Years of pain, delayed diagnosis: Why endometriosis often goes unnoticed in India

Severe or persistent period pain should not be dismissed as a normal part of menstruation, doctors have warned, as it could be a symptom of endometriosis — a chronic condition that can affect fertility and significantly disrupt daily life.

Experts said growing research into the genetic and epigenetic factors linked to endometriosis could help improve early identification and lead to more personalised treatment in the future.

“Symptoms of period pain are often dismissed as ‘normal’ because many of us lack awareness of a condition called endometriosis,” said Dr Priti Arora Dhamija, senior consultant in Obstetrics and Gynaecology and fertility expert at Sitaram Bhartia Institute of Science and Research.

Endometriosis occurs when tissue similar to the lining of the uterus grows outside the uterus. It can cause severe menstrual pain, chronic pelvic pain and infertility, with the condition estimated to affect about one in 10 women and girls.

Dhamija said women in India can wait seven to 10 years before receiving a diagnosis, partly because of limited access to simple tools and early identification methods.

“Such delays can lead to worsening pain, missed school or work and a reduced quality of life,” she said.

According to Dhamija, research over the past decade has increasingly highlighted the role of epigenetics in the development of endometriosis. Epigenetic changes can influence how genes function without altering the underlying DNA sequence. These include changes involving DNA methylation, histones and chromatin structure.

She also pointed to gaps within India's fragmented healthcare system, saying the absence of effective referral pathways can result in women consulting multiple healthcare providers, including traditional and alternative practitioners. This can add to both the complexity and cost of seeking a diagnosis.

Dr Jyotsna Suri, head of the Department of Gynaecology and Obstetrics at Safdarjung Hospital in Delhi, said endometriosis cannot be attributed to genetics alone.

“Endometriosis is a complex disease involving the interaction of genetic, hormonal, immune and environmental factors,” she said.

Women with a close relative who has endometriosis may face a higher risk, Suri said, but genetic predisposition is only one part of the picture. Hormonal and inflammatory pathways, along with environmental factors, can influence whether the disease develops and how severely it affects an individual.

She added that epigenetic mechanisms may further influence the way genes are expressed.

Suri stressed that severe menstrual pain that interferes with daily activities should be medically assessed.

“Pain that disrupts daily life, pain during intercourse, persistent pelvic pain or difficulty conceiving warrants medical evaluation,” she said, adding that recognising symptoms early could reduce diagnostic delays and help protect reproductive health.

Dr Bindu Bajaj, consultant in the Department of Gynaecology and Obstetrics at Safdarjung Hospital, said awareness among adolescents and their families is particularly important because symptoms can begin at a young age and may become progressively worse.

Endometriosis should be considered when menstrual pain is severe, recurrent or worsening, particularly when conventional painkillers offer little relief or the pain interferes with school, work, sleep or social activities, she said.

The condition can also cause pain during bowel movements or urination around the time of menstruation. Fertility problems may emerge later.

Bajaj said there is no single test that can identify every case of endometriosis. Diagnosis generally involves a detailed menstrual and medical history, clinical examination and appropriate imaging.

A family history can raise suspicion, she said, but women without an affected relative can also develop the condition.

“Disabling period pain deserves medical attention and should not be normalised,” Bajaj said.

Doctors said continued research into genetic and epigenetic mechanisms could eventually help identify women at greater risk, allowing closer monitoring and more targeted treatment approaches.