“You’re becoming hysterical,” the emergency doctor told me as I doubled over in pain. Hours later I would learn I had ovarian endometriomas the size of tumours.

For years I had been told my pain was normal.

We teach young girls that periods hurt. What we fail to teach them is the difference between discomfort and disability. Missing school every month, vomiting from pain, fainting or bleeding so heavily you can’t leave the house should never be considered normal.

When I got my first period at 14, I accepted the cramps, the leg pain, the shortness of breath, the nausea and the bleeding as normal. Even when I was missing school, stuck in bed and bleeding through ten pads a day, I still believed this was just part of being a woman. 

In 2022, I started to experience the worst cramps of my life, it was similar to when I had appendicitis. I was tested for allergies, diabetes, cancer and coeliac disease. Nothing stuck. 

It took over a year to receive a diagnosis. I had to quit my job and was taking copious amounts of time off university, requesting extension after extension while I was either in appointments or bedridden. 

Eventually, when I could no longer handle the pain, my GP sent me to an appointment for a pelvic ultrasound. I remember looking at the screen and seeing a number of growths on my ovaries. The technician told me these were endometriomas. I had an excessively thick uterine lining and it had to be removed as soon as possible. 

Endometriosis occurs when tissue similar to the lining of the uterus grows outside it, causing inflammation, scarring and organs to stick together. It affects around one in nine Australian women and people assigned female at birth by age 44, yet diagnosis still takes years on average.

Not long after the pelvic ultrasound, I had surgery (a laparoscopy) to remove excess tissue and the tumours on my ovaries. 

Over the next few weeks I learned to walk and eat properly again, as well as lift things without being in pain or afraid of ripping my stitches. What surprised me most wasn’t the pain. It was how quickly people expected me to return to normal once the surgery was over. 

Endometriosis isn’t cured by surgery. You recover from the operation but continue to live with the disease. I thought I would be able to walk unassisted within a few days but it took me a week. I couldn’t bathe myself or even go to the bathroom without help. Food also made me incredibly nauseous. I continued to get phantom pains for months afterwards and would bleed as if I was on my period for a month too. 

“She had tears in her eyes while she told me that she was sorry for everything I had been through.”

Six months on and I feel as if the surgery was a distant memory. But recovering from it gave me time to think about something that hurt almost as much as the disease itself: how difficult it had been to convince anyone that my pain existed. 

I only waited a year to receive care for my endometriosis, while it takes many women a decade. But still, the road to being heard was not an easy one. 

I had many doctors tell me I was the picture of health and there was nothing wrong. While I was having a breakdown in hospital because of the pain, one doctor told me that I needed to calm down and was becoming hysterical. Time after time, in the ER, I was told to go home and take Nurofen and Panadol until the pain wore off. 

Women are continually disbelieved in medical environments. We are told to grin and bear it while our male counterparts are more often treated immediately for lesser injuries. 

Being told that it’s anxiety causing your pain (rather than tumours the size of your fist) can make even the most self-assured person doubt themselves.

A few weeks before my surgery, I had a doctor at the RPA in Sydney tell me that my pain was real. She was an emergency gynaecologist and she had tears in her eyes while she told me that she was sorry for everything I had been through. Being told that someone believed me, it was like I could breathe again. 

I wish I could say that now, three years post-surgery, the pain is resolved. While medication has mitigated any growth, I had to go through multiple birth control options to find the one that worked for me. 

I found a new job in Sydney not long after surgery. It was a dream job, with amazing people where I could use my legal skills. I wish I could say that when my endometriosis flared again, my supervisor was understanding. I wish I could say that I was fully supported, accommodated for, and given the flexibility and compassion that should be shown to those battling chronic illness. Sadly this was not the case. 

Once again I was not believed. I had shifts taken from me as I was labelled ‘unpredictable’ and ‘unreliable’. It wasn’t until I sent private medical documents that some took me seriously. 

Endometriosis is not cancer, but it is a chronic inflammatory disease that can invade surrounding tissue, damage organs and cause debilitating pain. Its effects may be invisible to strangers, but they are life-changing for many of the people who live with it. It may not be well researched, well documented, well understood. It is quiet and terrible, slowly stripping you of autonomy and identity while you open yourself to constant prodding and poking by doctors, at work, everywhere. 

Chronic illness doesn’t just take your health. It quietly steals ordinary things you never imagined having to mourn: spontaneous weekends away, saying yes to plans without checking your symptoms, trusting your own body, or knowing you’ll be able to show up for work tomorrow. I spent a long time grieving the person I thought I would be before learning how to become someone new.