ENDOMETRIOSIS Australia’s High Time for Tea initiative’s aim is to boost knowledge and resources to support research into this critically misunderstood disorder.
Alexis Wolfe, CEO of Endometriosis Australia, said the community fundraiser aims to “increase awareness and conversations about endometriosis” around the country.
“Individuals can participate at any time of the year, but these warmer months are always a lovely time to bring people together,” Ms Wolfe said.
“The fun comes from inviting your guests, planning what you’re going to serve and enjoying quality time with friends, family or colleagues.”
Endometriosis research is sorely needed to combat misinformation and broaden education.
The condition affects one in nine women, girls and those who identify as gender diverse.
This equates to over 830,000 Australians.
Yet it takes an average of six and a half years for those living with endometriosis to be diagnosed.
The only way to identify endometriosis is through surgical intervention so a tissue sample can be taken and tested.
“There are more questions than answers to it which can only be answered through research,” said Ms Wolfe.
Bethany Hunt understands all too well the long and painful process of an endometriosis diagnosis.
Twenty-four-year-old Miss Hunt said her “unexplainable and unexpected” pain started when she was 15.
“It started with episodes of extreme pain… doctors, my family and myself at this stage assumed it was a food intolerance or irritable bowel syndrome,” she said.
As years went on, Miss Hunt’s symptoms only worsened.
“I even, wrongly, had my appendix removed after presenting to the emergency room in intense pain, which isn’t actually uncommon in people with pre-diagnosed endometriosis,” she said.
“I spent years finding a doctor who would listen to me.
“Most came up with the same answers of IBS, constipation, bad diet, my body’s normal response to being a girl, having a period and more.
“I took time off work dealing with a long list of painful, uncomfortable and ongoing symptoms which didn’t only affect me physically, but mentally and financially too.
“Finally, I met a doctor who listened, then a gynaecologist that listened and I went in for my second laparoscopy.
“They found deposits of endometriosis, adhesions, cysts and that my whole uterus was tilted forward due to being pulled by said adhesions.”
Ms Wolfe said endometriosis remains largely misunderstood by the public with misinformation still prevalent.
“Whilst people have heard of the disease there are many myths about how it impacts a person’s life,” Ms Wolfe said.
Miss Hunt experienced this firsthand during the early stages of her pain.
“There was limited information on the internet and the stuff that was there, was partly or mostly incorrect,” she said.
“It was so hard to sift through the information and work out whether it was correct, partly correct or not.
“Even some things the doctor had told me were wrong and that was really confusing.”
She has since created a blog on Instagram to share her experience with others.
“I was scared to share too much about endometriosis before I was diagnosed, out of fear that I was crazy and imagining my painful symptoms,” she said.
“Once I received my diagnosis I wanted to be someone who could help others in my position, to assure them they aren’t crazy and these symptoms aren’t normal.”
Miss Hunt uses the Instagram page to empower others through knowledge and to advise others on seeking the correct help.
“It’s so important the internet and social media is filled with the correct information, symptoms and advice for the endometriosis community so that young girls, like me, can work out if something’s wrong and how to get the correct treatment,” she said.
Education and awareness is critical to help create a safe space for those with endometriosis to share their experience, seek support and receive treatment.
“If a person needed to wait 6.5 years for a cancer diagnosis we would be outraged,” Ms Wolf said.
“We need to do better by these sufferers – to listen, to validate and to invest in the research needed to understand this complex disease.”
Miss Hunt said she hosted a High Tea with Endometriosis Australia this year to start the discussion and get people talking in a comfortable environment.
“I figured if these people were armed with the correct information, they may be able to help someone else, like their future daughter, friend, sister or partner and so on,” she said.
“I had all my closest friends and family attend my house and we held a raffle raising over $400.”
Such funds are critical for further research to better understand and diagnosis endometriosis.
“We need research to help change the lives of Endo Warriors for not just the next generation but for this one,” Ms Wolfe said.
“We want all Endo Warriors to not only survive, but to thrive.”