After countless doctors appointments, six scans, three blood tests, four additional tests, and so many disappointing “everything looks normal” results, I was finally diagnosed with Stage 4 Endometriosis in August 2025 and had surgery in October, which was recorded and published by my amazing surgeon here (viewer discretion advised).
Endometriosis Awareness
Endometriosis doesn’t just affect your body, it touches every part of your life.
💛 1 in 7 women are diagnosed with Endo
💛 It can take on average 6.5 years to be diagnosed
💛 Endo affects over 1 million women in Australia
💛 1 in 6 women with endo lose their job due to managing the disease
💛 70% take unpaid time off work to manage symptoms
💛 Those affected often develop depression and/or anxiety
Living with Endometriosis
For as long as I can remember, I’ve had pain. Real, stop-you-in-your-tracks, lie on the floor in the fetal position pain. Painful periods that left me in tears. Random sharp pains throughout the month. Fatigue, anxiety, discomfort and more, that became part of my “normal.” I’d have to call in sick on day one of my period because it was just unbearable, or more often than not, just push through the pain and make it through the day. Going to the bathroom hurt and my body constantly felt off.
When Everything Changed
Truthfully, I didn’t even know what Endometriosis was until I started researching my symptoms after being hospitalised for severe pain in 2024. I genuinely thought I had a burst appendix, until doctors told me I had an ovarian cyst which "probably ruptured" and to "just go home and take Panadol".
I remember going home thinking, surely this can’t be normal. But for years, even women would tell me it was normal. That having cysts and this kind of pain was just part of being a woman. But it isn’t normal, and we shouldn’t accept this pain as our normal.
As I write this, I’m crying for my younger self, and for all the women out there who still don’t know about this condition. The ones who thought all this pain just came with the territory of having a uterus, or worse, are dismissed for it.
What Is Endometriosis?
Endometriosis (or Endo) is a chronic condition that occurs when tissue similar to the lining of the uterus grows outside it and in places it shouldn’t be. It most often affects the reproductive organs but it has been found in every part of the body, including the skin, joints, lungs and brain.
During the menstrual cycle, this tissue acts like it’s still inside the uterus, thickening and bleeding each month, but with nowhere to go. This then causes inflammation, scar tissue, adhesions and pain.
Endo is a lifelong, incurable condition that affects 1 in 7 females and those assigned female at birth in Australia, and this number is only increasing with more diagnosis' every day.
It still takes, on average, 6.5 years to be diagnosed, with surgical intervention taking even longer, especially for those without private health insurance. As a result, around 1 in 10 self-fund their surgery which costs thousands of dollars. Currently, the only way to confirm a diagnosis of endometriosis is to have a laparoscopy, although I was able to get a strong diagnosis through a very lengthy MRI and a specialist to recognise my symptoms.
Finally Finding Answers
During surgery, they confirmed I had an endometrioma (ovarian cyst) and that my ovary and bowel were both attached to my uterus. My abdominal wall had built a barrier around my ovary, and my right fallopian tube was so inflamed that conceiving from that side is almost impossible (no wonder I was in so much pain!).
Why I’m Sharing My Story
Endometriosis is significantly under-researched and under-funded, with major knowledge gaps in its causes and effective treatments. Australian research has identified that the cost of managing endometriosis is around $30,000 per year, per patient.
It can have devastating effects on women’s physical and emotional well-being, quality of life, and reproductive health, but it doesn’t have to stay that way.
I’m sharing my journey to help raise awareness (and funds!) for Endometriosis Australia, an organisation doing incredible work to:
- Fund much-needed research
- Reduce the time between symptoms and diagnosis
- Advocate for more specialised endo and pelvic pain clinics
- Raise awareness for the nearly 1 million people living with endometriosis so they feel less alone
Every donation, no matter how small, helps provide resources, push for earlier diagnosis, and fund research that could change lives.
If you’ve made it this far, thank you for taking the time to read, learn, and care. Together, we can make a difference, one conversation at a time.
Sources:
endometriosisaustralia.org
bmcmedicine.biomedcentral.com/articles/10.1186/s12916-023-02820-y
