Australians speak out amid push for life-changing health care fix

Amid thousands of social media comments calling for action with endometriosis care, one in particular is so stirring it’ll truly make you cry.

If there were ever a social media comment harrowing enough to stir tears, this would be it.

As news.com.au pushes for better care for the one million Australians suffering from endometriosis with the launch of our About Bloody Time campaign, thousands of women have come forward and shared their stories battling the oft-disregarded disease.

But for some, help is far too late.

In the comment section of the news.com.au petition, which can be signed here, 82-year-old Ronda Joiner cuts to the heart of how abysmally the health system has failed women in only two sentences.

She isn’t asking for sympathy, nor compassion – her story in itself says everything.

“There was no support for me. I had a hysterectomy at 35, no alternative offered. It was devastating,” Ronda writes of the procedure, which entails the complete removal of the uterus. “When I was 60 years old, when talking to a doctor, he made the statement that it was a disgusting disease, and it was brought on by promiscuous behaviour. I’d had endo since I was 13 years old.”

Medicare is failing women and it’s About Bloody Time things changed. Around one million suffer from endometriosis. There is no cure. Help is hard to come by and in rural or regional areas, it’s virtually impossible. We are campaigning for longer, Medicare-funded consultations for endometriosis diagnosis and treatment. Read more about the campaign and sign the petition here

There are hundreds of comments on the petition and news.com.au’s website and social media channels. Here are some that highlight the devastating impact of this chronic condition:

• “My 14 year old is suffering and I feel powerless to help,” Leah Eaton on change.org

• “My daughter suffers terribly. Her work isn’t symptomatic to her extreme pain suffered. And doctors trying to blame it on something else now they’ve operated and she’s worse,” Emma Patterson on change.org

• “I’m 37 years old, have had two children and was only diagnosed with endo last year. I thought my pain was ‘normal’ – how wrong I was. Have now begun treatment, not all working, but my next option is a disc resection of my rectum and a hysterectomy. More awareness! More funding! More education,” Kimberley Humphries on change.org

• “I had to wait 14 years to be diagnosed in the first place, I’ve been begging for another surgery for the past 2 years … After now consulting with a specialist gyno I have had an MRI and the extent of my endo appears worse than my original surgery,” Shar Bell on change.org

• “It took 29 years to get my endo diagnosed. 29 years of being gaslit by doctors & not being taken seriously. Things are getting better but they’re still not good enough,” Tanya Ray on change.org

• “It costs $1500 after Medicare makes their payment to relieve the pain women feel, but not the poor, they don’t have $1500. If this was a men’s problem it would be fully covered, the system doesn’t care if women hurt let alone poor women. Makes me pleased to be a privileged male,” Chris Bartle on change.org

• “I’m a gynaecologist and I know it takes longer to help women with pain – my usual initial appointments for pelvic pain and endometriosis are 1 hour long. Surgery is not always the answer, especially for women who have already had one or more surgeries. Rather listening, validating and educating which takes time. We have been asking for a different item number for a long time. Please change this,” Alice Whittaker on change.org

News.com.au released this compelling campaign video featuring 14-year-old Eva Luna Austin and our senior reporter, Lexie Cartwright, who was diagnosed with endometriosis in February 2021. This was the reaction across news.com.au’s TikTok, Instagram and Facebook accounts:

• “This needs to played in parliament.”

• “This is a great (video) I have literal tears in my eyes,” Jenny Pencola on TikTok

• “This is so great. I’ve been diagnosed with PCOS and endo. Went hospital last week and nurses told me it’s just my period pains. I feel like I’m screaming for help,” Leyla on TikTok

• “I finally found a doctor who diagnosed my endometriosis when I was 19, the first thing he told me to do was have a baby to cure it. I suffered 3 miscarriages.”

• “I literally just had a surgery a week ago to get endometriosis removed. I’ve suffered since my first period at 10. Mum would have to carry me to the toilet,” Emili-Rouz on TikTok

• “I was diagnosed with endometriosis when I was 16. Got sent home from 3 hospitals before my mum demanded treatment.”

• “I cried watching this! I have this disease! I’m tired of it being dismissed as “bad period” pain. I’m tired of the system failing to support people with endometriosis,” Katherine Hay on Instagram

• “This video is incredible and unfortunately so accurate,” Mel Grieg on Instagram

• “Cried watching this. 45yo and have suffered for 30 years. About f**king time,” Johanna Scully on Instagram

• “Took 15 years for me to be diagnosed with Endometriosis at 26 and another 2 years to be diagnosed with PCOS. Now 30 and losing weight for IVF,” K Barrett on TikTok

• “My GF suffers from endo so I understand how awful it is. It’s not spoken about enough in this world. The women that go through this are so brave.”

• “This hits hard. Years of back and forth, finally got a diagnosis after approximately 7 years. 7 years of being curled up on the floor in pain every time I have a bowel movement. This has to stop,” Ashleigh on TikTok

About Bloody Time is an editorial campaign by news.com.au that been developed in collaboration with scientists recommended by the Australian Science Media Centre, and with the support of a grant from the Walkley Foundation’s META Public Interest Journalism fund.