Doctors Kept Misdiagnosing This Woman's Endometriosis as 'Bad Period Pain'

Karlie Wilkinson

Endometriosis, or when the lining of the uterus grows outside of the uterus, affects around 10 percent of American women, and often causes them extreme painful and life-inhibiting symptoms. But due to a lack of understanding, research, and the fact that endo cells can't be caught with medical imaging, it takes an average of 10 years for a woman to be properly diagnosed. Obviously, this can be extremely frustrating for many of these women with endo. One formerly misdiagnosed woman just successfully called upon the Australian government to create the first and unprecedented National Action Plan for Endometriosis.

  • Up until just two years ago when she was 19 years old, Karlie Wilkinson's endometriosis was constantly misdiagnosed by doctors as "bad period pain" or having a "bad diet."

    She suffered from intensely painful cramps and pregnancy-like symptoms, such as morning sickness, and sometimes would bleed for a whole month. She was admitted into the emergency room, and was administered various tests, like x-rays and ultrasounds, but doctors continued to write her off, sometimes going so far as to saying it's all just in her head. 

    "I would cry to my mum, but she didn’t really know what to do because the doctors kept saying I was fine," Wilkinson told Metro. "It felt like no one ever believed me and they dismissed me as a teenage drama queen with period pain."

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  • Wilkinson's proper diagnosis was "completely by accident," and happened when she was about to have an appendectomy, or surgery for appendicitis.

    "I instantly googled it and went into a huge panic," she said. "It was saying I could become infertile."

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  • Since then, she's been receiving frequent keyhole surgery to help remove her cysts, which could cause her organs to fuse together.

    But she calls that a "band-aid" treatment, since it's only a temporary solution. She'll need to undergo this treatment every year since theres no known cure for endometriosis. 

    These regular treatments are costly, and are out-of-pocket. But they're only added to the long list of medical bills that women rack up just trying to find out what their diagnosis is. 

  • "I realized that there must be other women out there suffering as well," she said. "I knew I had to do something."

    "I also think that it's taken this long because it's perceived as a 'women's issue' and if it was affecting both men and women, I'm sure something would have been done by now," she said. "I want it to be easier for women to get answers and not be misdiagnosed so many times."

    So she started an online petition for Australian health officials to recognize endometriosis as a real illness. 

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    "Provide more support to those of us who are torturing ourselves everyday by pushing through the pain," her petition on said. "Please provide more funding to find a preventive treatment/cure. We need your help. We need funding and education so that we get the support and medical care that we deserve."

  • In just three weeks, her petition became extremely successful, ending up with over 111,000 supporters and getting an official response from Australia's Health Minister Greg Hunt.

    In his reply, Hunt announced the action plan dedicated to endometriosis support, promising $160,000 in government funds for research and saying that the illness will be added to next year's Women's Health Week. "We will work with the medical community and key stakeholders to look into what gaps might be present in training, support, and care," Hunt said.

    Wilkinson wrote that she "couldn't be happier right now" with the government's response, calling it "an awesome step," and one that others should take note of.