Speaker 1: Already and this is the Daily This is the Daily OS.
Speaker 2: Oh, now it makes sense.
Speaker 1: Good morning and welcome to the Daily OS. It's Friday,
Speaker 1: the twenty third of May.
Speaker 3: I'm Lucy Tassel, I'm Zara Seidler.
Speaker 1: Endometriosis has been in the headlines this week, with the
Speaker 1: announcement of a new specialized clinic and a data drop
Speaker 1: from Australia's Health Institute. That's because the sixteenth World Congress
Speaker 1: on Endometriosis began this week. That's actually being held in Sydney,
Speaker 1: and so global experts are discussing the condition and how
Speaker 1: best to treat it. The chronic pelvic condition affects at
Speaker 1: least a million Aussies and diagnosis rates are increasing. In
Speaker 1: today's episode, we'll explain the latest developments in endometriosis research.
Speaker 2: And what they might mean for people with the condition.
Speaker 3: Lucy, we've seen two really big stories around endometriosis and
Speaker 3: the data around endometriosis specifically this week, and judging by
Speaker 3: our audience response, it's some of the most engaged pieces
Speaker 3: we've had in weeks. People really care about it and
Speaker 3: they want to know more about what's being done to
Speaker 3: treat it and what the research is showing us.
Speaker 1: Yeah, exactly, And I think the number of people who
Speaker 1: have endometriosis and the kind of intense impact you can
Speaker 1: have on your life kind of shows why people would
Speaker 1: be invested in that. If you have close contact with
Speaker 1: someone with ENDO, or if you have endometriosis yourself, you
Speaker 1: know how much of a life changer it can be.
Speaker 2: Yeah.
Speaker 3: Absolutely, And so I guess for anyone listening who isn't
Speaker 3: familiar or who hasn't experienced it themselves, what is endometriosis
Speaker 3: and what can the symptoms feel like and look like?
Speaker 2: Yeah.
Speaker 1: Endometriosis is a condition where tissue similar to the lining
Speaker 1: of the uterus grows elsewhere in the body. It can
Speaker 1: cause debilitating pain in the pelvic region, digestive problems, excessive bleeding.
Speaker 1: It can be associated with infertility, and that pain and
Speaker 1: bleeding can be before, during, and after your period. It's
Speaker 1: primarily diagnosed through surgical intervention. In the last couple of years,
Speaker 1: we've had a couple of very prominent Australian women speak
Speaker 1: up about their experiences with endometriosis.
Speaker 3: I'd say most recently Bindi Irwin.
Speaker 1: Yes so, Bindi Iwen and former Australian of the Year
Speaker 1: Grace Tame have both described having to have surgery to
Speaker 1: ease their pain, which Bindi said was insurmountable and Grace
Speaker 1: Tame said was chronic. New research from the University of
Speaker 1: Queensland from a couple.
Speaker 2: Of weeks ago.
Speaker 1: Even before this last week of headlines, there was new
Speaker 1: research published a couple of weeks ago which found women
Speaker 1: with endometriosis were seven times more likely to enter menopause
Speaker 1: early than those without. And again, just to put it
Speaker 1: into perspective, according to the Australian Institute of Health and
Speaker 1: Welfare we'll come back to them later, around one in
Speaker 1: seven women and girls in Australia have endometriosis.
Speaker 3: And there are so many complexities here because there's obviously,
Speaker 3: as you said, the pain and the chronic pain that
Speaker 3: one can experience. But you also spoke about the fact
Speaker 3: that it's so hard to diagnose that people have to
Speaker 3: have surgical intervention to even know for sure that endometriosis
Speaker 3: is what is going on and causing the pain that
Speaker 3: for so many women can just be unexplained. Otherwise, what
Speaker 3: can be done to treat endometriosis once it's been diagnosed.
Speaker 1: So there's no cure per se, and as we've mentioned,
Speaker 1: you might have to go in for surgery over time,
Speaker 1: possibly several surgeries to remove tissue. There are medications you
Speaker 1: can take that will limit the growth. There's one called Visan,
Speaker 1: which the government added to the Pharmaceutical Benefit Scheme last year,
Speaker 1: so that means a twenty eight day prescription will cost
Speaker 1: you no more than thirty one dollars sixty And hormonal
Speaker 1: birth control can for some people ease some of the
Speaker 1: symptoms as well, but there's not like a vaccine or
Speaker 1: a magic pill that makes it go away.
Speaker 2: It can only be kind of mitigated.
Speaker 3: Yeah, And one of the things that people talk about
Speaker 3: is the fact that it is so under researched and
Speaker 3: that there is so much that is not known about endometriosis,
Speaker 3: which I think leads quite nicely into what the first
Speaker 3: announcement this week was, which was about a new research institute. Yes,
Speaker 3: can you talk me through that.
Speaker 2: Yes.
Speaker 1: So we learned earlier this week that the University of
Speaker 1: New South Wales you and sw in Sydney, is going
Speaker 1: to establish a world first endometriosis research institute. This institute
Speaker 1: is going to focus on fast tracking and new understanding
Speaker 1: of the condition and improving health outcomes to women who
Speaker 1: have endometriosis. You and sw researcher Professor Jason Abbott said
Speaker 1: the institute's quote, program driven scientific discoveries will pave the
Speaker 1: way for generational change for anyone who has or no
Speaker 1: someone with endometriosis. So that's a pretty big call. Professor
Speaker 1: Abbott said he'd cared for people with endometriosis for thirty years,
Speaker 1: and he said that experience had shown him, quote we
Speaker 1: must go beyond the surgery and current medical treatments to
Speaker 1: understand the disease processes.
Speaker 3: We'll be back with the rest of today's deep dive
Speaker 3: after a short message from our sponsor and Lucy Research.
Speaker 3: Institutes are not traditionally cheap to set up. They are
Speaker 3: expensive and the donation that has set up this foundation
Speaker 3: has been huge.
Speaker 1: Yes, it's fifty million dollars, which is a big chunk
Speaker 1: of change. It's being dispersed over ten years, and it's
Speaker 1: actually come from the Ainsworth family, who own one of
Speaker 1: the world's largest gambling machine companies. This donation is believed
Speaker 1: to be the world's biggest by a family to endometriosis
Speaker 1: research and to women's Health in Australia.
Speaker 3: Yeah, I've seen a lot of discourse online about that donation,
Speaker 3: which you can read about. But really really interesting there.
Speaker 3: So you said that was the first announcement, but then
Speaker 3: later in the week it was really interesting timing. We
Speaker 3: got all of this new data about endometriosis that now
Speaker 3: tells us a fuller picture of what the state of
Speaker 3: endometriosis in this country actually looks like.
Speaker 1: Yes, the second headline we saw around endometriosis this week
Speaker 1: was a big data drop from the Australian Institute of
Speaker 1: Health and Welfare, who I mentioned earlier. The AIHW. It
Speaker 1: collected data about how many women were hospitalized for endometriosis
Speaker 1: and how many presented to the emergency room. The AIHW
Speaker 1: found that in the twenty twenty two to twenty three
Speaker 1: financial year, more than forty four thousand visits to hospital
Speaker 1: were related to endometriosis. That's up from around thirty thousand
Speaker 1: in twenty twelve twenty thirteen, so a big, big jump
Speaker 1: over the course of a decade. The most compelling stat
Speaker 1: for me looking over this starter and for our journalist
Speaker 1: at tool a Rock, was that young women were the
Speaker 1: most affected. Hospitalization rates. Among women age twenty to twenty
Speaker 1: four actually doubled in that ten year period.
Speaker 3: I find that really interesting because when we wrote about
Speaker 3: the research Institute, I was looking through the media release
Speaker 3: that was sent to us about that, and there was
Speaker 3: a line specifically in that media release that spoke about
Speaker 3: older women and their experience with endometriosis and how prevalent
Speaker 3: it is for a certain age group. But now are saying, wow,
Speaker 3: we are looking at double in a young cohort.
Speaker 1: I wonder if, and this is just pure speculation, I
Speaker 1: wonder if it's young women who have now learned about endometriosis,
Speaker 1: or you know, through kind of public awareness, have come
Speaker 1: to understand it, being able to say no, I need
Speaker 1: to go to the hospital.
Speaker 2: I know what this is.
Speaker 1: Yeah, pure speculation, but certainly the AIHW has said that
Speaker 1: people are more aware of the condition than they were
Speaker 1: ten years ago.
Speaker 3: That makes sense.
Speaker 1: Additional, we learned that in the twenty twenty three twenty
Speaker 1: four financial year they were close to five thousand endometriosis
Speaker 1: related presentations.
Speaker 2: To the emergency department, and around three.
Speaker 1: Quarters of those were assessed as needing to be seen
Speaker 1: by a doctor within half an hour.
Speaker 3: Shows you how acute the pain is.
Speaker 2: Yeah, exactly.
Speaker 1: Overall, across all women, the number of hospital admissions over
Speaker 1: that period related to endometriosis has increased by fifty four percent,
Speaker 1: so again another big jump.
Speaker 3: Yeah, so across the board. Clearly there is a huge
Speaker 3: increase there. You kind of spoke to this a bit earlier,
Speaker 3: but we'd love to know more about was there any
Speaker 3: information beyond knowledge of the issue that perhaps contributed to
Speaker 3: these increased rates.
Speaker 2: Yeah.
Speaker 1: The AIHWU did note that diagnosis rates are going up overall,
Speaker 1: so again just kind of speaking to that greater understanding. However,
Speaker 1: it did say endometriosis is historically underrecognized and that there's
Speaker 1: still an average of between six and eight years between
Speaker 1: onset of symptoms and diagnosis, which I think you would
Speaker 1: agree is a long time to live with unexplained chronic pain.
Speaker 3: Yeah. Absolutely, And Lucy, earlier you mentioned that the government
Speaker 3: had subsidized a medication for ENDO.
Speaker 1: Yeah.
Speaker 3: I'm curious to know if they are doing anything else
Speaker 3: in this space, given the rapid increase that we are
Speaker 3: seeing and hearing about when it comes to diagnoses and
Speaker 3: presentations to hospitals.
Speaker 1: Yeah, I mean it makes sense that we would be
Speaker 1: wondering about what the government would be doing to something
Speaker 1: that affects one in seven Australian women and girls. So
Speaker 1: two successive governments have taken steps towards investigating and treating endometriosis.
Speaker 1: The previous coalition government actually in twenty eighteen created a
Speaker 1: Federal Action Plan. It was aimed at improving diagnosis rates,
Speaker 1: treatment and support for those living with endometriosis and pelvic
Speaker 1: pain in twenty twenty four, so last year, the Labor
Speaker 1: government that was elected in twenty twenty two provided an
Speaker 1: update on this plan. Because it was the sort of
Speaker 1: thing that carries over regardless of who's in government. It
Speaker 1: said it had allocated budget funding for early intervention to
Speaker 1: support patients and to improve access to medical scans like
Speaker 1: MRIs to help people understand what's going on.
Speaker 3: Yeah.
Speaker 1: The government has also appointed an advisory group to guide
Speaker 1: where funding should go and where research should focus. And
Speaker 1: as a practical measure, it's opened twenty two pelvic paying
Speaker 1: clinics around the country.
Speaker 3: Oh yeah, I remember that announcement.
Speaker 1: Yes. At the last budget in March which I was
Speaker 1: there to look over the document, the government set aside
Speaker 1: funding for eleven more and Finance Minister Katie Gallaher told us.
Speaker 2: At the time that it's something that the government takes seriously.
Speaker 3: Yeah, really interesting, Lucy, thank you for explaining that. As
Speaker 3: you've said, it clearly affects so many people across the country.
Speaker 3: If you yourself don't experience it, the chances are that
Speaker 3: you do know a woman in your life who is
Speaker 3: experiencing that sort of pain. So really useful for us
Speaker 3: to understand the state of play and what's being done
Speaker 3: about it. So thank you so much. Thanks Aarah, thank
Speaker 3: you for joining us for another week of the Daily os.
Speaker 3: We'll be back later today with the headlines, but until then,
Speaker 3: have a great Friday.
Speaker 1: My name is Lily Madden and I'm a proud Arunda
Speaker 1: Bungelung Caalcutin woman from Gadighl country. The Daily oz acknowledges
Speaker 1: that this podcast is recorded on the lands of the
Speaker 1: Gadighl people and pays respect to all Aboriginal and Torres
Speaker 1: Strait Island and nations. We pay our respects to the
Speaker 1: first peoples of these countries, both past and present.