‘Hell-on-earth excruciating pain,” is how Ruhi Singh* describes her experience of endometriosis. Yet it took nearly 20 doctors more than 10 years for her to get a diagnosis. “I got an ultrasound every month where they told me it was all clear and I should ‘do yoga’ or ‘get pregnant’,” says Singh. “I have a bone to pick with all of those doctors.”
Her experience is not unusual. Globally, it takes seven years on average to get a diagnosis, even though endometriosis is as common as diabetes, affecting one in 10 women.
In India, where the condition affects 42 million women, poor understanding among medical professionals, combined with cultural constraints and myths, mean the wait can be even longer. Growing up with two doctors for parents did nothing to speed up Singh’s diagnosis.
Rahul Gajbhiye, a researcher at the National Institute for Research in Reproductive and Child Health, says: “There is still a stigma associated with menstruation-related disorders in India and we need to address this issue through community education and creating awareness on endometriosis.
“The major challenges faced by patients are delayed diagnosis, misdiagnosis [and] non-availability of diagnostic and treatment facilities in rural areas,” he adds.
Gajbhiye, who is an ambassador for the World Endometriosis Society, is leading a nationwide study aimed at broadening India’s understanding of the disease, in which tissue similar to that which normally lines the uterus grows elsewhere in the body.
In 2020 the first pamphlet to raise awareness of the condition was issued, which is being translated into the most widely spoken languages and distributed to hospitals and clinics in 19 cities across India.
“Endometriosis involves multiple organs and is now considered a chronic systemic disease. Therefore, there is an urgent need to establish multi-disciplinary endometriosis care centres in both public and private healthcare settings in different geographical regions of India,” Gajbhiye says. “The training of general practitioners on recognising the symptoms of endometriosis and referral for appropriate management of endometriosis is required.”
Doctors, campaigners and research groups in India have joined forces in recent years to shine a light on the burden of the condition, urging the government to draw up guidelines for treatment and do more to raise awareness. In March, a series of events including talks, online seminars and radio shows were held across India to spread information among medics, students and patients as part of worldwide Endometriosis Awareness Month.
But these changes are recent. Campaigners say patients otherwise had to go on YouTube to learn about endometriosis, or follow those who tweet about their experience as #EndoWarriors.
Singh, 31, a lawyer in Delhi, first experienced pain during her period at 18. “I bled heavily, but I didn’t think there was anything to worry about because my mother had experienced similar symptoms for most of her life,” she recalls.
The pain worsened the following year, lasting 10-12 days a month with two to three days of sharp pain during ovulation. She once bled so heavily at college that her classmates thought she was having a miscarriage.
In 2014, Singh had such much pain in her right side that she thought she had appendicitis – she had a 9cm cyst removed. Two years later, she developed another 5cm cyst and started taking hormones, which worsened the depression she had been dealing with after “lying on the bed in a foetal position and clutching my stomach” since her symptoms began.
Quick GuideA common condition
Show
The human toll of non-communicable diseases (NCDs) is huge and rising. These illnesses end the lives of approximately 41 million of the 56 million people who die every year – and three quarters of them are in the developing world.
NCDs are simply that; unlike, say, a virus, you can’t catch them. Instead, they are caused by a combination of genetic, physiological, environmental and behavioural factors. The main types are cancers, chronic respiratory illnesses, diabetes and cardiovascular disease – heart attacks and stroke. Approximately 80% are preventable, and all are on the rise, spreading inexorably around the world as ageing populations and lifestyles pushed by economic growth and urbanisation make being unhealthy a global phenomenon.
NCDs, once seen as illnesses of the wealthy, now have a grip on the poor. Disease, disability and death are perfectly designed to create and widen inequality – and being poor makes it less likely you will be diagnosed accurately or treated.
Investment in tackling these common and chronic conditions that kill 71% of us is incredibly low, while the cost to families, economies and communities is staggeringly high.
In low-income countries NCDs – typically slow and debilitating illnesses – are seeing a fraction of the money needed being invested or donated. Attention remains focused on the threats from communicable diseases, yet cancer death rates have long sped past the death toll from malaria, TB and HIV/Aids combined.
'A common condition' is a Guardian series reporting on NCDs in the developing world: their prevalence, the solutions, the causes and consequences, telling the stories of people living with these illnesses.
Tracy McVeigh, editor
Singh was finally diagnosed in September 2020, when the endometriosis had spread to her rectum, uterosacral ligaments and fallopian tubes. Her uterus was removed last May, and complications forced her to use a catheter for four months.
The challenges women face in dealing with endometriosis is “a symptom of the larger ‘gender pain gap’,” Singh says. “Women are often told that some pain is normal. Hell, we even bond over it. But many women have no idea what pain feels like. I must say, women are equally dismissive – if not more – of the pain other women face, because there’s no way to tell someone to differentiate between ‘normal’ pain and ‘endometriosis pain’.”
after newsletter promotion
Preety R Rajbangshi, who leads the global women’s health programme at the George Institute for Global Health India, a medical research body focusing on non-communicable diseases, says the normalisation in Indian society of pain has delayed diagnosis and treatment. “The myth around dysmenorrhea [period pain] is that pain during menstruation is normal and it will subside after marriage, and it is widespread. Therefore, many adolescent girls and women experiencing discomfort during menstruation remain undiagnosed.”
Apoorva Joshi, a 33-year-old clinical nutritionist who has suffered from endometriosis, says: “One of the ways in which the disease can be diagnosed is through a transvaginal sonography [ultrasound]. But due to the social construct of virginity and taboo around sexual life before marriage, most doctors or patients don’t consider it an option for unmarried women, which delays the diagnosis further.
“I didn’t know the severity of my disease for eight years due to these issues. And when I finally discovered it, it was too late and complex to get it treated.”
Ruma Satwik, a fertility specialist in Delhi’s Sir Ganga Ram hospital, complains about the lack of a national programme. “We have national programmes for anaemia, antenatal, intranatal and postnatal care; adolescent health that focuses largely on health education; contraception; immunisation; but none for endometriosis,” she says.
During her battle with endometriosis, colleagues and friends gave Singh the nickname “grandma” because she always carried so many medicines.
“Pain ruined my life,” says Singh. “I worked really hard to get into a good school, but my grades were screwed. I worked hard to get a good job, but I could hardly work.
“I had no social life. My relationships were tense. And my mental health was, at a point, beyond repair,” she recalls.
“And the depression was not necessarily because of the pain all the time, it was the shame – the shame of not being able to explain what was wrong with me and why was I the freak who always had a stomach ache.”
* Ruhi Singh is a pseudonym