Indian women continue to suffer endometriosis while Padma Lakshmi is its celebrity face. Photograph: Lucas Jackson/Reuters
The cramps were bad -- they started a day or two before the periods started and continued for a day or two afterwards. Manisha Goyal* remembers that they were so bad, sometimes she'd feel she was blacking out; she was not able to get out of bed an entire week, much less go to school. Hot water bags, painkillers would prop her up before exams, but the cramps prevented her from giving a 100 percent. School teachers -- not all -- would be sympathetic, but it was only natural, she thinks back now, that under the circumstances, she never did too well in studies, and never liked school or college much.
"For a long time, my mother thought it was just one of those things, a matter of body constitution. 'My own mother would have similar pains,' she'd say and make me some hot, watery tea," remembers Goyal, 40, now a housewife with a five-year-old son. "She took me to a gynaecologist once, when I was 15. The doctor too said much the same, that it was some kink in my reproductive system, that it would get better with age, especially after I had children." But nothing of the sort happened.
It didn't, it couldn't because Goyal's debilitating cramps were not caused by a kink. They were the result of a disease called endometriosis, in which the endometrial cells lining the inside of the uterus, appear outside the uterus and stick to other organs in the abdominal cavity -- the ovaries, fallopian tubes, bladder, and in some rare cases, as far up as the lungs and the brain. It's a disorder that American researchers have found affects five to 10 percent of all women, severely impinging, as in the case of Goyal, on their lifestyle and worse, causing infertility.
Adding to the difficulty, there is no simple diagnostic test to detect endometriosis. "An ultrasonograph and MRI help to detect endometric cysts, but it doesn't help to diagnose endometrial depositions. The gold standard in detecting the condition is, of course, laparoscopic surgery and subsequent biopsy of the cells," says Dr Manju Hotchandani, a consultant in the obstetrics and gynaecology department at Moolchand Medicity in Delhi. But being invasive and expensive, not too many women or doctors, especially in India, take recourse to surgery at once.
Thankfully, unlike when Goyal was growing up in the '80s and '90s, there is greater awareness today of endometriosis -- there has been a huge rise in the number of patients in India, some as young as 11 years old. One reason for that, says Hotchandani, is that more people, especially celebrities, are talking about it.
Around a month ago, Padma Lakshmi, American-Indian model, TV presenter and cookbook writer, hit the headlines when she talked about her two-decade-old struggle with endometriosis. "I remember school dances that I didn't go to, mid-terms I failed and family occasions that I missed. Only now do I realise how much of my life was mangled and distorted by this illness," she was reported as telling the audience while launching the MIT Centre for Gynaepathology Research. A first of its kind multi-disciplinary platform bringing together biological and mechanical engineers, obstetricians, gynaecologists and chemists, the centre will research endometriosis, polycystic ovarian syndrome and other such chronic and fairly common non-cancerous diseases of the female reproductive system.
In India, of course, no female celebrity has ever come forward to speak of her affliction, and there is very little research on the condition. The only forum is the Endometriosis Society of India, formed in Kolkata in 2004 by a group of gynaecologists who deal with the disease in the course of their practice. Besides organising national-level congresses and awareness workshops, the society also conducted a survey a few years ago to map the disease in India and come up with an "integrated and rational approach to endometriosis on a national basis".
Published in 2007, the study, in which 2,500 doctors from all over India participated, estimated that at least 26 million Indian women between the ages of 18 and 35 were afflicted by endometriosis. "The study also threw up startling regional variations," says Dr P Das Mahapatra, secretary-general of the society. "Cochin and Assam showed a high incidence, while Punjab had the fewest cases. Perhaps it has something to do with the use of pesticides in the coffee and tea plantations in South India and Assam," he surmises.
Dr Mahapatra is, however, far surer about the reasons for its enhanced occurrence in urban India, "stress and lifestyle choices such as delaying the first pregnancy to post-30". The Endometriosis Society recently conducted another survey, this time in five schools in Kolkata, and found that "five per cent of the girls below 18 who complained of dysmenorrhea (the medical name for severe cramps during menstruation) are affected by the disorder".
Endometriosis is one of the principal causes of infertility in women. Compounded with the general lack of awareness, the lack of specific diagnostic tests and no cure, it is a particularly worrisome condition.
There are medicines, from simple painkillers to non-steroidal anti-inflammatory drugs, to help manage the pain and discomfort, especially in young patients in whom the condition might be in its early stages. "The oral contraceptive pill which contains a mix of synthetic oestrogen and progestagen also helps, since it works to suppress the endometrial activity," says Hotchandani. "Then there is hormonal therapy, injections of GNRH-A (gonadotropine releasing hormone-analogues) which can help to suppress the endometric implants, which are given over a course of six to 12 months." The hormonal treatment is expensive -- each shot costs about Rs 4,000 -- and has extreme side-effects, ranging from dizziness and cold/ hot flushes to depression and acne.
"There is surgery, of course, to take away or cauterise the endometrial cells," says Hotchandani, "but in some cases, the endometrial cells can recur again." It worked in the case of Goyal, and Padma Lakshmi.
And finally there is hysterectomy, surgical removal of the uterus and ovaries. But that's only an option for women who have completed their families and are past the reproductive age. For younger women, managing the disorder as best they can is the most they can hope for.
The alternate way
While medical science has not yet been able to lay its finger on what causes endometriosis, there is one interesting thesis that it is linked to diet. Endometriosis: A Key to Healing Through Nutrition (Dian Shepperson Mills/Michael Vernon, 2002) recommends a diet free of wheat to relieve the pain, and foods rich in magnesium to relax the muscles of the uterus and bowel. A balanced diet rich in nutrition is, of course, necessary to offset the side effects of the hormonal treatments. Among the other alternative therapies, homeopathy and traditional Chinese medicine too have been known to bring relief, as do yoga and pilates. An interesting paper by Swarnakar Paul of the Indian Institute of Chemical Biology published in February 2009 claims that curcumin, a polyphenol developed from turmeric -- everyday haldi -- had inhibited the growth of endometriosis in mice.
*Name changed to protect privacy.