Women join forces to turn spotlight on silent epidemic

After decades of ignorance, the painful and debilitating disease endometriosis is finally getting some attention.

There’s a disease that afflicts one woman for every 10 in your life. To say it causes pain is simplistic. The mothers, daughters, sisters, partners and friends with this disease say it makes them feel “incomplete and broken”, “like [their] body is [their] worst enemy”, “like [they’ve] failed as a woman”.

The disease is endometriosis and, despite its wide prevalence and often devastating consequences, for an embarrassing amount of time, governments have failed to recognise it, doctors have been quick to dismiss it, and most people have been unaware of it. It truly has been, as experts call it, a silent epidemic.

But in the past year, the endometriosis community achieved a critical mass of awareness, especially in Canberra. Several federal politicians forever in the midst of interest groups fighting for their attention championed their cause.

The Health Minister issued a national apology and promised to take action.

So why, after decades, even centuries, of ignorance, is so much happening now?

One place to start is near the coastal city of Bunbury in Western Australia’s south-west, known for its dolphins and mangroves. It’s where Kylie Marino grew up. She was in high school when she realised her painful periods, bloating and migraines were far worse than what her peers were experiencing. “It didn’t seem to impact their lifestyle or ability to play sport,” she says.

She saw a GP and a gynaecologist, but they made her feel like she was exaggerating her issues and suggested she just learn to live with it. “My first gynaecologist was considered to be the best in the area, but he didn’t answer my questions and told me to go have a baby, and I walked away feeling like I had to toughen up,” she recalls.

A few years later, suffering from “extraordinary”, crippling pain and a fistula in her bowel, she sought a second gynaecologist. He also performed a few surgeries but couldn’t diagnose her illness.

Seeking answers, she went to Perth to see a third gynaecologist who performed his own exploratory surgery and told her: “I’m so sorry, no wonder you’re in so much pain. You have the worst case of endometriosis I’ve ever seen.”

By the time she was diagnosed with endometriosis, she was in her 30s.

When she looks at images of the inside of her pelvis, she sees tissue that looks like spiderwebs covering her organs and “strangling” her bowel. Kylie felt a sense of validation when her doctor said: “You haven’t overstated anything, no wonder you’ve been in so much pain.”

After the diagnosis her mother, Nola Marino, hit the internet to learn about the disease.

Shocked by the staggering statistics and dearth of information, Nola took advantage of her connections as a federal Liberal MP and Chief Government Whip and directly implored Hunt – at this point new to his portfolio – to take endometriosis seriously.

About 10 per cent of women have the condition, in which cells similar to those that line a woman’s uterus grow in other parts of the body, in some cases strangling and gluing together other organs, causing excruciating pain and often mental anguish.

But many women have to wait 10 years before being diagnosed, largely because a laparoscopy, which gained ground in the ’80s, is required.

There is no cure for endometriosis. Despite the manifest damage it can cause, it is a mystery; the amount of abnormal tissue growth does not correlate with the amount of pain felt.

“[Hunt] understood quickly how serious it was, how many women were affected by it, the huge cost not only to the individual, but more broadly,” Nola says. “I think at this time Endometriosis Australia was letting him know how serious it was also.”

On Thursday the Health Minister delivered on his promise and launched the National Action Plan for Endometriosis, which seeks to reduce the delay in diagnosis, boost public awareness and educate teachers, doctors and employers about the disease.

The “momentous” document recognises the influence of stigma and cultural taboo. It lists actions such as creating free “resource kits” for newly diagnosed women, developing national clinical guidelines and supporting “world-class” research, and outlines steps towards finding a cure.

“This is not the beginning of the end for endometriosis sufferers, it’s the end of the beginning and the pathway to a whole new world of recognition and treatment,” he said at Thursday’s launch at Royal Hospital for Women in Randwick.

“In relation to treatment, we are working with the medical community and working with the [medical] colleges of GPs and obstetricians and gynaecologists, and [in relation to medical research] $2.5 million will be made available for clinical trials.”

ast year was an extremely pivotal L one for the endometriosis community. Before 2017, endometriosis had only been briefly touched on a handful of times in the Australian Parliament, excluding incidental mentions during debates about medicines.

In March last year, Labor MP Gai Brodtmann spoke of her high school friend Jill’s ordeal with the “insidious” disease in a keynote address at an EndoMarch afternoon tea, organised by Endometriosis Australia, at Old Canberra House. A few days later she gave a pithy, 200-word speech about how women were suffering in “stoic silence”.

She was overwhelmed by the “phenomenal” response to the video of her speech and became determined to “end the silence”. She raised the topic again in Parliament in May and June.

In August, she spoke of hearing stories “I’ve been confronted by normally fit women with enormous potential being dubbed the sick person in the office. I’ve been confronted by the amount of radical operations inflicted on women, often at a very young age,” she said. “I’ve been confronted by the lack of understanding and discrimination that exists in the workplace. I’ve been confronted by the lack of intimacy in relationships because sex lives are ruined by pain and endless bleeding.”

That same day, Nola Marino shared her daughter’s story, which had gone from bad to worse. She revealed Kylie’s colorectal surgeon and her about “13 surgeries, ongoing kidney problems, failed IVF cycles and early menopause”. Across the chamber of the House of Representatives, Liberal MP Nicolle Flint couldn’t believe what she was hearing – someone speaking valiantly and passionately about endometriosis. She had first heard about it from Dr Susan Evans from the Pelvic Pain Foundation.

At the first opportunity, Flint approached Brodtmann to form a parliamentary friendship group. By September, the pair had met advocacy groups, sufferers and health practitioners to figure out how to end the silence on “endo” together. They began working with Nola Marino.

By October, the ball had well and truly started rolling. They met with officials from the Department of Health and the Health Minister and Brodtmann briefed shadow health spokeswoman Catherine King about their ambitious plans. Brodtmann also spoke in Parliament of the “tragedy” of the disease.

gynaecologist had conducted a bowel resection but that, post-op, she developed an infection that camouflaged other complications.

“She was rushed into emergency with excruciating pain, a skyrocketing temperature and faeces excreting through her urinary passage. She had surgery in Perth and spent 11 days in intensive care, and we nearly lost her,” she said.

“She had peritonitis, septicaemia, a lower bowel infection and a burst appendix, and her heart went into fibrillation when a [catheter] was being inserted. She had 1500 internal staples, 15 tubes inserted, three external colostomy bags, one of which was an ileostomy, and that jigsaw of scars on her body.”

During those 11 days, Nola “willed her to live”. She told her daughter “to breathe, sweetheart, just breathe”. At one point, Kylie couldn’t lift her head off her pillow to kiss her father’s hand as he left her bedside.

“Do I have to tell you it shouldn’t have come to this? I say to every young woman take these symptoms seriously,” she said towards the end of her speech. “I say to GPs 41% Nearly half of Australians have never heard of the disease 12 It can take 12 years to get diagnosed 30% Up to a third of sufferers have fertility problems 10 Having relatives with the disease increases one’s risk tenfold 66% Sufferers who are more likely to have pain during intercourse and gynaecologists: I know the complexity of the diagnosis, but please take seriously every young woman like Kylie who presents to you with these symptoms.”

The efforts of Nola Marino, Brodtmann and Flint, alongside advocacy and support groups, paid off handsomely. In December, at the official launch of the Parliamentary Friends of Endometriosis Awareness group, Hunt, on behalf of “all of those in Parliament and all of those who have been responsible for our medical system”, issued a historic apology for not “acknowledg[ing it] an earlier time in a more powerful way”. It was here he announced the development of an action plan.

In another milestone that day, five endometriosis groups – EndoActive, Qendo, Endometriosis Australia, Pelvic Pain Foundation and Canberra Endometriosis Network – joined forces to launch the Australian Coalition for Endometriosis, which presented a clear outline of goals, with “endometriosis to be the 10th national health priority area” at the top of its list.

In WA, Kylie endured more surgeries and eventually the ileostomy bag was removed. She is now trying to live a normal life and has returned to work, knowing she will have to undergo further surgeries.

“For me, women need to be diagnosed sooner so it doesn’t reach this stage. There’s no way the endo would have had this impact on my body had it been diagnosed earlier and some kind of management put in place,” she says. “[My mother’s speech] was the first time the real bare bones of my story was being shared publicly, but I wasn’t embarrassed, I just want to help others.

“I was grateful I got to watch it when I was at home because I was very emotional.

“It’s too late for me, but to have her fighting the cause for other women is surreal and I’m so proud.”

Source: Sydney Morning Herald.