Endometriosis awareness month encourages women to discuss the disease

Endometriosis awareness month encourages women to discuss the disease
March 1, 2016 4:21pm
TIFFANY KORSSENHerald Sun

MARCH is worldwide endometriosis awareness month and for the next 30 days, women across the globe are encouraged to openly discuss their experiences with the difficult disease.

But Melbourne woman Sarah (not her real name) wants this month to be all about challenging the emotionally damaging misconceptions about endometriosis.

Sarah says some of the estimated 560,000 reproductive-aged Australian women affected by endometriosis have even been told it’s an “old woman’s” condition; one that only affects “career-driven spinsters”.

When the 35-year-old was diagnosed with the condition two years ago, her gynaecologist instructed her to “get pregnant” in order to “get better”.

“He told me if I had’ve got pregnant [at a younger age] then I probably wouldn’t be suffering from this now.

“I’d finally been given an explanation for the horrendous pain, that often left me bedridden and unable to go to work, and then I’m told I essentially brought it on myself,” she says.

“It made me feel like it was the ultimate punishment for being focused on my career and not being able to find a [partner] sooner.”

Sarah says for years, many women suffering from the excruciating illness—which can negatively affect fertility — have been wrongly made to feel like it was their fault.

“We’ve been made to think that maybe if we’d settled down earlier and had kids sooner we could have avoided such an unfeminine fate,” she says.

But now, scientific research is slamming the door on such thinking.

While the “beast” of a disease is certainly common in women over 30 who haven’t had kids, research has shown it can occur in girls as young as eight and often affects teenagers.

The agonisingly painful condition occurs when tissue, similar to the lining of the uterus, attaches itself to other organs in the body.

While it often grows near the uterus and in the bowel and bladder, it has also been known to spread into the lungs, brain and joints.

It can cause extreme period pain, fatigue and potential fertility problems.

A 2015 study suggested that endometriosis costs Australian society $7.7 billion annually.

Approximately two thirds of these costs are attributed to loss in productivity.

There is no cure for the disease, only management options, including laparoscopic excision surgery.

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Another endometriosis survivor Donna Ciccia says her experience with the debilitating disease inspired her to co-create the not-for-profit organisation Endometriosis Australia.

And in contrast to what Sarah’s specialist insisted, pregnancy did not cure Donna.

She gave birth four years after her diagnosis and had no relief from the condition.

“Pregnancy doesn’t cure it,” she says.

“That whole idea that it’s a 30-40-year-old barren career woman’s disease is absolute nonsense.

“Women should not be made feel guilty for being sick … nobody should be made feel guilty for that.

“But we do need to learn more about what causes the disease and that’s what Endometriosis March is all about … becoming educated, talking and learning more about it so that we can work towards a solution,” Ms Ciccia says.

Associate Professor Jason Abbott from the University of NSW, who completed his PhD on the surgical treatment of endometriosis, says in reality there is often about a 20 year diagnosis lag.

“That means the disease manifests in young girls, as young as eight years old, and teenagers, but often goes undiagnosed for years,” Dr Abbott says.

Dr Abbott says the misconception that endometriosis only occurs in older women is a highly damaging myth.

“It’s important people know endometriosis [can affect] women of all ages, so young women won’t dismiss their symptoms and we can make early diagnoses,” Dr Abbott says.

“The earlier women are diagnosed, the more effective the treatment will be and the less pain they will experience throughout their lifetime.”

To kick off “Endometriosis March”, Endometriosis Australia is hosting a Melbourne High Tea on Saturday March 19.