CRIPPLING AGONY
Women face long, desperate battles with endometriosis
She once described the pain as being like “a fire slashing through my uterus.” Now Lena Dunham, creator and star of hit HBO series Girls, has spoken out about her decision to have radical surgery to end her decades-long battle with endometriosis.
In an essay published in the March issue of Vogue, Dunham discusses her decision, aged 31, to undergo an elective “total hysterectomy:” a procedure in which the cervix and uterus are removed but the ovaries remain. Hysterectomy is often the final sally in a long battle with a condition, suffered by 176 million women worldwide, in which tissue similar to the lining of the womb grows elsewhere in the body; most commonly the ovaries, abdomen, bladder and bowel. During a woman’s monthly cycle, this tissue thickens and bleeds yet is unable to escape the body, leading, in an estimated 30 per cent of cases, to agonizing and debilitating pain.
Treatment for the incurable condition often involves years of trial and error: repeat surgeries to remove affected tissue, the use of drugs to initiate early menopause, powerful painkillers and, frequently, false hope.
At 41, Carol Pearson took the “emotional” decision to undergo a hysterectomy following 30 years of chronic pain that cost her a successful career as a chartered accountant, and made intimate relationships “next to impossible.” Pearson’s symptoms began with the onset of puberty at age 11.
“It was this dragging, cramping pain that would knock me out for days,” says Pearson, who was diagnosed with painful periods and given strong painkillers. “I decided, I suppose, that this extreme level of pain must be normal.”
At 21, struggling with her condition as a university student, Pearson met the man who would become her husband. Yet like 50 per cent of women with endometriosis, Pearson suffered “excruciating ” pain during intercourse.
“The impossibility of intimacy can’t not affect a relationship,” Pearson, now 45, says. “I never knew sex without pain.”
The couple divorced in their late 20s.
By that time, Pearson was enduring month-long pain, as well as problems with her bowel and bladder. At 30, when she was eventually diagnosed with endometriosis it was, she recalls, a “profound relief.” Pearson hoped that the diagnosis, following a laparoscopy to remove endometrial tissue in her pelvis, would control the chronic pain that was leading to frequent absences from a job she loved.
“But what the gynecologist had seen and removed was the tip of the iceberg,” Pearson says. “The condition had spread, unseen, to my bowel and bladder. So, of course, the pain went on.”
At 31, Pearson was given hormones to initiate early menopause. Her 30s were dominated by five further surgeries to remove affected tissues, including parts of her bowel and bladder. The decision to have a full hysterectomy, alongside an oophorectomy to remove her ovaries and Fallopian tubes, came at age 41. Pearson also learned that her eggs, following years of surgery and hormone treatment, were unlikely to be viable.
“Complications from my operations left me with chronic swelling from lymphedema and because of my bladder surgery I had to selfcatheterize daily,” she says. “So, yes, having a hysterectomy at 41 was a difficult decision; but one more surgery that came with the promise of reduced pain? It was a no-brainer.”
It had taken Pearson 19 years from the first onset of symptoms to be diagnosed with endometriosis, a situation that’s grimly common. According to a 2011 survey by Endometriosis UK, the average interval from first symptoms to diagnosis is seven-and-a-half years.
Pearson is among a group of sufferers in whom endometriosis occurs alongside a parallel condition called adenomyosis, in which endometrial tissues break through the muscle walls of the uterus, a cohort most likely to benefit from a hysterectomy.
However, Andrew Horne, a professor of Gynecology and Reproductive Sciences at Edinburgh University and an adviser for Endometriosis UK, warns sufferers against being led by Dunham’s example.
“I can see why desperate sufferers might be convinced that hysterectomies are the answer to years of suffering,” he says. “But the truth is that there’s no clear evidence that a hysterectomy is a cure for endometriosis. If the ovaries remain, any endometrial tissue that’s left still sheds with the monthly cycle. And with the prospect of scarring there’s a real risk a hysterectomy will make pain worse.”
Horne advises that any women considering a prophylactic hysterectomy first take estrogen-blocking drugs (such as gonadotropinreleasing hormone agonists) that stimulate menopause, to see if their symptoms improve.
It was this dragging, cramping pain that would knock me out for days. I decided, I suppose, that this extreme level of pain must be normal.