1 00:00:00,560 --> 00:00:04,520 Speaker 1: Already and this is the Daily This is the Daily OS. 2 00:00:05,200 --> 00:00:06,880 Speaker 2: Oh, now it makes sense. 3 00:00:14,920 --> 00:00:17,480 Speaker 1: Good morning and welcome to the Daily OS. It's Friday, 4 00:00:17,560 --> 00:00:18,599 Speaker 1: the twenty third of May. 5 00:00:18,760 --> 00:00:21,040 Speaker 3: I'm Lucy Tassel, I'm Zara Seidler. 6 00:00:21,800 --> 00:00:25,160 Speaker 1: Endometriosis has been in the headlines this week, with the 7 00:00:25,200 --> 00:00:28,760 Speaker 1: announcement of a new specialized clinic and a data drop 8 00:00:28,840 --> 00:00:34,440 Speaker 1: from Australia's Health Institute. That's because the sixteenth World Congress 9 00:00:34,479 --> 00:00:39,000 Speaker 1: on Endometriosis began this week. That's actually being held in Sydney, 10 00:00:39,040 --> 00:00:42,920 Speaker 1: and so global experts are discussing the condition and how 11 00:00:43,000 --> 00:00:46,599 Speaker 1: best to treat it. The chronic pelvic condition affects at 12 00:00:46,680 --> 00:00:51,040 Speaker 1: least a million Aussies and diagnosis rates are increasing. In 13 00:00:51,080 --> 00:00:55,720 Speaker 1: today's episode, we'll explain the latest developments in endometriosis research. 14 00:00:55,400 --> 00:00:57,640 Speaker 2: And what they might mean for people with the condition. 15 00:01:01,280 --> 00:01:06,240 Speaker 3: Lucy, we've seen two really big stories around endometriosis and 16 00:01:06,280 --> 00:01:11,319 Speaker 3: the data around endometriosis specifically this week, and judging by 17 00:01:11,360 --> 00:01:14,120 Speaker 3: our audience response, it's some of the most engaged pieces 18 00:01:14,120 --> 00:01:17,400 Speaker 3: we've had in weeks. People really care about it and 19 00:01:17,680 --> 00:01:19,840 Speaker 3: they want to know more about what's being done to 20 00:01:19,959 --> 00:01:22,520 Speaker 3: treat it and what the research is showing us. 21 00:01:22,600 --> 00:01:26,240 Speaker 1: Yeah, exactly, And I think the number of people who 22 00:01:26,319 --> 00:01:30,520 Speaker 1: have endometriosis and the kind of intense impact you can 23 00:01:30,600 --> 00:01:33,800 Speaker 1: have on your life kind of shows why people would 24 00:01:33,800 --> 00:01:37,160 Speaker 1: be invested in that. If you have close contact with 25 00:01:37,200 --> 00:01:40,160 Speaker 1: someone with ENDO, or if you have endometriosis yourself, you 26 00:01:40,240 --> 00:01:42,959 Speaker 1: know how much of a life changer it can be. 27 00:01:43,440 --> 00:01:43,679 Speaker 2: Yeah. 28 00:01:43,720 --> 00:01:46,480 Speaker 3: Absolutely, And so I guess for anyone listening who isn't 29 00:01:46,480 --> 00:01:51,040 Speaker 3: familiar or who hasn't experienced it themselves, what is endometriosis 30 00:01:51,200 --> 00:01:54,120 Speaker 3: and what can the symptoms feel like and look like? 31 00:01:54,320 --> 00:01:54,680 Speaker 2: Yeah. 32 00:01:54,800 --> 00:01:58,800 Speaker 1: Endometriosis is a condition where tissue similar to the lining 33 00:01:58,840 --> 00:02:02,040 Speaker 1: of the uterus grows elsewhere in the body. It can 34 00:02:02,120 --> 00:02:08,480 Speaker 1: cause debilitating pain in the pelvic region, digestive problems, excessive bleeding. 35 00:02:08,720 --> 00:02:12,000 Speaker 1: It can be associated with infertility, and that pain and 36 00:02:12,000 --> 00:02:15,720 Speaker 1: bleeding can be before, during, and after your period. It's 37 00:02:15,760 --> 00:02:20,440 Speaker 1: primarily diagnosed through surgical intervention. In the last couple of years, 38 00:02:20,480 --> 00:02:23,400 Speaker 1: we've had a couple of very prominent Australian women speak 39 00:02:23,480 --> 00:02:25,959 Speaker 1: up about their experiences with endometriosis. 40 00:02:26,000 --> 00:02:28,160 Speaker 3: I'd say most recently Bindi Irwin. 41 00:02:28,080 --> 00:02:31,120 Speaker 1: Yes so, Bindi Iwen and former Australian of the Year 42 00:02:31,160 --> 00:02:34,880 Speaker 1: Grace Tame have both described having to have surgery to 43 00:02:35,040 --> 00:02:39,720 Speaker 1: ease their pain, which Bindi said was insurmountable and Grace 44 00:02:39,760 --> 00:02:43,919 Speaker 1: Tame said was chronic. New research from the University of 45 00:02:43,960 --> 00:02:45,560 Speaker 1: Queensland from a couple. 46 00:02:45,280 --> 00:02:45,839 Speaker 2: Of weeks ago. 47 00:02:45,919 --> 00:02:48,480 Speaker 1: Even before this last week of headlines, there was new 48 00:02:48,480 --> 00:02:51,440 Speaker 1: research published a couple of weeks ago which found women 49 00:02:51,560 --> 00:02:55,840 Speaker 1: with endometriosis were seven times more likely to enter menopause 50 00:02:55,919 --> 00:02:58,440 Speaker 1: early than those without. And again, just to put it 51 00:02:58,440 --> 00:03:02,200 Speaker 1: into perspective, according to the Australian Institute of Health and 52 00:03:02,240 --> 00:03:05,240 Speaker 1: Welfare we'll come back to them later, around one in 53 00:03:05,360 --> 00:03:08,880 Speaker 1: seven women and girls in Australia have endometriosis. 54 00:03:09,120 --> 00:03:11,840 Speaker 3: And there are so many complexities here because there's obviously, 55 00:03:12,080 --> 00:03:14,640 Speaker 3: as you said, the pain and the chronic pain that 56 00:03:14,760 --> 00:03:17,679 Speaker 3: one can experience. But you also spoke about the fact 57 00:03:17,720 --> 00:03:20,400 Speaker 3: that it's so hard to diagnose that people have to 58 00:03:20,840 --> 00:03:25,320 Speaker 3: have surgical intervention to even know for sure that endometriosis 59 00:03:25,480 --> 00:03:27,920 Speaker 3: is what is going on and causing the pain that 60 00:03:27,960 --> 00:03:31,320 Speaker 3: for so many women can just be unexplained. Otherwise, what 61 00:03:31,560 --> 00:03:35,680 Speaker 3: can be done to treat endometriosis once it's been diagnosed. 62 00:03:35,200 --> 00:03:39,080 Speaker 1: So there's no cure per se, and as we've mentioned, 63 00:03:39,120 --> 00:03:41,560 Speaker 1: you might have to go in for surgery over time, 64 00:03:41,920 --> 00:03:46,160 Speaker 1: possibly several surgeries to remove tissue. There are medications you 65 00:03:46,200 --> 00:03:49,640 Speaker 1: can take that will limit the growth. There's one called Visan, 66 00:03:50,040 --> 00:03:53,800 Speaker 1: which the government added to the Pharmaceutical Benefit Scheme last year, 67 00:03:54,160 --> 00:03:56,680 Speaker 1: so that means a twenty eight day prescription will cost 68 00:03:56,840 --> 00:04:00,480 Speaker 1: you no more than thirty one dollars sixty And hormonal 69 00:04:00,480 --> 00:04:03,360 Speaker 1: birth control can for some people ease some of the 70 00:04:03,400 --> 00:04:06,960 Speaker 1: symptoms as well, but there's not like a vaccine or 71 00:04:07,000 --> 00:04:08,960 Speaker 1: a magic pill that makes it go away. 72 00:04:09,040 --> 00:04:10,520 Speaker 2: It can only be kind of mitigated. 73 00:04:10,800 --> 00:04:13,120 Speaker 3: Yeah, And one of the things that people talk about 74 00:04:13,200 --> 00:04:15,880 Speaker 3: is the fact that it is so under researched and 75 00:04:16,080 --> 00:04:20,119 Speaker 3: that there is so much that is not known about endometriosis, 76 00:04:20,160 --> 00:04:22,080 Speaker 3: which I think leads quite nicely into what the first 77 00:04:22,120 --> 00:04:26,600 Speaker 3: announcement this week was, which was about a new research institute. Yes, 78 00:04:26,640 --> 00:04:27,599 Speaker 3: can you talk me through that. 79 00:04:27,880 --> 00:04:28,120 Speaker 2: Yes. 80 00:04:28,200 --> 00:04:30,919 Speaker 1: So we learned earlier this week that the University of 81 00:04:30,960 --> 00:04:34,360 Speaker 1: New South Wales you and sw in Sydney, is going 82 00:04:34,360 --> 00:04:39,800 Speaker 1: to establish a world first endometriosis research institute. This institute 83 00:04:39,839 --> 00:04:43,080 Speaker 1: is going to focus on fast tracking and new understanding 84 00:04:43,240 --> 00:04:47,039 Speaker 1: of the condition and improving health outcomes to women who 85 00:04:47,040 --> 00:04:52,239 Speaker 1: have endometriosis. You and sw researcher Professor Jason Abbott said 86 00:04:52,440 --> 00:04:56,760 Speaker 1: the institute's quote, program driven scientific discoveries will pave the 87 00:04:56,760 --> 00:04:59,960 Speaker 1: way for generational change for anyone who has or no 88 00:05:00,320 --> 00:05:05,279 Speaker 1: someone with endometriosis. So that's a pretty big call. Professor 89 00:05:05,279 --> 00:05:09,240 Speaker 1: Abbott said he'd cared for people with endometriosis for thirty years, 90 00:05:09,560 --> 00:05:12,360 Speaker 1: and he said that experience had shown him, quote we 91 00:05:12,440 --> 00:05:15,800 Speaker 1: must go beyond the surgery and current medical treatments to 92 00:05:16,000 --> 00:05:18,440 Speaker 1: understand the disease processes. 93 00:05:19,040 --> 00:05:20,960 Speaker 3: We'll be back with the rest of today's deep dive 94 00:05:21,120 --> 00:05:29,200 Speaker 3: after a short message from our sponsor and Lucy Research. 95 00:05:29,240 --> 00:05:32,600 Speaker 3: Institutes are not traditionally cheap to set up. They are 96 00:05:32,720 --> 00:05:37,880 Speaker 3: expensive and the donation that has set up this foundation 97 00:05:38,240 --> 00:05:39,200 Speaker 3: has been huge. 98 00:05:39,320 --> 00:05:41,600 Speaker 1: Yes, it's fifty million dollars, which is a big chunk 99 00:05:41,600 --> 00:05:44,520 Speaker 1: of change. It's being dispersed over ten years, and it's 100 00:05:44,560 --> 00:05:48,320 Speaker 1: actually come from the Ainsworth family, who own one of 101 00:05:48,360 --> 00:05:53,159 Speaker 1: the world's largest gambling machine companies. This donation is believed 102 00:05:53,160 --> 00:05:57,320 Speaker 1: to be the world's biggest by a family to endometriosis 103 00:05:57,360 --> 00:06:00,560 Speaker 1: research and to women's Health in Australia. 104 00:06:00,760 --> 00:06:03,360 Speaker 3: Yeah, I've seen a lot of discourse online about that donation, 105 00:06:03,520 --> 00:06:07,159 Speaker 3: which you can read about. But really really interesting there. 106 00:06:07,640 --> 00:06:10,560 Speaker 3: So you said that was the first announcement, but then 107 00:06:10,880 --> 00:06:13,800 Speaker 3: later in the week it was really interesting timing. We 108 00:06:13,880 --> 00:06:17,920 Speaker 3: got all of this new data about endometriosis that now 109 00:06:17,960 --> 00:06:20,440 Speaker 3: tells us a fuller picture of what the state of 110 00:06:20,839 --> 00:06:22,839 Speaker 3: endometriosis in this country actually looks like. 111 00:06:22,960 --> 00:06:26,480 Speaker 1: Yes, the second headline we saw around endometriosis this week 112 00:06:26,640 --> 00:06:29,680 Speaker 1: was a big data drop from the Australian Institute of 113 00:06:29,680 --> 00:06:33,479 Speaker 1: Health and Welfare, who I mentioned earlier. The AIHW. It 114 00:06:33,560 --> 00:06:38,280 Speaker 1: collected data about how many women were hospitalized for endometriosis 115 00:06:38,440 --> 00:06:43,000 Speaker 1: and how many presented to the emergency room. The AIHW 116 00:06:43,160 --> 00:06:45,279 Speaker 1: found that in the twenty twenty two to twenty three 117 00:06:45,400 --> 00:06:49,960 Speaker 1: financial year, more than forty four thousand visits to hospital 118 00:06:50,120 --> 00:06:55,160 Speaker 1: were related to endometriosis. That's up from around thirty thousand 119 00:06:55,360 --> 00:06:58,440 Speaker 1: in twenty twelve twenty thirteen, so a big, big jump 120 00:06:58,520 --> 00:07:01,800 Speaker 1: over the course of a decade. The most compelling stat 121 00:07:01,839 --> 00:07:04,359 Speaker 1: for me looking over this starter and for our journalist 122 00:07:04,400 --> 00:07:06,880 Speaker 1: at tool a Rock, was that young women were the 123 00:07:06,880 --> 00:07:11,160 Speaker 1: most affected. Hospitalization rates. Among women age twenty to twenty 124 00:07:11,160 --> 00:07:13,760 Speaker 1: four actually doubled in that ten year period. 125 00:07:14,040 --> 00:07:17,040 Speaker 3: I find that really interesting because when we wrote about 126 00:07:17,120 --> 00:07:20,000 Speaker 3: the research Institute, I was looking through the media release 127 00:07:20,040 --> 00:07:22,040 Speaker 3: that was sent to us about that, and there was 128 00:07:22,080 --> 00:07:24,559 Speaker 3: a line specifically in that media release that spoke about 129 00:07:24,600 --> 00:07:29,000 Speaker 3: older women and their experience with endometriosis and how prevalent 130 00:07:29,160 --> 00:07:33,040 Speaker 3: it is for a certain age group. But now are saying, wow, 131 00:07:33,160 --> 00:07:36,320 Speaker 3: we are looking at double in a young cohort. 132 00:07:36,640 --> 00:07:39,000 Speaker 1: I wonder if, and this is just pure speculation, I 133 00:07:39,080 --> 00:07:44,040 Speaker 1: wonder if it's young women who have now learned about endometriosis, 134 00:07:44,160 --> 00:07:46,920 Speaker 1: or you know, through kind of public awareness, have come 135 00:07:46,960 --> 00:07:49,480 Speaker 1: to understand it, being able to say no, I need 136 00:07:49,520 --> 00:07:50,400 Speaker 1: to go to the hospital. 137 00:07:50,440 --> 00:07:51,200 Speaker 2: I know what this is. 138 00:07:51,400 --> 00:07:55,640 Speaker 1: Yeah, pure speculation, but certainly the AIHW has said that 139 00:07:55,760 --> 00:07:57,680 Speaker 1: people are more aware of the condition than they were 140 00:07:57,720 --> 00:07:58,280 Speaker 1: ten years ago. 141 00:07:58,480 --> 00:07:59,200 Speaker 3: That makes sense. 142 00:07:59,400 --> 00:08:02,119 Speaker 1: Additional, we learned that in the twenty twenty three twenty 143 00:08:02,120 --> 00:08:07,080 Speaker 1: four financial year they were close to five thousand endometriosis 144 00:08:07,120 --> 00:08:09,440 Speaker 1: related presentations. 145 00:08:08,680 --> 00:08:12,120 Speaker 2: To the emergency department, and around three. 146 00:08:12,000 --> 00:08:14,920 Speaker 1: Quarters of those were assessed as needing to be seen 147 00:08:15,000 --> 00:08:16,720 Speaker 1: by a doctor within half an hour. 148 00:08:16,840 --> 00:08:18,720 Speaker 3: Shows you how acute the pain is. 149 00:08:18,840 --> 00:08:19,720 Speaker 2: Yeah, exactly. 150 00:08:20,320 --> 00:08:24,320 Speaker 1: Overall, across all women, the number of hospital admissions over 151 00:08:24,320 --> 00:08:28,720 Speaker 1: that period related to endometriosis has increased by fifty four percent, 152 00:08:28,840 --> 00:08:30,200 Speaker 1: so again another big jump. 153 00:08:30,320 --> 00:08:33,199 Speaker 3: Yeah, so across the board. Clearly there is a huge 154 00:08:33,240 --> 00:08:36,240 Speaker 3: increase there. You kind of spoke to this a bit earlier, 155 00:08:36,240 --> 00:08:38,520 Speaker 3: but we'd love to know more about was there any 156 00:08:38,559 --> 00:08:43,440 Speaker 3: information beyond knowledge of the issue that perhaps contributed to 157 00:08:43,559 --> 00:08:44,680 Speaker 3: these increased rates. 158 00:08:44,880 --> 00:08:45,160 Speaker 2: Yeah. 159 00:08:45,240 --> 00:08:50,600 Speaker 1: The AIHWU did note that diagnosis rates are going up overall, 160 00:08:50,720 --> 00:08:54,960 Speaker 1: so again just kind of speaking to that greater understanding. However, 161 00:08:55,400 --> 00:09:00,600 Speaker 1: it did say endometriosis is historically underrecognized and that there's 162 00:09:00,640 --> 00:09:04,280 Speaker 1: still an average of between six and eight years between 163 00:09:04,320 --> 00:09:07,600 Speaker 1: onset of symptoms and diagnosis, which I think you would 164 00:09:07,600 --> 00:09:10,680 Speaker 1: agree is a long time to live with unexplained chronic pain. 165 00:09:10,920 --> 00:09:14,240 Speaker 3: Yeah. Absolutely, And Lucy, earlier you mentioned that the government 166 00:09:14,320 --> 00:09:17,000 Speaker 3: had subsidized a medication for ENDO. 167 00:09:17,320 --> 00:09:17,600 Speaker 1: Yeah. 168 00:09:17,600 --> 00:09:20,520 Speaker 3: I'm curious to know if they are doing anything else 169 00:09:20,640 --> 00:09:23,640 Speaker 3: in this space, given the rapid increase that we are 170 00:09:23,679 --> 00:09:26,920 Speaker 3: seeing and hearing about when it comes to diagnoses and 171 00:09:27,120 --> 00:09:28,520 Speaker 3: presentations to hospitals. 172 00:09:28,640 --> 00:09:30,320 Speaker 1: Yeah, I mean it makes sense that we would be 173 00:09:30,400 --> 00:09:32,440 Speaker 1: wondering about what the government would be doing to something 174 00:09:32,520 --> 00:09:36,199 Speaker 1: that affects one in seven Australian women and girls. So 175 00:09:36,440 --> 00:09:42,040 Speaker 1: two successive governments have taken steps towards investigating and treating endometriosis. 176 00:09:42,400 --> 00:09:46,360 Speaker 1: The previous coalition government actually in twenty eighteen created a 177 00:09:46,400 --> 00:09:50,520 Speaker 1: Federal Action Plan. It was aimed at improving diagnosis rates, 178 00:09:50,880 --> 00:09:54,920 Speaker 1: treatment and support for those living with endometriosis and pelvic 179 00:09:54,960 --> 00:09:58,880 Speaker 1: pain in twenty twenty four, so last year, the Labor 180 00:09:58,920 --> 00:10:01,960 Speaker 1: government that was elected in twenty twenty two provided an 181 00:10:02,040 --> 00:10:03,839 Speaker 1: update on this plan. Because it was the sort of 182 00:10:03,880 --> 00:10:06,839 Speaker 1: thing that carries over regardless of who's in government. It 183 00:10:06,920 --> 00:10:10,679 Speaker 1: said it had allocated budget funding for early intervention to 184 00:10:10,760 --> 00:10:14,679 Speaker 1: support patients and to improve access to medical scans like 185 00:10:14,880 --> 00:10:17,760 Speaker 1: MRIs to help people understand what's going on. 186 00:10:17,880 --> 00:10:18,120 Speaker 3: Yeah. 187 00:10:18,120 --> 00:10:21,880 Speaker 1: The government has also appointed an advisory group to guide 188 00:10:21,920 --> 00:10:25,560 Speaker 1: where funding should go and where research should focus. And 189 00:10:26,080 --> 00:10:31,280 Speaker 1: as a practical measure, it's opened twenty two pelvic paying 190 00:10:31,320 --> 00:10:32,600 Speaker 1: clinics around the country. 191 00:10:32,760 --> 00:10:34,199 Speaker 3: Oh yeah, I remember that announcement. 192 00:10:34,520 --> 00:10:37,840 Speaker 1: Yes. At the last budget in March which I was 193 00:10:37,920 --> 00:10:41,600 Speaker 1: there to look over the document, the government set aside 194 00:10:41,600 --> 00:10:46,040 Speaker 1: funding for eleven more and Finance Minister Katie Gallaher told us. 195 00:10:45,960 --> 00:10:48,360 Speaker 2: At the time that it's something that the government takes seriously. 196 00:10:48,480 --> 00:10:51,760 Speaker 3: Yeah, really interesting, Lucy, thank you for explaining that. As 197 00:10:51,800 --> 00:10:55,559 Speaker 3: you've said, it clearly affects so many people across the country. 198 00:10:56,120 --> 00:10:58,720 Speaker 3: If you yourself don't experience it, the chances are that 199 00:10:58,760 --> 00:11:00,440 Speaker 3: you do know a woman in your life who is 200 00:11:00,520 --> 00:11:04,360 Speaker 3: experiencing that sort of pain. So really useful for us 201 00:11:04,360 --> 00:11:06,559 Speaker 3: to understand the state of play and what's being done 202 00:11:06,600 --> 00:11:08,880 Speaker 3: about it. So thank you so much. Thanks Aarah, thank 203 00:11:08,880 --> 00:11:11,439 Speaker 3: you for joining us for another week of the Daily os. 204 00:11:11,480 --> 00:11:14,440 Speaker 3: We'll be back later today with the headlines, but until then, 205 00:11:14,600 --> 00:11:15,559 Speaker 3: have a great Friday. 206 00:11:19,720 --> 00:11:22,040 Speaker 1: My name is Lily Madden and I'm a proud Arunda 207 00:11:22,240 --> 00:11:27,040 Speaker 1: Bungelung Caalcutin woman from Gadighl country. The Daily oz acknowledges 208 00:11:27,120 --> 00:11:29,280 Speaker 1: that this podcast is recorded on the lands of the 209 00:11:29,320 --> 00:11:32,880 Speaker 1: Gadighl people and pays respect to all Aboriginal and Torres 210 00:11:32,880 --> 00:11:35,800 Speaker 1: Strait Island and nations. We pay our respects to the 211 00:11:35,800 --> 00:11:38,600 Speaker 1: first peoples of these countries, both past and present.