EXCLUSIVE: A doctor laughed at what he found in Ellie's ear. Years later, it almost killed her.

When a doctor found mould growing in Ellie's ear years ago, he laughed and tossed an antifungal cream her way.

It was a mistake.

"He had no idea how to treat it," Ellie told Mamamia.

"He didn't know that if it's growing and living in the ear, it's already in the bloodstream. So an antifungal cream is not going to rid the mould."

But Ellie didn't know this at the time — so she took the cream and went on her way.

In the years that followed, her body started sending her warning signals. Constant ear infections, sinus infections, and unexplained symptoms plagued her childhood.

At first, friends and family dismissed her as a "hypochondriac". But things only got worse. Ellie developed an allergic reaction to penicillin — a common red flag for mould illness, as penicillin itself is mould-based.

By her teenage years, Ellie was battling severe periods that had started at age 11.

Watch: A day in the life with multiple chronic conditions. Post continues after video.

Doctors began attaching labels to her symptoms: central sensitisation syndrome, endometriosis, adenomyosis, fibromyalgia. But none fully explained the confusion, pain and fear she felt as her body slowly fell apart.

Gradually, her body began rejecting more substances: chocolate, alcohol, anything fermented. 

Things reached a critical point in 2021.

"That year, I had my fourth laparoscopic surgery — doctors were convinced I had endometriosis and that my previous surgeon had missed it," she said.

When she woke, something was horribly wrong. A searing, electric pain ripped through her pelvis, coccyx, and down her legs.

Her pudendal nerve had been severely damaged during the procedure. And even when the biopsy came back negative for endometriosis, doctors still insisted it was the cause of her crippling pain.

"At 18, a hysterectomy was suggested," she recalled. "I'm so, so grateful I didn't go through with that."

The next year, desperate for relief, Ellie agreed to undergo surgery for a spinal cord stimulator implant.

"They told me it was minimally invasive but let's be honest — they cut into my back, attached a machine to my spine, ran wires down it via the coccyx and implanted a 15cm battery pack into the tissue of my glute, that beeped constantly and needed regular charging."

The results were far from what she'd been promised.

"I lost mobility in my feet, was in and out of a wheelchair — or rolling around in an office chair because I couldn't stand for more than a few minutes.

"If I moved wrong, the healing tissue around the implant would tear, leaving me in agony."

Living with these mysterious conditions took an enormous toll on every aspect of Ellie's life.

"I spent every dollar I had, draining my superannuation, selling everything I owned and devoting my entire life to fixing myself. Nothing worked. The pain only got worse," she said.

But while Ellie was suffering, many of her loved ones found it hard to believe that anything was wrong.

"Looking at me, it was very hard to tell if I was sick or not," she explained. "You would have to spend a long time with me to realise how much it [affected] me."

Her symptoms continued to multiply: burning skin, severe food reactions, chemical sensitivities, fragrance intolerances, chronic vomiting leading to stress fractures in her ribs.

"My feet burn every time I eat food or am around mould. A lot of these symptoms I can cope with hiding, but a lot I cannot bear any more. When it affects my spine, I'm stuck in bed — it's made me unreliable, fearful at times and isolated."

Ellie reached her lowest point at the end of last year.

"I feel like I was only living for the sake of everybody else and no one actually understood how painful this is, otherwise people would be taking it more seriously."

When she told her friends how bad her mental health had become, they sprung into action. And finally, Ellie began to find some answers.

"[The diagnosis] came from a friend reaching out on social media to see if anyone had suffered similar symptoms, and someone reached out to them and said 'tell her to have a look into this'. And my world flipped on its head from that day onwards."

Following the advice, Ellie found an integrative doctor in Victoria who diagnosed her with mast cell activation syndrome (MCAS) and chronic inflammatory response syndrome (CIRS), caused by mould exposure.

"We know the mould in my ear was from my house in Perth," Ellie shared.

"The mould was right next to my head. There was fungus growing out of the carpet and even if I removed it, it'd be back the next day. There were constant water leaks in the back of my bedroom."

She has since lived in other places with mould, but none were as bad as her Perth home.

People with MCAS can't break down microtoxins — naturally occurring toxins produced by certain moulds (fungi) and which can be found in food.

"Because I can't break them down, I have to use a specific mould detox, like a binder, to help strip it out of my body. It will continue to grow even once I leave that mouldy environment. Once it's inside of you, it's in there for good unless you go through a specific treatment to remove it."

Ellie's new treatment plan marks the first time she's seen real improvement in her condition. She takes several types of mast cell stabilisers — one before meals, another for her post-exercise neuralgia that causes burning sensations during activity, and a third to manage the hormonal issues that have plagued her since age 11.

"[This treatment] has given me my life back," she said. "I can sleep for four hours straight for the first time in two and a half years, without any sedatives."

The protocol also includes digestive enzymes to prevent the severe vomiting that once broke her ribs, and higher-than-standard doses of antihistamines to combat full-body itching.

Combined with red light therapy for mould detoxification, the treatment is comprehensive, but comes at a steep cost – $550 for less than a month's supply.

She is also facing housing issues.

"Next week, I will have nowhere to live," Ellie said. "The house I'm living in is riddled with mould. I was only diagnosed when I got here. The faster I get into a safer place, the faster I can return to functioning the way I used to."

But finding a place is a scary prospect for the 25-year-old, who has been hurt in the past.

"You're very vulnerable," Ellie shared.

"I have had people offer me places, and they've not ended up being good people… I've experienced people taking advantage of my weakness and my lack of autonomy and putting me in very difficult positions that have been really hard to escape. 

"They've said, 'I've helped you, so you basically owe me.' It's been so traumatic, what I've put myself through to find safety."

Ellie has now started a fundraiser to help finance her medical bills, housing, rehabilitation, and food supply. 

"I think the biggest takeaway I've had with this fundraiser and talking to people that have undiagnosed illness and are living in mould is, there is such a lack of education around the toxicity of our environments if we allow them to get that way," she shared.

"And if I could ask anyone to take anything from my experience, it is to please educate yourself and believe it is real. It has absolutely destroyed lives.

"I just feel if everyone knew a little bit more about the dangers of this, and landlords were more accountable for renters, then everyone would be a lot safer within their home."

You can find details of Ellie's GoFundMe campaign here.

Feature Image: Supplied