WEBVTT - Australia’s endometriosis problem

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<v Speaker 1>My name is Lily Maddon and I'm a proud Arunda

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<v Speaker 1>Bunjelung Calcotin woman from Gadighl country. The Daily oz acknowledges

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<v Speaker 1>that this podcast is recorded on the lands of the

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<v Speaker 1>Gadighl people and pays respect to all Aboriginal and Torres

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<v Speaker 1>Strait Island and nations. We pay our respects to the

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<v Speaker 1>first peoples of these countries, both past and present.

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<v Speaker 2>Good morning and welcome to the Daily os. It's Wednesday,

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<v Speaker 2>the twentieth of September. I'm Zara, I'm Sam. The rate

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<v Speaker 2>of endometriosis hospitalizations has doubled for women age twenty to

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<v Speaker 2>twenty four in the last decade, but it's still taking

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<v Speaker 2>on average up to eight years to receive a diagnosis.

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<v Speaker 3>People passing out on the bathroom floor due to their

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<v Speaker 3>pain and they're told that period pain is normal and

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<v Speaker 3>you just need to get used to it or you

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<v Speaker 3>need to manage it better.

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<v Speaker 2>In the Deep Dive, we'll explain how prevalent endometriosis actually

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<v Speaker 2>is and what's being done to help people manage the disease.

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<v Speaker 2>Ju Sam, we have a group of Polleys traveling overseas.

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<v Speaker 4>That's right, there's a group headed to Washington today and

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<v Speaker 4>their calling for the release of Julian Sange. Federal ministers,

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<v Speaker 4>including National MP Barnaby Joyce, Independent MP Menique Ryan and

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<v Speaker 4>Green Senator David Shubridge, will lobby American lawmakers to reconsider

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<v Speaker 4>extraditing the Australian citizen from the UK to face criminal

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<v Speaker 4>prosecution in the US. Assange is facing serious charges relating

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<v Speaker 4>two thousands of historic leaked classified documents.

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<v Speaker 2>Single job seeker payments will increase by fifty six dollars

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<v Speaker 2>from today. The increase comes into effect after it passed

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<v Speaker 2>through the Federal Parliament earlier this year. Single job seeker

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<v Speaker 2>recipients will now receive seven hundred and fifty dollars each fortnight.

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<v Speaker 2>Parenting and pension payments are also going up from today.

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<v Speaker 4>The Bureau of Meteorology has officially declared an El Nino

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<v Speaker 4>weather event is underway. Certainly feels like it. El Nino

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<v Speaker 4>brings warmer, drier condition and can also result in a

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<v Speaker 4>higher bush fire risk and increased likelihood of drought. It

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<v Speaker 4>comes after three consecutive summers of increased rainfall caused by

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<v Speaker 4>a La Nina weather pattern, and the.

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<v Speaker 2>Good news an Australian made drug used to treat symptoms

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<v Speaker 2>of a rare blood cancer, has been approved for use

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<v Speaker 2>in the US. The drug treats anemia caused by myolofibrosis,

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<v Speaker 2>which is a cancer affecting twenty five thousand Americans. So

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<v Speaker 2>hope the drug can establish a new standard of care

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<v Speaker 2>for treating myolofibrosis. Before we go into a discussion about endometriosis,

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<v Speaker 2>I do just want to make a quick comment about

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<v Speaker 2>the language that we are using today. We recognize that

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<v Speaker 2>endometriosis can affect women and girls, it can affect transgender people,

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<v Speaker 2>non binary people, and gender diverse people. In the report

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<v Speaker 2>that we are referencing, the AIHW didn't specifically reach out

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<v Speaker 2>to those groups, so we will be relying on the

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<v Speaker 2>language used in this report for today's deep dive before

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<v Speaker 2>we go into the prevalence of endometriosis. Yeah, I want

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<v Speaker 2>to ask you, and this is not a gotcha question,

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<v Speaker 2>what do you understand about endometriosis? What do you think?

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<v Speaker 4>It is definitely not enough, But what I think it

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<v Speaker 4>is is a condition that means you have extremely painful periods.

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<v Speaker 2>That is definitely part of it. So it is essentially

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<v Speaker 2>a disease where tissue that is similar to the lining

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<v Speaker 2>of the uterus actually grows in other parts of your body,

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<v Speaker 2>and so that can be responsible for things like you

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<v Speaker 2>just said, like painful periods, but it can also be

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<v Speaker 2>responsible for fertility issues. You know, some people don't experience

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<v Speaker 2>a lot of symptoms, while others experience that severe pain,

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<v Speaker 2>heavy and irregular mental bleeding, bloating, fatigue, anxiety, depression, and

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<v Speaker 2>a whole host of other symptoms. And I think the

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<v Speaker 2>reason that I wanted to ask you is because it

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<v Speaker 2>is so common.

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<v Speaker 4>I do have to say again, from my perspective, I've

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<v Speaker 4>noticed an increase in conversations about it, particularly on social media.

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<v Speaker 4>How prevalent is endometriosis in Australia.

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<v Speaker 2>Again, like many other issues in the kind of women's

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<v Speaker 2>health realm, there is a lot to still be done

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<v Speaker 2>in terms of how we report and how we understand this.

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<v Speaker 2>But what we do know is that, according to data

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<v Speaker 2>from the Australian Institute of Health and Welfare that we

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<v Speaker 2>got earlier today, around fourteen percent of women aged forty

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<v Speaker 2>four to forty nine are estimated to have endometriosis and

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<v Speaker 2>around eight point eight percent for twenty six to thirty

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<v Speaker 2>one year olds. And if we look at those figures.

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<v Speaker 2>What that tells us is that there's actually an increase

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<v Speaker 2>in the likelihood of endometriosis diagnosis as women get older,

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<v Speaker 2>with the passing of time and so on average, the

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<v Speaker 2>report actually says it takes up to eight years for

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<v Speaker 2>someone to receive a diagnosis after first getting symptoms. Why

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<v Speaker 2>is that the case, I think because traditionally it's been

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<v Speaker 2>so hard to get a diagnosis, and as I said,

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<v Speaker 2>it affects many people. And we did ask our audience

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<v Speaker 2>for their experiences dealing with enemy triosis. Maya told us

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<v Speaker 2>it took over a decade of debilitating symptoms for her

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<v Speaker 2>to actually even receive a diagnosis.

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<v Speaker 1>In that time, I had been repeatedly given misinformation by

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<v Speaker 1>multiple doctors.

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<v Speaker 4>I had to wait until my mid.

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<v Speaker 2>Twenties to have surgery for admetriosis, and my life could

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<v Speaker 2>have been a lot easier and a lot less painful

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<v Speaker 2>if I'd been able to get that diagnosis earlier. So

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<v Speaker 2>we heard from Maya how hard the process of getting

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<v Speaker 2>a diagnosis can be. But this isn't unique to just

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<v Speaker 2>her experience. This is Lucy who actually works at a

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<v Speaker 2>specialist endoclinic in WA and she's talking about why it's

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<v Speaker 2>so difficult to actually get a diagnosis.

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<v Speaker 3>Until recently, the only way to get formally diagnosed was

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<v Speaker 3>to undergo laparoscopic surgery, which is where essentially doctors cut

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<v Speaker 3>open the abdomen of people with ENDO and visualize the

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<v Speaker 3>endometriosis lesions.

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<v Speaker 2>Lucy says that the lack of diagnostic options has actually

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<v Speaker 2>just left people in chronic, debilitating pain.

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<v Speaker 3>Do you know, I've heard stories of people passing out

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<v Speaker 3>on the bathroom floor due to their pain, not being

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<v Speaker 3>able to go to work and missing school days, and

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<v Speaker 3>then going to an ed and presenting with this awful pain,

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<v Speaker 3>and they're dismissed for drug seeking behavior by doctors or

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<v Speaker 3>told that period pain is normal and you just need

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<v Speaker 3>to get used to it, or you need to manage

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<v Speaker 3>it better, which just completely invalidates the experiences of these

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<v Speaker 3>people and breeds a huge distrust in the medical system,

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<v Speaker 3>which is really damaging to these people.

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<v Speaker 2>Things have begun to shift, though, that's according to Lucy,

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<v Speaker 2>who says that that's in part due to the diagnosis

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<v Speaker 2>process at clinics like the one where she works.

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<v Speaker 3>It's now shifted towards the clinical diagnosis, which is a

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<v Speaker 3>combined set of history, symptoms and any management strategies, which

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<v Speaker 3>has improved the diagnostic process and that people don't have

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<v Speaker 3>to have an invasive surgery in order to get diagnosed

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<v Speaker 3>and to be taken seriously with this disease.

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<v Speaker 2>Lucy works at one of the twenty two who federally

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<v Speaker 2>funded endometriosis clinics in the country, and they're based in

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<v Speaker 2>pre existing GP clinics, but they're designed to provide specialist

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<v Speaker 2>care for people who have endometriosis. In order for real change, though,

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<v Speaker 2>Lucy says, we need more investment in research.

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<v Speaker 3>We need to figure out what causes it. We need

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<v Speaker 3>to figure out what causes flare ups and exacerbates people's symptoms,

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<v Speaker 3>and then from there maybe we can introduce some preventative

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<v Speaker 3>treatment for people that are increase risk and find a cure.

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<v Speaker 2>There are currently some research projects underway in Australia and

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<v Speaker 2>I know we spoke about one of them recently. As

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<v Speaker 2>the good news on this pod. Federal government has committed

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<v Speaker 2>around twenty nine million dollars to research the issue since

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<v Speaker 2>twenty eighteen, and that includes projects that are specifically designed

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<v Speaker 2>to combat the issue we're talking about, which is the

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<v Speaker 2>diagnosis process and also the treatment of ENDO. This research

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<v Speaker 2>will also look at things like diet and exercise in

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<v Speaker 2>genetics and try to learn more about how people can

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<v Speaker 2>actually best manage and identify endometriosis in the meantime, while

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<v Speaker 2>we wait for more information about this disease. If you're

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<v Speaker 2>in need of endometriosis care, or you know, listening to

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<v Speaker 2>this or reading about endometriosis, you think that this might

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<v Speaker 2>be something that you're suffering from, Lucy recommends looking up

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<v Speaker 2>where the closest ENDO clinic might.

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<v Speaker 4>Be to you. Zara podcast that I listened to from

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<v Speaker 4>the New York Times is coming to mind. It's called

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<v Speaker 4>The Retrievals, and in that podcast they talk about the

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<v Speaker 4>IVF clinic at Yale University where a number of women

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<v Speaker 4>were expressing the fact that they had excruciating pain after

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<v Speaker 4>IVF procedures and doctors just didn't really believe them. And

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<v Speaker 4>it turned out that there was a nurse who was

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<v Speaker 4>pocketing the pain relief and the pain relief was not

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<v Speaker 4>actually getting to the women. But it took something like

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<v Speaker 4>a dozen women to actually get an investigation. Now, all

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<v Speaker 4>of this research has happened around ENDO is part of

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<v Speaker 4>the issue here that women just aren't being believed about

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<v Speaker 4>their pain.

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<v Speaker 2>Yeah, I mean, I think that's definitely part of it

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<v Speaker 2>is that you know, for so long, I mean, we

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<v Speaker 2>talk about the rising rate or diagnosis of endometriosis, and

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<v Speaker 2>I don't think more people have endometriosis. I think we're

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<v Speaker 2>just finally finding a name for what has otherwise just

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<v Speaker 2>been excruciating pain that women lived through. And you know,

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<v Speaker 2>when you go to a doctor and talk about excruciating

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<v Speaker 2>period pain, we are now finding the vocabulary to describe

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<v Speaker 2>that that isn't normal, that that is not something that

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<v Speaker 2>you live with, that that is actually a disease that

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<v Speaker 2>has a formal diagnosis and a formal care plan.

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<v Speaker 4>I just want to particularly thank our listeners who contributed

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<v Speaker 4>to this episode, but also those people who sent in

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<v Speaker 4>voice notes and we didn't include in this episode. Your

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<v Speaker 4>contributions really bring these stories to life and as part

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<v Speaker 4>of what makes the Dailios so special. Thank you to

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<v Speaker 4>everyone for listening to this episode of the podcast. We'll

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<v Speaker 4>be back again tomorrow. Until then, have a great day.