‘I was dismissed entirely’: Doctor’s shameful advice to Aussie teen

The grim reality of a visit to the doctor’s office for one in nine Australian women has been laid bare.

Imagine going to your doctor to complain of “stabbing, burning” pain and organs that “feel like hot coals”, and being told to “just take a Panadol”.

Or being a 12-year-old girl, and being told by your female doctor to just get pregnant, to “stretch (the endometriosis) out of (your) womb”.

For the one in nine Australian women who suffer from endometriosis – a debilitating chronic illness that causes severe pelvic pain and infertility – this is too often their reality.

Despite its prevalence, the condition remains largely shrouded in mystery and misinformation, and is frequently mishandled by doctors. A survey conducted by news.com.au of more than 1700 people with endometriosis found that 54.4 per cent of respondents had “mostly negative” experiences with doctors; of those, 17.3 per cent said they had “never” been taken seriously while seeking medical help for the condition.

Women are treated as unreliable witnesses to their own wellbeing for myriad reasons – among them a knowledge gap when it comes to uterine health and how to properly “deal” with the condition, for which there is no cure.

Medicare is failing women and it’s About Bloody Time things changed. Around one million suffer from endometriosis. There is no cure. Help is hard to come by and in rural or regional areas, it’s virtually impossible. We are campaigning for longer, Medicare-funded consultations for endometriosis diagnosis and treatment.

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This lack of understanding, Canadian journalist and author of BLEED: Destroying Myths and Misogyny in Endometriosis Care, Tracey Lindeman tells news.com.au, is “absolutely” because the majority of people who suffer from the disease are women.

Her own diagnosis, which by the time it was identified had developed to Stage 4 endometriosis so severe it had “basically glued” her bowel and uterus together – “pulling and twisting” the latter organ “backwards” – took 24 years.

“I was really not taken seriously by the medical system. My pain was dismissed,” Ms Lindeman says.

“It was written off as psychological, or like I just couldn’t hack it – as if everyone had this amount of pain, and I was just being a sissy about it. And that wasn’t true.

“Periods actually aren’t supposed to be painful – not more painful than a couple Advil and a day of rest can tame. And no one knew that.”

It is “par for the course of being a woman,” UNSW PhD Candidate Kate Gunther tells news.com.au, that pain – the cardinal symptom of endometriosis, and the management of which, for many with it, becomes a second job – is a part of life.

Participants in news.com.au’s survey recalled being told by doctors that “it’s nothing unusual for women to have pain”, asked why they were “trying to fight nature”, or “dismissed entirely as if (pain) is just what women have to deal with”.

“(I was told) it’s all in my mind. And that ‘pain in the abdomen is a mysterious thing, (and) sometimes you have to learn to live with it’,” one respondent wrote.

“Less than a month later, my gynaecologist told me that my uterus nearly disintegrated in his hands as he was removing it.”

“It’s so pervasive in our culture,” Ms Gunther, a member of the UNSW Gynaecological Cancer Research Group, says.

“We just associate (endometriosis symptoms like) back pain and fatigue with being a modern woman. And so there’s a delay with women wanting to take (their pain) seriously, and actually getting to a primary healthcare provider. And then there’s also a problem at the institutional level, where there’s this idea of medical gaslighting.

“I don’t think that every doctor intentionally does that, or doesn’t take your pain seriously, but pain is inherently difficult to compare. What one person’s ‘normal’ may be is not another person’s normal.”

Pain is subject, Ms Lindeman agrees, “to how much you’re willing to put up with”.

“It doesn’t matter how painful it is to some other person. It’s about how painful it is for you, that’s what really matters. Yet (doctors) hold you up to this quote-unquote ‘objective’ standard, when medicine is completely subjective. And those frustrations trickle into the care that you receive,” she says.

UNSW professor of obstetrics and gynaecology Dr Jason Abbott tells news.com.au that aside from patients possibly believing their symptoms are “normal”, doctors dismissing them as such is the main reason it still takes an average of seven years to get an endometriosis diagnosis.

Less than a third of the women with endometriosis surveyed by news.com.au were diagnosed in under six years, with almost half (45.4 per cent) taking more than six years to be diagnosed and 22.4 per cent still awaiting a formal diagnosis.

“When you first go and see a primary care provider, if that experience is poor, ie. ‘Suck it up and take a Panadol and it’ll all be fine’ – because that’s what happens – then they may never go back to that doctor,” Dr Abbott says.

“Or, it might take them a long time to work up the courage to go and see someone else for their ongoing symptoms.”

Without an official diagnosis, other survey respondents shared they’d been accused of “hospital shopping for attention”, “drug seeking”, or “made to feel like a junkie when requesting pain medication that actually helps”.

Ms Gunther points to the United States, where numerous studies over the past decade have found Black women are less likely to ask for any kind of pain relief “because they don’t want to be seen as drug seekers”.

“The way that you seek treatment is completely different based on your racial experience. And while we don’t have that same data in Australia, absolutely nothing about our society indicates to me that it would be any different here,” she says.

“People of colour are told that that’s ‘just the way things are’ for Black women, and Indigenous women. Their pain is taken even less seriously,” Ms Lindeman says.

“And if you’re, say, a Trans man and you have endo, the amount of gaslighting that goes on of like, ‘Obviously it’s just because you’re mentally ill’ … There’s never a ‘good’ patient for endo. There is no ideal. The baseline (attitude) is misogyny, and then every other vector of difference is piled on top of that, until you’re totally worthless.”

Still, the most pervasive thing women seem to be told – by doctors and well-meaning loved ones alike – is that pregnancy is the answer to “curing” their endometriosis.

“When I was diagnosed at 12, 20 years ago, the female doctor told my mum to get me pregnant to stretch (the endometriosis) out of my womb,” one survey participant wrote.

Another was told there was “nothing the doctors could do about it because I was still in my ‘child-bearing’ years”.

There are many problems with this advice. Pregnancy is not a proven solution to endometriosis symptoms and it can of course come with complications, some of which are more likely to affect women with endometriosis. Then there’s the assumption that pregnancy is a desired option for women with the disease. But the advice is especially cruel when coupled with the fact that endometriosis is one of the leading causes of infertility, Ms Lindeman says.

When she began asking for a hysterectomy at 26 – having decided she didn’t want children – she was told that she was “too young” to make such a call; that she would “change her mind”.

“Or, doctors would say, ‘We don’t do anything until you want a baby’. But by the time you want a baby, it might be too late. Maybe it’s already destroyed your ability to have one,” Ms Lindeman says.

“And so, a lot of people then go through IVF – which is expensive and invasive and painful. It’s just like, it never ends.”

‘Endometriosis is a condition that affects young women – in their teens, in their twenties – when they are at their most productive. That has lifelong implications.’

Dr Abbott says it’s “important to recognise” that “not everyone who has endometriosis will have a terrible outcome. Lots of people will have a really good outcome”.

“But, we do need to invest more here. And while we’re starting to see that investment, we need that to continue, because if it doesn’t, we’re just going to be in exactly the same position in 10 and 20 years from now,” he says.

“We’ve got to remember that endometriosis is a condition that affects young women – in their teens, in their twenties – when they are at their most productive. That has lifelong implications.

“We want to make sure we’re doing our very best for them to optimise their life course, and make sure they are reaching their fullest potential.”

About Bloody Time is an editorial campaign by news.com.au that been developed in collaboration with scientists recommended by the Australian Science Media Centre, and with the support of a grant from the Walkley Foundation’s META Public Interest Journalism fund.