Rebuilding - A Life Changing Second Chance

Hello Fellow Humans!

I’m Ellie,

For years, I carried a deep shame—I couldn’t understand why I wasn’t getting better.

My health had been deteriorating since early childhood, but no one could explain why. Doctors gave me random diagnoses, new conditions, autoimmune diseases, yet nothing fully explained the confusion, pain and fear I felt as my body slowly fell apart. The list went on but the main diagnosis’ were;

⁃ Central Sensitisation Syndrome

⁃ Endometriosis

⁃ Adenomyosis

⁃ 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. I always had the drive to fight to get back to “normal,” but last year, I was to close to accepting it wasn’t going to happen. My willpower was worn out.

Then, at a time I felt was too late, I received the diagnosis that would give me a second chance. I was angry, resenting it took so long. That I had to lose my career, independence, savings, relationships before I was finally heard. 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. 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. I also wasn’t aware that I had a high level of Neuro-Inflammation, making navigating and coping with this pain virtually impossible.

(Please watch Brain on fire if you’re interested in Neuro-inflammation, the cause for hers is not mould but there is a book on it titled the same that is more detailed - this is only one of the many symptoms and presentations of this will

vary, it’s worth a watch more to shine a light on the treatment people endure with invisible conditions).

My body felt like it was burning, inside and out, everyone was telling me I’d be okay and I’ll get through this. It broke me thinking I couldn’t live up to those words, I most certainly was not okay and was not going to be okay if it continued like that.

After years of searching, blaming myself, pushing through unbearable pain—I had the answer. I felt came too late and the damage was already done.

I’m faced with something I can’t overcome alone. No matter how much I fight or how hard I push, I physically cannot do this without help.

My Back Story : A Broken System That Stole My Health

By 2021, my body was in freefall but instead of answers, I was sent down a path of medical harm and misdiagnosis.

That year, I had my fourth laparoscopic surgery—doctors were convinced I had endometriosis and that my previous surgeon had missed it. But when I woke up from the procedure, something was horribly wrong.

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. At 18, a hysterectomy was suggested, once again, so so grateful I didn’t go through with that.

I trusted them. I believed them. I doubted myself.

For the next few years, I spiralled through a medical nightmare—multiple surgeries, invasive procedures and 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.

By 2022, I was so desperate for relief that I had spinal surgery for a Spinal Cord Stimulator Implant. I was assured it was my best chance at treating the pain. 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 cocyx and implanted a 15cm battery pack into the tissue of my glute, that beeped constantly and needing regular charging. Not invasive? Tell that to my body.

Instead of relief, my body began shutting down.

⁃ 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

⁃ I couldn’t sit on anything hard, and even the softest pillow hurt because of the attachments pressing under my

⁃ I begged them to take it out. They refused. I had to fight, argue and justify myself just to have it removed—paying them while they gaslit me, threatening to deny me future help. I shouldn’t have had to fight for my own body.

⁃ 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.

The Answer That Came Too Late

As the years went on my condition worsened, reacting to foods, chemicals, fragrance, pollens, medications and so many unknowns. There isn’t a day my stomach and pain isn’t driving every decision I make. I have adrenal dumps that cause a panick attack sensation even when I’m safe. I have stress fractures in my ribs from chronic vomiting (that has slowed already with new medication yay), 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 bare any more, when it affects my spine, I’m stuck in bed - it’s made me unreliable, fearful at times and isolated. I watch life go past me and miss out on so much. The worst part of it all is that I’ve had little autonomy for a while, I’ve had to rely on friends, strangers and my dog Bear to keep me here. I was so sick that my friends and family didn’t know how to help me anymore. I could see the helplessness in their eyes. That broke me. I had accepted that I was a burden— I was ready to let go.

Finding Hope - December 2024

By shear chance of searching a new symptom, I was able to find an Integrative Doctor in Vic, her waitlist was too long for me to hold on but the universe answered and they saw me within the week. I couldn’t believe it and I had no idea it was going flip every diagnosis I’ve had in the past on its head. Giving me freedoms I never knew I could experience, the chance of having my own kids in the future being one of them.

I was diagnosed with: Mast Cell Activation Syndrome (MCAS) and Chronic Inflammatory Response Syndrome (CIRS), the latter due to mould exposure. Turns out my body can’t detox mycotoxins. I was living in it again without knowing and it was/is accelerating my condition greatly.

If I had known years ago, I could have prevented this nightmare before it destroyed my life. Both conditions fuel each other, normally if someone has MCAS, they will develop CIRS due to the inflammatory response of toxins, virus, trauma and medicines. MCAS prevents body breaking down/producing certain hormones, chemicals, enzymes and histamines.

Our country doesn’t offer the full testing to diagnose MCAS or CIRS properly—so most doctors don’t know what it is or how to treat it. You can’t put a patent on nature the treatments require a holistic and western approach, this condition effects so many aspects of your bodily function that its needs replenishment of the enzymes, microbiomes, mast cell stabilisers, nutrients and energy in order to heal and most western medicines aren’t designed for that.

I was put on a trial of medications, and for the first time in years, I felt a tiny shift—just enough to make me want to give life another shot. The sensations I’ve felt from the small glimmers of relief has been a gift, I know my future will be filled with gratitude and thats something I thank this journey for every day.

In the beginning I felt ashamed to ask for help but I’ve been pushed to build the courage, knowing this can help not only myself greatly but others by putting this story, knowledge, advocy and support out there. Nobody should have to go through these extents to be heard. I thank the pain that put me here only because it’ll be put to good use in the future, I wasn’t given this experience and second chance not to help others in similar circumstances. Validation, support and understanding can be enough to give one the strength to fight whatever battles they’re climbing. The new perspective I’ve gained over the last years of suffering fuels a fire to make a difference and I will action that gradually as I gain more capacity. 

How Your Donations Will Help Me

Every dollar raised will go directly towards my costs in:

✅ Prescribed Medications

✅ Appointments

✅ Safe, mould-free housing for a mimimum of 6 months whilst undergoing treatment

✅ Rehabilitation from the years of misdiagnosis and medical harm

✅ Food supply—organic, low-allergy food since I react to most store bought foods

Further details of the costs surrounding the appointment, medications and costs can be provided privately. I plan to return to some form of work as soon as I gain the capacity to do so and if there is any donations leftover at the time of being well enough to work, they will be sent to a non for profit detailed on this page. Please message if you’d like to know more about the condition, autoimmune conditions I have studied/misdiagnosis, how to understand what chemicals are in your food, costs involved in my treatment or are interested in joining to advocate and make a difference.

I will be updating everyone on my treatment and progress but haven’t decided which platform is best yet asside from a blog. I’ve read hundreds of studies, statistics and books on multiple autoimmune conditions, chronic illnesses and the health system. This is relative to everyone interested in their health and things I believe we should’ve learnt in school. This condition is mainly invisible to those that aren’t close to me, I can’t show it in a photo so I plan to tell mine and many others stories online.

I thank you all those that have supported, encouraged and believed in me, your patience in this chaos is cherished and appreciated more than you’ll every know.

Much love and thanks,

Elle