The first wave of pain I experienced was on a pavement in Mumbai. It was crisp daybreak, and some vodka-tonic was rumbling inside me. When the sharp, scraping pain set in, radiating down to my thighs, I remember telling my friend it was a weird pain. After a shot of injectable painkiller at the emergency ward of Breach Candy Hospital, a pelvic sonography showed that at 22, I had Stage II endometriosis. The elderly, unfriendly doctor asked, after examining me, “Do you plan to get married?” Apparently, endometriosis had no permanent cure, but while a woman is pregnant or breastfeeding, the disease remains silent.
At that time, uppermost on my mind was how to land the best journalism internship in town.
Numerous consultations followed. The pain which crept up during the two weeks following my period became progressively debilitating over 12 years (during which time I got married). Anti-inflammatory drugs and painkillers became de rigueur. I am free of pain during two weeks in a month; and the other two weeks are analgesic-induced normality. There were no specialists for endometriosis in Mumbai till recently, and some of the gynaecologists I consulted sounded hollow and silly: “Your uterus is weeping, you should go for IVF (in-vitro fertilization) to get pregnant and take care of the problem.” “Pain is your friend now, accepting it is the first step.” I have undergone three laparoscopic surgeries and taken menopause-inducing hormones and other kinds of hormone therapy, which were temporary reprieves with some harrowing side effects.
Spread the word: Former model Padma Lakshmi at an awareness event for the Endometriosis Society of America in New York in March. Mike Coppola/Getty Images/AFP
In 2009, I read a provocative essay by Booker Prize-winning British author Hilary Mantel in The Guardian. She was misdiagnosed for depression and other life-threatening diseases before it was established that the cause of her agonizing battle with staying normal was endometriosis. She wrote, “People talked—and still do—of a ‘low-pain threshold’. I didn’t want anyone to think I had that. I blamed my frequent gut-ache on everything from constitutional nervousness to school dinners... No one will like me for saying this, but I’ve often noticed that it doesn’t seem to matter whether a woman goes in for yoga or reiki or dancing on hot coals at the full moon—she starts to get better when she starts to take charge.”
Mantel could be talking about 176 million women worldwide who suffer from various stages of the disease—the 2010 figure tabled by the World Endometriosis Research Foundation headquartered in London. In India, says Kolkata-based Pramathesh Das Mahapatra, the founder general secretary of the Endometriosis Society of India, the latest demographic study on the incidence of the disease points to around 26 million women suffering from the disease. “It is higher in tea- or coffee-growing areas like Assam and Kerala,” says Dr Mahapatra.
“Taking charge”, as Mantel says, translates to understanding the patterns of the symptoms. Being “on top of the pain”, as my last doctor, a specialist in endometriotic laparoscopy, told me. A fibre-rich, dairy-free diet, regular but non-strenuous exercise and a combination of drugs for pain management have largely kept my pain at bay (see box). But endometriosis symptoms have surprising ways of showing up when you least expect them to—like sudden, severe leg aches accompanied by nausea and headache. But foremost, taking charge for most women is to believe that having biological children or trying to have one should not have anything to do with managing endometriosis. Society, and in turn most families, often equate the two.
The exact cause of endometriosis is inconclusive, but various theories can explain the painful condition. Endometrial cells, similar to those that form inside the uterus, grow in locations outside the uterus. These cells are shed each month during menstruation, but in those with endometriosis, they attach themselves to tissue outside the uterus, in the ovaries, the fallopian tubes, outer surfaces of the uterus or intestines, and on the surface lining of the pelvic cavity. Due to hormonal stimulations during menstruation and ovulation, they get inflamed and bleed, and cause pain.
Through diagnostic laparoscopy, implants can be excised by specialists, but in about 60% of cases, they are likely to grow back. There is no permanent cure, although some specialists outside India are single-mindedly pursuing new methods. Ashwini Trehan, consultant at the Spire Elland Hospital in Halifax and Dewsbury, UK, has recently developed the Total Pelvic Peritoneal Excision, which requires the entire skin of the pelvic lining to be removed to prevent recurrence.
This development coincides with awareness initiatives in the US, especially by the Endometriosis Foundation of America set up by Dr Tamer Seckin and chef and former model Padma Lakshmi, who has been suffering from the disease for more than a decade. In March, Lakshmi hosted an event in New York to raise awareness about the disease which was attended by actors Whoopi Goldberg, who has been treated for endometriosis, and Susan Sarandon, who spoke about her struggles with the disease. It was an event that, for the first time, publicized this silent epidemic on the global map—and goes to demystify gynaecological diseases, most of which are curable, but which most cultures in the world—especially many parts of India—are secretive about.
In India, awareness about endometriosis is abysmally low. We are a culture prejudiced about women who have gynaecological disorders because they are considered infertile. Many regional languages have specific words to describe a “barren woman” and among some Hindu communities, including orthodox Hindu families in Assam, where I lived till I was 18, menstruation is considered unhygienic. Women and teenage girls are confined to separate rooms in a household, made to eat in cutlery meant just for the first three days of menstruation.
Girls in their early 20s are often not treated for endometriosis because parents believe menstrual pain can be cured by pregnancy—to be diagnosed with a gynaecological illness before marriage is considered a taboo. Anshumala Shukla-Kulkarni, one of the few specialists in laparoscopic surgery for endometriosis, works in Mumbai’s Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute, Andheri-West. She says: “Awareness is the biggest hurdle for this disease in India. Many women come in with advanced stages because menstrual pain is ignored. Doctors are often handicapped too because while doing our medical education, we rarely come across women diagnosed with endometriosis.”
Most women with endometriosis complain of excruciating pain. Thinkstock
Dr Shukla-Kulkarni says it is a disease that largely afflicts women from economically higher stratas of society, and the relation between an urban, fast-paced lifestyle and rich diets and endometriosis is a subject of research globally. The Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute is one of the biggest private hospitals in Mumbai, with up-to-date and expensive surgical and testing facilities. Dr Shukla-Kulkarni says, “In the past three years, I have seen the number of women coming with endometriosis rise dramatically.”
Compared with other chronic diseases, research in endometriosis is limited worldwide. Heather Guidone, chief coordinator, medical and scientific endeavours, Endometriosis Foundation of America, says: “While research is limited due to limited funding, we are making slow progress. Studies have begun detailing the link between endometriosis and certain cancers, for example, highlighting the truly insidious nature of what is considered by some, mistakenly, to be an insignificant disorder.”
Dr Mahapatra of the Endometriosis Society of India, the only Indian organization dedicated, to research in the disease, says: “We have sadly not received support for our work. We approached the Indian Council of Medical Research, but no funding was allotted.” Lone Hummelshoj, chief executive, World Endometriosis Research Foundation, says: “It is extremely difficult to get public bodies to understand the necessity of funds for research into benign women’s health diseases, such as endometriosis. We have not received public funding at all.”
Parimita Chakravorty, a 28-year-old gemmologist in Mumbai, was diagnosed with Stage IV endometriosis in 2007 when she was living in London with her husband. In 2010, after she moved residence to Mumbai, she underwent a laparoscopic surgery that disentangled her uterus and ovaries, stuck together because of endometriotic deposits all over her pelvis.
It is a capricious, tenacious and destructive disease which often goes unnoticed because of the absence of extreme pain. “I had no symptoms and so the diagnosis was late,” Chakravorty says. She has been free of the disease since 2010. Recently, she introduced a Facebook page on endometriosis. “Many women wrote in from all parts of India for information, and some just because they wanted a sounding board for their experiences with the disease. Menstrual cramps are taken lightly and it is difficult to convince family members that it is not just simple menstrual cramps. One woman wrote in to say her friends call her a ‘drama queen’. Because there are no overt symptoms, families tend to not take it seriously,” Chakravorty says. She wants to increase awareness in the city with the help of her doctor, Prashant Mangeshikar, a specialist, but has not had access to resources. “I approached some actors who I know have been treated for endometriosis, but some of them refused to acknowledge it and some said no.”
Parimita Chakravorty set up a Facebook page for fellow sufferers to share information.
Neha Kulhari (name changed on request) from Borivali, Mumbai, is 24, and a student of hotel administration. She is training to be a chef—her dream is to work with the Taj group. She has been on painkillers every month during and soon after her period since she was 17. A year ago, she could not stand upright during her period and had to be hospitalized. She was advised immediate surgery for Stage III endometriosis. “My family is totally against it because a surgery before marriage is a no-no,” she says.
Kulhari is athletic, and is part of a group of trekkers who travel to the Himalayas every summer for three weeks of trekking. She says she can’t recognize herself during her period. “Over the last one year, it has become worse, so I think it’s time to convince my parents to have the surgery,” Kulhari told me when I met her in her college canteen.
Hummelshoj gives the most abiding reason why endometriosis demands attention: “We must remember that endometriosis affects women during the prime years of their lives. It is defined as a disease affecting women during their reproductive years, but these years are also their productive years. If their ability to finish an education or maintain a career is affected, then this has a socio-economic effect which is potentially huge.”
FOOD FOR LIFE
The ideal diet recommended in the most authoritative book on endometriosis and nutrition
It’s a bible for many who suffer from endometriosis. UK-based reproductive health physicians Dian Shepperson Mills and Michael Vernon authored ‘Endometriosis: A Key to Healing and Fertility through Nutrition’, which was first published in 1999. A summary of the ideal diet that the authors recommend:
• Drastically cut down, if not eliminate, wheat in your diet. Supplement with brown rice, millet and oats. A gluten-free diet heals inflammatory conditions such as endometriosis.
• Buy the freshest food you can find and eat when they’re fresh. Avoid packaged vegetables and meats.
• Eat four fresh vegetables (not overcooked) and two fresh fruits every day—preferably organic.
• Use only cold-pressed oils in your cooking. Half your diet should consist of alkaline-forming foods such as vegetables, fruits, sprouted seeds, almonds, and the other half should be acid-forming, such as grains, pulses, egg, fish and poultry.
• Cut your intake of tea, coffee, alcohol and tobacco. Drink lots of water/fresh fruit juice and avoid bovine dairy products—choose goat’s milk or soy milk over cow’s milk.
• Avoid refined sugar and any food containing refined sugar as much as possible. It is the most commonly used, highly inflammatory ingredient in foods around the world.
(Most physicians say regular exercise helps, but usually, strenuous weight training regimes don’t suit a patient of endometriosis.)