometriosis, illustrating a long history of misattributing physical symptoms to psychological or social failings.

Menstruation Taboo and Medical Silence

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(01:20:07)

• Key Takeaway: The historical and ongoing taboo surrounding menstruation has created a damaging silence, preventing open discussion of symptoms and hindering public health understanding.
• Summary: The stigma surrounding menstruation, evidenced by biblical restrictions and the fact that the word ‘period’ was not said on US television until 1985, leads to silence where individuals do not know if their symptoms are normal. This silence creates public health inequities, such as menstrual products being taxed or charged for in prisons. The lack of open discussion likely contributed to the scarcity of endometriosis mentions in medical texts until the 1800s, as male physicians avoided asking about periods.

Formalizing Endometriosis Diagnosis

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(01:22:54)

• Key Takeaway: Karl von Rokotansky first described endometrial lesions in the 1860s, but John Sampson formally named the disease ’endometriosis’ in 1921, proposing the prevailing menstrual backwash hypothesis.
• Summary: The rise of autopsies in the 19th century allowed physicians like Rokotansky to link pathological changes to symptoms, leading to the initial description of gland-like structures in uterine tumors. John Sampson’s 1921 work provided the systematic study and the name ’endometriosis,’ shifting it from a curiosity to a clinical entity. Early diagnoses often resulted in harmful suggestions, such as complete removal of the uterus as the only treatment.

Diagnostic Delay and Systemic Bias

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(01:25:24)

• Key Takeaway: Despite advancements, diagnosis for endometriosis still faces a significant delay (6 to 15 years), disproportionately affecting people of color and lower economic classes, due to systemic issues in medicine.
• Summary: The long diagnostic delay for endometriosis is linked to the pervasive mistreatment and undertreatment of women in the medical system, structured around a ‘knowledge gap’ and a ’trust gap.’ These gaps mean women’s symptoms are often not taken seriously because medicine lacks sufficient knowledge about female bodies, and knowledge acquisition is hampered because symptoms are dismissed. This systemic bias means women are often seen as stressed rather than sick when presenting with pain.

Knowledge Gap in Medical Research

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(01:28:49)

• Key Takeaway: Historical exclusion of women from biomedical research, justified by cost or hormonal complexity, has resulted in women being 50-75% more likely to have adverse drug reactions.
• Summary: The knowledge gap stems from centuries of viewing women’s bodies as unworthy of study, leading to a baseline of ’normal’ being defined by the white adult male. Policies in the 1970s sometimes paternalistically excluded women of childbearing potential from drug trials, further limiting data on drug safety and efficacy for them. This exclusion means that symptoms like heart attack presentation in women (e.g., back pain vs. chest clutching) are often missed, leading to fatal consequences.

Trust Gap and Hysteria’s Legacy

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(01:45:31)

• Key Takeaway: Freud’s transformation of hysteria into a purely psychological disorder cemented the idea that women’s physical symptoms are ‘all in your head,’ a bias that persists today.
• Summary: Hysteria evolved from an organic process to demonic possession, and finally to a psychological disorder under Freud, which turned real physical experiences like pain and infertility into mental manifestations. This legacy means women are often treated as unreliable narrators of their own bodies, where symptoms are assumed to be psychogenic unless proven otherwise. Scientific studies confirm implicit gender bias, showing medical trainees are less likely to diagnose heart disease in women when a stressful life event is mentioned.

Endometriosis Statistics and Benign Classification

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(02:04:18)

• Key Takeaway: Endometriosis affects an estimated 10% of women of childbearing age, yet its classification as a ‘benign condition’ minimizes its severity and contributes to its low research funding compared to conditions like breast cancer.
• Summary: Statistics suggest that 10% of women of childbearing age have endometriosis, and up to 60% of chronic pelvic pain cases are likely caused by it, yet it receives only about 5% of the research funds allocated to conditions like diabetes. The term ‘benign’ is medically used because it is not malignant (cancerous), but this language ignores the severe pain, infertility, and increased risk of ovarian cancer associated with the disease. Researchers like Dr. Lisa Griffiths emphasize that the language used to describe the condition significantly influences how it is perceived and treated.