RECORDED Thu 10 Apr 2025
SUMMARY KEYWORDS
Endometriosis, school connections, complex health conditions, pelvic pain, diagnosis delay, qendo app, pelvic pain program, mental health, stigma reduction, school attendance, chronic conditions, health education, community support, policy change, federal funding.
SPEAKERS
Megan Gilmour, Jessica Taylor
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need. Hi, I’m Megan Gilmour, MissingSchool, Co-founder and CEO, and this is Live and Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening. Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys despite complex health challenges.
Today, we have with us Jessica Taylor. Jessica is an experienced CEO, director and expert advisor across commercial, public and not for profit sectors and in consumer engagement, governance and strategic communication. A passionate advocate for endometriosis, she has shaped state and national action through the National Action Plan, the QENDO app, along with key research initiatives. Jessica continues to advise on endometriosis policy in Australia. Welcome Jessica. We’re excited to have you on Live and Learn.
Jessica Taylor 01:39
Thank you so much for having me, Megan and talking about endometriosis on this podcast.
Megan Gilmour 01:46
Our absolute pleasure. So today we’re here to talk about supporting school connections for students with complex medical and or mental health conditions. So, let’s head into my first question. Jess tell us how endometriosis impacts kids and why it’s something every Australian needs to know and care about.
Jessica Taylor 02:10
Well, what we do know is that endometriosis is really common, and it’s not a newly, a new disease, but it’s a newly spoken about disease, and we know that kids as young as eight or nine years old are experiencing the symptoms of endometriosis, and that kids are also getting their periods earlier and earlier, and we’re seeing some generational changes in terms of mums would have the disease go undiagnosed for decades, and they’re seeing that in their young, younger children.
And we also know that, like I’ve said, endometriosis is a really complex condition. So whilst it can start, you know, as someone starts their menstrual cycle, it can really kick off in terms of some of the symptoms. So, some people experience pelvic pain, they might have brain fog, they might have a hormonal migraine. So, every cycle, there’ll be a headache or a migraine, and the symptoms can present really differently for every individual. Endometriosis itself, by definition, is where tissue that is similar to the lining of the uterus is found in other parts of the body. And as of 2021, endometriosis lesions have been found in every organ in the body, so it’s not just confined to the pelvis. And this is really significant, because it has for a really long time, had a focus on the lesions in the body, and those symptoms like difficulty going to school because they might have heavy bleeding, or participating in sport, or getting their assignments done because they’re in loads of pain, participating in swimming competitions, even actually getting up and going to school because they’re living with these symptoms, can be quite difficult.
And so what we also know is that people who understand what is normal and what isn’t normal very early on, they have a really good benchmark to check themselves and say, okay, this is not quite normal. What I’m experiencing. It may be common, but it’s not normal, right? And so then they can start to ask some questions and get help. And if we can help individuals early, then the progression of the disease is thought to not be as significant, but they’re also getting answers. They’re going to see the, what we call a multi-disciplinary team a lot earlier on, and that’s really what you need for a disease like endometriosis, a team around you.
Megan Gilmour 04:39
Wow. What an opening and some shocking things there for me, the change in age or the earlier onset, the fact that children are getting their periods earlier or menstruating earlier than, or the start of that menstruation is earlier and that endo, endometriosis can be found now in organs right throughout the body. So, we’re going to dig deeper into some of those things that you raised at the beginning. So many people probably assume things about endo. What’s the million dollar question you get from parents or loved ones when their child experiences or is diagnosed.
Jessica Taylor 05:23
We hear this often, and we have a beautiful team of people who answer these questions often. And when parents raise this, they they often will come, they’ll be sitting in two camps. One will have that experience of endometriosis, so they’ve lived it themselves, or a family member has lived through the disease, and they’ve seen such destruction to that someone’s, that individual’s life, and so they’re really concerned about that happening to their child, and so unpacking that and really encouraging them to know, well, you’ve you’ve walked down this path, you understand what not to do, and let’s look at what we should do, right? So they definitely come to us with those questions all the time.
And for those parents who, or loved ones who, have really no idea, they just want to, they just want to take the pain away from their kids, right? That’s what we do. I’m a mum. I’ve got two kids. You just don’t want them to go through it, and when it’s a lifelong chronic condition that there is no cure that’s so difficult for people to wrap their head around, and it can be a really dark place as well. And when you go online, you can read what we call the big endo stories. They’re really big, they’re really significant, and individuals have struggled significantly.
But that’s not everyone’s story, and particularly if some people can identify those symptoms early and get on to management early, then hopefully we don’t get to those really big, significant stories. And so what we do is we try and have an open discussion with them. What’s going on? What are you are you struggling with school? Are you struggling with your ability to go back to sport, to socialise? Is there particular times in the month that someone’s really suffering and encouraging dads and mums and brothers and sisters to know where the heat packs are, or be educated about endometriosis, and that really can reduce that isolation that a lot of students feel, a lot of kids feel, because often, and I’m someone with that has I live with endometriosis. I have a lived experience. I remember being in school where no one spoke about periods. My friends, it was just like we never even had them. We just pretended we didn’t have them. And I would faint in class often and really have no idea. So I would be constantly visiting the school nurse who really also didn’t have an idea. And so that’s a really common occurrence for people, and when people aren’t sharing their stories, letting their families know, or parents and family members asking how they’re going. That, I guess, just embeds that stigma. So we want to reduce the stigma around periods and painful periods, so that people can crack open those conversations and start to look at, okay, well, what you’re experiencing is common, but not normal. Let’s get on some, I guess the next steps of what we do, and that’s what we are here to really help people with as well.
Megan Gilmour 08:26
Yeah, amazing. So, what’s the most important thing that you want them to know in a sentence?
Jessica Taylor 08:33
Look, periods are so different for everyone. And what I really would like people to know is at the very baseline. If people aren’t able to manage period pain with a simple Panadol, Neurofen and a heat pack, then we need to look into what’s going on here. It may be endometriosis, but it may also be pelvic pain, or it may be the start of PCOS or adenomyosis, and so periods that are painful aren’t normal. You know what? Every everyone has always lived with that, that period pain. But if it, if it is stopping someone from going to school, going into sport, socialising, and it becomes a cyclic event or occurrence. And this is why we built the QENDO app, so that people could start tracking what was going on for them. And some people with endometriosis do not have a period because they might be taking a hormonal medication. So the regular period tracking apps were useless because they didn’t have a period to track. So we built the QENDO app with amazing consumers and family members, and it’s a tracking out based on their symptoms. So for people who may be on a hormonal medication like the pill or a conscious other contraceptive medications, they might experience something like a cyclic headache, or they may get some stomach pains or hip pain in a. Particular time of the month, and so at the very baseline, like I said, if someone’s not able to manage with a simple heat pack, ibuprofen or Panadol, then we need to ask questions and dive in deeper.
Megan Gilmour 10:14
Yes, so not all pain is the same. We’d love to know, if you’re willing to share, what brought you into the world of endo>
Jessica Taylor 10:26
That’s a really good question. Oh, goodness me, I remember fainting at school a lot and really struggling with that. And I I grew up in a little rural town and then moved to Brisbane and started uni, and I was really struggling at uni, and I was fainting in the labs, and honestly, what my symptoms, I really thought were normal. I remember when I first got my period, I was in high school, and I went to my mom and said, Is this normal? And she said, yeah, that’s normal. Turns out she also has endometriosis and adenomyosis, so she normalised it, too.
And that’s also a really common story we hear from mums who have, having gone through a diagnosis path or journey with their daughter, they realise, oh, wow, these are the symptoms that I’ve had all my life as well. And so I saw a lot of GPsI saw 11 GPs, actually, because I had a lot of a lot of heavy bleeding, but also some cyclical headaches and migraines and bleeding from my mouth, and real things that just weren’t quite right.
I remember presenting to an emergency department, and it was the third time within a short period of time, and one of the junior doctors recognised me and said, Hey, I don’t think something’s I think something’s going on here that’s a little bit more than what we think. They thought it was my appendix. They were going to take me to have my appendix removed, and it was just so difficult, because when you don’t have the language around or even know the word endometriosis back then you’re just giving all of these abdominal pain symptoms, and having, I lived with it for at that stage, many, many years.
So I had also normalised it, but I knew something was shifting, and there was new symptoms coming or they were worsening. I’ve since had two kids and had natural births, and I can hand on my heart say the feelings of that pain of endometriosis is like a contraction, and that’s what I genuinely have felt, and it was really confirmed when I went through labour twice, and so I was going through the path of being, you know, working out what all this meant.
And one GP said to me, Oh, Jess, you know, are you really sure you’re in this amount of pain? Are you sure? Are you really sure? And I thought, Okay, right? Maybe I am going insane, I don’t know. And so, they referred me to a psychologist, and I remember sitting in that psychologist room, sitting on her chair, and my body was in a pain flare, and I was clammy, and my heart was racing, and my stomach was just contracting this contraction. And and she looked at me, and she said, there is absolutely something physiologically going on with you we need to get due to emergency. And she said, you know you are sat, you are sound, you are not going insane. You have something inside that’s not okay.
So that gave me confidence that, okay, I need to really push on this. And I went to a different GP, not the normal one that I had been going to, and she just looked at me and she said, Oh, okay, well, let’s get a referral. And I had actually been at a family barbecue, and my sister-in-law had just had a hysterectomy for something called endometriosis, and I had no idea at that stage what it was. And I said, what is that? So, she told me her symptoms. And you know, whilst there is no cure for endometriosis and a hysterectomy is definitely not a cure, that’s the path that she had gone down.
And so, I started Googling, went to my back to that GP. I said, can you get that referral to a gynecologist? And say, look at look at endometriosis. Two weeks later, I was in surgery, confirmed with endometriosis, and I called the QENDO helpline, and I just needed help. I needed someone to sit with me and help me understand I was, I don’t even think I was 20 yet, and I was at uni trying to work out the world. My parents, as supportive as they are, they had no idea either, and I hadn’t just come across this, this word. So, I found the QENDO helpline, and one of the founding members spoke to me for over an hour, and made sense of my entire life. They gave me, they gave me an understanding of every symptom that I had ever experienced, and they tapped me into this community of other women and family members who also had lived through these exact stories, or similar stories to mine. And so yeah, six weeks later, I joined the organisation, and I took it over, and have been here since.
Megan Gilmour 15:25
Wow. What a journey. And I imagine it’s, it’s a similar journey, apart from starting national policy change and all of the rest of it, but a similar journey for so many people who lived with it for years. And I hear you mentioned that your sister-in-law was treated for it so people within this close proximity, and you also mentioned your mum, and yet, though, the association of those symptoms was not being made even within a family setting. So that just shows how normalised period pain is, and yeah, it’s quite extraordinary to hear, hear the length of that journey. Thank you so much for being open to sharing it.
Jessica Taylor 16:15
Absolutely, and I hear that same story or a similar chapter of that story every day. The women and the people who come and advocate for endometriosis, they have really gone through some significant barriers in in any inequities, and they you just get a different fire in your belly. And I have a daughter who’s seven, and I just cannot have her or her generation go through what we did, and I think that’s what keeps us going and firing.
For us, it’s when you realise what it is, and when you realise how many women. So in Queensland, it’s one in six. Nationally, it’s one in seven from ages 44 to 49 or one in nine outside of those age gap age groups. It’s just so many people. It’s more common than asthma and diabetes or breast cancer. It’s as common as breast cancer. So, it just fires us to, yeah, push that conversation and reduce that stigma, which, when you have a stigmatised issue, it stops care, it stops access to information. And so, yeah, there’s a big group of, there’s an army of people out there who are really working on this, and it’s significantly grown in the 12 years that I’ve been working in this space,
Megan Gilmour 17:41
I don’t doubt that, and I just want to almost skip to my very last question now, but I have to wait and go through all of the other ones. But those stats are incredible, and as is the lived experience. And I heard within your story, to the gaslighting of you know, is this really true? And for anyone out there who’s listening to this, who has had a natural delivery in childbirth, to compare this pain to contractions, should really put a frame around what it feels like. I certainly understand more now. So that comparison is a stark one, and I want to pick up on something you said a moment ago about your daughter; knowing all you know, what’s your biggest hope for kids with endo and their families and loved ones. When, when navigating this journey,
Jessica Taylor 18:45
We’re still on school holidays at the moment, and she’s grown up with me being in this space. And in fact, when I was pregnant with her, and when I just had her as a brand new mum, I was down in parliament with her breastfeeding in Parliament, one of the first women to do that, you know, to get that, just get the rights for women and just that next generation across. And I took her to a couple of meetings with me yesterday about endo. And, you know, the person I was meeting with couldn’t pronounce the word endometriosis, and she she said, No, it’s not. It’s not. That’s not how you pronounce it. It’s pronounced endometriosis. And so that’s my seven-year-old, and I was just so proud of her. And I, my hope for that generation is to know the word, because when you know the name, you can research, you can Google, not that I suggest that, but you can start to understand and try and you know, I guess for a lot of people, it’s been a door that they never knew existed. And then they hear the word and they know there’s a door there, they can open the door and go and find out everything that they need to. So, whilst endometriosis is genetic, there’s a genetic component to it, whilst there is no cure, there are management options and managed well with the team around you, like I’m here today, you know, it’s a lifelong thing, but you can succeed and live a really successful and well life with good quality of life, if you know what you’re dealing with earlier. So, my yeah, my hope for this generation is to just know the name, and that in itself, I think, will open so many doors that generations before them never knew existed.
Megan Gilmour 20:34
Absolutely and the shifts that come with it, in terms of women’s health, in terms of women not just having a different version of a male body, and what that actually means for schools, for workplaces, for treatments, for, you know, scientific discovery and thanks for sharing too, that it does have a genetic component. I meant to ask that earlier when you mentioned your mum, so that’s also important to understand. Jess, how many Australian children and youth are living with endometriosis right now?
Jessica Taylor 21:11
So a wonderful program called the PEPP Program, which is the periods endometriosis and pelvic pain program, is a schools program that goes into schools and talks to students of all genders, depending on what the school is needing, about period pain and endometriosis and so their recent only of just a couple of months ago, they published a paper that said that 52.6% of students reported regular, severe period pain. So over half, over half of our students are reporting regular severe period pain, and 23% of those students reported regularly missing school or work because of their period. These numbers are really high. They’re really high, and you can only imagine what that’s going to do to that individual schooling, education, but even their competence and their agency in life, absolutely, if they’re held back by these issues.
Megan Gilmour 22:13
Yeah, yeah. Well, to put some perspective around that, there’s 4 million Australian school children. So, we’re talking about 2 million who experience pain or, or even if it’s 50% or half of that population and 23% who are missing school. We talk about up to 30% of kids with all conditions missing school for health reasons, for serious health reasons. So, if there’s 23% in the endo category, I’m just going to say that our number is vastly underestimated, and we don’t have the data on this. This is one of the issues, but it’s, you know, we argue that our estimates are, are under underestimates. And I think every time we talk to an organisation like yours in the health consumer space, it reinforces that those, those numbers of kids missing a lot of school are much higher than we suspect
Jessica Taylor 23:22
That’s right, and there are so many comorbidities, right? And so many other conditions that people are living with. There’s that, that mental load in the isolation and the brain, the brain fog, the migraines, but the other issues like they might have some sort of neuro processing disorder that’s quite prevalent in in these areas, or pelvic pain. They might not even have endometriosis, but they have all the symptoms and so persistent pelvic pain in itself is a diagnosis or adenomyosis. You know, our bodies as women, we’re complex. We’re beautifully and wonderfully complex, but that can be really difficult when you are trying to navigate these issues. And we know that we’ve also seen without a school education or without school aged children knowing about these conditions that leads to workplace concerns, fertility issues, or concerns about their ability to contribute, and you know, their economic wealth and portfolio that they are or are unable to create for themselves, and that sustainability or security and the flow on effect is huge. It’s so big. And I guess the focus on young people missing school needs a significant spotlight on it, because they’re our next generation. They’re the ones that are kind of carry us forward when we’re, you know, unable to do so.
Megan Gilmour 24:55
That’s right. And I might just throw in the fact that we’re in a pre-election in Australia, pre-election period. And all of the major crises are being talked about, but school attendance, which is in a crisis state at the moment, it’s not getting mentioned anywhere. And yet, you know, as you said, it’s the foundation for everything that comes in the future, and we just know how important it is, and that’s why we’re doing this work. I should move on to my next questions. So, is there a risk of delayed diagnosis?
Jessica Taylor 25:39
So currently there’s a six-and-a-half-year diagnosis delay, and that’s from the onset of symptoms. Now, when I first started working in this space, that diagnosis delay was up to 10 to 12 years. So, the work we’re doing is significantly shifting that diagnosis delay. And I say that because we’re doing something right. It’s working in some way, keep going. If anyone’s advocating or talking about Endo, it is working.
And so the six and a half years from diagnosis from symptom onset is a long time. Six and a half years, it’s still a long time. But it comes down to, I break it up into a few key areas as to the why? Why do we have a diagnosis delay? Well, one a lot of GPs, we work with fabulous GPs, who are really well across this issue, but the majority of GPs are not. And we’re really expecting a general practitioner to be a specialist in a lot of cases, and they just simply can’t be that person.
And so, when people do present to the GP, they’re still like they did with me. Are you sure you’ve got that pain? Are you sure that’s going on for you? We hear it again and again and again. So that’s an issue that contributes to the diagnosis delay. Second of all, people like I have said, don’t understand what the symptoms are and if it is normal or it isn’t normal. So, if someone is experiencing period pain or pelvic pain that can’t be managed with a simple ibuprofen or a heat pack or a Panadol, let’s get it checked out. Let’s start tracking it. Let’s start questioning it. People not knowing that their symptoms are abnormal, they’re common, but they’re abnormal also adds to the diagnosis delay.
Then we have a healthcare system that’s completely oversubscribed, and it costs money if you want to go private, and so you have wait lists for three to up to three years to even just speak with someone that adds the diagnosis, delay the cost. So having blood tests or scans or the only way to diagnose endometriosis currently is either through a laparoscopy with a very well-trained gynecologist, so not just your general gynecologist. They need to be something called AGES accredited. And secondly, we do have a new ability to detect deep infiltrating endometriosis, so where the lesions have infiltrated through the tissue on a new type of ultrasound. So, it’s not the general ultrasound, it’s a new type of technology with new training.
So again, we’re shifting, how does someone get diagnosed that’s not going under general anesthetic and having surgery? Because that’s so invasive for a lot of young children at school, they don’t want to have surgery, they can’t afford surgery, or so many other reasons, and that’s absolutely fair. So how else do we look to diagnose this? Can we do it through an ultrasound? And we’ve just recently done a huge piece of education around what does that look like? Why is it different to the general, you know, basic ultrasound out there? And we can start to through these new diagnosis tools start to map out, is the ovary attached to the bladder? Is, is the ovary allowed to you know, I like to describe ovaries as, you know, those flowing car sale balloon things and they just frolicking around. That’s what ovaries like to do, right? They like to just be free in the pelvic area, pelvic cavity. But when you have endometriosis, they’re often stuck, and there’s adhesions, and it’s just a complete mess. If you can imagine, like spiders do with their webs when they’re capturing something, just imagine that type of pelvic area with spider webs that are clear and, you know, their adhesion sticking things together incredibly uncomfortable, can be very painful, and so because we can’t see inside of our abdomen, we don’t know what’s going on in there, right?
And I’ll also point out, very importantly, that we have four stages or four levels of endometriosis, stage one, two, three, and four. Stage one is often where there’ll be some little dots or red lesions around the area, and that increases by the severity. So, stage four, in comparison, is where the bowel, the bladder, the ovaries are often all completely trapped together, there’ll be something, what we call chocolate cysts. So, there’s these huge cysts full of endometriosis, lesions collected together, which is really significant. It might be over the fallopian tubes, inside the ovaries, just a total mess. And what’s really interesting with endometriosis, if I may say that, is that the amount of disease someone has doesn’t equal the amount of symptoms that they’re living with. We hear from people all the time that they have stage four endometriosis, really significant disease in there, and they had no symptoms. They only found that out when they went to have went to try and have a baby years later, and they’re unable to conceive. They open them up in surgery, and there’s endo everywhere.
And so this is where an ultrasound can help, right? It can have a look at what are the ovaries doing? Is there any lesions on the bowel? What’s the bladder doing? And so, these pieces of the puzzle that we’re trying so hard to enable access to that patient or to that family, to give them, you know, a picture of what’s happening is very, very new. And so all of this is helping that diagnosis delay to reduce, and we often as in endo, are given as the example of, what can you do if you really raise the awareness about this condition? How do we shift that diagnosis delay? And we’ve done that significantly, halved it in only a few short years, but we have so much more to go, because six and a half years for one individual person is still way too long.
Megan Gilmour 32:05
Well, yes, and that’s such a you know, full background into the delays and the complexities within those delays, and the complexities about discovery and and, thank you so much for the work that you’ve done collectively to shift this. Because when we look at a child aged eight or nine, and it’s it’s there, and then we’re waiting up to seven years, and you know, now we have a teenager, and you know, we’ll get to this, the amount of school that could already be missed and the complications that occur. You mentioned some of those. You talked about socialisation, you talked about mental health issues and distress around it, and anxiety, and you know, all of the things that in you know would be a normal part of life, are getting disrupted constantly, not to mention carrying that pain load, which in itself is extraordinary. You mentioned siblings before, but this question covers peers as well. So how, how are siblings and peers of kids with endo impacted, and what should families be across there?
Jessica Taylor 33:27
So, I, I have three other siblings, and two of them are girls, and one of them’s a boy, and in my family, we didn’t know what was going on with me. And so, for them, without that education, it took them also a really long time to be diagnosed themselves. So, two of my sisters have endo as well. For this day and age, if there is someone who does have endometriosis and going through that journey, it can go one of two ways. It depends how parents handle things right, and we’re all learning, as a parent ourselves, what we what we know is that when there’s open conversations in the family about this is what a period is. This is what’s not normal. Having dads a part of that conversation, having brothers a part of that conversation, they are going to be someone’s partner, husband, dad, or whatever they choose in their life. When we crack open that conversation, they become allies, and they can know where the heat packs are. They know potentially not to bug the sibling at a particular time, and it just helps to reduce that stigma.
I remember my when I was diagnosed. I’m a little bit older than my siblings and my parents, sat them all down and said, this is what Jess has. This is what she’s learnt. And I gave them some education. And my younger brother, he was 12 at the time, he had a girlfriend, and he said to her, I think you have this too. So they have a role to play, the siblings and the peers when we have gone before the PEPP Program was in place, that schools program, we used to go out to schools all the time, and honestly it was the peers that would bring up their friends or the boyfriend bringing up their girlfriend, saying, I think you need to speak to my friend or speak to my girlfriend or boyfriend and talk to them about what’s going on for them, because they’re not okay.
And so, peers have, honestly, the most amazing perception. They have the most amazing view. Because often, when people are living with their symptoms, we normalise it. We just go okay, I’ve got to get on with this, and we’re trying the best that we can. It’s often really hard to see the forest from the trees, but peers look at you and go, right, well, you’re not here again. Now you’re not at school. You’re saying you’re okay, but are you really okay? And they question in a really kind way, and are able to, I guess, yeah, be that advocate for you when you often don’t know that you need to be. I think that’s really key. And also being kind to peers if they are going through that diagnosis.
I don’t like the word journey. It often feels more of a trek to me, that diagnosis trek, and being understanding and I guess that comes down to educating yourselves. We have so many resources on our website. We have over 50 resources. We have a guide for school, a guide for parents, a guide for partners, for school, friends, for peers, and it’s written by those people. It’s written by parents, it’s written by peers, teens. What I wish I had known when my friend was going through this, and what I could have done, because we’re in our nature as humans, we want to help and support other people, but when you don’t know what’s going on with that person and they’re isolating, it’s so hard to know what to do.
And so yeah, keep reaching out to people going through these issues, they can really be isolating themselves and just keep inviting them. One day they will go, Yes, I will come or have a what we’ve seen a lot of teens do is they have bedroom parties where they’re in their pajamas and they’re not well, and they’ve got heat packs and, yeah, this generation of kids, I’m really excited to see them grow, because honestly, you can see such a shift in the generation. They they’re really clever kids, and they think differently to the generations before. And I don’t know, I think they’re going to change the world.
Megan Gilmour 37:35
Yeah, more of it too. We need it right now. We need, we need these generations to come through and reinforce what we’ve taught them that’s now being backed off of and they can carry it forward. I love that idea. So, I think the wrap up there is that there’s probably there, and we do mean probably somebody in your life, or more than one person in your life who has endo. And just think about that in terms of, you know when we listen, and being able to be that, that guide to potentially life changing support. So, do you know what? Do we know, what the current, exact, current population of school aged children with endo is, and how accurate is that data? If you have it, is it? Is the data tracked?
Jessica Taylor 38:37
The data is difficult because it’s in, it’s it’s the data is difficult because it’s really self-reported, right? And you aren’t essentially added to that data unless you undergo that laparoscopy. And I don’t know a lot of 10 year olds who really or parents who want to put their kids through that honestly, I would have that same concern. So, it’s difficult, but there are longitudinal women’s health study that is managed by the University of Queensland, longitudinal and public health area. What they have done is they have tracked people from the 80s and now most which is really cool, they’re tracking those people who, all on Medicare, who have children with endo or these symptoms of endo, so we’re going to start to see that data from the ages of eight to 16 in the coming years, not very far away. They’re actively doing that at the moment. At the moment, though, we know that one in seven will be impacted by endo, and that is from those reproductive years. So this it is, I think it will increase. One in seven is just currently what it is. I think it will definitely become more prevalent, particularly when we have studies, the most recent studies from the Pelvic Pain Foundation found that 52.6% of students reported severe period pain, and that’s one of the biggest symptoms. So, I think we’ll see a significant shift,
Megan Gilmour 40:11
Yeah. And I just want to qualify here for the audience. Are we talking about a female at birth body here, or does it occur for males at birth as well bodies for males at birth?
Jessica Taylor 40:24
Yes, no. So, mostly, if not all of them eccept a very, very, very small percentage they, it does impact females who are assigned female at birth. There are one or two cases in the world where they have found endometriosis lesions in some male, assigned male at birth’s nose. But we don’t really understand that. But this is affecting people assigned female at birth. However, there are, there is an enormous trans and queer community in this space, and so that adds another layer to this issue as well. And so, they’ve had to navigate significant additional barriers and adversities whilst, yes, living with the symptoms of endometriosis.
Megan Gilmour 41:16
Yeah, this is really worth understanding as well. And so just on that data of one in seven, is that coming what population is that coming from?
Jessica Taylor 41:28
So that’s based on the Australian Medicare data and the
Megan Gilmour 41:32
assigned female at birth. Is that
Jessica Taylor 41:34
assigned female at birth? Yes, it is, yes. And we have many times spoken with researchers about that gender piece, and the research processes are from the Dark Ages, yeah, so it’s difficult, it’s slow, but when we’re talking about statistics, is always that one in seven assigned female at birth.
Megan Gilmour 41:55
I was just sort of trying to work out based on 4 million Australian School students said, yes, it’s one in seven of roughly 50% or 2 million, which is, do that 285,000, 185,200
Jessica Taylor 42:21
Just over a quarter.
Megan Gilmour 42:29
Yeah,
Jessica Taylor 42:31
Just over a quarter.
Megan Gilmour 42:33
So, yeah, it’s, I just want to draw attention to that, because we’re talking about a lot of people. And then we’re back on to that by saying or asking, do they miss a lot of school?
Jessica Taylor 42:51
They do, they miss a lot of school. And like I said, the from the most recent study, which is the data from 2022 2023 so really recent in terms of data capture, 23% said that they missed school or work because of their period. And that’s that’s specifically school aged kids,
Megan Gilmour 43:09
Yes, and we need to add to that, that given what Jess has said about the duration and that people are living with this, so it’s not something that just all of a sudden stops. We’re talking about missing school across potentially a whole school life from age eight. So, I think let’s just put that in the frame that’s a lot of school missed over those years. And are the absences, do they tend to be sporadic and of a shorter duration, like it might be a week every month, or something like that.
Jessica Taylor 43:47
This is where tracking can be really helpful. And what will often happen is that’s right, it’ll be sporadic. So, they might get their menstrual they might start this menstrual cycle. They might start their period. Or it or it may be just before, and it’s just here, there and everywhere. It’s not very regular. But over time, what people will start to see as those symptoms become more cyclical, they’ll come every month around the same time, and then we’ll start to see students around that same time start to take time off, or it may actually be around a really stressful period. So we know that stress is a significant issue that causes flares with these issues with Endo. So around exam times, no kids are not just missing out on exams. They’re with endo. They’re really sick. They have had a significant response. They’re in a pain flare. So they have the brain fog they are in a lot of pain, and they can’t concentrate. So around exam time is a big one that parents say to us, they’re missing their exams. Again, I don’t know what to do. It’s a really difficult conversation to have with the school, and this is where I guess parents can be so proactive. Of because if they can say, and we have a guide on this, you know, I live with endometriosis, or we’re going through the diagnosis trek to work out if this is endo, and keeping that conversation going ahead of those exam dates or those key points in time is really helpful.
We’ve had girls who are in the hot, in their toilets, really, in a lot of trouble, call us on the helpline and not know what to do. And so they’ve got, you know, the known jumper wrapped around their uniform because they’ve had an accident, so embarrassed to go see the school nurse, or actually not even knowing what to do, or how to do this, and so that is just humiliating, humiliating. And if you don’t have the peers around you and support networks, no one’s spoken about it, that’s even just another barrier.
So, imagine going back to school after having that experience. Yeah. So, there’s a stigma that comes in, and people are missing it. And I think a lot of that, we talk about this idea, well, the theory around the self-determinant theory, which is a fascinating piece of research, and theory around, how do we encourage individuals to take care or charge of their health when it’s really, really scary, like endo can be. And so, they need three things. They need confidence, they need community, and they need agency. And so, if they build, if you build a community around someone, you build their confidence by giving them information that improves their agency to take action. And that’s all of our programs. We have so many free programs, and our app and every conversation we have is structured around those three things, and that is what we’ve seen to be the biggest shift in allowing and helping people move from, oh my goodness, what do I do to taking action.
Megan Gilmour 46:59
Yeah, we love agency, and it’s just wonderful to hear that you’re, you know, you’re using this theory in at the center piece of everything that you do. Because we can, we can seek support and we can, we on the other side of it, we can be advocates, but nothing is going to replace personal agency, because it just takes you everywhere that you need to go in life. And I love the community and confidence part as well.
And you mentioned, stress at school can be, you know, a big factor in a flare. There are a lot of things that happen at school that can be stressful, not just exams. I mean, for some families, just getting to school can be stressful. There can be other disabilities. It’s, it’s an intersectional issue in terms of, you know, the Venn diagram of other things that may be going on in that person’s life, that young person’s life, and that can lead to other complications as well. So, the fact that you know that stress does make it worse. You know that there could be many critical times across that school life where endo is playing a part, and and, yeah, just getting that support when things happen at school, because that can also lead to bullying and other things as well.
So, I guess this question is, you know, what should families and schools be prepared for at different times, if they if they really are aware of and looking after their young people with endo, what would those things be? You know, to be prepared.
Jessica Taylor 48:52
Know where the heat packs are. Have them ready on hand. Not be not have someone cycle as this mysterious, you know, private thing, if possible, where possible, talk about it, where they’re at in their cycle, so that people can be prepared. If there are school nurses, which there are in a lot of schools, have all of our brochures in their school nursing bays, because you can only do so much in a school nursing bay.
I think the validation piece is probably the most important. They you don’t need to understand it, but you can be kind, and you don’t need to, you know, have your head fully wrapped around it, but just listening to those kids and those children, if they are coming to you. And I have a seven year old who has an ache and pain all day, every day, for something different, I get it, but when it’s persistent, and when they’re coming to you again and again, saying, This is not right, I don’t feel quite right. Listen to them and start tracking it, write it down.
The data is enormously helpful when you go and talk to a health professional, and that’s why we built the app. You can track in what’s going on for you, and go here, this is what’s going on for me. This is not a once off thing, this is consistent, that can be really useful and some practical thing if, if someone’s just sitting on education and learning about this issue, it can be really daunting to take the next step, and people don’t always know what to do, and that’s why we are here. We can pair them with a mentor. They can have some one-on-one support to talk through all of this.
We speak with parents all the time. We have debrief sessions with them all the time, because they’re often coming to us with, ah, this is what’s going on, and we give them education. And heading onto our website, you can find this as well. Who could be in that team. Let’s have a, list all the symptoms. So, list down every single symptom that that person or student or child is experiencing, and then we look at who in that team could come in. So, if they’re getting pelvic pain, pelvic health, physio, most amazing profession for these issues, okay, they might be getting some bloating or some bowel or gastrointestinal issues after eating something. Okay. Let’s look at what those symptoms are. A nutritionist or a dietitian can really help people to identify triggers and alter the diet, because we’re dealing with an inflammatory condition.
So, we want to reduce stress. If someone is having difficulties managing the mental load of this issue whilst going to school. I think every individual needs to see a psychologist. We could do all the therapy in the world. And you know, we’re still carrying the weight of the world. So, speaking with someone can be so helpful. We have communities. We have 26 of them around Australia and also for particular communities, for young people, start talking, you know, that’s a group of people where you don’t need to explain yourself. We just get it and we build community that way as well, so parents can be referred in or contact us at any time. We have capacity, we are here. We have nurses to speak to as well. But it’s about breaking that down and looking at, where does that individual want to go? What’s important to the family? What are their barriers? What are their finances as well? Which is a huge barrier. Where can we refer them to? Free opportunities, free programs. All of our programs are free as well. Yeah, it’s so individualised as it should be, because we’re dealing with individual people, but it’s important to break it down. So, if people have the awareness, they have the education, and not know where to go, download a guide, look at the next steps and schedule a time to chat with us.
Megan Gilmour 52:43
Yeah, incredible. It’s so good that there are people like you out there. Otherwise, it not only would be lonely, but also the fact that all these individuals are experiencing it alone also means that there’s no way to shift the narrative, shift the policy, shift the systems of support, get the data, so all the things that could change that aren’t there as well. So, we need organisations like QENDO.
I just want to put in a little plug now for what we do and remind listeners that the Disability Standards for Education would absolutely cover this issue, and those standards apply to every school in Australia. So the Standards cover medical conditions or any effects to the body. The standards is really specific in defining what both what it will cover, and also what schools need to do and required to do, because it’s a regulation under the Disability Discrimination Act at the federal level, so it’s a very powerful regulation, and it gives clear signals to school about the expectations of providing equal opportunity to students with complex medical situations. And it even allows for imputation of condition so across a six year period where there’s evidence symptoms, there’s school being missed, there’s problems at school, the the condition could be imputed, meaning that before it’s actually formally diagnosed based on symptoms that are recurring.
So this is super important, and the standards allows for enables, again, every school in Australia to provide access to the classroom on equal terms, to to the curriculum, to additional support that the school can be funded to. Provide, and by funding, I mean from the federal level down to schools as a disability levy that gets paid if support, additional support, through adjustments at school are provided to students for 10 weeks or more, so, and that is the reason missing schools uses and talks about the Disability Standards for Education a lot, because it’s really the key to unlocking the door to what can often be for families and students quite difficult support to firstly, be acknowledged as needed and legitimately needed, and secondly, to actually have those plans put in place through an Individual Learning Plan.
So and I heard you say, you know that there’s other presentations like bow and these sorts of things as well, and we’ve heard from from other organisations, just often, how hard it is to get a school to acknowledge the existence of a condition when a clear diagnosis is not there and given by a doctor. And so then young people can be assumed to be squibbing off school, avoiding school, and all the other complications that come with that. So that’s our plug. We just really wanted to add in there that, yes, this would be covered by the standards and we provide and are working for at a policy level to get to a digital connection to students who can’t be in the classroom because of their health condition, so that they could, they could join from home, and we’ve proved that, and have thousands of data points on it, actually, of the success of social connection and remaining part of your community. So, you mentioned community as a part of being, you know, able to enact that self determination, but also and your agency, but also just to be able to contribute to that community as well.
Jessica Taylor 57:09
Yeah, finding purpose, right? We can’t let you get lost. We’re humans. We’ve got, you know, we’ve, we’ve adapted so many, so much over the thousands of years, but our brain is the same as it was. Yes, they are definitely social creatures. They are. And when you lose your purpose, and if your purpose was head of the class, or, you know, aced it at swimming, or in some social circle at school, and then that’s removed from you, that’s or because of this unknown symptom, it knocks you. We hear that all the time. I’ve lived that myself. And you, well, what am I doing now? And they’re at such a vulnerable age where their brains are just extraordinary.
To go through stuff like this, it can be really difficult, and you can lose your purpose, and we bring in people all the time and help them re-find that, even that if it is contributing and giving back. And you know, I often say, it’s not about us, it’s about all the other people that can’t be here or can’t speak or don’t know how to so let’s do what we can for them, and whilst they’re still figuring it out, and that just grows the energy, grows the advocacy, but grows the community. And because I have a team of over 100 volunteers out there on the ground, they are having conversations like this every day, so we can really work so much better when we have a community around us.
Megan Gilmour 58:41
Yes, that is so true. And I mean, there’s evidence, quite strong evidence, about the effects of loneliness on physical health. And you know, the data on loneliness and the global agenda on loneliness is drawing all of this out. So being isolated can and does, according to the research, worsen your physical health or a person’s physical health. So, you know, there’s a lot of complexity here.
So as we move into the last part of our conversation, you’ve talked about the biggest challenges and the vulnerabilities facing kids with endo at school, and given us incredible fast track of knowledge about this issue, and reminded us that we will have people in our life, if not ourselves, who are experiencing this, including our young people, and talked about the ways that we can provide support or give support and encouragement to enable contribution and continuing within community and being a part of that and removing the gaslighting or disbelief when people are experiencing pain.
So, with all of that, my last question is, what’s happening now to address these challenges and vulnerabilities in school from a government perspective and or what do you think schools and governments currently aren’t doing?
Jessica Taylor 1:00:28
Many years ago, we advocated really hard to bring in the schools program, and that is funded at a federal level. So that’s the pelvic pain PEPP Program, Pelvic Pain Foundation of Australia, PEPP program, and that is a part of the national action plan for endometriosis that we identified the need for school education. So that’s a that’s an education program that sits outside the current Australian Curriculum.
And people go into the into the school, educators, who are health professionals themselves, go into the school and they talk about what’s normal, what’s not normal. They take menstrual cups, they take Modi Bodi period undies. They take pelvis figurines, and show people, they’re so visual, it’s excellent. And so that needs to continue. So that’s something that’s currently happening that needs to continue. And we work collaboratively with them, because the schools are referring their students to the app, so they have a school session, and then they can download the app and start tracking and start learning more, because on the app there’s so many resources we can connect them.
So the app is a state QENDO app. That’s the QENDO app, yeah, and it’s a state funded activity or initiative. And then we have also a QENDO mentor program, so anyone who has been identified as a needing support, one on one, regardless of their age, when they’re under 16, we obviously have consent and parental involvement where appropriate, and so we compare them one on one. So that’s also a federally funded program, so we can attach that can be attached to schools, and build that out in schools as well.
Megan Gilmour 1:02:14
Yeah. So does that mean that young people in schools are being educated on periods and alongside that, on endometriosis and associated things. That’s fantastic. So that’s not only doing the basics, but also involved taking that opportunity with the basics to add, you know, the consider other considerations about what might happen, you know, around periods or with ovaries and other things, yeah, just basic anatomy, yeah, yeah, yeah. Just a such essential learning for everyone
Jessica Taylor 1:02:59
It is, and we have amazing health education individuals. So if a student comes up within that program that the Pelvic Pain Foundation run, because they’re health professionals, if a student comes up, they can actually answer the questions. And if there is a concern, they have a gynecologist that works with them too, so they can book a session with them.
And so that is, I guess, cutting through so much of the barriers, it’s a free program that goes into schools, because it’s federally funded, where there is funding there, and 100% of the schools that had that program want them to come back. So that means it’s, it’s really well liked by schools a lot of the time. Health and education departments think that their school nurses can deliver those programs, or their sex ed teachers can deliver those programs. And I don’t know about you, but yes, there’s incredible teachers out there, but I did not want to talk to my sex ed teacher about periods and pelvic pain. And it’s just it’s far more complex, and there are dedicated specialities in healthcare that teach this and teach it well.
So asking a school nurse to be a generalist in this area isn’t fair, and when the school nurses have been asked to deliver a program like this, they don’t want to, because they know it’s so it’s over their head, and rightly so, because it is so specialised, there are excellent student nurses out there who can be educated and help support that person and pick them up along the way. But actually delivering that program is it’s overseen by a pain specialist and a gynecologist. It’s very evidence based and excellent. I do think that we need to embed that in the curriculum. The fact that we aren’t taught about our basic anatomy and physiology at that level is just bananas to me. Changing the Australian health curriculum, though, I think needs a major reform, not only in this area, but so many other areas.
I think we need better support for students in school when they’re going through this and going through that diagnosis process and understanding their bodies. And we need support for parents as well, as they’re navigating this, we are trying to bring in new Medicare item numbers so that the costs of scans or the costs of consults are reduced, putting additional medication, not only contraceptive medication, but other medication, on the PBS, the pharmaceutical benefit scheme, so or subsidies, so that if there is a need, to take Medidcare or hormonal management that it is again financially reduced. We are working to build additional free resources and free programs and clinics for people to access that specialised care, if, if they need to a lot of the time, it’s down to not knowing and money funding, where in a cost of living crisis in Australia, throw in a couple of chronic conditions on top of that, it’s really hard,
Megan Gilmour 1:06:00
Yes, and there’s no doubt that, you know, chronic conditions, both medical and mental, are rising. That’s what the data shows so and I like to talk about, as I mentioned earlier, the Venn diagram of issues. We do know, as you flagged at the beginning, as well, it’s that not only is there school missed, but when there is school missed that’s predominantly affecting mothers and their paid work because they’re and also the management of the health issue as well is predominantly coming to mothers.
So this is a hugely gendered issue as well. The school and health nexus is predominantly the work of women. So you know, even policy change when we’re arguing in these spaces, if it’s not, if it’s not being, if that gendered issue is if that issue is not being understood as a gendered issue, and it’s not being recognised that way, and the people who are hearing it are not sensitive to that, in that it is not their problem, we’re getting these entrenched.
Jessica Taylor 1:07:20
It’s so hard, isn’t it? I had a couple of meetings yesterday, oh gosh, that I left, and I thought, right, we’re back to square one with this group, you know? And then
Megan Gilmour 1:07:29
So it’s not only me that has that experience?
Jessica Taylor 1:07:32
But we need to call each other when we have those experiences, go, okay, boost me up here, because it’s just deflating. It’s deflating, yeah? And
Megan Gilmour 1:07:40
But it’s designed to be that way. It’s designed to be difficult, and it’s designed to be an obstacle course, and because the easiest way to solve the problem is to get someone to go away and make the pressure stop, even if the problem remains.
Jessica Taylor 1:08:00
I said to our team yesterday, okay, troops, I need your help. We need to rally like we’ve never rallied before. And you know, I think at a federal level, we’ve had a lot of bipartisan support, which is good. And I held a parliamentary friends event just a couple of weeks ago. We had over 50 members of Parliament from all all all areas of Parliament. And actually, Peter Dutton turned up, the leader of the opposition, and he shared his own story of a family member with endo and that just goes to show that–and we remain apolitical–so we are here to educate all members of parliament of all levels. But when like you say, there is someone that knows that someone with endo, and has seen that frustration and that circus that you have to go through, it does help, unfortunately, and I say, if you know seven people, you should know endometriosis, or you should know about endometriosis. And everyone knows seven women or those assigned female at birth, and I think that helps them put it into perspective.
Megan Gilmour 1:09:07
Yes, definitely. And so from our perspective, what I’ll share is this is one complex health condition, and now extrapolate that across all chronic health conditions or complex health conditions, some of which, as I said, have crossovers and multiple conditions going on, even physical disabilities. You know, different, you know, different life circumstances as well, neurodivergence, neurodiversity. Let’s just throw that all in there. And then we’re talking about, what does that mean for education and missing school? And then what does that mean? All those children who miss non-negligible amounts of school and their futures, and so that’s the that’s what we’re operating in. And what we’ll hear is, oh, no, this is an education issue. That’s a health issue.
Megan Gilmour 1:10:19
Yeah. So yes. So, you know, I want to, I want to kind of take you into the last call to action that you have now, by leaving everybody who’s listening to this with the full understanding and listening to what Jess has said and the trek and I also want to to flag that predominantly it is women out there, in not for profits, with lower wages or foregoing wages, trying to solve these issues. Sorry, I’m getting croaky. And so this, this plight, this mission for kids to have better health and that is absolutely first and foremost. And then to be able to have their education as well is something we’re not going to give up on. We can’t give up on kids, especially when we witness this every day in our work, and we know it can be different. And we know it can be different for teachers too. Once you know, our systems are able to systematically support better health and education nexus. So that’s my close. I’ll turn to Jess now. It wasn’t a rant. Jess that I did. It was,
Jessica Taylor 1:11:29
We hear that all the time.
Megan Gilmour 1:11:58
It was a closing statement. I could go for 25 hours, I could talk about this.
Jessica Taylor 1:12:05
It’s so true, though, because you just see it and it drives you, and you’re 100% right. We have amazing allies of other genders now, but most of it is, is women. And in March, I think I was only in my home for four days because we were out there and just trying to raise action. And we’re really moving away from awareness for awareness’ sake, we need action. Well, gosh, and I think that’s people.
Megan Gilmour 1:12:34
That’s, yeah, I’m with you.
Jessica Taylor 1:12:37
People are powerful. And if I can be very gendered right now, women talk, we talk very well, and we we build communities, and I think that’s something to celebrate, and that’s how we have made shifts, and that’s how we will make shifts.
Megan Gilmour 1:12:51
Yeah,
Jessica Taylor 1:12:52
We will be so loud that they can’t not listen to us, and that’s what we did to establish the National Action Plan in 2017 and after yesterday’s meeting, I realised we’re going to have to do it again. But we’ve learnt, we’ve known what to do, and I think we have even more allies every everyone has an agenda, and that’s okay. I think if we share agendas, we share each other’s needs and ideas, we can work so much more collaboratively and bring that in the conversations that we’re having. And so when
Megan Gilmour 1:13:23
And it helps everyone.
Jessica Taylor 1:13:24
It helps everyone. Yeah, we’re not doing this alone. And, you know, sharing with ministers who I talk to every week, this is the impact on schools, except, you know, we have to work this collaboratively. That’s the only way that they also see that we also aren’t an easy group to just shoosh.
Megan Gilmour 1:13:43
Yeah,
Jessica Taylor 1:13:45
Yeah.
Megan Gilmour 1:13:46
Well, that’s why our National Insights for Education Directory and this conversation which sits within that work, is all about mobilising action together for, you know, for the benefit of young people, and you’re absolutely right, we, it’s good to know we’re not alone in this as well. So, we at MissingSchool, are hoping to, you know, build this alliance of health consumer organisations who can also, at the same time as being in their lane and doing your amazing work. Can also have the tools, resources and support and knowledge and data that we have developed to be able to all of us together argue for better support at school, and because that is such a big part of the child’s life, a young person’s life. So,
Jessica Taylor 1:14:42
Yeah, we’re ready to do it. Let’s do it.
Megan Gilmour 1:14:44
Yeah. And we did that at Parliament House in February with 15 organisations.
Jessica Taylor 1:14:50
Great.
Megan Gilmour 1:14:51
And it was, it was wonderful. We’ll be able to share some of that video footage soon.
So, in closing, What’s your call to action for endo in seven words or less?
Jessica Taylor 1:15:06
Call us. We are here always, and we welcome support in any way that anyone’s able to give. head to the website, q, e, n, d, o.org.au,
Megan Gilmour 1:15:20
thank you, Jess, you’ve beat me to that, but I’m going to back it up a big, big, big shout out to Jess and to QENDO. That’s www.qendo.org.au [https://www.qendo.org.au/], go there. Refer people there. Get information. Get the resources, the amazing you know, information and knowledge that QENDO has developed over so many years, but also give generously, because organisations like QENDO need financial support, as you’ve heard, to keep going and doing the work that they do. And just imagine if that financial support isn’t there and the work stops, who is going to do it?
So, Jess, thank you for joining me today. It’s been an amazing conversation, and you’ve been incredibly generous in your time and also your incredible knowledge. And from us to you, thank you so much for the work that you do and that QENDO does, because we’re all made better for that.
Jessica Taylor 1:16:19
Thank you for being an ally. Megan and anyone listening here on this podcast, you now are an ally, too. When you have homework to tell three people about QENDO and about endo.
Megan Gilmour 1:16:31
Indeed, we look forward to seeing the movement grow.
Thanks everyone for tuning in, help us turn up the volume so all kids are seen and heard. Follow along, like share comment or leave us a review, because we love hearing from you. And if you want to donate, head to missing school.org.au, because every dollar makes a difference.
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