'It takes all my energy to survive each day.' The reality of stage 3 endometriosis.

I’m 30 years old and I’ve lived nearly half my life in chronic pain.

From sickness and fainting when I had my period at 14 and having to take days off school, to having the wind taken out of me and falling helplessly to the side of the road after my regular swim at Coogee one afternoon.

Something has been growing inside of me, bit by bit, filling my insides for more than a decade, until eventually last year I just couldn’t function anymore.

My partner rushed me to emergency after it felt like somebody was cutting apart my stomach. Terrified, and with three shots of morphine failing to dampen the pain – I finally got a diagnosis of endometriosis.

Watch: The definition of Endometriosis and its symptoms. Post continues after video.

After a brief 'I knew it' moment, my heart was utterly crushed. I felt an overwhelming sadness. I’d seen my best friend debilitated by the same disease. Forced into isolation during COVID and unable to socialise or live her life.

The diagnosis felt like a pit in my stomach – knowing I’ll be dealing with this disease for the rest of my life.

"So what’s your baby plan?" the doctor asked me. Erm…. I don’t know! I’d only just got engaged and my priority was focusing on my production company and acting career before getting to all that.

But the luxury of time has been robbed from me – another thing taken by this debilitating disease.

Endometriosis affects one in nine people, assigned female at birth – chances are a person you love is suffering at the moment and many do so in silence.

I had surgery to remove my endometriosis in November last year. 

I was diagnosed with stage three – they found it scattered around my ovaries, on the back of my uterus and also on the top of my bowel. They had to take out a cyst growing in one of my ovaries too but the good news is my fallopian tubes were fine so hopefully I’ve got a good shot at having kids.

Unfortunately, despite the surgery my pain hasn’t gone away. 

I describe it to friends as being like a sore, infected toe – that stinging burn-infected feeling that you get – well I have that in my stomach and lower abdomen. I’ve got that all the time. Although since the surgery I’m no longer getting punches or waves of jagged stabbing pains.

Listen to The Quicky to learn more about endometriosis. Post continues after podcast.

I think when it comes to endometriosis there’s a lot of misunderstanding in the community. People dismiss it as bad period pain. Or friends start to think you’re socially lazy because you don’t want to interact as much anymore. It takes all my energy to survive each day and move through the pain when I have to, so when it comes to the end of the day I simply have nothing left to give anyone.

Endometriosis goes hand in hand with anxiety. You feel like you’re letting people down. I feel like I’ve failed myself.

I’m strong though. I’ve learnt how to carry the pain with me. I’ve managed to survive endometriosis, plan a wedding, work full time, finish studying as a teacher, audition for acting gigs and try to have a social life. I’m exhausted but I refuse to let this disease define me. And I am so grateful for all the support I have been given from everyone who has helped me at the Royal Hospital for Women in Sydney, that makes me one of the luckier ones.

My advice for others reading this is to listen to the women in your life. Don’t dismiss your young daughters if they come to you in pain. It’s important we change the dialogue around endometriosis and be able to listen and talk about it. If somebody is in pain – something is wrong. Help them get the help they need.

I urge you to consider making a donation to help fund more research into this disease. Consider a donation to www.royalwomen.org.au/endo to help a future generation of women get help sooner and to maybe one day have a cure.

Feature Image: Supplied.