Martha married recently—a dream white wedding in which her husband, Gary was so moved he cried with joy at the altar. But she’s not having as much fun as many other twenty-six-year-old newlyweds.
“My husband and I aren’t as intimate as you’d expect,” she tells me shyly. “Sex is often really painful, you see.”
Martha suffers from endometriosis, a sometimes symptom-less—but in her case, agonizing—gynecological condition. It occurs when fragments of the womb lining are found in other parts of the body where they may swell, bleed, and lead to fusing and scarring.
The stray fragments are usually found in the abdomen—most often the ovaries, fallopian tubes, bladder, and bowel. However endometriosis can be as far flung as the lungs. Wherever it gets, the result can be a basketful of unpleasant symptoms from fatigue to infertility.
Precisely how many women have endometriosis is debatable. Vastly different figures are out there. Some experts say as many as 25 percent of us are affected at some time, even if we never know it. More conservative guesstimates hover around 10 to 15 percent.
For the hard facts of the matter, about five million women in the United States are currently diagnosed with the condition, with symptoms ranging from mild to severe. After menopause, it’s extremely rare.
Endometriosis gets its name from the endometrium, or womb lining. Each month, this thickens in preparation for a fertilised egg. But if pregnancy doesn’t happen, hormones cause the lining to shed, and a period occurs.
Like Martha, many women with endometriosis have horribly heavy, painful periods. In fact that’s often what propels them to see a doctor in the first place.
But all too often the response is less than ideal, as Jeanette, twenty-two, explains. Her periods had her regularly bed-bound and missing school from the age of fifteen.
But it was after her legs buckled beneath her as she walked down the stairs that her mom marched her to their doctor. “The deep burning pain was so bad, it made me collapse,” she explains.
“Anyway the doctor just dismissed me. I think he thought I was a moaning teenager with a low tolerance to normal cramps.” She left with a prescription for extra-strong painkillers.
“The next time I went to the surgery [doctor’s office], I shuffled in like an old lady. A locum [resident] was on duty and he told Mum to drive me to hospital straight away.”
Jeanette was given an emergency laparoscopy, keyhole surgical procedure where a camera is inserted through the abdomen to see what’s happening inside.
A laparoscopy is the only way to confirm endometriosis—and this is what happened to Jeanette. “The doctor said he’d scraped as many fragments as he could from my lower abdomen—on my ovaries and my bowel. But what he said next shocked me. He told me the best thing would be to get pregnant. I was an eighteen-year-old virgin at the time!”
What the doctor was getting at—albeit in a seriously flawed bedside manner—was a way to suppress the condition in some women. Pregnancy means no ovulation or periods, which has been known to halt the disease for a few years.
Instead, like many women with endometriosis, Jeanette was given a course of hormones to stop ovulation. It propelled her into a fake, temporary, menopause.
“I had hot flushes,” she says. “But for the next four months I was completely pain-free, which was wonderful.”
Unfortunately, it didn’t last. Six months after finishing the treatment, the pain was worse than before. “I went back to the doctor on crutches,” she says. A few days later, she was lying on an operating table having the rogue endometrial tissue cut away.
“I’ve had three laparoscopies since then,” Jeanette told me. “It’s extreme, but it works.” She’s taking the contraceptive Pill, which helps too.
When—and if—Jeanette decides she wants a baby, she could have a problem. Between 30 and 40 percent of women with endometriosis are infertile. Exactly why remains a mystery—just like the cause of endometriosis in general.
