Maddie Burton vividly remembers lying on the floor of her home as a teenager, crippled by unimaginable period pain.
For almost nine years she spent the better part of each month in agony, staying home from school and later calling out of work sick when the pain got the better of her.
Her parents had no idea how to help her and not even her nurse aunts could make sense of her symptoms. At every specialist visit she was given conflicting information and diagnoses that didn’t make sense.
“I saw so many different kinds of health professionals, so I think I got a bit of everything,” she tells Now To Love exclusively of her fight to find answers.
“Some diagnosed me with early menopause, which was really strange. I had some doctors say I needed to exercise more, or exercise less, or eat more fat.”
Others told her she simply had a low pain tolerance, suggesting that the agony she experienced with every menstrual cycle was normal.
Eventually Maddie was diagnosed with polycystic ovary syndrome (PCOS), a condition that affects her hormone levels – but it still didn’t explain the pain.
“I remember everyone feeling a bit lost and unable to do anything to help. It [the pain] was just a constant thing throughout my whole life … I guess you kind of get used to it.”
But as she got older Maddie’s condition only worsened. By the time she turned 22, the pain was accompanied by nausea, dizziness and headaches that even painkillers couldn’t banish and she fainted at work multiple times.
Exhausted from years of symptoms that no doctor seemed to be able to diagnose, she saw a gynaecologist in yet another desperate bid for answers.
That’s when she heard the words that changed everything: “I think you have endometriosis.”
“I was into surgery within the next couple of weeks after that,” Maddie recalls, five years on from that bittersweet appointment. She finally had answers, but her health battle was only just beginning.
The extent of a woman’s endometriosis, a painful disorder in which tissue similar to the uterine lining grows outside a woman’s uterus, can often only be confirmed with a laparoscopy.
It meant Maddie was in the dark about the severity of her condition until she was wheeled out of the operating room missing an organ.
“When I came out, I had endometriosis everywhere and they’d taken out my appendix. I had endometrial tissue wrapped around my organs and bowels, it was quite severe,” she says.
Surgeons also removed cysts on her ovaries and had more medical staff standing by in case they discovered any more concerning issues hidden amongst the endometrial tissue destroying her body from the inside out.
After all, by the time Maddie’s illness was diagnosed she had been unknowingly living with it for years, the disorder wreaking havoc hidden away inside her.
In the days and weeks after, as the keyhole incisions in her body healed, Maddie grappled with the knowledge that this was only the start.
With no cure currently available for endometriosis, it is a life-long condition that often requires decades of pain management and surgeries for the women who are diagnosed.
“I’ve been told every five years probably I need to go back for surgery, but I know people who have had surgery six times in the past five years,” Maddie reveals with a grim laugh.
WATCH: Campaign highlights effects and treatment of endometriosis. Story continues after video.
Not only that, endometriosis – combined with her PCOS – presents a very real threat to her chances of having a family in the future.
“With endometriosis there’s always a high risk of not being able to fall pregnant,” she says quietly.
“So, they ask you, ‘do you want to freeze your eggs at 22? Or do you want to try for a baby the month after you have your surgery, because there’s a 75 per cent higher chance of falling pregnant after surgery?'”
It wasn’t a conversation she was ready for when she was diagnosed, and even now at 27 she’s not ready for children; but with her next surgery just a few months away, there’s a very real and overwhelming pressure on her to start making some sort of plan.
While her friends are celebrating career progression and relationship milestones, Maddie is having to consider the financial and physical toll of future fertility treatments.
“It’s extremely overwhelming, and very isolating and lonely,” she says, and it doesn’t help that there is such limited awareness around endometriosis and the ways it affects women, physically and otherwise.
When Maddie was first diagnosed, she was working at a “very well-known” female-dominated workplace and was confident her employer and peers would be understanding. She was wrong.
“It was the opposite for me. I got a lot of ‘you’re faking it’ or ‘you must have a low pain threshold. No one can have pain this bad from periods,'” she reveals, though chooses not to name the business.
“It wasn’t really until I came out of surgery that I felt like people were more understanding, but in the lead up to it that everyone was like, ‘just get over it.'”
The criticism only made it more emotionally taxing when Maddie’s pain would flare up, leaving her to choose between calling out sick and inviting more backlash, or ignoring her body and enduring the agony so colleagues wouldn’t talk.
Far too often, Maddie chose the latter: “I had a lot of heat packs [at work]. I was constantly taking Panadol and Nurofen just to do whatever it took to get by.”
And no amount of surgery or painkillers will be able to fix her endometriosis; they only lessens or delay the symptoms for a time.
Now coming up on her second surgery, Maddie recognises this is a health battle she’ll be fighting for the rest of her life, but understanding doesn’t make it an easier pill to swallow.
She’s already given up her career as a dancer, as well as other traditional employment options that aren’t accommodating of her waxing and waning health.
Instead, she resolved to turn her condition into something more, using her own experiences and research to establish a natural fragrance company, Your Bliss.
Like the majority of women who suffer from endometriosis, Maddie is unable to use most commercial skincare and beauty products because they contain endocrine-disrupting chemicals that can aggravate her symptoms.
When she realised that essential oils seemed to be the only other fragrance option for women with the condition, Maddie decided to do something about it.
She wanted women to be able to have “normal, pretty” perfume so that they can embrace their femininity even while dealing with an illness that so often feels like an attack on their womanhood.
Now, two years after creating the business, Maddie plans to take things a step further by pushing for fundraising and awareness to change the way endometriosis is treated in Australia.
“I want to be able to make sure that for every order that goes through [Your Bliss], we can give a portion of that [money] to more research and more awareness,” she says, adding that she wants the brand to help women with endometriosis feel “a little less alone”.
WATCH: Yellow Wiggle Emma Watkins opens up about her struggle with endometriosis. Story continues after video.
“I think that’s the worst part; when you feel like you are having a really bad experience with endometriosis, and you feel like no one wants to hear you.”
Like many women who share their experiences with the illness on a public platform – such as former yellow Wiggle Emma Watkins – Maddie hopes speaking out will spark conversations that help women get diagnosed earlier than she did.
It will also, hopefully, encourage a greater medical understanding and empathy for women suffering from the condition, as Maddie claims many health professionals still don’t take her pain seriously.
“After my diagnosis I saw different GP she said, ‘well, you don’t have endometriosis and you don’t have PCOS’ – even though I’ve been diagnosed with those things,” she recalls, the frustration clear in her voice.
It’s an experience she doesn’t want any of the estimated 830,000 Australian women suffering from the condition to have to deal with, especially those diagnosed as young as she was.
Recent research has found that one in nine Australian women will be diagnosed with endometriosis by the time they’re 44.
That statistic means that even if you are fortunate enough to never experience the pain, trauma and dismissive attitudes Maddie has lived through, you’re guaranteed to know at least one woman who has.
March is Endometriosis Awareness Month and Maddie says there’s never been a better time to start talking about the condition, both to dispel the stigma around it and to show solidarity with the women whose lives are defined by it.
“Genuinely ask how they are, what their experiences are … and just be there for them when they need you to hear them out,” is Maddie’s advice for anyone trying to support a woman dealing with endometriosis.
“Never dismiss someone’s pain or what they’re going through.”
You can donate to Endometriosis Australia, a nationally accredited charity working to increase recognition of endometriosis and provide education funding, by clicking here.