Woman, 22, left bedbound by endometriosis dismissed as ‘bad diet’ forces health bosses to admit condition is real
A 22-year-old left bedbound by endometriosis which doctors dismissed as ‘bad diet’ has forced top health bosses to admit the chronic condition is real.
Karlie Wilkinson was diagnosed with endometriosis aged 19 after suffering from unbearable chronic pain, intense abdominal cramping and pregnancy-like symptoms such as morning sickness, bloating and a heightened sense of smell.
The debilitating disorder affects one in 10 women and causes the layer of tissue that normally covers the inner uterus to grow in other places – leaving some sufferers infertile.
As a teenager Karlie visited numerous doctors but claimed her symptoms were dismissed as ‘bad period pain’, ‘appendicitis’, ‘a bad diet’ and even that it was all in her head.
Now, after her online petition racked up more than 110,000 signatures, the young woman has successfully made Australia’s medical community recognise the condition as a real illness.
Karlie said: “I had no idea what was wrong with me but I was in ridiculous pain all the time and would sometimes bleed for a whole month.
“I would cry to my mum, but she didn’t really know what to do because the doctors kept saying I was fine.
“It felt like no one ever believed me and they dismissed me as a teenage drama queen with period pain.
“As I got older, it became so unbearable I ended up in the emergency room at least five times.
“They would do different tests, ultrasounds and x-rays but they all came back normal and they said it was all in my head.
“Then they said it might be my appendix and sent me home with painkillers.
“There was even a couple of times that they seemed to make a joke out of it and I thought ‘if only you could feel what was happening to me right now’.
“The word endometriosis was never mentioned, and I don’t think they even knew what it was, but even when you do a quick google search on my symptoms, it’s the first thing that comes up.”
Karlie said she came across the condition ‘completely by accident’ after she saw a specialist who agreed to perform an appendectomy under general anaesthetic.
But when the young woman awoke from surgery she was told she still had her appendix and that she was actually suffering from a far more sinister condition called endometriosis.
Karlie said: “I was just shocked – I said, ‘I’ve got what?’. I had no idea what on earth it was.
“My mum was really worried, and the doctor referred me to a gynecologist as he didn’t have expertise on it and couldn’t elaborate on it further.
“I instantly googled it and went into a huge panic. It was saying I could become infertile.
“I was only 19 at the time and wasn’t even thinking about children or the future, but I realised it could all be taken away from me.”
Now Karlie’s only option to reduce her symptoms is laparoscopic or ‘keyhole’ surgery, where thin telescopic tubes are inserted into the abdomen through small incisions, so that her endometriotic cysts could be removed and surgeons could stop her organs from fusing together.
But Karlie said that this is simply a ‘band-aid’ treatment and she is forced to undergo this procedure every 6-12 months to keep her symptoms at bay until there is a cure.
She decided to launch an online petition after claiming her condition was ‘ignored’ by doctors and not recognised as a real illness in Australia.
Since the campaign was launched last month, it has garnered an incredible 110,000 signatures.
And now Federal Health Minister Greg Hunt has officially responded to her campaign with a promise to formally recognise the condition as a real illness.
Karlie said: “I was lying in bed one night, looking up at the ceiling trying to forget about my extreme pain and just thought – why do I have to live like this?
“I was so sick of people telling me there was nothing wrong and to take a painkiller.
“Even after I had been diagnosed I went to a female GP and told her about my condition and she said, ‘no it can’t be that, it must be something wrong with your diet’.
“I realised that there must be other women out there suffering as well. I knew I had to do something.
“It’s incredibly hard living with an invisible illness because people can’t see that you’re in pain.
“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.
“I want it to be easier for women to get answers and not be misdiagnosed so many times.
“It took me years to be properly diagnosed and that is so dangerous because the longer you leave it, the more likely you are to become infertile.”
In an official response to Karlie’s campaign, Minister Hunt said: “The plan will focus on how to improve the lives of women who face this terrible condition.
“Diagnosis of the condition currently takes on average around eight to nine years, placing a significant toll on individuals, families and the community.
“This condition should have been better acknowledged and acted upon long ago but today we are taking action so the struggle that women face will no longer be silent or their battles private.”
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