The One in 10 Project: What it’s like to live with chronic pelvic pain

13 October 2022
By Fashion Quarterly

Just three weeks after surgery to remove stage four endometriosis, 25-year-old Edie Carrie shares her story.

Edie Carrie. Photography: Stephen Tilley.

If you were to pass Edie Carrie on the street, it would be impossible to tell that the upbeat 25-year-old had, just three weeks ago, undergone surgery to remove extensive stage-four endometriosis from her ovaries, bowel, the lining of her abdomen and pouch of Douglas — the small area between the rectum and the uterus.

Edie’s endometriosis journey is one-of-a-kind, but heartbreakingly, there’s a common thread that entwines her story with those of other endometriosis sufferers. Despite Edie’s mum, who was diagnosed with endometriosis just a few years ago, her aunt, and other family members suffering from severe period pain and heavy bleeding, it wasn’t something that the women in Edie’s family discussed.

“I just thought it was normal; no one spoke about it,” Edie says. “I recall thinking, all of the women in our [family] have heavy, painful periods from time to time; it’s just something we have to deal with.” Despite frequently flooding her bedsheets and clothing due to ‘torrential’ bleeding, Edie kept quiet.

“I felt ashamed of it,” Edie says, while admitting she would often find herself in debilitating pain and struggling with the mental anguish that endometriosis caused her: “Everyone else had normal periods. Why couldn’t I control the bleeding? Why couldn’t I keep it together?” At times, Edie even convinced herself that she was overreacting or that what she was going through was all in her head. “I just suffered in silence for quite a while and soldiered on because I felt like that was what I was meant to do,” she says.

After a while, Edie was able to open up to her aunt — a fellow endometriosis sufferer — who encouraged her to push for answers and a diagnosis. “There’s this cultural taboo that’s stuck since the beginning of time,” Edie says. “But it’s OK to talk about blood, periods, and pain. And when you do, you’ll probably find that someone you know has a similar experience. We need to start vocalising the issue more. The more I spoke about it, the more comfortable I got. It’s something we need to get more comfortable talking about. It’s part of being human.”

Watch Edie talk about her journey and experience with endometriosis below.

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