Science Friday
Science Friday

Endometriosis Is Common. Why Is Getting Diagnosed So Hard?

A scientist diagnosed with endometriosis is working to answer fundamental questions about the disease and pave the way for better treatments.

Topics Discussed

Episode Summary

Executive Summary: The episode examines endometriosis, a common yet frequently underdiagnosed disease in which endometrium-like tissue grows outside the uterus, causing severe pain and other symptoms. Dr. Linda Griffith explains why diagnosis is delayed, reviews leading theories about disease origin, and describes how her lab uses tissue engineering and microfluidic models to study lesions, identify pathways, and develop more personalized treatments and diagnostics.

Main Topics: What endometriosis is and how it presents (Priority: 5/5): Endometriosis involves endometrium-like tissue growing outside the uterus, often on the bowel and other abdominal/pelvic tissues. Symptoms include severe menstrual pain, heavy bleeding, and gastrointestinal issues that can begin before menstruation starts. Why diagnosis is delayed for years (Priority: 5/5): Griffith argues delayed diagnosis stems from menstrual stigma, dismissal of pain, lack of definitive biomarkers, and reliance on surgery after other explanations fail. Personal and clinical motivation for Griffith’s research (Priority: 4/5): Griffith recounts her own late diagnosis and her niece’s dismissal by clinicians, which pushed her from regenerative medicine into endometriosis research. Biology of pain and lesion behavior (Priority: 5/5): Pain likely arises from inflammatory activity, nerve ingrowth, and immune-nerve interactions within lesions. Lesions can vary widely, invade deep tissues, and appear in unexpected places such as the diaphragm and sciatic nerve region. Competing theories of disease origin (Priority: 4/5): Two main hypotheses are discussed: retrograde menstruation (Sampson’s hypothesis) and a developmental origin involving misplaced cells, genetic predisposition, and gene-environment interactions. Engineering-based lab models and personalized medicine (Priority: 5/5): Griffith uses organoids, microfluidic chips, and engineered blood vessel systems to recreate patient-specific lesions in vitro, enabling study of disease mechanisms and testing of targeted therapies. Current and emerging treatment directions (Priority: 4/5): Current therapy typically begins with hormonal suppression and may escalate to GnRH antagonists or surgery. The future lies in pathway-specific drugs and improved diagnostics, potentially including menstrual-blood-based tests.

Key Arguments: Endometriosis is common and can be severely disabling, yet it is still often diagnosed only after years or decades because there is no simple biomarker-based diagnostic pathway. Menstrual pain is frequently normalized or dismissed, which contributes to clinicians underestimating symptoms and patients being told they are exaggerating or fabricating. Surgery remains the definitive diagnosis, but that is a major step and many cases are missed on standard imaging because lesions are often tiny or subtle. The disease likely reflects multiple biological subtypes rather than one single mechanism, so treatments may need to be personalized. Engineering tools can recreate lesion environments in the lab, allowing researchers to study immune, nerve, and tissue interactions that are hard to observe directly in patients. Targeting fundamental inflammatory pathways may yield better therapies than existing broad hormone-suppressing approaches, which can have serious side effects. New diagnostics are a major frontier, and noninvasive approaches such as tests based on menstrual blood may eventually improve detection.

Data Points: Lifetime risk for people with a uterus: 1 in 10 - Mentioned when introducing how common endometriosis is Years to diagnosis: 4 years - One caller described spending four years trying to get diagnosed Years to diagnosis: 10 years - One caller described a 10-year struggle before finding someone knowledgeable Years suffering before diagnosis: 20 years almost - One caller said she was diagnosed after suffering for nearly 20 years Age at diagnosis: 28 - Griffith said she herself was not diagnosed until age 28 Age at onset in niece: 12 - Her niece began symptoms when she started her period at 12 Niece’s endometriosis stage: stage three - Her niece was ultimately diagnosed by a surgeon in Atlanta Time of identified publication: 2014 - Griffith referred to a high-profile publication in which her group identified an inflammation pathway Typical surgical imaging yield: 70% or so - She said roughly 70% of patients have tiny lesions not visible on standard imaging Experience with surgeries: 100-150 surgeries - Griffith has watched many endometriosis surgeries to observe lesion diversity

Pivotal Quotes: "If you have a uterus, you have a 1 in 10 chance of getting it" — Flora Lichtman: Introduction framing how common endometriosis is "I feel like it took a long time for my OB to take me seriously." — Caller: Example of patient experience illustrating diagnostic dismissal "So, endometriosis is a disease where bits of tissue that resemble the endometrium are growing throughout typically the abdominal cavity on the bowel and so on." — Dr. Linda Griffith: Definition of the disease and where lesions commonly occur

Implications: The segment suggests endometriosis care may shift toward earlier detection, better imaging/biomarkers, and more targeted therapies, but only if stigma and diagnostic gaps are addressed. Patients may benefit from more personalized, mechanism-based treatment in the near future.

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