Not even wildlife warrior and powerhouse conversationist Bindi Irwin is safe from the widespread medical gaslighting of women in pain – this Endometriosis Awareness Month, the 24-year-old shares her story. Plus, I Quit Sugar's own Clara Mearns shares her experience with the debilitating condition – and the long road to a diagnosis.
Bindi Irwin suffered with agonising symptoms for a decade and, like many living with endometriosis, kept working through the pain as medical professionals wrote it off as 'normal for women'.
“For 10 years I’ve struggled with insurmountable fatigue, pain and nausea,” Bindi wrote on Twitter. “A doctor told me it was simply something you deal with as a woman and I gave up entirely, trying to function through the pain.”
Photo Credit: @BindiIrwin on Twitter
The 24-year-old conservationist decided in light of Endometriosis Awareness Month and the enduring medical bias against women, it was the time to get the message out on how many are stuck with debilitating pain and little to no support.
“I’m sharing my story for anyone who reads this and is quietly dealing with pain and no answers,” her post reads. “Let this be your validation that your pain is real and you deserve help.”
Research shows that Bindi’s experience is, unfortunately, far from a stand-alone – a number of studies indicate that the pain women experience bias, dismissal and gaslighting from their medical professionals with their symptoms not taken as seriously as their male counterparts. It’s a massive issue for diseases like endometriosis – especially considering 10% of women and girls who are of menstrual age are estimated to live with the condition – but also with diseases like heart disease, stroke and autoimmune conditions; the research shows that women are diagnosed later and have higher mortality and morbidity in some instances as a result of improper care.
A 2019 survey found that 17% of women felt they had been discriminated against by their doctor, and around a third shared that they felt they needed to prove they really were in pain. With diseases like endometriosis that aren’t visible from the outside, this dismissal means that many women’s cases will become far more severe – some can even develop into cancer if left untreated.
The daughter of world-renowned ‘crocodile hunter’ Steve Irwin and conservationist Terri Irwin shared her long journey to finally getting that diagnosis and receiving treatment for a condition that had riddled the last decade with agonising pain.
“Going in for surgery was scary, but I knew I couldn’t live like I was,” Bindi wrote on Twitter. “To cut a long story short, they found 37 lesions, some very deep and difficult to remove, and a chocolate cyst.”
Note: A chocolate cyst, also known as ovarian endometriomas, are cysts containing menstrual blood, and are an indicator of endometriosis.
“Validation for years of pain is indescribable,” Bindi wrote of finally getting the treatment she needed.
Photo Credit: @Chandlerpowell on Twitter
Endometriosis is a chronic disease that describes the abnormal growth of cells similar to those found in the uterus’ lining in other areas of the pelvis like the bowel, bladder and ovaries – but it can also spread all throughout the body. Though the cause of the condition hasn’t been pinned down yet, there are a number of contributing factors associated with endometriosis. Those who have a family history of the disorder are particularly at risk, with research clocking that increased risk in at around 10 times higher than the rest of the population. Here’s the scary part – a whopping 1 in 9 Australian women are living with endometriosis.
Clara Mearns is part of the 1 in 9 Aussie women living with endometriosis, sharing that she spent decades with symptoms and no diagnosis. The I Quit Sugar manager says she’d long believed her pain was just a normal part of the menstrual cycle – it wasn’t until a visit to a fertility ultrasound clinic specialist and a discovery of a growth known as a polyp, that she learned the cause of her pain was endometriosis.
“When asked if I got symptoms or painful periods, I told her the same thing I had been telling doctors since I was about 15, ‘I have pain that wakes me from sleep and keeps from sleeping the night before my period and the first day of my period,’ I went on to say, ‘but it never stopped me from doing anything, like I would always go to work or school, so it can’t be that bad,” Clara says.“She was the first person who said, ‘any pain during your period is not normal.”
Clara went on to have surgery to remove the polyp only to discover her condition was severe, with her surgeon stating he believed it to be stage 3 endometriosis, but it “couldn’t be confirmed without the Laparoscopy surgery.”
The Aussie mum is booked in for the procedure within the next couple of months.
For many years before her diagnosis, Clara says she too struggled with dismissive doctors and the widespread normalisation of women’s pain.
“I have been asking questions about my period for years, I think even when I was a teen,” she says. “No one ever said my periods were abnormal, I was pretty much told pain is just what happens, so I never questioned it.”
After her symptoms became more severe, Clara started seeking answers – unfortunately, doctors and specialists overlooked her concerns.
“About 7 years ago, I started to gain weight rapidly, this is when I started to go to doctors to find out what was wrong with me. I would always say that I used to lose weight easily, and at the time was going to the gym 5 days a week and eating really healthy,” she says. “Something in my body felt wrong and not like me, but no one really took me seriously.”
It was Clara’s friend who pushed her to see a doctor about the possibility of endometriosis, but, as is the case for many women with health concerns, her symptoms were dismissed.
“I went to a young female GP who told me to do more weight-based exercise and seemed very unconcerned, so that was that,” The Sydneysider shared. “Nothing was investigated further, I didn’t really know who else to turn to and I stupidly let it go.”
But the Aussie mum is far from alone here – research shows that it can take anywhere between 4 and 11 years – and often longer – for people to receive their diagnosis, with up to 6 in 10 cases left undiagnosed. Unhelpful healthcare professionals and a normalisation of pain stand at the root of the issue, with Clara revealing a particularly unsupportive experience with an endocrinologist.
“The first endocrinologist I saw basically said to me, ‘What do you want? Are you here so I will just give you drugs to lose weight?’, I had to push him to do testing as I knew something was wrong and I wanted to know what it was,” she says. “I didn’t want a drug to fix it, I wanted an answer.”
To make matters worse, after visiting a dietician, Clara was told that the endocrinologist hadn’t even completed all of the necessary tests.
“She looked at the tests he gave me and said that the tests he ordered were never going to show anything as he didn’t do the full testing,” she says. “She called him to ask him to change them. It came back that I was highly insulin resistant.”
“What I felt most frustrated about is that it took until I was 40 and trying to get pregnant that people seemed to care. Up until that point no one took me seriously and they were really dismissive. When you talk to GPs about weight gain, they all look at you like you’re lazy, unhealthy and that you’re looking for a quick fix.”
Clara’s advice for fellow women struggling to be heard by their doctors and specialists is to be your own advocate and persist in the face of dismissal.
“Change GPs and keep pushing, ask for testing and keep going until you get an answer,” she says. “Health is complex and it sometimes takes multiple people to help tell the story. You need to find those people, the health professionals won’t always give you access to them.
“Learn to advocate for yourself; if it doesn’t feel right, it isn’t.”
Head on over to Endometriosis Australia for more information on the condition and how to support its research and treatment.