Casey Burgess, established actress, musician, television presenter, and ambassador for Endometriosis Australia, has joined the Unprocessed podcast to reveal the reality of living with endometriosis. The Hi-5 star is sharing her story, her advice and her goals to turn the concerning state of women’s health on its head.

Endometriosis affects nearly 1 million women in Australia alone – and that’s just a conservative number, with estimates suggesting up to one in seven women grapple with the condition – yet it often remains undiagnosed for years due to its varying symptoms, dismissive doctors and a lack of awareness with a wait time of between 4 and 11 years for a diagnosis, with up to 6 in 10 cases left undiagnosed. Casey’s journey with endometriosis began in her teenage years, a time when she faced excruciating pain but struggled to find validation and understanding.   

"I have this vivid memory in year seven of being in tech, sitting around the computers and I was under the computer desk curled in a ball trying not to vomit in like the most excruciating pain that you could ever imagine," Casey recalls. "And the teachers, you know, it's just one of those things that in school or as female complaining about these things... That it's like you don't look unwell but I was in that much pain that it just continued to get worse and worse and worse."

This sentiment of being dismissed or misunderstood is sadly common among women with endometriosis – so many women are told to “get over it” or that the “pain is normal for women”. But debilitating pain is never ‘normal’, and Casey’s story sheds light on the mental and physical toll this condition takes, as well as the journey to diagnosis. 

"My mum ended up getting a hysterectomy... She was begging and begging and begging for it because it was the only thing that was going to get rid of her pain," The Hi-5 star shares. "I kind of knew family-wise that that’s what I had, so it has affected my life a lot.” 

Despite her struggles, Casey’s resilience shines through as she shares her story of advocating for herself in doctor's offices – and she’s certainly not alone in needing to push her GP to take her seriously. 

"When I put a story out on I Quit Sugar about endometriosis, I am flooded with messages that say ‘this is me’”, Grace says. "They say ‘I spoke to my doctor and I was dismissed and I don't know how to advocate for myself.’” 

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Now, where were we? Well, entertainer and singer Casey says dismissal of women's pain is all too common when they take their symptoms to their doctor – but seeking out support is the general advice, right? So why do so many women walk away without a solution? Despite experiencing debilitating pain and symptoms, they often find themselves facing disbelief or indifference from doctors. This dismissal of women's pain is sadly not an isolated incident. Throughout her journey, Casey encountered numerous instances where her symptoms were downplayed or disregarded, leaving her feeling isolated and unheard. 

"I think it's honestly been so silent for so long that it's like there's so many women that have it and so many that don’t," Casey explains. "So, when you are talking to maybe your friend or your neighbour or something... And my sisters, for example, they don't have period pain but my cysts explode. Do you know what I mean?"

This lack of understanding and empathy from medical professionals can have serious consequences, delaying diagnosis and exacerbating the physical and emotional toll of endometriosis.

Casey’s story serves as a powerful reminder of the importance of listening to and believing women when they speak about their pain. It highlights the need for greater awareness and education within the medical community to ensure that women with endometriosis receive the care and support they deserve. The entertainer's openness has sparked conversations and created a sense of community among women who often feel isolated in their pain. Through social media, she discovered the power of sharing her story and connecting with others who share similar experiences. 

"I knew I wasn't alone but I didn't realise the capacity and the reach that things like that sort of social media had on people that were sort of sitting in the background going, 'Oh, does anyone else have what I have?'" Casey reflects.

One aspect of Casey’s journey that many women with endometriosis can relate to is the use of hormonal treatments like birth control pills – it’s often the first recommendation from medical professionals.

"I was on it at 15 years old, I went on it and I'll be honest, it did help," Casey says. "But if I took breaks from it, I’d have excruciating pain." 

Her decision to stop hormonal treatments and listen to her body's signals reflects a common struggle among those with endometriosis. There's often a delicate balance between managing pain and understanding one's body. 

"I hit the moment where I was like, let's actually feel and see what's going on when I get off it... I've made my own personal choice now to take myself off it and see how my body reacts so I can make further decisions that are going to better me," Casey shares.

Casey’s journey is a reminder that every woman's experience with endometriosis is unique. It's a complex condition that requires patience, understanding, and above all, support. 

“I never felt like a victim of this, it’s not easy but the conversation we’re having is a big deal.”

Unprocessed provides a platform for voices to be heard, offering support, information, and solidarity to those navigating life with endometriosis. So, if you or someone you know is looking for inspiration, education, or simply a sense of community, give Unprocessed a listen. Because no woman should suffer in silence. In sharing her experiences, Casey is not only raising awareness about endometriosis but also advocating for better treatment and understanding of women's health issues. Her courage and resilience in the face of medical dismissal serve as an inspiration to women everywhere who are fighting to have their voices heard.

Delayed diagnoses, medical gaslighting and dismissal are all too common for women dealing with endometriosis – and, really, any condition. Read about Bindi Irwin’s shocking endometriosis story, along with IQS’s own Clara Mearns’ experience with the condition and her battle to get diagnosed.

There are countless stories waiting to be heard, each with its unique ability to educate, inspire, and resonate with listeners, and Unprocessed, hosted by Clara and Grace, two incredible women on a mission to raise awareness about endometriosis, has set out to provide the platform for those voices. To catch the heartfelt conversation with Casey Burgess, head on over to the episode.

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