NEW DELHI: India may have more than 40 million women, accounting for nearly one-sixth of global cases, suffering from endometriosis, a major gynaecological condition affecting women of reproductive age. But due to a lack of data, there is no evidence-based national guideline for early diagnosis and proper treatment, especially for women living in rural areas. There is some good news now.
The Indian Council of Medical Research-National Institute for Research in Reproductive and Child Health (ICMR-NIRRCH), Mumbai, has developed a framework for an integrated, multidisciplinary care model - the Endometriosis Multidisciplinary Care Model (EndoCare India) - to improve the diagnosis, treatment, and overall management of endometriosis in Indian public tertiary hospitals.
The model is based on the findings of India’s first national study, which was conducted to identify the clinical, epidemiological, environmental, and lifestyle factors associated with different endometriosis subtypes and to investigate the genetic risks associated with endometriosis in the Indian population.
The Endometriosis Clinical and Genetic Research in India (ECGRI) study, whose findings were shared exclusively with this newspaper, showed that most women suffering from endometriosis - a chronic disease that causes tissue similar to the uterine lining to grow outside the uterus - underwent a delay in treatment of nearly nine years.
About 37% experienced symptoms during adolescence, and 77% before 30 years of age.
The five-year-long study, which included 1,775 women suffering from the condition and 1,775 women without the condition, was conducted at 18 sites in nine Indian states, including Kerala, Maharashtra, Uttar Pradesh, and Karnataka.
It found that most women were from urban areas (66%), married (88%), and unemployed (60%). Pain (73%) and infertility (46%) were the most frequently reported symptoms. Also, underweight women were found to be at a higher risk.
The study also found strong links between endometriosis and heavy bleeding, irregular cycles, short cycle lengths, and hormonal use.
Women who have endometriosis also suffer from over 50% of gynaecological disorders, autoimmune conditions (18.6%), musculoskeletal disorders (13.5%) and psychiatric conditions (11.6%), the study found.
Speaking with this paper, Dr Rahul Gajbhiye, Scientist E (Deputy Director), ICMR-NIRRCH, Mumbai, who led the national study, said, “The integrated model is designed to address the complex medical, psychological, and social needs of women with endometriosis across different life stages, ensuring coordinated and holistic care within the public healthcare system.”
He said based on global evidence and findings from the ECGRI study, they developed the framework for the EndoCare India, which adopts a life-course approach, bringing together specialists from gynecology, anesthesiology, surgery, radiology, pathology, mental health, physiotherapy, nutrition, and social work to deliver comprehensive, continuous, and patient-centered care.
Endometriosis affects all women; however, urban married women are diagnosed more often than those living in rural India. The reason is that women in cities have better access to healthcare, more awareness, and are more likely to seek medical attention.
Comparing the treatment available globally, Dr Gajbhiye, who has been leading endometriosis research in India for the past two decades, said that care is delivered through multidisciplinary care models in countries like the US, Canada, the UK, Sweden, Denmark, France, and Australia.
These countries also have dedicated pelvic pain clinics that help with early recognition of symptoms, accurate diagnosis, and prompt treatment.
He said that in most cases in India, the disease goes undiagnosed mainly because there is a shortage of endometriosis specialists, inadequate healthcare infrastructure, particularly in rural areas, low awareness of symptoms, social stigma surrounding menstruation-related disorders, and limited knowledge among general practitioners.
“As a result, many women do not receive a timely diagnosis or treatment,” said Dr Gajbhiye, who presented the study findings and the model at the 16th World Congress on Endometriosis in May in Sydney, Australia.
He said many women visit doctors only when the pain becomes unbearable, but often continue to suffer silently for years without a proper diagnosis.
“Menstrual health remains taboo in many communities, and there is social stigma associated with undergoing surgery before marriage,” he told this paper.
He said that the need of the hour is to develop educational programmes in schools, like in New Zealand, tailored to Indian settings. However, awareness must also be created in workplaces, at homes, and in society at large so that there is no social stigma attached to menstruation and menstrual disorders.
Policymakers also need to be sensitised to the need to establish multidisciplinary endometriosis care centres in public hospitals.
According to the World Health Organisation (WHO) fact sheet 2023, about 10% of women of reproductive age suffer from endometriosis in any population.