Ahmedabad-based Jahnvi Trivedi began experiencing crippling pain in her abdomen at the age of 14, when she got her first period. At first, she and everyone around her dismissed it as regular period cramps. However, the excruciating pain would often result in her missing school for 4-5 days every month.
This pattern continued for the next 15 years, and with age, her pain only magnified. She got through school, college and work, but in every phase of her life, she would be bed-ridden with chronic pain every month. After innumerable visits to the gynaecologists, frantic internet searches and incessant crying due to the unbearable pain, Jahnvi was finally able to give a name to her condition — Endometriosis.
Endometriosis is a condition in which the tissue that normally lines the uterus grows outside it. With this disorder, the tissue can be found on the ovaries, fallopian tubes or intestines. It has no cure. While the right medical treatment can suppress symptoms, there is no way to prevent the recurrence of the disorder.
After learning about the condition in 2015 via a Google search, she approached a top surgeon in Ahmedabad, who laughed it off saying, “You think you are a doctor by getting information online?”
This was neither the first nor the last time that Jahnvi was mocked, shamed or dismissed by the medical fraternity. But she didn’t lose hope and visited more doctors till she finally found two who agreed to diagnose and treat her endometriosis in 2017.
Today, Jahnvi is getting back to “normal” life, and hopes she does not have to change jobs just because the employer refuses to understand her condition.
Jahnvi speaks with The Better India and takes us through her painful journey, with the sole purpose of raising awareness and starting a dialogue around endometriosis, a condition that has conveniently been brushed under the carpet for years.
“I dealt not only with this horrendous disease, but also with ignorance of medical professionals who labelled it as hysteria. As for society, which is too shy to discuss women’s health openly, it is high time we empathise and listen without quickly passing judgement, or worse, gaslighting them,” says Jahnvi.
‘It’s all in your head’
At some point in our lives, we have all been labelled disillusioned and we tend to suppress our feelings, accept and move on. That’s what Jahnvi tried to do throughout her teenage years.
“Very early on, I realised my pain was not similar to what my classmates were experiencing. I would have agonising pain that lasted for hours. The flow was heavy, and the pain spread to my lower back and abdomen. I got constipation and other gastric problems. It was like someone was stabbing me endlessly. I saw other girls coping with period pain as well, but they never had to miss school or PT classes because of it. I thought I didn’t have the strength to bear the pain and people around me said the same,” she says.
From blaming herself, being in denial, putting on a brave face despite the stabbing pains to being called a weakling, Jahvi took it all.
Often her mother or relatives would say she is exaggerating or lying to miss classes, do household chores or socialise. If that wasn’t enough, the doctors said it was all in her head, or that it would go away once she became sexually active. There was no dearth of bizarre statements, including one where she was told the pain would disappear once she got pregnant.
When those around her, including her doctors, failed to understand the pain she was in, Jahnvi would often have to offer other excuses, such as that she was not interested in sports, or that she would complete her work later, to get by. “I struggled to find the right words to describe my situation, and there wasn’t a definition of an acceptable amount of pain. I felt guilty about complaining and missing homework and, later, work. The pain steadily got worse as I got older,” she says.
This took a toll on all aspects of Jahnvi’s life, including her not being able to give college exams. She says she ate painkillers like candy, and they would leave her feeling drowsy and fatigued for days. She lost her self-confidence and identity.
With the hope of starting afresh, she moved to the United Kingdom in 2008 to pursue a BSc in computer science, and stayed there for the next three years, hoping to find the right doctor. There, she visited several medical institutions, but didn’t find any luck.
She returned to India in 2011 and began yet another round of visiting doctors around the country.
Determined to find solutions, Jahnvi started feeding her symptoms to Google’s search bar, and the disease that resembled her condition most was endometriosis. She approached another Ahmedabad-based doctor, who agreed to help.
“I underwent laparoscopic surgery and the results showed that I had Stage 4 Endometriosis (most severe). It had spread to other parts of my body. The report also concluded that I had a minor presence of another condition called Adenomyosis. I was so relieved to know and tell the world that it was, after all, not in my head. My mother cried a lot for ignoring my pain. According to the National Health Service United Kingdom, endometriosis is considered one of the 20 most painful diseases in the world,” says Jahnvi.
The disorder has four stages (minimal to severe). According to Johns Hopkins Medicine, the causes of endometriosis are still unknown.
“One theory suggests that during menstruation, some of the tissue backs up through the fallopian tubes into the abdomen, a sort of “reverse menstruation”, where it gets attached and grows. Another theory suggests that endometrial tissue may travel and implant via blood or lymphatic channels, similar to the way cancer cells spread. A third theory suggests that cells in any location may transform into endometrial cells,” the report says.
The symptoms include excessive menstrual cramps, pain during intercourse, abnormal or heavy menstrual flow, infertility, painful urination during menstrual periods, among others.
Jahnvi underwent her first surgery in May 2017, followed by another in 2019 in Mumbai.
Dr Abhishek Mangeshikar, founder and director of the Indian Centre for Endometriosis, who conducted Jahnvi’s second operation, says endometriosis is a more benign condition than projected.
“Though a rarely discussed disease, close to 176 million women across the world suffer from endometriosis. It takes an average of eight years to identify the disease and during that period, women go through crushing pain every month. The symptoms and severity of pain increase with time, and in some cases, the chronic pain remains even after surgeries,” he tells The Better India.
He says lack of awareness is the root cause. According to him, there are only 200 surgeons in the world who can do the surgery properly. “We need to take a myriad of steps, such as elaborating the condition on the curriculum, training every gynaecologist to diagnose the disease, and most importantly, stop trivialising the issue,” he adds.
Dr Mangeshikar actively uses online platforms to educate people and pass on the right kind of literature. He has listed everything, from symptoms, diet plans to causes that are specific for Indian women on his website.
‘Listen to your body’
“The idea behind sharing my struggle is to break the stigma that we still carry around menstruation. If you experience an unusual pain or problem, listen to your body and figure out what it is before it’s too late. Understand your daughter, wife or mother and help her research the root cause. Empathise with her and be her pillar. I was glad my family was always there. Change the conversation at the workplace and support your female employees so that they are not forced to lie or quit their career. My advice would be to raise your health problems with your doctor and don’t be shy to ask questions or even change your doctor. It’s okay to rest and do nothing on days where the pain is too much, you are not supposed to hurt yourself in order to get things done,” says Jahnvi.
You can reach The Indian Centre for Endometriosis here.
Edited by Divya Sethu