In Spite of Pain
This blog is part education, part personal story - a space for me to reflect on my journey with endometriosis and share what I’ve learned along the way. I am living with chronic pain and am determined to increase the quality of my life as I’ve simply had enough. If you're navigating pain, confusion, or feeling unheard - this is for you. If you are wanting to learn more about Endometriosis – this is also for you.
Introduction: Why am I sharing this?
I’d like to preface that the experience shared in this is my lived experience, and the facts are my interpretations based off reading into endometriosis research available. Research is sadly 40-50 years behind; therefore insight is still limited. What I’ve shared is a small piece into a complex condition in which medical professionals are still trying to understand. This piece is a small glimpse into my experience and my recent reflections.
I am writing from my experience as a 24-year-old woman who has Endometriosis, Adenomyosis, Polycystic Ovary Syndrome (PCOS), and Premenstrual Dysphoric Disorder (PMDD). This piece will be focused on Endometriosis.
All of these have been diagnosed by medical professionals, though not having the easiest road to do so. I want to spread awareness and tell my story through this piece. I’m not asking for sympathy – I want my networks to be educated further and for other women to feel supported in understanding more about endometriosis, as society is still far behind. Every day, women face silent battles. They feel unheard, overlooked - and yet, they continue to show extraordinary strength as they navigate life while living with complex conditions like endometriosis.
Understanding Endometriosis: What I’ve Learned
Endometriosis is a disease where tissue similar to the lining of the uterus grows outside of it - on organs like the ovaries, bowel, and pelvis - causing chronic pain, inflammation, and sometimes infertility. Endometriosis is so often misunderstood. For years, it’s been boxed into a ‘women’s issue’ - something related to periods. But that definition barely scratches the surface. Endometriosis is a chronic, full-body inflammatory disease with immune system involvement. It affects everyone differently and shows up in ways that can’t be explained by cramps or painful periods. Because it’s invisible and symptoms vary widely, endometriosis is often missed or dismissed, even by healthcare professionals. It’s systemic, multifactorial, and heterogeneous - meaning there’s no one way it presents, and no single cause. These terms I am only learning recently upon my own research and reading.
What causes Endo? Thanks to a mix of genetics and epigenetics (the way our environment influences our genes), we’re living in a world where chronic illness is becoming more common. Environmental pollutants, dietary shifts, bacteria, inflammation, stress, poor sleep, and our overloaded chemical lifestyles are all part of the puzzle.
We’re exposed daily to endocrine-disrupting chemicals - like dioxins, phthalates, and BPA - which have been shown to interfere with hormone regulation. Research has found that people with endo tend to have higher levels of these toxins in their bodies. These substances may not just contribute to the growth of endometrial-like cells, but also play a role in driving immune dysfunction. Endo isn’t technically classified as an autoimmune disease, it is what’s called an autoimmune-associated disorder. That means it shares key characteristics with autoimmune conditions: chronic inflammation, immune dysfunction, and frequent crossover with other autoimmune diseases.
When learning this information (less than 2 weeks ago) myself, I felt angry and confused. I spiraled first, blaming myself for this condition, trying to make myself believe I could have stopped it. Then after researching more, I was reminded that it isn’t my fault. I am unlucky. All of the contributing factors have been out of my control (genetics, epigenetic programming, and early life exposures).
Recently, I’ve begun to implement little things to reduce my exposure to toxins, especially those with parabens and phthalates and I will aim to do this where I can in my life. I know this is easier said than done. These items are more expensive and harder to find. Thank gosh for ChatGPT to tell me which products are ‘Endo/PCOS friendly’. I have shifted my mindset to do what I can with the things I can control and starting there (e.g. skincare, cleaning products). I cannot control what has already happened inside my body to lead me to this point, but I can focus on the future. Whether or not this works in terms of regrowth, I’m unsure – but I am going to try.
The next thing I have properly understood recently is relating to diet. Now diet is a challenging one for me. I’m a fussy eater, I was raised on a limited range of foods, and I get overwhelmed every time I step into the kitchen. Hearing that diet is key to everything (not just relating to endo – but overall health benefits) is something I never accepted because it was too daunting for me. But now – 25 days post my first laparoscopy operation, I know that in order to stop living in chronic inflammation I need to do something about my diet, as many of the foods that I consume everyday are inflammatory.
Researching into the ‘perfect’ endo diet is still conflicting and ongoing, but one thing is clear: people with endo may need significantly more nutrients than the average person - sometimes up to 13 times than the average of certain vitamins and minerals just to meet their body’s daily needs. That’s because endometriosis is a chronic inflammatory disease that places a constant demand on the body - draining resources and creating a high-stress internal environment.
When I say that not one medical professional has ever told me that endo is a chronic inflammatory disease, I am being serious. I have truly only learnt that endo as an inflammatory condition in the last month and if I had known this a couple of years ago, I think I might be a tiny better placed than I am today. Yes of course, I’ve spent time googling what endo is and probably could have found the information specifying inflammation myself, but, when googling endometriosis, women, like myself become terrified as the word ‘infertility’ is plastered everywhere – causing immense anxiety. The concept of infertility became the whole focus for me thinking I’ll never be able to have babies. This thought still weighs heavily on my mind most days as having children is something I want in my life. If I had known that this disease was a whole-body inflammatory disease, I would have advocated for myself harder.
We put on a brave face and try not to complain. We show up, even when it feels like we can’t. Some of us have learnt to suppress the pain and forget it exists. I know for myself, I do this. And then when I get into bed each night and because I am not distracted by daily activities, I can feel the pain and the pain is so real.
One of the only things that brings me comfort is my heat pack. I use it every single day - tucked into my waistband, draped across my back, or curled up with it in bed. It’s become like a security blanket for me; I can’t travel without it. Whilst this is mechanism is helpful for me, it’s overuse has led to my lower back having discolouration. And yet, it’s something many people don’t see, just like the condition itself.
My Endometriosis Journey
Learning this information has been eye-opening and frustrating. I’ve felt angry at how little I knew, and heartbroken at how little women are told. But more than anything, it’s made me reflect deeply on my own journey with endometriosis - a journey filled with pain, confusion, and missed answers.
So, alongside the facts, I want to share my story. Because understanding endometriosis isn’t just about definitions and research, it’s about lived experience. Mine started long before I even had the language to name it.
My endometriosis journey started when I was young like most of us, although I didn’t know it at the time. From the moment I got my first period, I was always in pain. I had intense cramps and heavy bleeding to the point where I had to wear two pads and a tampon at once. I wouldn’t say my experience was normalized as such, because many of my friends openly didn’t experience what I was, nor did my mum. There was just not much information available at the time that could help me understand why I was experiencing such dramatic differences.
When I was 17, I decided that I needed to do something and was directed to get the IUD. Due to having migraines with aura myself and in the family, it was/is not safe for me to take the combined contraceptive pill due to the linkages to strokes (my mum had a mini stroke when she was younger due to this). I had the IUD in for 4 years, which did mask many of my symptoms for this time.
Growing up, I was really athletic. I loved sport and engaging in physical activity. But as I got older, my back and pelvic pain was getting worse. It slowly pushed me away from playing sport, which really sucked (still to this day). The pain was constant - waking up in the middle of the night with spasms, not being able to get back to sleep, no way to relieve it. That also still happens to this day, various times a week, regardless of where I am on my menstrual cycle.
When I was living in Darwin, I decided to see a new doctor and get the IUD removed (2023). I told her about my back pain and that I needed help with my hormones, as I couldn’t take the typical combined pill. So, I started the mini pill (progesterone-only) to help wean off the IUD. My period returned straight away - and it was just as bad, if not worse. A few months went by, and I was really struggling. I was so tired. I couldn’t work past 2pm, I’d fall asleep during car rides, and anywhere I could. Eventually a blood test showed I was severely iron deficient. Which is just another thing for us to worry about.
Whilst going through this process with the new doctor in 2023, I was diagnosed with PCOS (Polycystic Ovary Syndrome). I do have PCOS - but I immediately felt pigeonholed. Endometriosis was still not mentioned, despite the full back pain I was experiencing and telling numerous medical professionals over 5 years. I remember googling it one night and reading the symptoms and thinking this is it. Endo explained the daily back and pelvic pain… it matched everything I was experiencing. But because I'd been told I only had PCOS, I tried to convince myself it wasn’t endo – as I feared that being a reality. Eventually, someone told me back pain can be linked to PCOS, and I accepted that for a while.
Whilst I was living in Darwin, I decided to give basketball another try because I loved playing. I clearly remember one basketball final - I was in so much pain. I pushed through, but after going for an intercept and getting knocked, the shock of pain that went through my body made me sub off in tears – which is something I would never do because I don’t like people seeing me in pain. In hindsight, my body was entirely inflamed.
After that basketball game, I saw a physio again (I have seen over 5 different physios over the last few years) - trying to get to the bottom of my back issues. They finally ordered an MRI, and I was convinced they’d find something – a bulged disk, a damaged nerve, anything that would explain the pain I felt. When the MRI results came back, the physio looked me in the eye and said, “There’s nothing wrong with you.” I remember feeling shattered. Because when doctors and specialists keep telling you nothing is wrong, you start to question yourself. I got into the car after that appointment and immediately burst into tears, feeling like an idiot, once again.
This period of my life (mid-late 2023) was a turning point. During this time, I also had a phone appointment with a spiritual psychic I had been seeing for some years (believe what you wish in this context). The first thing she said to me was that she was sensing something in my lower stomach/pelvic region, telling me something wasn’t right. That was two years ago - and I only just had my laparoscopy three weeks ago. However, when she said that, it all clicked again. I knew it was endometriosis. People had told me it wasn’t. I’d tried to believe them. But deep down, I knew. And I knew I needed to continue to advocate for myself.
What’s often left out of my story are the countless dead ends I encountered over the years. I tried everything that was suggested to me - physiotherapists, osteopaths, chiropractors, naturopaths, counselling, pain medications. I focused on strengthening my back and core, hoping it would ease the pain, which it only made it worse. Time after time, nothing made a lasting difference. Each failed attempt chipped away at my hope and led me to give up, only to start the cycle again when desperation crept back in.
Living with endometriosis has taken a huge toll on my mental health. It’s not just physical, it affects my mood, my energy, and my ability to function day to day. Some days, even the simplest tasks feel overwhelming. It’s hard to stay motivated and positive when you’re constantly battling a pain that no one can see, and that so often goes misunderstood.
A year ago, I decided to come off all hormone related treatments and get to the cause of the issues. I spent 2024 working with a naturopath and doctors to hopefully get a diagnosis of endo. Late 2024 and I was finally on a clear road for a diagnosis of endo, I found a suitable doctor and after doing all the pre-tests (examination, bloods, x-rays) she mentioned that it’s likely I do have endo and she will perform the diagnosis laparoscopy . A laparoscopy is the only current way to get a definitive diagnosis of endometriosis, where they also remove the lesions if possible. I was scheduled to have the surgery in November last year (2024), but because I hadn’t had private health insurance for 12 months, my insurer declined. I could have attempted to go the public route, but we all know how long the waiting periods are, I decided to wait it out. This was obviously terrifying and yet again felt like another roadblock in the system. Every day I was thinking about this surgery, wishing I had it already. Scared that every day without the surgery, is more growth of endo, leading to increased risks and challenges.
Fast forward to now, I am 25 days post my first laparoscopy surgery (my first operation ever). This experience is still quite raw to me – and I open any advice of others who may have experienced similar. Going in I was feeling fine. I was honestly just eager to get in there and get it out, so I could start this process of healing.
When you’re about to go into surgery, a nurse will ask you what procedures you are getting done to verify. As I was laying in the holding room, completely dressed with the cannula in my arm, the nurse asked me what I was getting done and when I explained my procedures, she was awaiting me to say something else. I was confused and explained there was nothing else. She asked me if I was getting the IUD in. I said that I wasn’t because I did not want the IUD at this time and I remember telling my doctor that a few weeks prior. This was scary, because imagine if they didn’t ask me and I woke up with the IUD in without my knowledge.
After the surgery, I woke up and immediately burst into tears. Tears of relief. I wasn’t able to get my results for two-weeks due to lab testing, which was frustrating as I just wanted to start the process of moving on. I was awaiting this procedure for so long and those two weeks felt like the longest time. However, my healing from the surgery itself was fine I believe. The pain I was experiencing was no different to the back/hip/pelvic pain I felt every day. However, the last two weeks, my inflammation pain has been next level. The pain may be the strongest reason I was inspired to write this, share my story, and seek out my own answers.
My post-op appointment was frustrating. I don’t want to blame my doctor for anything, but there were things they did that made me feel unheard and just like another number. At the beginning of my appointment, they began answering calls and texts on their phone, leading to my increased anxiety as I am awaiting answers from the most significant health related thing in my life. Finally, they went through things, in very limited detail. I even asked for a copy of the reports so I could investigate myself when I got home – something women are fairly used to.
The outcome from the surgery was diagnosis and removal of Endometriosis, found in three regions, including the bowel. The doctor also advised me that I have Adenomyosis, which is when that same type of tissue (like endo) grows within the muscle wall of the uterus, leading to heavy, painful periods and bloating. The only definite cure of Adenomyosis is a hysterotomy (removal of the uterus). This itself is confronting and something that in the future I may have to do.
When addressing my options moving forward to manage, the doctor gave me an option of a drug called Zoladex. This works by suppressing the ovaries’ production of estrogen, which in turn can stop menstruation and slow down the growth of endometrial tissue. The most common side effects of Zoladex are similar to menopause symptoms. Reminder that my opinions and choices are my own based on what I think is best for my body right now. When she was explaining this to me, I burst into tears. Why would I at 24 years old want to experience menopause symptoms? I felt as though I was just another number and knowing I’ve expressed not wanting to engage with hormone therapy at this moment, no other advice was ever mentioned.
I left the appointment and cried the hour-long drive home, brainstorming what to do. The experience has extra inspired me to write this, spending the early hours of the AM when I have back spasms, reading, researching, and feeling empowered to take control of my body. I am determined more than ever to never require a laparoscopy again. I don’t want my endo to grow back. I’m going to do what I can to control the disease because I cannot live in this pain anymore. I want to be able to play sport and exercise again, I want to do pilates and maybe run a marathon, I want to show up as my true self in all my relationships, I want to sleep well, I don’t want unexplainable mood changes, the list goes on.
Also, before my surgery, I had to get a blood test done - which I completed. This time it cost me $95 because it was a comprehensive test, and one of the specific hormone tests wasn’t covered by Medicare. I also want to state my doctor did not go through these results with me. I sourced the results from this test myself through my health record online, and began asking ChatGPT for translations to what everything meant. I’m no doctor but I’m certain that there were a few things on that test that would have been helpful to know, including that I am currently borderline iron deficient again and my body isn’t storing iron as effective as it should be. It’s kind of funny how we become detectives, scientists, and researchers on our own – because we have to in order to get better.
The choices I make around food, movement, stress, sleep, and chemical exposure can either reduce or worsen inflammation. My daily habits can impact my nervous system, hormonal balance, gut microbiome, and overall health in real ways. I’ve read many case studies from women who took a holistic approach following their surgeries and went into remission or regression. I really want to be one of those women! Until then, I will keep showing up with my heat pack strapped to my body and my determination still burning stronger than the pain.
There’s probably lots of details I’ve missed when writing this, and it’s likely it will come to me after I post it. But I want to create this space to share more information and stories, not just from myself but from others too.
For any women reading who may relate to my experiences, just a reminder; you’re not making this up. We aren’t choosing to be in pain. We aren’t choosing to not live our lives to the fullest. We are strong human beings that with the support of one another, and society, can learn to live with this disease with more knowledge and control.