In light of Endometriosis Awareness Month, I Quit Sugar’s own Clara Mearns reveals her arduous journey to finally getting her endometriosis diagnosis after years of pain and medical gaslighting. This is her story.
Affecting nearly 10% of women and girls who are of menstrual age are, endometriosis is a chronic disease that involves 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 – in fact, it’s been found in almost very single organ! Though the cause of the condition hasn’t been pinned down yet, there are a number of contributing factors associated with endometriosis, including having a family history of the disease – research suggests people in this category have a risk 10 times higher than the rest of the population.
Clara Mearns is a 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.
In the years leading up to her diagnosis, Clara says she 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.”
She’s not alone here – 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.
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. We’re not just talking about reproductive diseases here, but also 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.
After Clara’s symptoms became more severe, the Aussie mum set out in search of 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.”
The Aussie mum shares how long it took for medical professionals to listen to her and take an interest in her debilitating symptoms.
“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 reveals that the lack of medical action not only affected her quality of life, but also put her fertility at risk.
"It makes me so angry to think they jeopardised my chances to have a baby," Clara says. "GPs don’t know enough, they only have 15 mins in a general consultation to triage your issue. I think we need direct access to specialists so we can get the right information.
"I wish they had tested me 7 years ago like I asked and not dismissed me."
The Aussie mum noted how the limited access to specialists is especially dangerous, and she's right – many women get stuck at their doctor's office and never get that referral they need to find out what's going on with their bodies. Research shows how damaging inadequate referrals can be as they undermine quality care from GPs, not to mention the studies identifying a discrepancy in different doctors' referral rates, much of which remain unexplained. Another study suggests that different attitudes of doctors can affect the ways in which they refer their patients to specialists, indicating a real issue for women as we still see the effects of pervasive attitudes to pain, including the normalisation and underestimation of symptoms. Clara is one of many to suffer from a late diagnosis as a result of poor referral practises.
"One GP in 15 mins decided my future. I am pretty sure I wouldn’t have gotten insulin resistance if I was diagnosed earlier, I wouldn’t have continued to gain weight and I would have certainly tried for a baby earlier knowing it could have made it harder for me," she says.
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.