Endometriosis is an often excruciating condition that affects 700,000 Australian women. With a national action plan due next month, sufferers are finally hopeful better treatments will soon be found. By Sophia Auld.

Focus on endometriosis

Ashleigh Mills, endometriosis sufferer.
Credit: Supplied

Late last year, Ashleigh Mills was grocery shopping when stomach cramps made her drop the bags in agony. Someone had to help her back to her car. In the following months, she experienced symptoms mimicking a urinary tract infection, but tests all came back normal. Things came to a head this year, when unrelenting pain necessitated three weeks’ leave from her job as a mental health adviser. In February, surgery revealed the 36-year-old had endometriosis, a diagnosis that made sense of the seemingly disparate symptoms she’d suffered for 10 years.

Endometriosis is a condition where cells that normally line the inside of the uterus implant and grow elsewhere within the pelvis. These cells respond to the hormone cycle, leading to irritation, inflammation and scarring.

Symptoms of varying intensity include pain, fatigue, heavy periods, painful intercourse and infertility. Because the bladder and bowel are often affected, symptoms can also include painful urination, bloating and constipation or diarrhoea. The cause is unknown and there’s no cure. It affects about 700,000 Australian women.

Currently, an accurate diagnosis can only be made with a laparoscopy – a minimally invasive operation where a small instrument is passed into the abdomen to view the pelvic organs.

Dr Bastian Seidel, president of the Royal Australian College of General Practitioners, explains that the lack of a better diagnostic tool means women can wait up to 10 years to get a diagnosis. Blood tests and scans are inadequate, so laparoscopy remains the “gold standard”, he says. “That’s a test that’s often only performed in hospitals. It’s invasive, it takes a while to be put on the waiting list, it takes a while for the procedure to occur. Women rightly say there’s an unacceptable delay.” Unfortunately, there are no other promising tests on the horizon.

Seidel explains that another barrier to early diagnosis is the variety of presenting symptoms. “It would be completely unrealistic to say we can diagnose a patient with endometriosis in a single consultation by taking a history and doing a basic physical exam,” he says. “Endometriosis is too complex. It’s too individual and unfortunately the presentations don’t always follow the symptoms we see in the textbook.”

Donna Ciccia is the co-founder and director of Endometriosis Australia, a charity dedicated to raising awareness, education and funding for research. She argues there is a historical barrier to women seeking help, with some doctors passing them off as hysterical or neurotic. “Women [are told] that it’s all in your head, you’re making it up or you’re exaggerating the pain,” she says. “The gender bias in health is quite strong.”

Having symptoms overlooked was a factor in delayed diagnosis for Emma Heuston-Levack. The lawyer and freelance writer started having problems 10 days after the delivery of her son, when she woke with “gushes of fluid and blood flowing from the left side of my caesarean wound”. This was treated with a vacuum drain. The wound slowly healed, but opened again six months later with an infection.

During the next three years, the 40-year-old suffered heavy periods, bloating, fatigue and stabbing pains in the wound during menstruation. Her symptoms worsened until April 2015, when the wound started oozing. She rang around to get a doctor’s appointment, and the one she saw “pressed terribly hard on my wound and declared it was ‘probably an ingrown hair’. I was sent away confused and worried [and] made an appointment with our usual GP for a few days later”.

“The morning I was to see our GP my caesarean wound started to bleed. Coincidentally, I had started my period that morning, too. I remarked to my doctor, ‘You will think this sounds crazy, but it is like I am having my period from two spots.’ The doctor looked at the wound and immediately suspected iatrogenic endometriosis.”

Iatrogenic – or surgically induced – endometriosis is a rare form that can occur after a surgery affecting the uterus, most commonly a caesarean. Also called secondary, or scar, endometriosis, it’s thought that endometrial cells are transferred from the uterus to the surgical incision.

Heuston-Levack’s situation was complicated by not knowing what was “normal” after caesarean, with this being her first pregnancy. She also says her gynaecologist was “a bit dismissive” when she developed other symptoms later, including fatigue, migraines and muscle aches. Although these turned out to be fibromyalgia, Heuston-Levack wouldn’t see that gynaecologist again.

Bastian Seidel says it’s disappointing that women still feel they are being discriminated against or labelled as neurotic just because they have symptoms that can’t be immediately explained. “Discrimination should not be playing a role in health care,” he says. “I’m really positive that GPs in 2018 here in Australia are doing the right thing by their patients.”

Dr Charlotte Elder, a gynaecologist and spokesperson for the Royal Australian and New Zealand College of Obstetricians and Gynaecologists, agrees that doing the right things by patients is paramount. Only, she says, this may not necessarily mean getting a diagnosis. “My main thing is quality of life for the person in front of me right now. Sometimes having a diagnosis is helpful for that, but … having a diagnosis doesn’t treat the problem.”

Elder explains that because getting the diagnosis involves risks – including death – it isn’t always in the woman’s best interests. Unless surgery was necessary, such as for fertility issues, then getting symptoms under control was more important.

She says that some studies have shown that surgery itself can be a risk factor for chronic pain, thereby perpetuating the problem. Also complicating the decision is the lack of correlation between surgical findings and symptoms. “You can have very severe endometriosis and minimal or no symptoms,” she says. “And you can have very mild visual endometriosis and very significant symptoms. Thinking about the … science behind where the symptoms come from is a more useful way for getting someone symptom-free.”

Elder frames all her conversations with patients around quality of life. “I do look after women who don’t have a diagnosis, but I’m happy with that, so long as their symptoms are managed and they’re getting what they need to out of their life.”

For Donna Ciccia, improving quality of life for women with endometriosis begins with raising awareness. “Nearly half the population don’t know what endometriosis is. We say that if you know 10 women, then you know endometriosis.”

She argues that lack of awareness can partly be attributed to the normalisation of negative menstrual symptoms. “If your mum and your grandma had really bad period pain, then you’re brought up to think that it’s your lot in life because it’s the family curse. Period pain is not normal. To feel uncomfortable at times, maybe, but if it stops you doing stuff – like work, uni, school, hanging out with your friends – then you need to go and be assessed.”

Ciccia says another issue is reluctance on the part of some women to talk about their symptoms. Even within their closed Facebook support group, there are women who want to post anonymously. “They’re reading everyone else’s stories and questions about endometriosis, but they’re too afraid to ask,” she says. “It’s not only just period pain – it can affect your bowel movements, urination, painful sex – and they’re all taboo things.”

Ashleigh Mills and Emma Heuston-Levack agree that awareness and education are key to moving forward. “I don’t think there’s enough education for young women, particularly about what is normal and what is not a normal level of pain,” says Mills, whose treatment so far has cost $9000 in out-of-pocket expenses and required six weeks of unpaid leave. “For ages … I thought this is just what women have to put up with.”

Ciccia believes research will drive improved outcomes but more funding is needed. “We have some world-class researchers in Australia but they just don’t have the money to do the job,” she says.

She hopes this will change after the implementation of the National Action Plan for Endometriosis. This Australian government initiative was announced last December, with the federal health minister, Greg Hunt, issuing a national apology for not helping women with endometriosis sooner, and announcing a $160,000 research grant for the National Health and Medical Research Council to investigate better treatments.

In February, a roundtable discussion with key stakeholders was convened, and after public consultation the national action plan is due in July – with $2.5 million in additional research funding. Ciccia says this is a great start towards helping women with endometriosis get back to their integral roles in the community.

This article was first published in the print edition of The Saturday Paper on Jun 23, 2018 as "Cramped conditions".

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Sophia Auld is a freelance writer and editor based on the Sunshine Coast.