Hi, my name is Lilly and I live with endometriosis. And while endometriosis is apart of my story, it does not define me. Through this blog, I share the painful, messy and sometimes hopeful reality of living with this chronic illness. By speaking honestly about both the struggles and the small victories, I hope to bring light to the dark and remind others that they are never alone in this fight.
Every day is a fight. Not just against the pain, the bleeding, and the exhaustion, but against being dismissed. Against being told it is nothing. Against feeling invisible when I know something is wrong. I do not have all the answers. I am not here to pretend I know it all. I am here to tell the truth. To share what this disease really feels like in a body and in a life. I am writing because I do not want anyone else to feel as alone as I have. If you are struggling too, I want you to know you are seen. You are not imagining it. You are not weak. And you are not alone.
The bags are packed. Everything is ready. Tomorrow morning, I leave for Brisbane.
This weekend the pain has been relentless, each wave crashing over me like a cruel reminder of why this surgery is so necessary. My body is exhausted, my mind stretched thin, and now the nerves have begun to creep in. They catch me in the quiet moments, dragging myself through the shops to make sure I have everything I need, zipping up the last bag, double checking the paperwork, sitting still long enough to feel the weight of what’s coming.
This stage of waiting is emotional. The mix of fear and hope sits heavy on my chest. There are tears close to the surface, not from weakness but from the reality of walking into another operating room. The last one gave me two years of life I never thought I’d get back, and I am holding onto that memory with everything I have.
Tonight, I am breathing through the nerves and clinging to hope. Tomorrow begins the next step of this journey. I don’t know exactly what the outcome will be, but I know this: I am ready.
Each day feels like a lifetime, but the finish line is finally in sight.
September 23rd. Brisbane.
That date has become everything to me. My anchor, my finish line, my lifeline. Every time the pain feels unbearable, every time the bleeding drains the strength out of me, I whisper it like a mantra: just make it to the 23rd.
Waiting is its own kind of torture. I wake up each morning and wonder how much longer I can push through. I drag my body through another day knowing relief is close, yet still out of reach. I fear what the surgeons might find, and I hold a fragile hope that this operation could give me more than another short window of peace.
I am not naive. I know there is no quick fix and there are no guarantees. But I also remember what it felt like to live two years without constant agony. Two years where I felt like myself again. I am holding on to the belief that I can have that back.
This waiting room of life, stuck between unbearable pain and the hope of healing, is one of the hardest places I have ever been. But I keep reminding myself that the days are ticking down. The 23rd is coming. Help is coming.
This week, I have also been reminded of the love and support that still surrounds me. My mum came and stayed the night, and then spent the day with me. Those hours together brought me comfort I didn’t realise how much I needed. Sitting with her, talking, just being in her presence grounded me and gave me strength to keep going.
I also connected with Joanne Lincolne today, a holistic health coach who specialises in endometriosis. She has lived through this battle too, and she understands the frustration, the confusion, and the pain in a way only someone who has walked this road can.
Over the next 10 months, Jo will walk alongside me, helping me listen to my body in new ways and guiding me to find tools and strategies that will support my healing after surgery. For the first time in a long time, I feel like I don’t have to carry this weight alone.
When that day arrives, I will walk into the operating room carrying not just my pain, but also the strength I have borrowed from others who understand — and the love of those who stand beside me.
I am not alone. You are not alone. We are counting down together.
As a chiropractic assistant, I get to be part of something meaningful. On the surface it might look like just admin work, but to me it is so much more. I get to support people, to be part of their care, and to work alongside a team who feels like family. My colleagues are kind, supportive, and genuinely amazing. For the first time in years, I woke up wanting to go to work, excited to be part of such an incredible team.
And now I have had to step back.
Endometriosis has made even the simplest days feel impossible. I tried to push through the pain, the bleeding, the dizziness, the exhaustion. I worked shifts with a heat pack under my desk, pretending I was fine while my body screamed for rest. I held on as long as I could, but my body finally gave me no choice.
Stepping back feels like losing something more than hours or paychecks. It feels like losing a piece of myself. This job gave me joy. It gave me purpose. And to have endometriosis interrupt that feels cruel.
Yet even in this, I am beyond grateful. I am lucky to have such a supportive workplace that not only understands but truly sees what I am going through. They are genuinely concerned about how I am doing, and they continue to cheer me on from the sidelines as I fight to get better. That kind of support is rare, and I do not take it for granted.
I keep reminding myself this is not forever. I have surgery ahead of me, and with it, the hope of relief. I am holding on to the thought of returning to the clinic, to the people who make every day brighter, to the job that finally reminded me what it feels like to love what you do.
This break is painful, but it is not the end. Endometriosis may have forced me to pause, but it has not taken away my determination. Choosing rest is not a weakness. It is survival. And survival is strength.
To my workplace, thank you for seeing me, for supporting me, and for standing by me through this. Your compassion means more than I can ever say.
I thought the hardest part would be the excruciating pain, the excessive bleeding, the mysterious mass that no one seemed to take seriously, and the endless waiting for surgery. But now, on top of all of that, my body has decided to throw one more challenge at me: a chest infection.
It feels like the cruelest timing. My body is already so weak, so worn down, so vulnerable to any infection, and this is the last thing I need with my surgery only days away. Every cough rattles my ribs, every breath feels heavier than it should, and the fear creeps in: what if this pushes my surgery back? What if the 23rd of September, the date I have been clinging to as my lifeline, is suddenly out of reach?
I have been holding on by a thread, telling myself: just make it to Brisbane. Just make it to the 23rd. That is when help comes. That is when relief might finally be mine. To imagine that being delayed, even for a little while, feels unbearable.
What makes it harder is that my body cannot seem to take in the things it needs to heal. I cannot keep many fluids down. Last night I tried to eat one sausage, desperate to give my body something it could use, and I threw it up instantly. It feels like a betrayal to feed myself and have my body reject it so violently.
So here I am, in excruciating pain, dizzy all the time, exhausted, broken, and now struggling to breathe under the weight of this chest infection. My body feels like it is failing me from every angle: crippling pain, excessive bleeding, constant nausea, the lump that I am still waiting for results for, and lungs that ache with every breath. It is the last thing I need, the last obstacle I wanted, and yet it is here, demanding more strength from a body that feels like it has nothing left to give.
It is exhausting, this constant war with my own body. Some days it feels like I am being tested beyond what I can endure. But even in the darkest moments, I remind myself that I have survived every flare, every dismissal, every setback so far. And I will survive this too.
The surgery is close. Relief is close. And until then, I will keep holding on, not just for myself, but for everyone who has ever felt invisible in their pain. We are not weak. We are not alone. We are still here, still fighting. And that means something.
Today I saw my GP for the first time since he told me to go straight to the hospital. I felt like someone was as frustrated as I am. He was furious with the hospital for discharging me without doing the ultrasound he had requested for them to do in his letter that he gave me when he told me to go straight to the hospital. He knew something was wrong, and they ignored him. They ignored me.
But today, finally, I got the ultrasound. And what they found both scared me and validated everything I have been feeling. A mass. Quite a big one. Solid and vascular. Hearing those words was like having the floor drop out from under me, but also like a cruel confirmation, I was right to know that my body wasn’t okay, that this wasn’t just “nothing.”
Since then, I have barely moved. I fell asleep around 2:30 in the afternoon and didn’t wake up for hours. My body feels heavy, drained, broken down from the constant fight. Now I am curled up on my couch, sipping water slowly, trying not to throw it back up. My stomach turns, my body aches, and every breath feels weighted with exhaustion.
And through it all, I keep fighting the urge to cry. Because I know once I start, I won’t be able to stop. The grief, the fear, the frustration, the loneliness… it would all pour out at once. So instead I just lie here, holding it in, because sometimes that feels like the only way to keep moving forward.
I keep telling myself the same thing over and over again: surgery isn’t far. Help is on the way. It’s the only thread I have to cling to right now. September 23rd feels both too close and too far, but it is the light I keep looking toward. The same surgeon who once gave me two years of pain free life will be the one to operate again. I pray, with everything I have left, that he can give me that relief again… maybe even more this time.
Until then, I am stuck in this in-between place. A place where my body screams and the system shrugs. A place where I am both seen and unseen, believed and dismissed. It is exhausting beyond words.
But I am still here. Still fighting. Still writing. And still holding on to hope, no matter how fragile it feels.
In the past few weeks, I have been admitted to hospital twice. For days at a time. And both times, I left with no answers.
I was having fevers with a body temperature dropping to 30.5. My blood pressure fell to 90 over 53. My body was telling me something was deeply wrong. I could feel it. The nurse even asked me if my blood pressure was normally this low, and I told her honestly. No, never. I’ve never seen numbers like 90/53 in my life. She nodded, almost absentmindedly, and then left the room. No follow-up questions, no reassurance, no explanation. Just silence. And in that silence, I felt invisible.
But outside those hospital walls, people were worried. My GP felt the lump in my lower left quadrant and told me to go straight back to the hospital. He even wrote a letter asking them to investigate and do an ultrasound. Even my chiropractors were concerned. They could see the pain written all over me. They could tell I was not myself. They knew something was wrong.
And still, when I got to the hospital, none of that mattered. No ultrasound. No real explanation. Just a quick dismissal and another discharge.
So now I am back to my GP, asking him to order the ultrasound and run more tests. At the very least, I want to have more information to take to my surgeon when I go in for surgery.
That surgery is booked for the 23rd of September in Brisbane, with the same specialist who gave me two years of pain free life after my last operation. I can only hope he can do the same again, or maybe even give me more years of relief this time. The waiting has been one of the hardest parts. Every day has been agony, trying to manage the pain and the bleeding until I can finally get back to Brisbane to get the help I need.
So here I am. A young woman, bleeding heavily, dizzy, nauseous, weak, and scared. And still the system finds a way to look past me. Still they tell me it is nothing.
Because when your blood pressure sinks to 90 over 53, when your temperature crashes to 30.5, when there is a lump sitting in your abdomen that no one bothers to investigate, you start to question everything. You start to wonder if your life, your body, your suffering, is invisible to the people meant to help you.
The physical pain is constant, yes. But the emotional pain of being dismissed, of being treated like you do not know your own body, that pain cuts even deeper.
I do not share this for pity. I share it because this is the reality of living with endometriosis. It is not just the bleeding, the cramping, the exhaustion. It is the constant fight to be taken seriously. It is the way we are forced to beg for answers while our bodies scream louder than we ever could.
I will keep fighting, not just for myself but for every person who has ever been told their pain was nothing.
If you are one of them, please know this: you are not alone. The
I wish I had known that pain this strong was not normal. I wish I had known that bleeding through pads at school, doubled over in bathrooms, crying in silence, was not just “part of being a girl.” I wish I had known that the words “just period pain” would echo through so many years of my life, dismissing something far more serious.
At 25, I am still learning. I am learning to fight for myself when doctors look past me. I am learning that I am not dramatic for knowing my own body. I am learning that silence only makes this journey lonelier, and that speaking out gives back a little bit of power.
This blog is not about having all the answers. It is about telling the truth. The raw, messy, unfiltered truth of living with endometriosis. It is about shedding light on a disease that hides too easily in the shadows.
If you are reading this and you have felt dismissed, invisible, or alone in your pain, I want you to know what I wish I had known back then. You are not alone. And you never were.
The War Inside My Womb 