SUFFERING IN SILENCE?

If your period is accompanied by stabbing pains that begin days before and persist long after, you could have endometriosis. That’s when tissue grows, sheds and clots outside the uterus. Doctors may say you just have a low pain threshold. Here’s why you s

Rehana* consulted a gynaecologist for the first time in her life after her husband insisted that her listlessness, nausea and heavy bleeding could be a sign of serious illness. “From my first period at 14, the bleeding has always lasted for seven to ten days, accompanied by extreme pain in the back and lower abdomen,” says the 22-year-old. The visit to the gynaecologist revealed that she had endometriosis, with tissue growth on the outside of her uterus.

The homemaker has since had hormone therapy to help 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 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,” says Mahapatra. “We have 350 doctors associated with ESI and we organise conferences to discuss the latest treatment possibilities to ensure they are well-informed before they reach out to patients.”

Often, the condition is diagnosed when the woman seeks a consult for infertility — one 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 the Max Smart hospital in Delhi.

So, when should you go to a doctor? “If the pain is severe and comes days before the period and persists after, 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

LENA DUNHAM

The creator, head writer and star of the TV show, Girls, has been vocal in interviews and essays about her struggle with endometriosis. In an article in the March edition of Vogue, she explains how she opted for a hysterectomy in an attempt to end her battle with chronic pain.

DAISY RIDLEY PADMA LAKSHMI

The model and writer is also co-founder of the Endometriosis Foundation of America, alongside advanced gynaecological surgeon Tamer Seckin. She also talks about her harrowing struggle with endometriosis — it took her 23 years to be diagnosed — in her book, Love, Loss, and What We Ate.

JULLIANE HOUGH

The Emmy award-winning choreographer was diagnosed in 2008 and is now the spokesperson for the online awareness campaign, Get in the Know about ME in EndoMEtriosis. The star of Star Wars: The Force Awakens and …The Last Jedi recently opened up on Instagram about how the condition has affected her and how she feels others should reach out for help too.

WHOOPI GOLDBERG

The actress, political activist, author and talk show host has been raising awareness about endometriosis since her famous speech at the Endo Foundation’s first Blossom Ball for endo awareness, in 2009. Vilas Dhanu, consultant ob-gyn at Mumbai’s Hinduja Healthcare hospital.

TOUGH CHOICES

The treatment for endometriosis usually involves oestrogen-suppressants and this doesn’t work well for everyone. Bengaluru-based entrepreneur Dipika Trehan, 38, was advised to use a hormonal intrauterine device that would release progesterone into the body.

“It caused extreme mood swings,” 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 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 four years of this, a transvaginal ultrasound 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)

MY STRUGGLE WITH ENDOMETRIOSIS