Anna Chaplin has been trying to educate people about her condition, endometriosis, for years. (ABC Illawarra: Justin Huntsdale)
A long-term advocate for endometriosis awareness has lauded a Federal Government national plan for the disease as a game-changing move that validates a painful condition that affects one in 10 women.
Anna Chaplin has been trying to get people to understand endometriosis for years, but she said it was a topic people did not want to confront, and women were suffering in silence.
The disease of the uterus can cause immense pain throughout the body, debilitating period pain, and a range of psychological and social side effects.
“Just today I had an important holiday event I was going to in Sydney and I can’t go because I can’t drive in a car for a few hours due to the pain,” she said.
It is a condition that brings her busy life to a grinding halt on a regular basis, but she now hopes people will get a better understanding of what her and thousands of women are going through.
Federal Government announces action
This week in Canberra, Health Minister Greg Hunt, flanked by endometriosis awareness campaigners, formally apologised to women with endometriosis for not helping sooner, and announced a national plan to address the condition.
The plan includes a research grant of $160,000 for the National Health and Medical Research Council, as well as a campaign for education and awareness.
There will also be a targeted call for endometriosis research under the Medical Research Future Fund.
While it may not be news of a cure, Ms Chaplin said the fact it had been put on the agenda by the Federal Government was enough to make her “emotional and overwhelmed”.
“I can’t believe it’s finally happening because for so long it’s been endometri-what?” she said.
“No one’s known what we’re talking about, but over on our end we’re talking about one in 10 women who are affected.
“It should be nationally recognised and finally more voices are being heard and something is happening.”
Advocacy group wants workplace education
At the announcement at Parliament House, Endometriosis Australia director Donna Ciccia called for workplaces to educate employees about endometriosis.
She is aware of one workplace that has helped support a worker with endometriosis, and she wants to see it become the norm.
“This has also led to an internal acceptance for more flexibility in the workplace for those affected,” she said.
“As recently as last week, [an employee] had to take time off because of an endometriosis attack.
“The response from her male supervisor was ‘We’ve got you covered’, and that didn’t happen before.”
Validation proves it’s not ‘all in the head’
Ms Chaplin spent five years wondering what was wrong with her.
- Unusually intense period pain
- Pain on or around ovulation
- Bowel or bladder problems
- Heavy or irregular bleeding
Source: Endometriosis Australia
“I’d been told everything from it being a digestive issue to [being caused by] gluten to it’s all in my head and I’m neurotic,” she said.
“If it happened to me, it happened to millions of other women.
“People suffer in silence and they think it’s normal, but no one deserves to be in life-altering pain.”
Ms Chaplin said greater awareness would hopefully lead to earlier diagnosis.
According to Mr Hunt, at the moment endometriosis is a condition that takes about nine years to diagnose.
Ms Chaplin says people doubted her endometriosis before she was formally diagnosed. (ABC Illawarra: Justin Huntsdale)
“This condition should have been better acknowledged and acted upon long ago, but today we are taking action so the struggle that women face will no longer be silent or their battles private,” he said.
Ms Chaplin said Mr Hunt’s apology for not acting sooner was a welcome recognition for the frustration people with endometriosis had felt, along with the pain.
“I appreciate an apology because it validates our experiences,” she said.
“I think of the bad experiences of feeling helpless and going to a doctor and not getting answers. At least now we’re being told now it’s not our fault.”