These Women Are Spending Thousands To Manage Their Endometriosis
More than 700,000 Australians are living with endometriosis. Cells similar to those that line the uterus are growing in other parts of their bodies, usually around the pelvis, and sometimes in tissues and organs outside it. The disease can lead to debilitating long-term chronic pain, compromised fertility and sexual dysfunction.
“We really hope that any recommendations by the [MBS] review committee won’t incur extra costs for endo patients,” Freedman told BuzzFeed News. It took a decade of pain and an emergency surgery before Melbourne lawyer Gemma Cafarella was finally diagnosed with a condition she long believed she had. Cafarella sees her GP on average once a month, a private gynaecologist multiple times a year and a range of private specialists to treat complications caused by her endometriosis.
When Cafarella sought a second opinion from another urologist, she was told she needed $1,500 worth of treatment for interstitial cystitis, a chronic bladder condition.She does not have private health insurance and believes in universal healthcare. Cafarella has also been referred to a psychologist who specialises in assisting clients dealing with chronic pain.As a lawyer, Cafarella doesn’t have much say over when she has to be in court.
“My first laparoscopy took six hours and [my surgeon] said it was one of the worst cases he’d ever seen,” the now 39-year-old told BuzzFeed News. “That was my first of four laparoscopies.” “Luckily with private health insurance, most of what I’ve had to spend has been covered, but that is $400 for my partner and me until we removed pregnancy from our cover, and now it is $300 a month,” she said.
“Then eventually not only was I having pain associated with my period but I was having pain all day, every day and I was getting really bad migraines and restless leg syndrome and stomach problems,” the 31-year-old told BuzzFeed News. “I felt generally awful and I would do my best to carry on when I was at work and go to the gym.
“I can pick up the phone or send a text message and say ‘hey I’m having a really terrible day’ and they understand,” she said. “I am lucky in that I have support in those girls that I haven’t reached out to a professional.”“My symptoms started with my first period, the day before my 13th birthday,” the 24-year-old told BuzzFeed News.
“I then had two more surgeries because nothing was getting better, and then one of my [IUDs] came out, which was a whole thing,” she said. “That took ages to get sorted because I kept going to emergency departments and they kept telling me I probably had chlamydia.” Dunlevie’s internal ultrasounds are $400 each and her bone scans are out of pocket, which aren’t covered by Medicare for younger patients without arthritis. A cream for pelvic pain is about $200, with no rebate.“I know I’ve gone to work when I definitely don’t feel well enough to be there, because the cost is too much to miss out on.”“Everyone told me it was part of being a woman and I needed to get used to it and take painkillers,” the 26-year-old told BuzzFeed News.
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