‘Feels like someone is pouring acid into you’: Aussies reveal what endometriosis feels like

It’s a condition that’s as common as diabetes and can leave people in “life destroying” pain. Yet too many Aussies still feel forced to keep it a secret.

As you read this, there are almost a million Australians living with a disease that can cause pain so excruciating they are left unable to move.

And, because it takes on average seven years just to get a diagnosis for this disease, many more are thought to be suffering in silence.

Endometriosis is a condition where tissue similar to that which normally lines the uterus grows in other parts of the body, usually the pelvic region.

It is a chronic condition and, while there are treatments available to help patients manage the disease, there is currently no cure.

The disease can manifest in different ways for different people, but common symptoms include extremely painful periods, bloating, back and leg pain, infertility, excessive bleeding, pain during sex, depression and anxiety.

As part of the About Bloody Time campaign, news.com.au surveyed more than 1700 people who suffer from endometriosis to gather insights into how it affects their lives.

Of those surveyed, just under 90 per cent reported suffering from painful periods, the next most common symptoms were bloating, back pain and fatigue.

Even the lowest reported symptom, infertility, was experienced by 40 per cent of respondents.

These are just some of the long list of symptoms endometriosis sufferers can face, which highlights the multiple challenges people face concurrently and the complexity of the illness.

We asked Australians to describe what it feels like to live with endometriosis.

This is what they said.

Ella Collings told news.com.au the pain was like having ‘hot knives driven through your stomach’. Picture: Ella Collings/TikTok

Chloe Jackson’s first period was so painful that she knew it couldn’t be normal. Picture: Chloe Jackson/TikTok

‘LIKE BEING REPEATEDLY STABBED’

“It is like someone has stabbed your lower back with a giant knife and they twist, and twist, and twist the knife to the point that you can’t stand or walk, but then no one believes you.”

“A constant throb in my lower back, punctuated by intense pain that feels like broken glass in my pelvis, accompanied by pain radiating down my thighs. Prior to my most recent surgery, I also experienced a pulling sensation when I stood up of a morning – surgeons later found my bowel was adhered to my abdominal wall.”

“Having your insides gnashed by a wild dog.”

“A burn from a hot stove but inside you. It’s as if my ovaries are being squeezed by a grovelling businessman with an overenthusiastic handshake whilst simultaneously being kicked in the backside.”

“A rippling burning sensation. Feel like my insides are on fire and throw in the sensation of someone stabbing me with a knife.”

“Someone is trying to scoop out your insides with an ice cream scoop.”

‘WORSE THAN CHILDBIRTH’

“A hot fire poker in my abdomen, pain worse than child birth, nausea and pain.”

“Giving birth and root canal rolled into one.”

“I’ve had an induced birth, a caesarean, and gallstones. Endometriosis is more painful. It is constant, the pain and pressure is exhausting, and we still need to ‘get on with it’.”

“Like being in labour, but without the waves and no break in between. Constant stabbing pains, feeling like your insides are burning.”

“Like I’m having my insides pulverised while it’s being pulled out through my back, my bowel feels like it’s going to fall out, it’s worse than giving birth. Which I have done twice with no pain relief.”

‘YOU THINK YOU’RE GOING TO DIE’

“Absolute HELL! When in the pain, you think you’re going to die because the pain is so bad. You can’t move, can’t talk. You just have to concentrate on breathing in hopes that breathing like your in labour will provide a few seconds of relief. After the pain you are so exhausted you can’t do anything but sleep.”

“Like someone is pouring acid into your belly and it is eating away at your insides down to your bones.”

“Horrible, deep aches and sharp stabbing, aches through my legs, makes me weak in the knees so I can’t walk. Have wished I would die just to make the pains go away.”

“It feels like you’re about to die and having a heart attack but in your abdomen and getting stabbed.”

“All-consuming. It’s like the bottom half of my body is someone else’s- because when it’s not there I live a completely different existence.”

‘IF I MOVE I’LL VOMIT’

“Crippling. Can’t get out of bed, can’t stop throwing up, it takes over everything.”

“My insides, ovaries were being squeezed in a vice, causing vomiting and nausea. Fear, worry Every month when I might faint from pain, lose my job and home.”

“For me, it feels like somebody is cutting open your uterus, fallopian tubes and ovaries with a hot and rusty metal saw that is blunt and broken. There is also another deep pain that feels like someone is removing an organ without anaesthesia which makes me collapse and the pain level is 1000/10 – it hurts so much that I’ve vomited and passed out from the pain.”

“Nothing stops the pain. It’s relentless and gives me migraines, vomiting and I cant even walk. Its like being hit by a truck constantly.”

‘LIFE DESTROYING’

“Debilitating, disabling life destroying. There is no quality of life there are no good days only slightly less worse bad days.”

“Excruciating, life limiting. Think about the worst pain you have ever had and times it by 100, every third day for between three hours and 10 hours.”

“Debilitating, soul-crushing, my body is giving up.”

“Imagine you literally fear being intimate with the person you love the most in the world because the pain you experience afterwards is so traumatic. Every period you have is the worst one you’ve ever experienced; taking double the dosage of the prescribed amount of painkillers doesn’t stop the pain.”

“Unbearable. It feels like your body will never feel normal and I no longer remember what it feels like to not be in pain.”

Medicare is failing women and it’s About Bloody Time things changed. Around one million suffer from endometriosis. There is no cure. Help is hard to come by and in rural or regional areas, it’s virtually impossible. We are campaigning for longer, Medicare-funded consultations for endometriosis diagnosis and treatment. Read more about the campaign and sign the petition here

About Bloody Time is an editorial campaign by news.com.au that been developed in collaboration with scientists recommended by the Australian Science Media Centre, and with the support of a grant from the Walkley Foundation’s META Public Interest Journalism fund.