Endometriosis: our voices are demanding to be heard

“I would honestly say the mental health side of it is far worse than the physical, one hundred percent. It just consumes you.”

“I would honestly say the mental health side of it is far worse than the physical, one hundred percent. It just consumes you.”

The experience of 45-year-old, Donna Gozzard is one of frustration, isolation, and decades of limitation, all of which would ring true for the countless women who themselves have lived through the challenges of endometriosis.

Donna represents one in nine women that have been or will be affected by the debilitating disease. That’s one in nine mothers, daughters, partners, and friends.

“If we’re going out for dinner and stuff and I had my period, to the outside world I looked like I was coping and having a great time. In my mind, I’m thinking how long since I’ve been to the toilet.”

For a long time, endometriosis has existed in the shadows; unrecognised, un-researched, and most painfully, un-legitimised. Luckily for women everywhere, someone else was also standing in those shadows (and much less quietly might I add); the resilient women who have been uncompromisingly advocating for recognition and telling their stories to spark change.

Thanks to endometriosis advocacy groups around the country, a light has been shone on this previously under-acknowledged, yet outrageously common disease, putting endometriosis on the political agenda.

Broad Radio’s own Jo Stanley, spoke with Professor Peter Rogers, from Jean Hailes for Women, Director of Research at the Royal Women’s Hospital and Professor of Women’s Health Research University of Melbourne on last week’s show to discuss endometriosis research and what the future of diagnosis and treatment might look like.

“We’re much closer to the start of the journey than the end,” said Professor Rogers. Although, now with increased Government funding, the research and the clinical communities have the means and the action plan to press on with this important issue. The “breaching of political inroads”, as Professor Rogers puts it, is ultimately creditable to the women who demanded to be heard. Assuredly he said, “all of this has happened because of advocacy by women, for women.

Endometriosis being put on the political agenda indicates a shift in attitudes towards the importance of funding, research, (and just generally giving a f*ck!) about women’s health at a higher level.

This shift that Professor Rogers says, “couldn’t come soon enough,” has provided the means for the research he is overseeing at Royal Women’s and Mercy Hospital’s in Melbourne, ‘Improving Diagnosis and Treatment for Endometriosis,’ which intends to use data to better understand diagnosis, and the various types of the disease, for which the main treatment is surgery.

This year’s budget includes $354 million for women’s health, with specific funding allocated to endometriosis research.

This win belongs to all the women who have been fighting in the darkness. It’s a sign of recognition to all those who have felt invisible inside this debilitating disease. It’s a thank you to everyone who has helped with funding and research, and finally, it’s a salute to the power of unity and womanhood.

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