Already and this is the Daily This is the Daily OS.
Oh, now it makes sense.
Good morning and welcome to the Daily OS. It's Friday, the twenty third of May.
I'm Lucy Tassel, I'm Zara Seidler.
Endometriosis has been in the headlines this week, with the announcement of a new specialized clinic and a data drop from Australia's Health Institute. That's because the sixteenth World Congress on Endometriosis began this week. That's actually being held in Sydney, and so global experts are discussing the condition and how best to treat it. The chronic pelvic condition affects at
least a million Aussies and diagnosis rates are increasing. In today's episode, we'll explain the latest developments in endometriosis research.
And what they might mean for people with the condition.
Lucy, we've seen two really big stories around endometriosis and the data around endometriosis specifically this week, and judging by our audience response, it's some of the most engaged pieces we've had in weeks. People really care about it and they want to know more about what's being done to treat it and what the research is showing us.
Yeah, exactly, And I think the number of people who have endometriosis and the kind of intense impact you can have on your life kind of shows why people would be invested in that. If you have close contact with someone with ENDO, or if you have endometriosis yourself, you know how much of a life changer it can be.
Yeah.
Absolutely, And so I guess for anyone listening who isn't familiar or who hasn't experienced it themselves, what is endometriosis and what can the symptoms feel like and look like?
Yeah.
Endometriosis is a condition where tissue similar to the lining of the uterus grows elsewhere in the body. It can cause debilitating pain in the pelvic region, digestive problems, excessive bleeding. It can be associated with infertility, and that pain and bleeding can be before, during, and after your period. It's
primarily diagnosed through surgical intervention. In the last couple of years, we've had a couple of very prominent Australian women speak up about their experiences with endometriosis.
I'd say most recently Bindi Irwin.
Yes so, Bindi Iwen and former Australian of the Year Grace Tame have both described having to have surgery to ease their pain, which Bindi said was insurmountable and Grace Tame said was chronic. New research from the University of Queensland from a couple.
Of weeks ago.
Even before this last week of headlines, there was new research published a couple of weeks ago which found women with endometriosis were seven times more likely to enter menopause early than those without. And again, just to put it into perspective, according to the Australian Institute of Health and Welfare we'll come back to them later, around one in seven women and girls in Australia have endometriosis.
And there are so many complexities here because there's obviously, as you said, the pain and the chronic pain that one can experience. But you also spoke about the fact that it's so hard to diagnose that people have to have surgical intervention to even know for sure that endometriosis is what is going on and causing the pain that for so many women can just be unexplained. Otherwise, what can be done to treat endometriosis once it's been diagnosed.
So there's no cure per se, and as we've mentioned, you might have to go in for surgery over time, possibly several surgeries to remove tissue. There are medications you
can take that will limit the growth. There's one called Visan, which the government added to the Pharmaceutical Benefit Scheme last year, so that means a twenty eight day prescription will cost you no more than thirty one dollars sixty And hormonal birth control can for some people ease some of the symptoms as well, but there's not like a vaccine or a magic pill that makes it go away.
It can only be kind of mitigated.
Yeah, And one of the things that people talk about is the fact that it is so under researched and that there is so much that is not known about endometriosis, which I think leads quite nicely into what the first announcement this week was, which was about a new research institute. Yes, can you talk me through that.
Yes.
So we learned earlier this week that the University of New South Wales you and sw in Sydney, is going to establish a world first endometriosis research institute. This institute is going to focus on fast tracking and new understanding of the condition and improving health outcomes to women who have endometriosis. You and sw researcher Professor Jason Abbott said the institute's quote, program driven scientific discoveries will pave the way for generational change for anyone who has or no
someone with endometriosis. So that's a pretty big call. Professor Abbott said he'd cared for people with endometriosis for thirty years, and he said that experience had shown him, quote we must go beyond the surgery and current medical treatments to understand the disease processes.
We'll be back with the rest of today's deep dive after a short message from our sponsor and Lucy Research. Institutes are not traditionally cheap to set up. They are expensive and the donation that has set up this foundation has been huge.
Yes, it's fifty million dollars, which is a big chunk of change. It's being dispersed over ten years, and it's actually come from the Ainsworth family, who own one of the world's largest gambling machine companies. This donation is believed to be the world's biggest by a family to endometriosis research and to women's Health in Australia.
Yeah, I've seen a lot of discourse online about that donation, which you can read about. But really really interesting there. So you said that was the first announcement, but then later in the week it was really interesting timing. We got all of this new data about endometriosis that now tells us a fuller picture of what the state of endometriosis in this country actually looks like.
Yes, the second headline we saw around endometriosis this week was a big data drop from the Australian Institute of Health and Welfare, who I mentioned earlier. The AIHW. It collected data about how many women were hospitalized for endometriosis and how many presented to the emergency room. The AIHW found that in the twenty twenty two to twenty three financial year, more than forty four thousand visits to hospital
were related to endometriosis. That's up from around thirty thousand in twenty twelve twenty thirteen, so a big, big jump over the course of a decade. The most compelling stat for me looking over this starter and for our journalist at tool a Rock, was that young women were the most affected. Hospitalization rates. Among women age twenty to twenty four actually doubled in that ten year period.
I find that really interesting because when we wrote about the research Institute, I was looking through the media release that was sent to us about that, and there was a line specifically in that media release that spoke about older women and their experience with endometriosis and how prevalent it is for a certain age group. But now are saying, wow, we are looking at double in a young cohort.
I wonder if, and this is just pure speculation, I wonder if it's young women who have now learned about endometriosis, or you know, through kind of public awareness, have come to understand it, being able to say no, I need to go to the hospital.
I know what this is.
Yeah, pure speculation, but certainly the AIHW has said that people are more aware of the condition than they were ten years ago.
That makes sense.
Additional, we learned that in the twenty twenty three twenty four financial year they were close to five thousand endometriosis related presentations.
To the emergency department, and around three.
Quarters of those were assessed as needing to be seen by a doctor within half an hour.
Shows you how acute the pain is.
Yeah, exactly.
Overall, across all women, the number of hospital admissions over that period related to endometriosis has increased by fifty four percent, so again another big jump.
Yeah, so across the board. Clearly there is a huge increase there. You kind of spoke to this a bit earlier, but we'd love to know more about was there any information beyond knowledge of the issue that perhaps contributed to these increased rates.
Yeah.
The AIHWU did note that diagnosis rates are going up overall, so again just kind of speaking to that greater understanding. However, it did say endometriosis is historically underrecognized and that there's still an average of between six and eight years between onset of symptoms and diagnosis, which I think you would agree is a long time to live with unexplained chronic pain.
Yeah. Absolutely, And Lucy, earlier you mentioned that the government had subsidized a medication for ENDO.
Yeah.
I'm curious to know if they are doing anything else in this space, given the rapid increase that we are seeing and hearing about when it comes to diagnoses and presentations to hospitals.
Yeah, I mean it makes sense that we would be wondering about what the government would be doing to something that affects one in seven Australian women and girls. So two successive governments have taken steps towards investigating and treating endometriosis. The previous coalition government actually in twenty eighteen created a
Federal Action Plan. It was aimed at improving diagnosis rates, treatment and support for those living with endometriosis and pelvic pain in twenty twenty four, so last year, the Labor government that was elected in twenty twenty two provided an update on this plan. Because it was the sort of
thing that carries over regardless of who's in government. It said it had allocated budget funding for early intervention to support patients and to improve access to medical scans like MRIs to help people understand what's going on.
Yeah.
The government has also appointed an advisory group to guide where funding should go and where research should focus. And as a practical measure, it's opened twenty two pelvic paying clinics around the country.
Oh yeah, I remember that announcement.
Yes. At the last budget in March which I was there to look over the document, the government set aside funding for eleven more and Finance Minister Katie Gallaher told us.
At the time that it's something that the government takes seriously.
Yeah, really interesting, Lucy, thank you for explaining that. As you've said, it clearly affects so many people across the country. If you yourself don't experience it, the chances are that you do know a woman in your life who is experiencing that sort of pain. So really useful for us to understand the state of play and what's being done about it. So thank you so much. Thanks Aarah, thank you for joining us for another week of the Daily os.
We'll be back later today with the headlines, but until then, have a great Friday.
My name is Lily Madden and I'm a proud Arunda Bungelung Caalcutin 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.