Anesha George & Anonna Dutt
Rehana* consulted a gynaecologist for the first time in her life after her husband insisted that her listlessness, nausea and heavy bleeding were a sign of a serious illness.
“From my first period at 14, the bleeding has always lasted for a week to 10 days, accompanied by extreme pain in the back and lower abdomen,” says the 22-year-old. “The women in my family blamed it on the meat and dry fruits I ate, saying it was heating up my body. They took me to a quack and got me to wear a talisman during the painful days.”
When the dietary restrictions, good-luck charms and jibes about a low pain threshold didn’t work, they arranged for her to marry, in the belief that that would fix the problem. It didn’t.
Her husband, however, became alarmed and concerned by her suffering and the visit to the gynaecologist revealed that she had endometriosis, with tissue growth on the outside of her uterus. That was a year ago.
Since then, the Mumbai homemaker has opted for hormone therapy that has helped reduce the pain. Almost as life-changing, her family now sees it as the serious condition it is. “No one thinks of it as an excuse for me to stay in bed. They help me with my chores during those horrible 10 days instead,” she says.
25 mn and counting
Endometriosis comes from endometrium, the name for the type of tissue that lines the uterus during ovulation every month. In most women, the tissue grows within the uterus. In women with endometriosis, the tissue could grow anywhere in the abdomen – vagina, rectum, bladder, abdominal wall, even upper abdomen.
As with all menstrual lining, it is shed during the period. But outside the uterus, there is nowhere for the shed tissue to go. So it collects in the form of cysts or lumps, causing severe pain. Often, it causes what are called chocolate cysts, made of dried blood. Clumped together, they can cause adhesions between the organs.
While all this is unfolding within, most women are told, often even by doctors, that the excruciating pain is menstrual cramps. As a result, diagnosis is generally delayed by 10 to 12 years.
“While conditions like polycystic ovarian disorder (PCOD) are widely discussed, endometriosis is still not talked about. Most women don’t realise that they aren’t suffering alone,” says gynaecologist Dr Pramathes Das Mahapatra, founder secretary of the Endometriosis Society of India (ESI). The ESI, established in 2004, estimates that there are 25 million women with endometriosis in India.
Don’t ignore the pain
“The first step is making doctors aware of the extent of the disorder and ensuring accurate and timely diagnosis,” says Mahapatra. “We have 350 doctors associated with ESI across the country and we organise conferences to discuss the latest treatment possibilities to ensure they are well-informed before they reach out to patients. In most cases in India, diagnosis is generally delayed because painful periods are considered normal.”
Often, the condition is diagnosed when the woman seeks a consult for infertility – of the effects of endometriosis is difficulty conceiving. “About 11% of the women I treat for infertility have endometriosis,” says Dr Sonia Niak, a senior consultant in gynaecology at Max Smart Super Speciality Hospital, Delhi. “In the general population, I would guess the prevalence of endometriosis to be about 2%.”
So, when should you go to a doctor? “If the pain is severe and comes days before the period and persists after, then it could be endometriosis. See a gynaecologist and get tested,” says Dr Payal Chaudhary, senior consultant in obstetrics and gynaecology at Delhi’s Fortis Flt Lt Rajan Dhall Hospital. “Another indication is if the pain doesn’t dissipate even with antispasmodic and analgesic pills,” adds Dr Pratima Mittal, head of gynaecology at Safdarjung Hospital.
Other signs to look out for are nausea, loss of appetite or lumps in the abdomen. “I had a patient with endometriosis who developed a patch in one lung that caused her to cough up blood,” says Dr Ranjana Vilas Dhanu, consultant ob-gyn at Mumbai’s Hinduja Healthcare hospital.
The treatment for endometriosis usually involves oestrogen-suppressants and this doesn’t work well for everyone.
Bangalore-based entrepreneur Dipika Trehan, 38, was advised to use a hormonal intrauterine device that would release progesterone into the body to suppress the endometriosis.
“It caused extreme mood swings and sporadic outbursts. It just didn’t work for me,” she says. Trehan had the device removed and now uses yoga to deal with episodes of pain. “Since I know there is no cure, I focus on feeling better about myself and the pain,” she says.
Incidentally, Trehan did not have the condition until after her second pregnancy. That was when she developed Grade 1 scar endometriosis, a condition where this kind of tissue begins to grow at scar sites following a C-section. It was diagnosed after what she thought was a hernia turned out to be a lump of the tissue in her abdomen.
For Delhi entrepreneur Sukriti*, 39, passing stool was so painful, she ended up in the hospital emergency room – several times. Each time, her pain was misdiagnosed as dysmenorrhea, a fancy term for menstrual cramps.
After 4 years of this, a transvaginal ultrasound that showed that she had recto-vaginal endometriosis.
“It is crucial that doctors look out for the patient,” says Dr Chaudhary of Fortis. “This is a chronic condition that will not just go away. For a lot of these women, the pain is debilitating, and this can have a huge psychological impact. So caring for their emotional health is important too.”
(* Names changed on request)