Endo What?, a feature-length documentary by Shannon Cohn, is not a film the public will flock to see. It won’t win awards or turn its stars into paparazzi fodder. But it’s hands down my film of the year because its truth telling is powerful and inspirational. It shouldn’t be “inspiring” to watch a film that tells the facts about the disease you have, but if there was ever a disease in need of a film to to bust myths and spread awareness, endometriosis is it.
Astonishingly for a condition that affects one in 10 women of reproductive age – 176 million women worldwide – it is still shrouded in myth and misunderstanding, even among healthcare professionals.
In 2016 – in Australia, the US and the UK – women with endometriosis are still being told that pregnancy and hysterectomy are cures. They’re not.
This was Cohn’s motivation for making the film. She realised that in the 20 years since she was diagnosed with endo, nothing had changed. Doctors are still giving bad advice, it still takes an average of eight years to be diagnosed, women are still told periods are supposed to be painful, women are still being subjected to ineffective surgeries.
Having been through misdiagnoses and multiple surgeries, Cohn wanted to do something that would put pressure on the medical establishment to change things. She started researching successful social change movements and studied HIV and Aids campaigns.
There were three important lessons, she told me. “One, patients became experts in their disease; two, they organised incredibly well; and three, they weren’t afraid to make people in power uncomfortable.”
Endo What? is Cohn’s attempt to enable lesson one – patients becoming experts – and brings together the US’s leading endometriosis specialists as well as women with the disease to ram home some simple truths.
As Mary Lou Ballweg, president of the Endometriosis Association, points out in the film, endometriosis is “an individual’s disease” – this is part of the problem with it, in both diagnosis and treatment. One woman may suffer chronic pain and a host of other debilitating symptoms, including bladder or bowel problems and painful intercourse. Another may have little pain and few symptoms but become infertile.
“This is not a disease that you can throw yourself at the feet of a doctor and say, ‘Cure me,’” says Ballweg. Because there is no cure, only lifelong management, women with endometriosis must take charge of their health. We can’t see our surgeons as saviours or look to our GPs to provide all the answers.
Instead, we’ll need a team of professionals, who may include a gynaecologist, a pelvic physiotherapist, as well as a nutritionist or acupuncturist, and others. “Unfortunately, the way we practice medicine is not conducive for what women with endometriosis need,” points out one of the film’s experts. And this means it’s very much a case of writing your own plan, trying things out, listening to your body.
“You’ve got to know your enemy and all the tools to manage it,” says Dr CY Liu.
And this is expensive. Being poor is not a generally recognised medical symptom of disease but there’s little doubt this applies to many women with endometriosis if they want to live well. Specialist appointments, surgery, physiotherapy, pilates, yoga, nutritionists, acupuncture, medication – that all adds up to a hefty sum.
And that doesn’t include the cost of lost productivity – the shifts missed because of illness, the jobs lost, the salary sacrifice to go part-time because you can’t possibly make it to work five days a week.
“Endometriosis puts a burden on society of an estimated $119bn annually, so this isn’t just a disease of women with painful periods, this is a societal disease,” says Heather Guidone, the surgical program director of the Center for Endometriosis Care in Atlanta.
That fact from the film prompted me to do a little digging around closer to home. According to an Australian government report, the cost to society of endometriosis is $7.7bn annually.
Let’s compare that to a disease that has a comparable quality of life impact – diabetes. (Although it’s worth nothing that endometriosis, unlike some types of diabetes, is not a preventable disease and is not easily managed by lifestyle changes.)
The total annual cost of diabetes is $14.6bn – this includes healthcare costs and commonwealth government subsidies. Diabetes (type 1 and 2) affects about 1.7 million Australian men and women. Endometriosis affects about 600,000 Australian women.
In 2015 the National Health and Medical Research Council funded endometriosis research to the tune of $914,762. In the same year it provided $14,271,724 for type 1 diabetes research and $45,018,962 for type 2 diabetes research.
To put it another way, over the past five years the council has devoted $10 in funding per person with endometriosis and $200 per person with diabetes.
Why is this so, and how did it come to this? A gynaecological surgeon and endometriosis specialist, Dr Geoffrey Reid, says: “There’s a number of European governments who now recognise endometriosis as being a disease on a par with diabetes.” That’s not yet the case in Australia, the UK, the US or Canada.
But we need it to be, and that’s why Cohn is right when she says endometriosis patients have to organise. We need to demand answers from governments, and we desperately need them to more carefully examine the quality of life and financial impacts of endometriosis. Maybe then they can explain the funding disparity and come up with strategies to better support women living with this insidious disease.
We need answers: about causes, treatments, cures. And $10 isn’t going to cut it.
Of everything in the film, these words of Ballweg are still ringing in my ears: “Until the group that is affected stands up and says, ‘Enough already!,’ it will not stop.”
Enough already.