‘Took 15 Years of Pain to Get Diagnosed’: Why Endometriosis Awareness Is Needed

One in 10 women in India is diagnosed with endometriosis, which is as common as diabetes.

Shivangi Gupta (27) (name changed to protect privacy) was in the eighth grade when she realised that her menstrual pain wasn't normal. She experienced agonising pain and endured sleepless nights – bleeding through pads, underwear, and sheets.

She thought 'her body is weird', and she 'doesn't know how to control her periods like everyone else'. It took 15 years of menstruating and unbearable pain before she was diagnosed with endometriosis.

Endometriosis is a painful disorder in which tissue similar to the lining of the uterus grows outside of it.

Endometriosis affects roughly 10 percent or 190 million of reproductive-age women and girls globally, as per theWorld Health Organization (WHO).

According to the United States National Institute of Health,

"Women with endometriosis suffer from dysmenorrhea, chronic pelvic pain, dyspareunia, dyschezia, fatigue, depression, and infertility leading to significant socioeconomic impact and morbidity."

Even after a century of research, the causes and symptoms of endometriosis remain largely misunderstood leading to delayed diagnosis and inadequate treatment.

Both the WHO and the National Institutes of Health (NIH) state that there is currently no permanent cure for endometriosis.

But a lack of understanding and treatment options adds to the suffering of those diagnosed with the condition. Moreover, it takes 6.7 years on average for a person to be diagnosed with endometriosis.

‘Overlooked’ & ‘Misdiagnosed’

Dr Bharti, an endometriosis expert based in Pune, explains that the disorder is accompanied by a cluster of painful symptoms, including severe pain in the back and lower abdomen.

Gastrointestinal issues such as painful diarrhoea and constipation are also common, but often misinterpreted as signs of other health problems.

"In severe cases, endometriosis can block fallopian tubes, create ‘chocolate cysts’ and lead to adhesions, causing organs to stick together."

Dr Bharti

But the impact of endometriosis is not just manifested physically on those suffering from it. Women like Gupta end up feeling ‘medically gaslit’ too by doctors who fail to recognise the severity of their symptoms, often affecting their mental health.

If only there was more awareness about endometriosis, laments Gupta.

"Why don't we know the symptoms of this very common disease just as much we know the symptoms of heart and lung diseases?"

Shivangi Gupta

However, it's not just a lack of awareness that leads to misdiagnosis. Dr Bharti explains that endometriosis is classified into four stages, ranging from minimal to severe, based on the extent of endometrial implants in the pelvis.

But the severity of pain doesn't always correlate with the stage of the disease, making diagnosis even more challenging, she adds.

What's The Way Ahead With Limited Treatment Options?

Dr Asha R Rao, at the Endometriosis Foundation of India (EFI), agrees with Dr Bharti.

She emphasises that endometriosis is a widely underdiagnosed condition, with women themselves dismissing their pain very often, assuming it's just a ‘bad period’.

Riya Sharma (25) (name changed to protect privacy) experienced this first thing. Ever since she started menstruating at 14, she was fed that "pain is normal."

“Every OB-GYN I consulted used to tell me that some women just have difficult periods and pain is normal.”

Riya Sharma

It was only when her severe endometriosis had extended all the way up to her rib cage, causing tissues to constrict organs in her lower abdomen, that she was finally diagnosed with the condition.

This normalisation of pain is a red flag, says Dr Rao.

"We need to dispel the myth that painful periods are normal, in fact it’s the first sign," Dr Rao emphasises.

And while there is no cure for endometriosis, there are treatment options available. Doctors tell FIT that birth control is a common prescription, but patients may need laparoscopy, a surgical procedure for diagnosis and treatment which involves small incision in abdomen.

However, EFI does also flag that many patients are reluctant to undergo surgery, and in India, access to dedicated centres and experts is even more limited. So, for now, they point to education as the first step to spread awareness about endometriosis.

(Suruchi Kumari is a Pune-based journalism student.)