Taking to social media, endometriosis sufferers are speaking up about their concerns regarding the quality of care in Australia. This has been sparked by the recently announced Federal Budget and updated Clinical Practice Guidelines.
Mary Spanos, 26, shared her journey with endometriosis online and the lack of empathy she received from various specialists. “The hard thing with endometriosis is, nobody knows why you have it, nobody knows a cure,” she said.
The guidelines, released by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG), were last updated June 2021. They aimed to give guidance to practitioners when treating patients with endometriosis.
These guidelines are being scrutinized by sufferers of the disease, with a petition being released online, pushing for amendments.
Sarah Pearson, the creator of the ‘#changetheguidelines’ petition, noted that the guidelines use very gender-centred language, excluding a lot of people who are suffering from endometriosis. She stated that “it excludes much of the trans and non-binary community and endo has been found in some cis men as well.”
This is also shown on the Australian Charities and Non-for-profits Commission website, where Endometriosis Australia Ltd states its charity helps “females.”
Nikki Campbell, the Endometriosis Nurse Coordinator at the Epworth Hospital in Victoria, commented on how the guidelines are very similar to the international equivalents, including the United Kingdom and European guidelines. “The RANZCOG guidelines have recognised short comings and are only as good as the evidence, and the evidence is really poor,” she said.
“I think we have some amazing clinicians in Australia, they have done what they can with what they have, but the gaps are glaringly obvious.”
The petition also notes how the guidelines favour drug treatments over surgery. Endometriosis sufferers are agreeing that excision surgery, where endometriosis deposits are cut out, should be the ‘gold standard of treatment.’ This is because endometriosis can only be diagnosed through cut out samples being tested in a laboratory.
Ms Spanos said she had to have a second surgery, after her first surgery involved the technique of ablation. Ablation involves burning the lesions rather than extracting them. “This was news to me, I had no idea they used ablation and I apparently had a whole lot of scar tissue left over, which can cause issues down the line,” she said.
The Women’s Budget Statement has stated the government is investing $58.3 million to support people with endometriosis. This is a major increase from the $16.6 million mentioned in the 2021-2022 budget.
Ms Pearson is sceptical of how the funds are going to be spent, as promises have been made in the past. “Government funding needs to have transparency of where it’s coming from and where it’s going,” she said.
Endometriosis is a disease, where inflamed endometrial-like tissue presents itself outside the uterus. This can cause debilitating pain, fatigue, fertility issues, heavy bleeding and other chronic issues. There are over 830,000 Australians with endometriosis and many more undiagnosed people.
People are pushing for better education, increased research for more evidence, to then allow proper care and options for all endometriosis sufferers in Australia.
If you or someone you know need support for Endometriosis contact:
- Your Local GP
- Endometriosis WA
- Australian & New Zealand Women with Endometriosis Support Group
- Beyond Endo: Support Community for Endometriosis Warriors
Featured Image: SYDNEY SIMS via Unsplash
