Experts believe it is time for a radical rethink of endometriosis treatment

At Liverpool Street Station in London, Helen McLaughlin was overcome by waves of painful pain during rush hour – then passed out.

“I waited for my boyfriend and lost consciousness because the pain in my stomach was so intense,” she recalls. ‘I couldn’t talk or breathe. I kept coming and then passed out again, and was rushed to hospital. I was there on a morphine pump for three days.

‘I have been in severe pain before, but that was the worst day. Sometimes I intentionally burned myself with a hot water bottle to distract the pain. ‘

Most women are familiar with period pain because the uterus cramps to expel the lining once a month. But what Helen, a 35-year-old accountant, describes is symptoms of endometriosis.

The very painful condition occurs when tissue that usually forms in the uterine wall every month appears elsewhere – such as the pelvic area and stomach, chest, spine, and even the brain. And like the lining of the uterus, this endometrial tissue, nourished by estrogen, swells and bleeds every month.

However, this blood has nowhere to go, so it can cause inflammation that leads to a build-up of scar tissue that typically gets worse over time.

As a result, women suffer monthly pain, not only during a period but also during ovulation, when their body is preparing to release an egg.

Because symptoms follow the cycle of menstruation, endometriosis is often confused with heavy or painful periods and can go undiagnosed for years, often causing excruciating pain that builds up over a woman’s reproductive life – and only improves with menopause. The Endometriosis UK charity says it affects at least 1.5 million women in Britain.

Other symptoms vary depending on where the endometrial tissue grows: in the pelvis, it can cause heavy, painful periods and pain during sex; around the reproductive organs it can cause fertility problems.

Mild cases can be treated with anti-inflammatory painkillers, such as ibuprofen, and with the pill or IUD, which help suppress the estrogen that can promote tissue growth.

But many women undergo keyhole surgery, under general anesthesia, to remove the endometrial tissue, where the deposits are cut or lasered in a technique called ablation.

If this doesn’t work, some women opt for a hysterectomy (removal of the uterus) or ovariectomy (removal of the ovary). But it can come back – recurring in about 13 percent of women with severe endometriosis within three years.

Some will undergo more surgeries, with mixed results.

Now an Australian gynecologist has a controversial theory as to why these repeated surgeries can actually make pain worse.

Professor Jason Abbott of the University of New South Wales says some cases of endometriosis are not just a physical illness, but a ‘pain syndrome’ generated by the brain and caused by ‘central sensitization’, he told Gabrielle Jackson, the author of a recently published book on endometriosis, pain and prejudice.

This theory suggests that the brain comes into a pattern of experiencing pain ‘from the head’, much like a pianist can play a piece of music without seeing the score. The theory does not dispute that the painful tissue is formed, but suggests that the pain it causes may linger even after the tissue has been removed.

Helen is uncomfortable about this: “ To be told that the pain is all in women’s heads can be very insensitive, ” she says, but adds that she knows two desperate patients who have had hysterectomies hoping to rule out endometriosis. row, but with even worse pain.

There is little doubt that the psychological element of pain perception – regardless of condition – is troubled.

“We know that central sensitization plays a major role in chronic pain conditions, including menstrual pain, but we don’t know whether it is a cause of pain or a consequence,” says Professor Katy Vincent, a gynecologist and pain researcher at the University of Oxford. ‘I believe that in addition to surgery, we should also treat endometriosis holistically with physiotherapy and psychotherapy.’

Professor Abbott “has a point,” adds Professor Christian Becker, co-director of the Oxford Endometriosis CaRe Center.

‘We are in a transition period. The old clinical approach of ‘we can cure it with surgery’ probably doesn’t make sense, ‘says Professor Becker.

Certain aspects of this disease can benefit from surgery, but we don’t understand everything. Central sensitization plays a role in some cases. As soon as someone talks about the brain, people misunderstand it and we think we’re saying it’s only in the head. ‘

Professor Abbott says that ‘for some endometriosis patients who undergo surgery, there is limited or even no response. If the pain returns in a few months or even a year, repeat surgery will not give a better outcome. ‘

The picture is further clouded by evidence that not all people with endometriosis experience pain.

“You can have patients whose entire pelvic area is stuck with scar tissue but not in pain,” said Nick Raine-Fenning, associate professor of reproductive medicine at the University of Nottingham and spokesperson for the Royal College of Obstetricians and Gynecologists.

Diagnosis of the disease can take years. Many cases are falsely attributed to irritable bowel syndrome, food intolerances or extreme menstrual pain. The main difference is that endometrial pain occurs days or a week before menstruation. ‘

Helen, who lives in Essex, with fiancé David, 32, has had surgery but doesn’t think the pain sensitization theory applies to her.

She was treated as a teenager for ‘trouble’ periods. “I was on the pill when I was 16 because I had periods every two weeks,” she says. ‘I was diagnosed with endometriosis ten years later, when I was 26, and my pain only got worse.

‘I was referred for ablation in February 2011. The endometrial tissue was in my abdomen, ligaments holding the uterus in place and on the intestines and bladder. They removed what they could, but the symptoms returned. ‘

She got a spiral, but it didn’t work: ‘If it’s bad, my pelvic floor cramps. I am in so much pain that I cannot breathe with my stomach, only my chest. It makes me faint. Helen underwent another botched surgery to remove the endometrial deposits and in December 2012 she was prescribed the hormone suppressor Zoladex, which causes temporary menopause. Although her periods stopped, she started experiencing hot flashes and night sweats.

After three months, hormone replacement therapy (HRT) was offered in addition to Zoladex, but she was also told that Zoladex would damage her bones in the long term, and she had another coil.

After her collapse at the station in May 2015, Helen was given the painkiller tramadol, but her brain felt foggy and she couldn’t work.

“The last major surgery to remove endometriosis was in April,” she says. By then my left ovary had fused to my pelvic wall and other organs were attached to each other. I also had adenomyosis, where endometrial tissue grows in the wall of the uterus.

“There was nothing on it but a coil, which I already had, or a hysterectomy, which I didn’t want – even though I have the idea of ​​having children parked.

“I go everywhere with painkillers now so that when it comes back, I can come home instead of collapsing on the street.”