‘Like hot knives driven through your stomach’: Aussie reveals reality of living with endometriosis
An Aussie has exposed her boss’s shocking reaction after her body was found to be “riddled” with a horror disease that felt like “hot knives” being pushed into her.
“It’s like hot knives being driven through your stomach.”
That is how Ella Collings describes the pain of endometriosis, a pain she has been experiencing since she was 12 years old when she got her first period.
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.
For 24-year-old Ella, it took 10 years to be diagnosed with the disease.
Ten years of being told by doctors her pain was just IBS, anxiety or a “bad period”.
Ten years of being told to just go on the contraceptive pill to deal with her symptoms.
Ten years of days where she was unable to go to school or work because the pain was so unbearable she couldn’t even stand up.
Ten years of being told she was “being dramatic” and it’s “just what women have to go through”.
Medicare is failing women and it’s About Bloody Time things changed. Around 1 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
Even after being diagnosed, the Gold Coast local has continually had to deal with people minimising her pain.
Ella experienced losing two jobs due to having to take time off work to manage her symptoms or receive surgery.
“It got to the point where I couldn’t go to work and my employers weren’t seeing me as a reliable worker for them,” she told news.com.au.
She explained that these were office jobs, with the first being in 2018 prior to her diagnosis and at a time when she was really struggling with pain and trying to get answers.
She lost another job in 2020 shortly after her diagnosis, with Ella revealing her boss was “pretty rude and abrupt” about how he approached her.
He told Ella she was “taking way too much time off and not prioritising the company’s best interests”.
This was despite that time off due to her either being hospitalised or having surgery.
“They knew what was going on and knew I had endo but never were supportive, they just saw me as someone taking time off, not as someone suffering from a debilitating disease that was affecting my day to day life,” she said.
“I felt so unsupported and felt obligated to be at work even when I could barely get myself out of bed, let alone even drive, the pain would be so bad.”
Because endometriosis isn’t widely spoken about, Ella says it makes it a lot harder for other people to understand exactly what you are going through.
“Obviously, I don’t want to be known as a terrible employee, but it’s just such a debilitating disease that you just cannot control,” she said.
“Some days you’ll be fine. You can walk around and be, laughing, happy with your friends and going out and doing fun things and then the next day you’re bedridden for hours on end and crippling pain because you’re having an endo flare up.
“It’s definitely a crazy disease that is so debilitating and the pain it’s just nothing like I’ve ever experienced in my life. It’s just the worst pain, I can’t even describe it. It’s almost like hot knives being driven through your stomach.”
‘My body was riddled with it’
By the time Ella turned 20 it had reached the point where she was in pain 24/7 and decided to go back to the doctor and demand more answers.
After receiving abnormal pap smear results, she was finally referred to a gynaecologist who immediately diagnosed her with endometriosis and told Ella she “couldn’t believe” she had been dealing with the symptoms for so long.
She was booked in for a laparoscopy, surgery used to identify and remove endometriosis tissue, the very next week.
“I found out I was diagnosed with stage four endometriosis. She said it basically was everywhere. My body was just riddled with it,” the 24-year-old said, adding that the endometriosis had spread so far it was found on her bowel.
“It was a bit of a punch in the face really, because I tried for so long, going to emergency, going to hospitals and different doctors trying to get different perspectives and different opinions on it.
“I always got told the same thing. I was being dramatic. It was just a bad period pain, that’s normal. And obviously period pain is not normal. Being in pain is not normal.
“So it was really quite disheartening that after all this time the endometriosis was so bad, that if it was caught a little bit earlier on it would have been a little bit easier to manage.”
Since her diagnosis in 2020, Ella has undergone 10 surgeries to remove endometriosis because it keeps growing back so rapidly.
Because of her condition, she was always concerned about how her fertility could be impacted, but her requests for further testing were repeatedly shot down.
Doctors told her she was being “silly” and she was “so young” so there was nothing to worry about.
Eventually Ella decided to take matters into her own hands and sought out a fertility specialist, which is when she found out that her egg count was equivalent to that of a 56-year-old.
Ella was told that if she wanted to have children in the future, she needed to think about doing it soon.
Only newly with her partner and not yet ready to be a mother, she made the decision to go through two egg freezing rounds at the age of 21.
Since her diagnosis, Ella estimates she has spent over $100,000 on medications, egg freezing and other treatments in relation to her endometriosis.
Her advice to other women who may be struggling to get a diagnosis is to “keep being that annoying patient and keep pushing to get answers”.
The 24-year-old believes having a strong support group is also important, as endometriosis can feel very isolating at times.
“It is such a lonely disease. Not a lot of people know what you’re going through and as much as people try to understand it’s really hard to explain exactly what people go through because obviously endometriosis can lead to a lot of things like chronic pain, depression, anxiety,” she said.
“It’s the fear that you’re going to be in pain one minute and then you’re not in pain the next. It’s a constant, vicious cycle that you’re always in and it’s such a lonely thing.”
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.
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