‘I’m trapped in the prison of my body’: The severe, chronic pain of endometriosis

Meher Mirza, a 37-year-old writer based in Mumbai, has had to contend with extreme pain and fatigue during her period ever since she was was a teenager.

“The symptoms included nausea, heavy bleeding and unbearable pain, enough to make me want to carve out my uterus with a knife,” she said. “On the first two days of my period, I would change my pad every half an hour and still find myself with a sordid bloody pool on the bed. It was all I could do to writhe and twist. The pain was excruciating. I often lost between a kilo or two in the first few days of my period every month.”

Mirza’s family was loving and supportive, plying her with hot water-bottles, painkillers and sympathy. But no one had really heard of endometriosis, a diagnosis that Mirza finally received when she was in her late twenties.

Mirza is not alone in her suffering. The Endometriosis Society of India estimates that 25 million Indian women suffer from this condition. And yet, it is rarely spoken about and seldom understood, possibly because of taboos around menstruation.

What exactly is endometriosis? We know that every month, the mature human female body releases an egg or an ovum. In preparation for fertilisation, the uterus is lined with a tissue of cells called endometrium. This endometrium is then shed by the body as menstrual blood.

“However, it is possible for these cells to grow abnormally,” said Dr Anshumala Shukla Kulkarni, gynaecologist at the Kokilaben Dhirubhai Ambani Hospital. “This condition occurs when the endometrial cells which are supposed to line the uterus grow in a location outside of the uterus” such as around the fallopian tubes, ovaries, bladder, bowel, vagina or rectum.

The condition is characterised by severe, debilitating pain that is often mistaken for pre-menstrual pain. The pain is usually in the abdomen, lower back or pelvic areas, exactly where women often experience pain during their period.

“Menstrual pain typically occurs on day one or day two of a menstrual period,” said Dr Nina Mansukhani, gynaecologist at Jehangir Hospital, Pune. “In endometriosis, the pain persists up to three, four days and gets progressively worse. Sometimes sexual activity and passage of stools are also fraught with extreme pain.”

For some, the pain may even last for two weeks before, during and after their period.

Forty-year-old Keerthi Bhaskar*, an IT consultant in Chennai, described her pain as so intense that she has often contemplated suicide. “I can hardly move as wave after wave of pain radiates through me,” she said. “For two weeks of every month, it’s as though I’m trapped in the prison of my body. What makes it worse is that people hardly understand. They say my pain threshold is low. I’m lectured about how not to let the minor discomfort of one’s period get the better of me and that I should be stronger mentally and go about my day as usual. Family, friends, even doctors have no idea of the extent of my suffering during this time of month.”

Bhaskar had seen over two dozen gynaecologists before being finally diagnosed with endometriosis five years ago.

Unpredictable disease

No one really knows why these endometrial cells grow rogue, said Dr Rajeev Punjabi, gynaecologist and obstetrician at Hinduja Healthcare Multispeciality hospital in Mumbai. He also runs the Tulip Women’s Healthcare Centre in Mumbai. “These cells are also influenced by hormonal changes, similar to the endometrial cells within the uterus. That’s why symptoms often worsen with the menstrual cycle. This ‘misplaced’ tissue can cause pain, infertility, very heavy periods and scarring of tissues. And while no one can really say why this happens, there are many theories.”

Genetic factors may cause endometriosis and so can caesarean section births. “A woman tends to be more at risk for endometriosis if she delivers via a C-section,” Mansukhani said.

Based on the extent and severity of the growth of endometrial tissue, the American Fertility Society created a grading system for endometriosis. As the disease progresses from Grades 1 to 4, it is classified as mild, moderate or severe. “Grades 1 and 2 are considered mild, with minimal growth and scarring, but in grades 3 and 4, there may be the presence of severe scarring of internal tissue, chocolate cysts or growths on the uterus, adhesions” where the organs stick together, Dr Kulkarni said.

However, the severity of pain does not indicate the degree or stage of your condition, said Punjabi. “You may have a mild form of the disease and yet experience severe pain. It is possible to have a severe form (grades 3 and 4) and be completely asymptomatic or have little discomfort. It is possible for a woman to progress from grade 1 to 3 in a matter of months. It could also take several years for this progression.”

This unpredictable nature of the disease makes it very difficult to diagnose and treat.

Imaging through magnetic resonance imaging and sonograms can detect the disease in stages three and four, but it cannot accurately detect the extent of scarring. Laparoscopy is the only way to detect the extent of growth accurately. However, this is a surgical procedure in which a thin tube with a light is inserted into the abdomen through a minute incision in the belly button. This allows the gynaecologist to view the extent of scarring. Scarred tissue can be cleared away using this procedure. In most cases, severe pain is the only indication that can alert you to endometriosis at an early stage. Some doctors say sonograms can help detect the condition early, while others say the diagnostic scan makes the condition apparent only after stage three.

Diagnosing endometriosis

An early diagnosis can help endometriosis sufferers to alleviate their pain and manage the lifelong condition. But to get an early diagnosis, both patient and doctor need to pay attention to warning signs.

“While diagnosis can only be done by a medical professional, it’s important to not be dismissive of period pain,” Kulkarni said. “When a young girl complains of intense pain during or before her periods, it’s important to pay heed and approach a doctor with the symptoms. On an average it takes seven years now to receive a diagnosis because this is a very difficult condition to identify in its earlier stages, but worldwide, the medical fraternity is endeavoring to create greater awareness about this condition.”

Many sufferers say that an early diagnosis has only bewildered them, especially since their doctors advised them to try getting pregnant early as though this were a cure to their disease. When Bengaluru-based Sanjana Agarwal*, 35, a structural engineer, was diagnosed with endometriosis at the age of 17, eight out of 10 gynaecologists advised her to marry early and to start a family. “It was the last thing that was on my mind at 17 and when I was in so much pain,” she said.

Gynaecologists tend to suggest this because the symptoms are silent during pregnancy and breastfeeding, since progesterone, the hormone that supports a healthy pregnancy suppresses the hormone estrogen, which causes the growth of endometrial tissue.

“Pregnancy cannot be recommended as a preventive treatment,” said Mansukhani. “However, a major issue with endometriosis is infertility.”

According to Punjabi, infertility due to endometriosis can occur at any stage of the disease.

For a woman with endometriosis who wants to get pregnant and bear children, planning and managing the disease is essential.

“Some patients in early stages of endometriosis may conceive spontaneously or with minimum treatment,” said Mansukhani. “In more severe cases, infertility is highly prevalent. The pregnancy rate is much lower per cycle as compared to someone who doesn’t have the disease.”

Managing the chronic pain

There is no cure for endometriosis, but today there are some ways to manage the pain. To help alleviate the pain, doctors sometimes recommend lifelong use of use of oral contraceptives for women not intending to bear children and temporary use for women who do.

“There are newer drugs available now that are effective in controlling the pain,” Punjabi said.

When it was first diagnosed, Mirza’s endometriosis had already spread to several organs and her doctor suggested a laparoscopy to remove scarred tissue. The procedure, she said, helped her tremendously, and a few months later, she was put on the pill which offered her great relief too. “Although even with the pill, I never leave my house on the first two days (of my period),” she said. “But at least, I can sit up and talk. Despite this management, my endometriosis has returned like a faithful puppy.”

However, surgery and available medication do not help everyone. Lakshmi Sharath, a travel blogger in Bengaluru, has been suffering from endometriosis for over a decade and has been diagnosed with Grade 4. “My system has been weakened by fertility treatments, invasive procedures and multiple surgeries – over four of them,” she said. “The pain, both physical and emotional is excruciating.”

Today, Sharath is exploring ayurvedic remedies for pain relief.

Sometimes, in extreme cases where quality of life is a priority, doctors look to provide a lasting solution through hysterectomies, which is removal of the uterus and ovaries. In younger women, this is a treatment that should be carefully deliberated, not just because it can close the door to pregnancy, but also because estrogen produced by these reproductive organs has beneficial effects on cardiac health.

In addition to medication, there are some healthy lifestyle choices you can make to keep pain under control during endometriosis. “Women who suffer from this can benefit from a low-sugar diet and are asked to strengthen their pelvic muscles with regular exercise,” said Kulkarni.

Battling infertility

For women with endometriosis who wish to bear children, doctors often advise surgery to remove lesions and growths. The surgery provides them with a window to conceive, said Punjabi, though they still may need assisted reproductive techniques like in vitro fertilisation to be able to have a baby.

Anupama Kishore*, 26, a housewife in Madurai opted for surgery to clear her stage 3 endometriosis. She recovered quickly after surgery and conceived naturally five months afterward, she says, even though her doctors gave her no guarantee that the procedure would help her conceive. “He told me it was a step towards it but that there were no guarantees,” she says. “The relief I felt after surgery from chronic pain was enormous.”

Laparoscopic surgery can be used to suck out scar tissue, giving sufferers some measure of pain relief too. However, there is a chance of between 40% and 50% that the condition recurs within five years of surgery, so while it can help with conception, it is not a full-proof solution to pain.

“I know it was fortunate that I conceived so quickly and naturally,” said Kishore.

*Name changed to protect identity.