Prioritise health and ensure endometriosis doesn’t remain a ‘missed disease’

It was the year 2017. I was 25 years old and had been married for just two months, when a sudden discomfort in my lower abdomen led me to a gynaecologist. A scan revealed that I had ‘endometrial cysts’. Not one or two, but three. 

The term was alien to me. 

When I asked the doctor about the medical treatment to ‘cure’ endometriosis, she said–to my astonishment–the condition could not be cured. However, she added that there were medications and ways to control it. 

With little knowledge of the disease, I sought answers from the doctor, who explained to me that endometriosis is a disorder wherein tissue similar to the uterus lining grows outside the uterus. The tissue deposits behave like the lining of the uterus, thickening, breaking down, and bleeding with each menstrual cycle. However, as the blood has no exit route, it is trapped inside and forms cysts.

The doctor’s immediate suggestion was that I try to conceive. Some doctors believed that pregnancy, which temporarily halts menstruation for about nine months, could possibly reverse endometriosis. But this was only a theory, without solid evidence. 

Alternatively, I could take hormonal pills to suppress my monthly periods, until I decided to have a baby. 

My husband and I were left with crucial questions: How could I truly get better? Even if we chose to have a child, what about the aftermath? 

The doctor’s response was disconcerting: if the situation did not improve, they might consider removing my uterus. The prospect of facing a menopause-like state in my twenties was overwhelming and impacted me deeply. 

I had to make a tough decision. Ultimately, I opted to take hormonal pills to halt the growth of the cysts for the time being. This marked the beginning of my journey with endometriosis. 

Over the past six years, I have undergone two major surgeries and experienced irreversible damage to my body. The endometriosis has also affected my kidney, which I continue to manage to this day. 

So, why did I choose to pen this piece?

It’s because I think there is dire need for awareness about this disease, which is often missed or overlooked.

Today, in India, one in ten women suffer from endometriosis, says Manoj Saxena, Managing Director at Bayer Zydus Pharma, a prominent name in women’s reproductive healthcare. However, among India’s female population of over 60 crore, hardly 20% of women are aware of this condition, he adds. 

Dr Ratna Devi, Director of Patient Academy for Innovation and Research, says endometriosis affects close to 42 million women in the country, and many cases are either misdiagnosed or underdiagnosed. 

Awareness is the need of the hour

Overcoming the challenges of this disease requires open dialogue and awareness. 

When I approached my family to explain my condition, their concern was evident, but, like me, they too lacked understanding about the issue. 

According to the World Health Organization, the majority of the general public and frontline healthcare providers lack awareness that distressing and life-altering pelvic pain is not a normal experience. 

This lack of awareness leads to normalisation and stigmatisation of symptoms, causing significant delays in diagnosis. As a result, patients who could benefit from symptomatic medical management do not always receive the appropriate treatment. 

Dr Devi says many women suffer from endometriosis for 15-20 years without being diagnosed. “You see, not all doctors are trained to treat endometriosis, which leads to delay in diagnosis. Even many radiologists and sonographers do not excel in determining the disease,” she says.  

“Patients with any symptoms like irregular menstrual flow, painful periods, severe bloating during menstruation, during or after sexual activity, depression, anxiety etc., should seek an experienced gynaecologist’s advice,” says Saxena of Bayer Zydus. 

He also emphasises that endometriosis is not just limited to seeking the help of a gynaecologist but one may also need to consult other experts such as urologists, nephrologists, and gastroenterologists. 

In the last five to seven years, there has been a surge in the number of endometriosis cases in the country and more and more doctors are slowly becoming aware of this condition. 

Dr Hemanadini Jayaraman, Consultant - Obstetrics & Gynaecology, Manipal Hospital, Bengaluru, says, on an average, she sees four to five women with this condition every week. 

In many Indian households, issues related to menstruation are often dismissed as common occurrences among women, and the primary focus is typically on treating the ailment to enable childbearing. 

Dr Devi highlights that, in India, maternal and child health receive significant attention, but there is lack of awareness and attention beyond these aspects. Hence she has started a support group named ‘Women with Wings’ to spread awareness about the disease as well as enhance existing knowledge about treatment options. 

In my experience with endometriosis, I observed that some doctors were insistent on focusing solely on childbearing and even casually discussed the possibility of removing my reproductive organs later. It’s concerning that such important matters were approached so lightly.

Dr Jayaraman says pregnancy is not a treatment for endometriosis though there is a likelihood of the disease being dormant during the nine-month period. But it is wrong to think that it is the ultimate treatment, she says. 

“There is no known cure for endometriosis and so it is treated based on the patient’s goal. If a woman is young and willing to conceive, we suggest she try conceiving as endometriosis impacts fertility. But again, that varies from woman to woman and condition to condition. For an elderly woman, menopause itself will halt the growth of cysts,” explains Dr Jayaraman. 

Impact on quality of life

Though no clear cause of endometriosis has been identified, the treatment suggested usually involves surgeries. 

According to Dr Jayaraman, many doctors do not offer a complete course of treatment for endometriosis and rush to operate. Post-surgery follow-ups and hormonal suppression are often missed, and the patient comes back with a recurring problem, she adds. 

Dr Devi shares an example of a community member who underwent nearly 10 surgeries within a short period of six years.  

Delhi-based Naina (38), another woman suffering from endometriosis, says she had to undergo three operations even after having children. And her battle isn’t over yet as her doctors are now recommending a hysterectomy (removing the uterus) as her family is “complete”. 

After my initial laser surgery in 2019, the endometriosis cyst recurred within just three months. I also suffered from a disc bulge, affecting my L4 and L5, the two lowest vertebrae of the lumbar spine, which was apparently caused due to the pressure of the cyst. 

Seeking respite from the condition, I explored alternative treatments such as Ayurveda, homoeopathy, and naturopathy, as I wanted to avoid the multiple side effects of consuming hormonal pills. The pills caused several issues such as hot flashes, weight gain, water retention, hair loss, fatigue, and other indescribable symptoms. 

However, the effectiveness of the alternative treatments was much slower than the progression of the cysts.

Then, in 2022, I was diagnosed once again with multiple cysts that had spread across my entire abdomen, putting significant pressure on my ureter, leading to the dysfunction of one of my kidneys. This revelation came as a shock to me as I had never imagined that what seemed to be a ‘menstrual problem’ could have such far-reaching effects on other organs in my body. 

During my visits to various doctors, I came to the alarming conclusion that I might have to part with my kidney. Fortunately, while seeking a second opinion, I came across a doctor who emphasised that addressing the underlying cause should be the top priority, and other issues could be managed simultaneously. This approach spared my kidney during an unavoidable surgery that I had earlier this year.

This harrowing experience made me realise that endometriosis, though not fatal, is a life-altering condition with significant implications on one’s well-being—physical, mental, and emotional.

For the past six years, I have yearned for the day when I can finally lead a pain-free life. 

Apart from surgeries, one also has to deal with other side effects. Most women undergoing surgery often have their ovaries and fallopian tubes removed due to the significant inflammation caused by endometriosis. 

What’s the best recourse?

Given how endometriosis can affect the quality of life, I cannot stress enough how important early intervention is. Early diagnosis and treatment can slow or halt the natural progression of the disease and reduce long-term symptoms.

Dr Devi suggests women undergo routine medical checkups and seek immediate medical attention whenever they experience any discomfort. This is the first step towards tackling the issue, she says.

Apart from the discomfort I experienced in my abdomen, there had been no other symptoms. My experience made me realise how women often dismiss any such pain, thinking it is commonplace, often masking it with painkillers. 

Women do not prioritise their health and end up living in pain throughout their lives. This has to stop now! 

Had I ignored my discomfort, I might not have discovered my condition, or perhaps it would have been diagnosed much later. Although I did seek help early, I sometimes wonder if my life would have been vastly different had I been aware of my condition earlier. 

Padma Lakshmi, an Indian-American author has penned down her experience with endometriosis in her book Love, Loss And What We Ate. She writes that she was diagnosed with endometriosis in 2006, after experiencing symptoms for nearly 23 years. And she’s been a huge proponent of raising awareness and supporting people with the condition ever since.

I hope, through this article, I can contribute to spreading awareness about this often overlooked condition, referred to as the 'missed disease.' I am determined to help as many women as I can so that they do not have to endure the pain and suffering I underwent. 

I urge other women to join me in my effort to raise awareness regarding endometriosis. Together, let us work towards supporting others affected by this condition.