My name is Lily Maddon and I'm a proud Arunda Bunjelung Calcotin woman from Gadighl country. The Daily oz acknowledges that this podcast is recorded on the lands of the Gadighl people and pays respect to all Aboriginal and Torres Strait Island and nations. We pay our respects to the first peoples of these countries, both past and present.
Good morning and welcome to the Daily os. It's Wednesday, the twentieth of September. I'm Zara, I'm Sam. The rate of endometriosis hospitalizations has doubled for women age twenty to twenty four in the last decade, but it's still taking on average up to eight years to receive a diagnosis.
People passing out on the bathroom floor due to their pain and they're told that period pain is normal and you just need to get used to it or you need to manage it better.
In the Deep Dive, we'll explain how prevalent endometriosis actually is and what's being done to help people manage the disease. Ju Sam, we have a group of Polleys traveling overseas.
That's right, there's a group headed to Washington today and their calling for the release of Julian Sange. Federal ministers, including National MP Barnaby Joyce, Independent MP Menique Ryan and Green Senator David Shubridge, will lobby American lawmakers to reconsider extraditing the Australian citizen from the UK to face criminal prosecution in the US. Assange is facing serious charges relating two thousands of historic leaked classified documents.
Single job seeker payments will increase by fifty six dollars from today. The increase comes into effect after it passed through the Federal Parliament earlier this year. Single job seeker recipients will now receive seven hundred and fifty dollars each fortnight. Parenting and pension payments are also going up from today.
The Bureau of Meteorology has officially declared an El Nino weather event is underway. Certainly feels like it. El Nino brings warmer, drier condition and can also result in a higher bush fire risk and increased likelihood of drought. It comes after three consecutive summers of increased rainfall caused by a La Nina weather pattern, and the.
Good news an Australian made drug used to treat symptoms of a rare blood cancer, has been approved for use in the US. The drug treats anemia caused by myolofibrosis, which is a cancer affecting twenty five thousand Americans. So hope the drug can establish a new standard of care for treating myolofibrosis. Before we go into a discussion about endometriosis, I do just want to make a quick comment about
the language that we are using today. We recognize that endometriosis can affect women and girls, it can affect transgender people, non binary people, and gender diverse people. In the report that we are referencing, the AIHW didn't specifically reach out to those groups, so we will be relying on the language used in this report for today's deep dive before we go into the prevalence of endometriosis. Yeah, I want to ask you, and this is not a gotcha question,
what do you understand about endometriosis? What do you think?
It is definitely not enough, But what I think it is is a condition that means you have extremely painful periods.
That is definitely part of it. So it is essentially a disease where tissue that is similar to the lining of the uterus actually grows in other parts of your body, and so that can be responsible for things like you just said, like painful periods, but it can also be responsible for fertility issues. You know, some people don't experience a lot of symptoms, while others experience that severe pain, heavy and irregular mental bleeding, bloating, fatigue, anxiety, depression, and
a whole host of other symptoms. And I think the reason that I wanted to ask you is because it is so common.
I do have to say again, from my perspective, I've noticed an increase in conversations about it, particularly on social media. How prevalent is endometriosis in Australia.
Again, like many other issues in the kind of women's health realm, there is a lot to still be done in terms of how we report and how we understand this. But what we do know is that, according to data from the Australian Institute of Health and Welfare that we got earlier today, around fourteen percent of women aged forty four to forty nine are estimated to have endometriosis and around eight point eight percent for twenty six to thirty one year olds. And if we look at those figures.
What that tells us is that there's actually an increase in the likelihood of endometriosis diagnosis as women get older, with the passing of time and so on average, the report actually says it takes up to eight years for someone to receive a diagnosis after first getting symptoms. Why is that the case, I think because traditionally it's been so hard to get a diagnosis, and as I said, it affects many people. And we did ask our audience
for their experiences dealing with enemy triosis. Maya told us it took over a decade of debilitating symptoms for her to actually even receive a diagnosis.
In that time, I had been repeatedly given misinformation by multiple doctors.
I had to wait until my mid.
Twenties to have surgery for admetriosis, and my life could have been a lot easier and a lot less painful if I'd been able to get that diagnosis earlier. So we heard from Maya how hard the process of getting a diagnosis can be. But this isn't unique to just her experience. This is Lucy who actually works at a specialist endoclinic in WA and she's talking about why it's so difficult to actually get a diagnosis.
Until recently, the only way to get formally diagnosed was to undergo laparoscopic surgery, which is where essentially doctors cut open the abdomen of people with ENDO and visualize the endometriosis lesions.
Lucy says that the lack of diagnostic options has actually just left people in chronic, debilitating pain.
Do you know, I've heard stories of people passing out on the bathroom floor due to their pain, not being able to go to work and missing school days, and then going to an ed and presenting with this awful pain, and they're dismissed for drug seeking behavior by doctors or told that period pain is normal and you just need to get used to it, or you need to manage it better, which just completely invalidates the experiences of these people and breeds a huge distrust in the medical system,
which is really damaging to these people.
Things have begun to shift, though, that's according to Lucy, who says that that's in part due to the diagnosis process at clinics like the one where she works.
It's now shifted towards the clinical diagnosis, which is a combined set of history, symptoms and any management strategies, which has improved the diagnostic process and that people don't have to have an invasive surgery in order to get diagnosed and to be taken seriously with this disease.
Lucy works at one of the twenty two who federally funded endometriosis clinics in the country, and they're based in pre existing GP clinics, but they're designed to provide specialist care for people who have endometriosis. In order for real change, though, Lucy says, we need more investment in research.
We need to figure out what causes it. We need to figure out what causes flare ups and exacerbates people's symptoms, and then from there maybe we can introduce some preventative treatment for people that are increase risk and find a cure.
There are currently some research projects underway in Australia and I know we spoke about one of them recently. As the good news on this pod. Federal government has committed around twenty nine million dollars to research the issue since twenty eighteen, and that includes projects that are specifically designed to combat the issue we're talking about, which is the
diagnosis process and also the treatment of ENDO. This research will also look at things like diet and exercise in genetics and try to learn more about how people can actually best manage and identify endometriosis in the meantime, while
we wait for more information about this disease. If you're in need of endometriosis care, or you know, listening to this or reading about endometriosis, you think that this might be something that you're suffering from, Lucy recommends looking up where the closest ENDO clinic might.
Be to you. Zara podcast that I listened to from the New York Times is coming to mind. It's called The Retrievals, and in that podcast they talk about the IVF clinic at Yale University where a number of women were expressing the fact that they had excruciating pain after IVF procedures and doctors just didn't really believe them. And it turned out that there was a nurse who was pocketing the pain relief and the pain relief was not actually getting to the women. But it took something like
a dozen women to actually get an investigation. Now, all of this research has happened around ENDO is part of the issue here that women just aren't being believed about their pain.
Yeah, I mean, I think that's definitely part of it is that you know, for so long, I mean, we talk about the rising rate or diagnosis of endometriosis, and I don't think more people have endometriosis. I think we're just finally finding a name for what has otherwise just
been excruciating pain that women lived through. And you know, when you go to a doctor and talk about excruciating period pain, we are now finding the vocabulary to describe that that isn't normal, that that is not something that you live with, that that is actually a disease that has a formal diagnosis and a formal care plan.
I just want to particularly thank our listeners who contributed to this episode, but also those people who sent in voice notes and we didn't include in this episode. Your contributions really bring these stories to life and as part of what makes the Dailios so special. Thank you to everyone for listening to this episode of the podcast. We'll be back again tomorrow. Until then, have a great day.