Unmasking India’s Endometriosis Crisis

Despite affecting an estimated 40 million women across India, endometriosis remains largely misunderstood, underdiagnosed, and dismissed. Many women endure a diagnostic journey that spans years. In fact, women are told it’s “just period pain,” advised to “get married,” or prescribed pills without proper investigation.

Bengaluru-based journalist Sneha Khedkar’s (29) symptoms began at age 12. “I had horrible period pains, but it was not diagnosed as endometriosis till I was 26 years old,” she says. In those 14 years, Sneha visited multiple doctors. Most of them would just say, “Some girls have periods worse than others, and you’re just one of the unlucky ones.”

Even in urban India, with access to specialists and advanced imaging, Sneha’s experience is not uncommon. New clinical research is beginning to shed light on the extent of diagnostic delays in India (see table). The study underscores the persistent gap between symptom recognition and clinical intervention — a delay often shaped by cultural stigma, misattribution of pain, and limited access to specialised care.

Dr. Rishma Dhillon Pai, Honorary Consultant Gynaeco-logist at Lilavati and Jaslok hospital says, “Young girls say: ‘My mother had period pain, my grandmother did too, it’s normal.’ So they keep taking painkillers and don’t even think of seeing a doctor.”

Invisible Pain

At its worst, endometriosis can affect multiple organs; including the bowel, bladder, diaphragm, and even lungs, yet it leaves no visible scars. “I told my husband, I feel like there’s a ball on my left side and someone needs to take it out,” recalls Rashee Kuchroo (36), a content creator from Gurgaon. Initially told she had a “simple cyst,” Rashee was referred for a minor surgery. But a chance conversation with Dr Abhishek Mangeshikar, one of India’s few dedicated endometriosis specialists, revealed a deeper issue. Rashee had painful bowel movements that made her nearly faint. For years, doctors had blamed it on IBS or lactose intolerance. Her endometriosis had moved to the bowel and colon area. “This disease is more complex than cancer, yet it doesn’t have its own subspecialty,” Dr. Mangeshikar explains. “A normal ultrasound or MRI doesn’t mean you don’t have endometriosis. Imaging often misses deep lesions, especially if the scan isn’t done with the proper protocols.”

Gender Bias

Women’s pain is often minimized. “The first time any doctor took my pain seriously was when my partner insisted on an MRI,” says Sneha. “I had been saying the same thing for years, but until a man validated it, no one listened.”

According to Dr Sunita Tandulwadkar, President of FOGSI 2025 and Director at Ruby Hall IVF & Endoscopy Center, Pune, “Over-loaded outpatient departments mean doctors may not have enough time to take a detailed pain history or schedule early follow-ups.”

This lack of structured care disproportionately affects those outside urban centers. “Add to this the limited availability of high-resolution imaging and laparoscopic facilities outside big cities,” says Dr Tandulwadkar. Perhaps the reason why the diagnostic journey can stretch between five and seven years.

Dismissal to Diagnosis

Recognizing the scale of this crisis, FOGSI (Federation of Obstetric and Gynaecological Societies of India) is taking steps toward reform. Under Dr Tandulwadkar’s leadership, the Endometriosis Task Force is piloting a colour-coded referral pathway and conducting ultrasound training camps for district sonologists. A concise treatment guideline booklet, soon to be released in multiple Indian languages, aims to simplify care at primary health levels.

“Our messaging to adolescents is simple: normal periods shouldn’t cripple your school day or work life,” Dr Tandulwadkar adds. Menstrual health modules in schools and community screening tools are helping flag symptoms earlier than before.

The National Health Mission has begun training family physicians using brief digital modules, and several medical colleges now offer simulation workshops. But the need for deeper reform persists. Dr Pai emphasizes, “There is zero education given to young girls in India about their reproductive and sexual health. Whether poor or rich, educated or uneducated, women across the spectrum have no information.”

Murky Insurance System

In India, most insurers do not cover endometriosis unless it relates directly to infertility or involves a hysterectomy. “The insurance systems in India are terrible, especially for women’s health,” says Dr Mangeshikar. “A surgery that takes 3–4 hours to treat deep disease is reimbursed lower than a 20-minute cyst removal.”

This leads to a worrying trend of incomplete or repeated surgeries. “Gynaecologists will often operate only on the cyst and leave the rest of the disease behind. That’s a big problem,” he says. In general practice, recurrence rates can be as high as 50–80%, while specialist centres report them in single digits.

FOGSI is now advocating for inclusion of advanced laparoscopic excision under Ayushman Bharat, India’s public health insurance scheme, to ease the financial burden.

Beyond scans and surgery, doctors say the foundation of better care lies in trust. Dr Tandulwadkar recommends dedicating a longer initial consultation to capture the full symptom story. Support systems matter too. Hospitals that offer peer-support groups report improved mental health and adherence to treatment.

The Way Forward

Endometriosis is not rare. It affects 1 in 10 women globally, and yet receives less than $1 per woman in research funding. In India, the challenge is further compounded by patriarchal attitudes, underfunded healthcare, and political indifference.

To dismiss endometriosis as “just bad periods” is not just ignorance; it’s institutional negligence. It’s the result of gender bias, inadequate training, and a healthcare system that has long failed to take women’s pain seriously. The road to reform begins with one act: Believe women. And then, build systems that do too.

“Pain is not usual,” Dr Pai reminds us. “Anybody who has persistent or recurrent pain must be investigated.” That message, if truly heard, could be the first step in ending years of needless suffering.