You might have endometriosis, it’s just that you haven’t been diagnosed yet because scientists haven’t developed a non-invasive diagnostic test for it. But you’ll be pleased to know they spent time and money measuring how attractive the patients were to men. Yes, that’s right. Three hundred women with severe endometriosis underwent this assessment without their consent. They weren’t told their breast size would be measured. They weren’t informed that panels of strangers would judge their physical appearance on a five-point scale. This endometriosis research concluded that women with the most severe form of endometriosis were “more attractive” with “larger breasts” and “leaner silhouettes.” It took seven years and international outcry for the journal Fertility and Sterility to retract the paper.

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When medical facts are built on male bodies

This is not just about endometriosis research; the pattern follows everywhere. The FDA’s 1977 guidance barred women of “childbearing potential” from early-phase drug trials. Even women using contraception, women who were single, and women whose partners had vasectomies were excluded. The justification was protecting potential foetuses. This has resulted in an entire generation of medical knowledge built almost exclusively on male biology.

As recently as 2019, women accounted for only 40 per cent of participants in clinical trials for the three diseases that most affect them: cancer, cardiovascular disease, and psychiatric disorders. Women experiencing heart attacks present with different symptoms like nausea, breathlessness, and back pain, rather than the “classic” crushing chest pain around which diagnostic criteria were developed. Medical professionals trained to recognise male symptoms dismiss or misinterpret women’s experiences as anxiety or indigestion.

The price of excluding women

The exclusion doesn’t stop with human trials. Until recently, male mice outnumbered female mice five to one in scientific studies. Researchers claimed female mice’s hormonal fluctuations would “confound” results. When scientists finally examined this claim, they found it was complete rubbish. The claim was not by evidence but just by prejudice. 

The price of this exclusion? Women have nearly double the risk of adverse drug reactions compared to men. Some estimates suggest women experience 50-75 per cent more adverse reactions than men. It took 21 years for the recommended dosage of Zolpidem (Ambien) to be halved for women due to their decreased metabolic clearance. Twenty-one years during which women were being prescribed potentially dangerous doses.

Women and men have different levels of drug-metabolising enzymes, different rates of drug absorption, different protein binding, and different renal elimination. Research demonstrates that simply adjusting doses for weight won’t eliminate adverse reactions because the physiological differences run far deeper.

Double the risk, half the research

If you want to understand how profoundly women’s health is undervalued, look at the numbers for endometriosis.

The disease affects 190 million women worldwide and 42 million women in India alone, roughly one in 10 women of reproductive age. Yet, the funding it receives is shockingly little.

In 2022, the National Institutes of Health (NIH), the main government agency  in the US responsible for health research funding, allocated just $16 million to endometriosis research. This represents 0.038 per cent of the NIH’s total health budget which works out to $2 per patient per year for the 6.5 million American women with endometriosis. This doesn’t seem so bad but only until we look at the funding for other diseases. Crohn’s disease affects 690,000 Americans (compared to 6.5 million women with endometriosis, nearly 10 times fewer people). It received $90 million in funding which is $130 per patient. This shows Crohn’s disease gets 65 times more money per patient than endometriosis.

A landmark 2021 analysis found that endometriosis receives less than one-fifth of the funding it deserves based on how many people it affects and how severely it impacts their lives. Even liver cancer, the only male-predominant condition that was also underfunded, had a ratio of 0.6284. More than three times better than endometriosis.

India’s endometriosis research landscape reveals an even starker picture. Despite affecting 42 million women, the country has:

• No nationally representative data on prevalence or socioeconomic impact
• No patient registries to track the disease
• Minimal government funding for research

The Indian Council of Medical Research (ICMR) focuses mainly on diseases affecting both genders, while women-specific conditions like endometriosis receive minimal attention. The landmark ECGRI (Endometriosis Clinical and Genetic Research in India) study, started in 2022, is the first comprehensive national study on endometriosis in India. Imagine, a disease identified 160 years ago, affecting 42 million Indian women, didn’t receive its first comprehensive national study until three years ago.

And yet, while all of this remains true, researchers found the time and funding to measure breast size and rate women’s attractiveness.

Gender gap in medical research is real

Only seven per cent of healthcare research focuses on conditions exclusively affecting women. Twice as much funding goes to diseases disproportionately affecting men compared to those mainly impacting women, even when the latter kill more women.

Dr Bernadine Healy, the first female director of the NIH, coined a term for this in 1991: “Yentl syndrome.” For a woman’s illness to be taken seriously, she must prove herself to be as unwell as a male counterpart. Women must perform their suffering to meet a standard designed around male bodies, and even then, they wait longer for diagnosis and treatment.

The endometriosis research about attractiveness wasn’t just offensive; it was a perfect distillation of how women’s health research operates. While millions of women live with debilitating pain, experience diagnostic delays of nearly a decade, face misdiagnosis and dismissal, and navigate a medical system that neither understands nor prioritises their conditions, researchers were asking: “But are they pretty?”

The question isn’t whether we can afford to close the gender gap in medical research. The question is, how much more will we tolerate a system that treats half the population as an optional variable in the study of human health?

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Related: The Price Of Being A Woman: Women Pay 20% More To Simply Exist In India

FAQs

Q1. What is endometriosis and what does it feel like?

Endometriosis is a condition where tissue similar to the lining of the uterus grows outside it. This tissue bleeds during your period but has nowhere to go, causing inflammation, scarring, and excruciating pain.

Q2. What are the symptoms of endometriosis?

Common symptoms include: severe pelvic pain (especially during periods), pain during or after sex, heavy or irregular periods, pain when using the toilet, chronic fatigue, bloating (often called endo belly), and difficulty getting pregnant.

Q3. How is endometriosis diagnosed?

Currently, doctors can definitively diagnose endometriosis only through laparoscopic surgery, a procedure in which they insert a camera through small incisions in the abdomen to visually identify endometrial tissue. Ultrasounds and MRIs can detect some cases, particularly endometriomas (ovarian cysts), but they often miss the disease.

Q4. Can endometriosis be cured?

No. There is currently no cure for endometriosis. Treatment options include: pain medication (NSAIDs like ibuprofen), hormonal treatments (birth control pills, IUDs, or injections) that suppress menstruation and slow disease progression, and surgery to remove endometrial tissue.

Q5. Does endometriosis only affect periods?

No. Endometriosis can cause year-round chronic pain, not just during menstruation. It can cause painful bowel movements, diarrhoea, or constipation. It can also cause painful urination or frequent infections, and it can even affect your diaphragm or lungs in rare cases.

Related: Endometriosis: A Disorder That Affects Over 40 Million Women In India But Remains Underdiagnosed