My symptoms were dismissed for YEARS. Then doctors looked in my ears
For 20 excruciating years, Ellie Randazzo, from NSW, suffered from debilitating illnesses that no doctor could explain, as her symptoms remained a mystery.
For 20 excruciating years, Ellie Randazzo suffered from debilitating chronic illnesses that no doctor could explain.
The now 25-year-old, from NSW, had spent most of her life wondering if she would ever get better after a recurring ear infection first appeared when she was six.
Over the years, her condition escalated, causing her body to 'slowly fall apart' from a 'cascade' of symptoms including sinus infections, breathing difficulties, gut issues, burning or itchy skin, severe periods, agonising flare-ups and allergic reactions.
After years of living with misdiagnoses, a doctor made a disturbing discovery when he found mould growing inside her ears in 2022 - but he laughed it off, brushed the symptom aside, and sent her home with antifungal cream.
'I felt dismissed and confused but at the time it was the least of my worries compared to my other health issues,' Ellie told FEMAIL.
'I didn't realise this was a crucial finding that could have provided answers for both me and my doctors about why I was experiencing such a broad range of symptoms.
'He laughed when he saw the mould. I was so regularly dismissed that I didn't think much into it apart from the fact it added to the compounding worthlessness I was made to feel. And it wasn't the first occasion I was laughed or eye rolled at.'
What she didn't know at the time was the mould lurking inside her home posed a major health threat, one that would leave her seriously ill and doubting her own sanity.
Ellie Randazzo has a mould illness, but she only learned about the condition recently - after spending 20 years suffering from excruciating symptoms no doctor could explain
'If I had known years ago, I could have prevented this nightmare before it destroyed my life,' Ellie said.
Before learning about the mould exposure, Ellie's life 'spiralled through a medical nightmare' - ranging from multiple surgeries and invasive procedures to medications 'that only made things worse'.
'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.
She was given multiple diagnoses, including central sensitisation syndrome, endometriosis, adenomyosis and fibromyalgia.
'A lot of these conditions do have very similar symptoms but they are not an explanation for the many developing health issues I was experiencing,' she said.
By 2021, she had her fourth laparoscopic surgery after doctors were convinced she had endometriosis and her previous surgeon had missed it.
'But when I woke up from the procedure, something was horribly wrong,' she said.
'A searing, electric pain ripped through my pelvis, coccyx, and down my legs. I later learned that my pudendal nerve had been severely damaged when they aggressively removed scar tissue from my uterus.
'When the biopsy came back negative for endometriosis, they still insisted it was the cause of my crippling pain.'
The now 25-year-old had spent most of her life wondering when she would ever get better
In 2022, Ellie said she was so 'desperate for relief' that she underwent surgery for a spinal cord stimulator implant after being 'assured it was my best chance at treating the pain'.
After the procedure, her body began shutting down when she lost mobility in her feet, leaving her to resort to a wheelchair because she struggled to stand for more than a few minutes.
She was in such terrible pain that she couldn't sit on anything hard and any 'wrong' move could cause the healing tissue around her implant to tear. Eventually she opted for surgery again to have the implant removed.
'I now live with regular pain from the damage and even though it's still very sensitive, it's better out than in. At least now, I can walk again, for that I am grateful,' she said.
As the years went on, her condition worsened, reacting to foods, chemicals, fragrance, pollens, medications and so many unknowns.
She has stress fractures in her ribs from chronic vomiting, her feet would burn every time she ate food or was around mould, and she would be bedridden from the pain.
It wasn't until December 2024 she realised the two decades of unexplained symptoms she had endured were linked to toxic mould exposure.
'I was shocked, resentful and angry but also I didn't think it was possible that all these symptoms were connected to the same thing,' Ellie said.
'I had moved to the Northern Rivers where unfortunately it's not hard to find mould-ridden buildings, and that's when things started to click.'
This is the mould that's currently in Ellie's bedroom inside her rental property in NSW
Her turning point came when she was talking to a friend about her rapid weight loss and her fear of losing her hair again.
'She mentioned a male friend who had experienced similar issues and put me in contact with him. That conversation changed everything,' Ellie recalled.
'Mould illness is complex and often overlooked so it's usually through word of mouth, friends, forums, or Facebook groups that people make the connection.
'At first, I wasn't sure whether to take his advice seriously. Accepting it would mean flipping every diagnosis and treatment I'd ever received, along with every dollar I'd spent, on its head.'
During a severe flare-up, Ellie decided to Google her symptoms to see if there was a connection to mould exposure.
'I found a nutritionist's article in a forum and reading it felt like seeing my entire medical history laid out before me. It was the first time something truly made sense,' she said.
She booked an appointment with the nutritionist - and for the first time in her life, Ellie said she felt a glimmer of hope.
'I didn't tell anyone for weeks because I needed to be sure. I didn't want to get my hopes up only to be wrong again,' she said.
Ellie has been in and out of hospital due to her body 'falling apart' from a range of symptoms
She found an integrative doctor in Victoria who officially diagnosed her with Mast Cell Activation Syndrome (MCAS) and Chronic Inflammatory Response Syndrome (CIRS), the latter of which was caused by breathing in mould spores.
'I received the diagnosis that would give me a second chance... I had to lose my career, independence, savings and relationships before I was finally heard,' she said.
'The good and bad news hit me like a tidal wave and unlocked the fear of not being able to afford to get better but I also can't cope with being in this firing pain any longer.'
Reflecting back at her medical history, she remembers the signs were there from as early as six years old when she began experiencing recurring ear infections.
'Then came sinus infections, hormonal issues and a cascade of seemingly unrelated health problems. The key pattern is that no treatment ever truly worked,' she said.
'My symptoms just kept evolving, sometimes it was sinus and breathing issues, sometimes nerve pain, burning or itchy skin then painful periods and in and out of hospital from a child.
'It's been at least 20 years of declining health, possibly even longer.'
She lived in a rental property in Perth for nearly three years where she recalled being confronted with black mould due to the ongoing water leaks.
Her unexplained symptoms included sinus infections, breathing difficulties, gut issues, burning or itchy skin, severe periods, agonising flare-ups and allergic reactions
Ellie was working for a mining company in Perth, but as her condition deteriorated, she gradually transitioned to mainly working from home and the hospital.
'I rarely saw my team but they kept me on until I was ready to quit which was the hardest decision but I couldn't maintain working even from home at this point. I could barely walk and was vomiting every day, it became impossible to retain any work,' she said.
Ellie then moved to NSW in November last year so she could be closer to family.
'I was so sick and couldn't do it myself in Perth,' she said.
'I would have really good or extremely bad patches but it wasn't until I moved into the Northern Rivers home that my symptoms went crazy again, like in Perth, but this time even worse.'
Since her diagnosis, Ellie said she can see mould everywhere in her town.
'There is mould everywhere here and the more I drive around to flooded towns, the more I see how bad it really is here, it's scary knowing what it can do to you,' she said.
By sharing her story, she hopes to highlight the serious dangers of mould exposure
Ellie said she's still seeing her nutritionist, along with the doctor who diagnosed her.
However, she's far from getting better.
'I'm not as well as I'd hoped,' Ellie said.
'I go through periods of deep lows, feeling like I've lost too much to even start fighting. But at the same time, I've found hope for the first time in years.'
Ellie said she now believes a 'semi-normal life is possible', which has ignited her to 'push through the roughest parts of my day'.
But she's been unable to move into a mould-free home due to financial constraints.
'I still can't afford to move out of my current housing which has serious mould issues and I can only afford to try a couple of the recommended treatments,' she said.
'Thankfully I had a couple years under my belt working in the mines so it's kept me going all these years but I have exhausted all saved assets and superannuation getting to this point.
'Removing mould from my body will be a slow process because detoxing can trigger severe flare-ups.'
Generous family, friends and strangers have rallied behind Ellie in the hope of helping her raise money to cover the cost of her expensive medical bills and rehabilitation.
She hopes the funds can help her move into safe, mould-free housing while she continues her ongoing treatments.
These pictures of mould were taken when Ellie was living in Perth prior to moving to NSW
'I've lost hundreds of thousands of dollars - along with my health, independence and so much more on the search for answers,' she said.
'My fundraiser goal of $15,000 was the highest amount I felt comfortable asking for but in reality, it doesn't reflect the full cost of getting my life back.
'I lost everything - my savings, my stability, my health and went into major debt trying to find answers. The surgeries and therapies I underwent before I knew the real cause has resulted in lasting damage.
'Every dollar donated helps me move closer to accessing the care I need, finding a safe living environment and ultimately, regaining a quality of life I never thought possible.'
By sharing her story, she hopes to highlight the serious dangers of mould exposure.
'One of the most important things I've realised is that so many people are silently affected by mould exposure. The common denominator? Persistent, unexplained symptoms, treatments that don't seem to work, and bedrooms with mould,' she said.
'Speaking about it is what changed my life, and I'm seeing this is the best way we can help each other through this lack of understanding in our current health system.
'The new perspective I've gained over the last years of suffering fuels a fire to make a difference and I will act on that gradually as I gain more capacity.'
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