Local women are being invited to become “endo warriors” at an afternoon tea to raise awareness and funds for a painful disease that will affect about one in 9 Australian women in their lifetime – endometriosis.

Federal Member for Macquarie, Susan Templeman, said she decided to host the event after speaking with Bligh Park resident Sacha Street who was recovering from endo surgery.

“It’s about time we stopped the taboo and misunderstandings about this common disease, and having young and older women share their stories, makes other less afraid to ask for help,” Ms Templeman said.

“Endometriosis is common, but symptoms are variable, and that means it takes 6.5 years on average for a diagnosis to be made,” Ms Templeman said.

“The disease sees tissue similar to the lining of the womb growing outside it in other parts of the body.

“While it most often affects the reproductive organs, it’s also frequently found in the bowel and bladder, and has also been found in muscle, joints, the lungs and brain.

“Unfortunately, for many women it causes pelvic pain that completely puts life on hold for around or during their period, and can impact on fertility.

Sacha, who has been living with endometriosis since she was 13 years old, says she’s keen to advocate for sufferers who often don’t know what condition they have.

“I remember it being quite painful to begin with and as time went on, the pain had only gotten worse. I was just shy of my 18th birthday when I went in for my first laparoscopy - where they put a scope through a few spots in your abdomen - to see what was going on in my reproductive system,” Sacha said. “I was originally diagnosed with early Stage 1 endo, still quite a shock at age 17, but at least I had an answer for my pain.

“Fast forward four years and I’ve got a heatpack on my stomach after getting my first painful post-operative period. After my second laparoscopy last month, I was diagnosed with Stage 2 endo in multiple spots and preliminary adenomyosis, a similar condition but which sees the tissue growing on the inside of the uterus wall in a spot called the myometrium. I also have suspected polycystic ovaries.

“I am still trying to come to terms with how this has all unfolded in such a short period of time – pardon the pun! 

“Endo has affected almost every aspect of my life and is a condition so overwhelmingly misunderstood. If I told you that it's as common as asthma or diabetes you'd be right for shaking your head in disbelief thinking, "how come I know nothing about this."

“I also felt this way after my original diagnosis. Raising money is so important because money creates funding for research, which in turn, provides more answers for care providers so they can provide the right kind of treatment for endometriosis.

“It also helps us, the endo warriors, try to understand the why. The why behind feeling so misunderstood and disbelieved. The why behind the disease we still know so little about. “

Ms Templeman said that aside from the massive impact it has on lives, the disease costs our society $9.7 billion annually.

“According to Endometriosis Australia, two-thirds of those costs are attributed to a loss in productivity, with the rest – about $2.5 billion – being direct healthcare costs,” Ms Templeman said.

All potential endo warriors are invited to come along to Tiningi Hall from 2pm to 3.30pm on Saturday, March 26, enjoy some afternoon tea and help raise funds and awareness.

To register to attend the event, visit https://www.susantempleman.com.au/have-your-say/register-to-attend-endo-high-tea/