Secret battle
The condition that leaves millions of women in agony
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 US 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 one in 10 women in the UK of childbearing age and 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 agonising 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.
Aged 41, Sussex-based Carol
Pearson took the “emotional” decision to undergo a hysterectomy following 30 years of chronic pain that lost her a successful career as a chartered accountant, and made intimate relationships “next to impossible”. Pearson’s symptoms began with the onset of puberty aged 11.
“It was this dragging, cramping pain that would knock me out for days,” she says. Pearson 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 student at Oxford, 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, by this point, leading to frequent absences from a job she loved.
“But what the gynaecologist 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 the age of 41. Although she had always imagined she’d have children, Pearson was single and had learned that her eggs, following years of surgery and hormone treatment, were unlikely to be viable. “By this point I’d been through the wars,” she says. “Complications from my operations left me with chronic swelling from lymphedema and because of my bladder surgery I had to self-catheterise daily. 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, Professor Andrew Horne, of Edinburgh University, a consultant gynaecologist and adviser for Endometriosis UK, warns sufferers against being led by Lena Dunham’s example. “It’s great when a celebrity sheds light
‘I thought that this extreme level of pain must be normal’
on an under-discussed area of health,” he says, “and I can see why desperate sufferers might be convinced that hysterectomies are the answer to years of suffering. 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.”
In the UK, doctors are often reluctant to refer childless women, or women under the age of 40, for hysterectomies, leading some women with endometriosis to believe that gynaecologists are being obstructive, says Horne. A growing number of women who feel underserved by the British medical profession are seeking treatment, including hysterectomies, abroad in destinations such as South Africa, the procedure costs around £2,000.
One of these women is Sarah Costley, a 42-year-old university administrator from London. Costley has suffered with endometriosis since her teens and feels her treatment has been driven by management of symptoms rather than pursuit of a long-term solution to her often crippling monthly pain. “I’d like to have a hysterectomy, but know I won’t be offered one on the NHS,” Costley says.
“So I’m seriously considering going to Thailand for the operation.” Costley adds that she feels “bullied” into having a hormonal Mirena coil fitted to control her symptoms, despite her concerns about its effect on the migraines she regularly suffers.
Prof Horne advises that any women considering a prophylactic hysterectomy first take oestrogenblocking drugs (such as gonadotropinreleasing hormone agonists, or GNRHS) that stimulate menopause, to see if their symptoms improve. Dunham is among a growing number of celebrities to come out about their experience of endometriosis, including Emma Bunton, Dolly Parton, Anna Friel and Whoopi Goldberg. In 2012, Tracey Emin spoke about losing her libido after an operation for severe endometriosis brought on by the menopause, and in 2015, Oona King, the former Labour MP, talked of being stretchered out of the House of Commons after collapsing following six hours of acute endometriosis related pain.
Emma Cox, CEO of Endometriosis UK, welcomes the breaking of what she refers to as a “double taboo” of invisible chronic illness and menstruation. “We don’t talk about it so we don’t know how to talk about it,” Cox says. “Children and adults who have these symptoms don’t know how to describe what they’re feeling.”
The charity is now working alongside the Royal College of GPS on a project to bring awareness of period pain, and what constitutes normal periods, into schools.
Cox says that increased research funding for this Cinderella condition – which attracts a fraction of the funding given to chronic conditions such as asthma and diabetes – is long overdue. “It’s remarkable we’re considering hysterectomy as a treatment in 2018; in fact, it’s quite barbaric. But we’re quite in the dark about this condition. We haven’t put the research into what causes it, or the best ways to treat it.”
Although Pearson’s physical pain is now under control, the emotional anguish persists. “It still hurts that I can’t work, even after six years of enforced retirement.”
However she holds no grudges with the medical profession. “This is a complex condition with vague symptoms that overlap with many other illnesses,” she says. “We need more awareness of what causes this painful condition and – frankly – much more funding.”
‘We haven’t put the research into what causes it, or the best ways to treat it’