The condition women are suffering in silence
QUEENSLAND women suffering from endometriosis are waiting up to a year to see a specialist and even longer to have surgery, leading some to fear they may become infertile, The Courier-Mail can reveal.
Revelations of the shocking waiting times come amid horror stories of women having their appendix removed due to doctors falsely believing it was the source of their debilitating pain.
Endometriosis is a condition in which cells similar to those that line the uterus - the endometrium - grow outside the uterus.
Queensland Health data shows that for the most recent reporting period, April to June, one in 10 women were waiting longer than the clinically recommended timeframe to see a gynaecologist: 37 days for category-one patients, 112 days for category-two and 362 days for category-three.
In 2016-17 there were 1359 admissions to public hospitals across Queensland with the principal diagnosis of endometriosis.
Gold Coast woman Stephanie Brankin has been waiting for two years for surgery to treat her endometriosis.
The 24-year-old fears if she has to wait any longer she will be left infertile.
"There's nothing I can do but wait," she said.
"I'm in constant pain and it's affecting my life… including my mental health."
Mr Brankin said she had been fired from several jobs for having taken too much time off work due to her condition.
"My current employer is understanding, which is great, but I'm really worried the longer this goes the less likely I'll be able to have children," she said.
Endometriosis is the leading cause of infertility among women, and it is estimated that one in 10 women suffer from the condition.
Endometriosis Queensland says the public system is so overwhelmed it is common for sufferers to not receive timely care.
President Jessica Taylor is calling on the State Government to introduce a schools education program to educate young women on what is and isn't normal.
On average, it takes between seven to 10 years for a woman or girl suffering endometriosis to be diagnosed but Ms Taylor said if high school students were educated about the symptoms they could get help earlier.
"It common for women who've got endo and go through the public system to be bounced around, the public (system) is just so full and it's not resourced to support endo patients," she said.
Part of the Federal Government's Endometriosis Action Plan includes states and territories introducing an education programs into schools.
But a Queensland Education Department spokesman said there were no plans to roll the program out because it was up to principals, in consultation with their school community, make decisions about which programs best supported students.
"As is the case with all external organisations, QENDO has been encouraged to contact schools directly regarding their program," he said.
"It is primarily up to parents and carers to educate children about sexuality and relationships, including personal health aspects such as menstruation and menstrual health."
Gynaecologist and pelvic pain specialist Dr Susan Evans said a well delivered schools program was vital to ensure all young women could reach their potential.
"There's enormous economic benefits to be achieved by providing a schools program. It helps girls with pain stay at school and fulfil their educational potential. Without prompt and effective pain management girls with the most severe pain may drop out of school, which is a tragedy for both the girl and her family," she said.
"Parents of girls with pain may reduce their working hours to care for their child, and the out-of-pocket expenses associated with a chronic pain condition can put financial strain on families."
Dr Evans said women with severe pain at university may to fail to complete courses or underperform.
"What could be more important to the State of Queensland that supporting the young people who are our future?" she said.
Bad diagnosis costs appendix
DOCTORS were so baffled by the pain Jaime White felt in her abdomen they decided it must have been caused by her appendix and removed it.
When the pain persisted, it was eventually found she was suffering from endometriosis.
"I was 11 when I first started getting symptoms, but was 19 before I was diagnosed," Ms White said.
"I've now had five surgeries, the second of which was to remove my appendix."
Ms White, who volunteers at Endometriosis Queensland, said she had heard of other sufferers also having their appendix mistakenly removed.
"We need better awareness not only among women and girls who may be suffering, but our medical professionals as well, especially among emergency department physicians," she said.
Gynaecologist and pelvic pain expert Dr Susan Evans said she had heard of endometriosis pain being confused for appendicitis, but understood how it could happen.
"When women have pain in their lower abdomen, the doctors looking after them very sensibly consider whether it could be appendicitis," she said. "A burst appendix in a young woman can be a very serious condition, so I would not criticise any doctor for thinking that could be the source of the pain."
However, she said it did reflect the fact that the knowledge required to find the true cause of the pain was lacking.
Ms White, who is a private patient, said she decided to pay for health care because delays in the public system would have meant long waits for specialist appointments and surgeries. "I had my last surgery in November last year, so I'm now under a multidisciplinary team that includes a gynaecologist, pain specialist, pelvic floor physio and GP," she said.
Dr Evans said surgery could be an important part of treating endometriosis, but it wasn't the only answer. "There needs to be broader approach to the management of pelvic pain," she said.