Endometriosis: The missed disease affecting 42 million Indian women

Endometriosis—often called 'the missed disease'—affects around 247 million women worldwide, including 42 million in India, according to a 2022 study published in the American Journal of Reproductive Immunology. Despite its vast reach, the condition remains underdiagnosed and poorly understood, largely because its symptoms resemble those of several other common disorders.
This chronic condition occurs when tissue similar to the uterine lining grows outside the uterus—commonly on the ovaries, fallopian tubes, and pelvic lining. These misplaced tissues respond to hormonal changes during the menstrual cycle but have no outlet to exit the body. As a result, they cause inflammation, scarring, cysts, and adhesions—often leading to debilitating pain and fertility issues.
What are the symptoms of endometriosis?
While most women experience some discomfort during their menstrual cycle, endometriosis causes symptoms that are far more intense, long-lasting, and disruptive:
Pelvic pain, often before and during menstruation
Pain during sex or bowel movements
Heavy or irregular periods
Bloating, fatigue, nausea
Infertility or difficulty conceiving
'Endometriosis pain is more likely to be severe. It can sometimes start before a girl has her period, as well as last for several days. It can be unpredictable, meaning that some people with very mild tissue growth have excruciating pain and others that have a lot of endometriosis may not have many or any symptoms. The condition is even mistaken for other patterns such as pelvic inflammatory disease, ovarian cysts, or inflammatory bowel syndrome (IBS). All conditions can cause alternating symptoms like abdominal cramps, bloating, or changes to bowel habits. Sometimes, endometriosis is only diagnosed during infertility evaluations or surgical procedures for unrelated issues,' added Dr Yuthika Sharma Bajpai, Senior Consultant, Reproductive Medicine & Robotic Surgeon, Regency Health, Kanpur.
Why is diagnosis often delayed in India?
In India, endometriosis is often diagnosed late—sometimes after a decade of symptoms. This delay is fuelled by:
The normalisation of severe period pain
Limited awareness among general physicians and gynaecologists
Cultural stigma around menstruation and sexual health
Inconsistent access to diagnostic tools
'In India, delayed diagnosis is a widespread issue due to several factors: stigma around menstrual health, lack of awareness (even among healthcare providers), and normalisation of menstrual pain. Many patients consult multiple doctors over years before receiving a correct diagnosis, often through laparoscopy—a minor surgical procedure,' said Dr Tarjnee Tiwari, Resident Doctor, MD Community Medicine, Sion Hospital, Mumbai.
How does endometriosis affect mental health and fertility?
Endometriosis impacts fertility, with 30–50% of people experiencing infertility. The unrelenting pain, combined with emotional stress, social withdrawal, and fertility concerns, significantly affects mental well-being.
Dr T. Shubhashree, Senior Consultant, Obstetrics & Gynaecology, SRM Global Hospitals, Chennai said -"One in ten women of childbearing age may be affected, yet the problem remains underdiagnosed and undertreated. Sometimes, the pain is so bad that regular painkillers don't help. Women frequently endure in silence, exhibiting suboptimal performance in social and professional spheres, often unaware that the condition is amenable to treatment."
Adding to the discourse, Dr Bajpai said, 'For many women, the struggle to get pregnant adds an immense emotional weight. All of these challenges combined can result in anxiety, depression, and just a generally lower sense of well-being.'
'One's sense of self remains unsure, and intimacy remains compromised due to chronic discomfort and fertility concerns. A cognitive fog, typically labelled as 'endometriosis brain,' sometimes interferes with cognitive function as well,' informed Dr Mukesh Batra, Founder & Chairman Emeritus, Dr Batra's Healthcare.
The uncertainty and lack of timely diagnosis can also lead to emotional burnout, making support systems and mental healthcare a crucial part of treatment.
Is there a link between endometriosis and cancer?
Recent research indicates a slightly elevated risk of ovarian cancer.
'Specifically, clear cell and endometrioid ovarian cancers have been found more frequently in individuals with long-standing endometriosis. Despite this relative increase, the absolute lifetime risk remains low, rising from about 1.4% in the general population to approximately 1.9% in women with endometriosis,' explains Dr Tiwari.
This underlines the importance of regular monitoring and further research.
What does treatment for endometriosis look like?
Treatment is highly individualised and can include:
NSAIDs (nonsteroidal anti-inflammatory drugs) like ibuprofen for pain relief
Hormonal therapies to suppress lesion growth (only under the supervision of a specialist)
Laparoscopic surgery to remove endometrial tissue
IVF or other assisted fertility options for those trying to conceive
Some patients also explore homeopathy and integrative therapies. Dr Batra notes that remedies like Sepia, Lachesis, and Pulsatilla may help in restoring hormonal balance and alleviating emotional stress, though clinical outcomes vary.
Why awareness is the first step
Awareness empowers women to take control of their health and improves their quality of life. Increased public and clinical awareness can reduce diagnostic delays, improve treatment options, and open up conversations around menstrual and reproductive health. Education initiatives—especially among young girls, schoolteachers, and frontline doctors—are essential to dismantle myths and normalise early medical consultation.
According to research published last year in Nature Genetics, endometriosis affects 10% of women of reproductive age globally, but standards of care are unacceptably poor. Let's stop calling it a 'missed' disease—and start recognising it for what it is: a major public health issue in urgent need of awareness and action.
This report is for informational purposes only and is not a substitute for professional medical advice.

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