‘Waste of money’: Pain specialists challenge endometriosis surgeries

Australia’s top pain specialists have challenged the need for invasive surgery to diagnose and treat endometriosis as they question whether the lesions are a leading cause of women’s pain.

The Faculty of Pain Medicine of the Australian and New Zealand College of Anaesthetists argued that a focus on endometriosis and laparoscopies actually delayed effective treatment and called on governments to fund evidence-based pain services instead.

“The long-held paradigm that endometriosis lesions are a direct cause of [persistent pelvic pain] is no longer tenable,” the faculty said in a new professional statement sent to its 470 fellows last month and provided to The Age.

It is the faculty’s first statement on endometriosis and pelvic pain to guide medical practitioners and help the government prioritise spending.

Endometriosis is found in only 40 to 60 per cent of laparoscopies in people who have persistent pelvic pain, the document said. But lesions are also found in up to 45 per cent of pain-free women.

“Pain intensity has not been shown to reliably correlate with lesion volume, distribution, histological type or even presence of endometriosis lesions,” the document said. “Surgical treatment of lesions has not been shown to reliably improve pain and disability outcomes.

“Some evidence suggests that ill-advised surgery may in fact worsen outcomes for some women.”

Victoria, which has launched an Australian-first women’s pain inquiry, last year doubled the number of state-funded laparoscopies.

“It is a complete waste of money,” said gynaecologist and pain medicine specialist Professor Sonia Grover, the director of gynaecology at the Royal Children’s Hospital.

She said the funding would be better targeted at pain services or other healthcare. The Allan government has been looking to cut back hospital funding elsewhere.

“We’re not going to fix people with laparoscopies,” Grover said. “But in this current era there’s a lot of pressure: you have to have your laparoscopy, you have to get your diagnosis. No, what women in pain actually need is for their pain to be managed, whatever the cause is.”

In a submission to the Victorian inquiry, also provided to The Age, the faculty said underinvestment in women’s pain services had reached a critical level that amounted to a postcode lottery. Some regions completely missed out.

Grover, a member of the faculty’s advisory group that developed the professional statement, understood many women had suffered pain that was long dismissed. It was no surprise they sought out an endometriosis diagnosis that legitimised what they were going through, she said.

“Now they’ve got a real reason for their pain,” she said.

For the about 50 per cent of women in pain that are found to have no lesions, Grover said they had endured an invasive surgery that had its own risks and invalidated their pain even further.

She said some women sought out and had been offered repeated laparoscopies.

“I know there are people who have endometriosis who are going to be distressed by us saying, ‘It’s not all endo.’ And I am distressed that they are being offered short-term operative procedures which take all of the control out of their hands,” she said.

Grover said there was more evidence the contraceptive pill or Mirena helped rather than a laparoscopy. She said sleep support or physiotherapy could also manage pain.

The faculty said surgery could still help in select cases, but that further research was needed to work out who those patients were.

Private Healthcare Australia, which supported the faculty’s statement, said two-thirds of laparoscopies were done in private hospitals and typically left patients $520 out of pocket for the keyhole surgery.

Medicare contributes about $1100 and private health funds put more than $5800 towards procedures with an overnight stay.

Leah Filley has had her share of dismissive GPs since her debilitating pain started when she was aged 13.

From 14, she was told having a baby could help. But when she did become pregnant in her 30s, the pain was so bad she needed crutches. One GP refused her request for a medical certificate and tried to prescribe her antidepressants instead, accidentally inspiring her to make a documentary about her experiences.

Filley was recently diagnosed with fibromyalgia at age 37, having spent years believing it must be endometriosis. A laparoscopy in 2018 uncovered no lesions.

Still, she said it was wonderful the condition had so much awareness.

“But I think it excludes a lot of us who don’t have that diagnosis,” Filley said. “It puts you back in that category of saying, ‘I’ve got really bad period pain’, which just feels like nothing. When you’re told you don’t have endometriosis, you find yourself in a wasteland.

“It says so much, doesn’t it, that to be legitimate, we have to have something you can see. So I think that speaks to the female experience too, of not being believed.”

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