A woman in a green dress with a distressed expression on her face is in a medical examination room speaking to a calm and unbothered male doctor. Generated by Sylvana Keeley Domokos using Gemini AI.
Sylvana Domokos is a Neuroscience major with a minor in public health and she is a 2025-26 health care ethics intern at the Markkula Center for Applied Ethics at Santa Clara University. Views are her own.
“I please ask you to understand the pain and anguish I live with every day is unbearable. My physical pain is beyond unbearable and I’m tired, so so so so tired of living in a body that isn’t my body.”
Above are the last words of Trinity Lillian Graves, who took her own life at the age of 18 after four years of being dismissed by twelve different doctors. Trinity’s pain was viewed as “just painful periods,” and her suffering viewed solely as a mental health issue. She was referred to a psychiatrist, not a surgeon.
One in ten women suffer from endometriosis, yet there is no knowledge of its cause, the average diagnosis time is 7-10 years, and the most widely known research on endometriosis is a study that rates the attractiveness of the women who have it. Treatment options remain minimal, and there is no cure.
Dr. Rebecca Szabo noted that the time taken to retract the study is the average time it takes to be diagnosed with endometriosis. In contrast, there are 2 FDA-approved treatments for male pattern baldness. The lack of research and health care for people suffering from endometriosis invites us to scrutinize the factors that drive this critical disparity.
More Than a Reproductive Disease
Endometriosis is a medical condition where tissue similar to the uterine lining grows outside of the uterus, adhering to internal organs and disrupting natural anatomy. Endometriosis has been compared to cancer, as its cells rapidly divide and may grow their own blood supply and nerves. Although endometriosis is characterized as a reproductive disease, it has been found in the wrists, brain, eyes, and in men. Surgery is currently the only way to confirm a diagnosis of endometriosis.
This invisibility contributes to a diagnostic catastrophe: despite affecting an estimated 190 million people worldwide, the average diagnosis takes seven to12 years from symptom onset. During this delay, the disease progresses unchecked, worsening physical damage and increased risk of depression and social isolation.
Invisible but Deadly
Beginning at age 13, Elina Kharnak suffered from painful periods. After having two children and a miscarriage, she endured “constant abdominal pain and severe back pain radiating down her left leg.” She spent years in physical therapy and resorted to researching her own symptoms when doctors provided no answers. One OB/GYN said she could not possibly have endometriosis because her pain was in her back, not her pelvic area. Kharnak recalls that, “He actually, specifically told me to stop practicing ‘Google medicine.’”
A 2017 ultrasound revealed hydronephrosis, a condition where her kidney had swelled to four times its normal size due to a fluid blockage. Dr. Tamer Seckin spent 10 hours in surgery and discovered that the endometriosis had infiltrated and killed Elina’s kidney. The surgery resulted in total hysterectomy: Elina lost her fallopian tubes, ovaries, cervix, and left kidney. Had Elina’s providers believed her, she might still have both kidneys; a permanent consequence of years of dismissal.
[Image: drawing of a red kidney being strangled by barbed wire against a solid background. Generated by Sylvana Keeley Domokos using Gemini AI.]
Who Deserves a Diagnosis?
When Disbelief Becomes a Diagnosis Denial
Medical epistemology is the study of how medical knowledge is created and validated, and applying this philosophy to endometriosis care reveals a disconcerting pattern. A doctor’s perceived credibility of their patient is reflected in whether the patient gets a diagnosis. In the cases of Trinity Graves and Elina Kharnak, their status as women caused their very real symptoms to be dismissed as, “just a bad period,” resulting in the loss of Kharnak’s kidney, and the tragic loss of Graves’ life.
When Trinity Graves reported debilitating pain, her providers didn’t order diagnostic surgery; she was prescribed psychiatric care and medications. Instead of an isolated case of clinical misjudgment, Trinity Graves faced epistemic violence: a feminist bioethics concept used to describe how patriarchal medical structures deny women’s knowledge and lived experiences. Graves' racialized status as a mixed-race woman likely compounded her dismissal. A 2019 meta-analysis found Black patients were 40% less likely to receive pain medication than white patients, and Black women experience 69% higher heart attack mortality than white women.
This pattern is echoed across millions of cases: patients accurately describe their symptoms, yet providers attribute pain to anxiety, emotional instability, or "normal" menstruation. The lens of feminist bioethics allows us to see that the seven to 10 year diagnostic delay is a credibility issue rather than a scientific mystery.
The Economic Injustice of Endometriosis
The bioethics framework of justice examines how personal biases translate to systemic inequities by affecting the distribution of medical resources. This profound inequity manifests in Endometriosis research funding: while the disease causes an estimated economic loss of $78 billion to $119 billion annually in the United States, it receives approximately $29 million a year of NIH funding. In contrast, erectile dysfunction affects a comparable percentage of men, and it receives six times more research funding.
Gender double standards compound this injustice. Male birth control trials have been halted due to side effects, including mood changes, weight gain, and acne, which are the same effects women routinely endure with Lupron injections and other hormonal treatments for endometriosis. When men report these symptoms, they constitute unacceptable barriers to drug approval, yet when women report identical symptoms, they are deemed acceptable trade-offs.
The Impact of Inequity: When Research Reinforces Harm
The diagnostic delay in endometriosis reveals how the perceived deficit in credibility disproportionately harms women, because medicine frames female reproductive symptoms as subjective, emotional, and unreliable. If period pain is framed as merely something women complain about rather than a real symptom, it becomes psychologized, and is no longer classified as a tangible medical issue requiring investigation. This epistemic bias manifests as a determination of whose suffering medicine considers worthy of belief.
Dr. Kate Young remarked in an interview with The Guardian, “That paper is a really good example of what happens when we do research about women but not for them.” Endometriosis affects an estimated 10% of all women, creating a significant economic burden. A 2019 Australian study found that patients faced annual costs between $17,000 and $20,000, primarily from missed work due to pain. U.S. studies show average first-year treatment costs of $16,500 per patient.
Intervening in Systemic Inequity
Adequately addressing inequality caused by endometriosis requires systemic intervention across multiple structures:
Research Funding Reform
NIH funding must reflect the disease burden and be proportional to its economic impact. Increasing research funding would rapidly accelerate root-cause treatment development, and help assuage the vast economic loss caused by this disease. Research must be patient-centered, focused on effective symptom management and treatment instead of reinforcing existing gender biases.
Provider Training
Residency programs must begin to incorporate surgical training specific to endometriosis, specifically distinguishing between ablation and excision. Current medical standards allow gynecologists to operate beyond their training. Excision surgery is the gold standard for endometriosis treatment, and while there are currently no mandatory requirements for surgeons performing endometriosis excision surgery, establishing mandatory credentials would prevent predictable harms caused by doctors operating outside of their scope of practice.
Standardization of Diagnostic Protocols
While there were no ICD billing codes for endometriosis for over 40 years, health care institutions must cooperate with insurance companies in order to mandate specialist referral after six months of reported chronic pelvic pain, in order to work towards an objective diagnostic process. Billing code reform must reflect the presence of endometriosis across organ systems, acting to facilitate diagnosis and insurance coverage of treatment regardless of the locations of the lesions.
The stories of Trinity Graves and Elina Kharnak demonstrate how invisibility in medicine produces visible injustice. The diagnostic delay is not inevitable: it results from epistemic inequality, inadequate training, and research about women instead of for them. When medicine frames female pain as a subjective complaint rather than a symptom, it creates an affirmative barrier to care: no belief, no surgery, no diagnosis, no treatment. Solutions exist–specialized training standards, equitable funding, diagnostic protocols, and bias education–and have the potential to transform outcomes. Recognizing the current state of endometriosis care as a credibility crisis rather than a medical mystery is the first step toward accountability.