RECORDED Wed 29 Jan 2025
SUMMARY KEYWORDS: pelvic pain, endometriosis, school connections, complex health conditions, period pain, gender neutral terms, medical misogyny, delayed diagnosis, persistent pelvic pain, mental health, school absences, PPEP Talk program, education awareness, funding challenges, regional impact
SPEAKERS: Kate Tomsett, Megan Gilmour, Nicola Jensen
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 & 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.
And today, we have Kate Tomsett and Nicola Jensen. Kate Tomsett is a clinical educator and researcher with Pelvic Pain and Endometriosis Foundation of Australia. She is a scholarly author with a background in molecular bioscience, paramedicine, education and dance. Nicola Jensen is a registered nurse and clinical educator for PPEP Talk at the Pelvic Pain and Endometriosis Foundation of Australia. She has 13 years of experience as a pediatric registered nurse within the Women’s and Children’s Hospital Adelaide, and more recently as a school nurse. Welcome Kate and Nicola, we’re so excited to have you on Live & Learn.
Nicola Jensen 01:47
Thank you
Kate Tomsett 01:48
Thank you for having us
Nicola Jensen 01:49
Yes. Excited to be here, yes
Megan Gilmour 01:51
So today we’re here to talk about supporting school connections for students with complex medical and mental health challenges or conditions. Let’s head straight to the first question. Tell us how pelvic pain and endometriosis impacts kids and why it’s something every Australian needs to know and care about.
Nicola Jensen 02:14
Yes, great question. I should probably start just by defining endometriosis, if that’s okay. So, endometriosis is a condition where tissue similar to the lining of the uterus grows outside of the uterus and in places that it shouldn’t grow.
It affects everyone really individually. So, some people can experience pain. It can be really severe. Others will have no pain at all. Some people have whole body symptoms, so changes in mood, headaches, fatigue.
Endometriosis is a contributing factor to pelvic pain, affecting the pelvic organs and the muscles. But it’s really important to note that while endometriosis can cause pelvic pain, not everyone with pelvic pain has endometriosis, so there’s a bit of a distinction there.
So now that I’ve defined it, I’ll go on to answer your question. So pelvic pain can really deeply impact school age children on so many levels, if left unmanaged. So, the obvious one, physically, emotionally, socially and academically, which can lead on to long-term economic disadvantages.
So, it’s also important to note here that pelvic pain doesn’t just affect those people with the uterus. It can affect anyone of any gender. So, some of our data that we’ve collected from 64,000 students assigned female at birth, 20,000 assigned male at birth, and 4,000 staff tells us that 50% of students experience three or more days of pelvic pain every single month, and then of those students assigned female at birth, 47% report significant interference with their daily activities. And then 23% regularly miss school or work due to their period. So that’s not insignificant numbers.
And then additionally to that, one in seven of those students assigned female at birth will later go on to be diagnosed with endometriosis. So, I think with those statistics I’m showing you there, we can all say that this is really important for all Australians to know and care about. We all know someone, we all love someone who is affected by pelvic pain and or endometriosis.
Megan Gilmour 04:41
Yes, thank you for such an insightful introduction, and for those stats to really focus on the next part of the conversation, keeping in mind how many people are affected, and you answered within it, one of the questions I was having was, you know, can both genders, or both girls and boys be affected by pelvic pain and or endometriosis.
Will we, as we go forward, when we refer to male and female? Do we – it will be from birth? So, sex at birth?
Nicola Jensen 05:23
Yes, so at PPEP Talk we talk in gender neutral terms. So, we like to use assigned female at birth, assigned male at birth, just due to the factor that not everyone born with the uterus identifies as being female, yes.
Megan Gilmour 05:39
Yes. Okay. Thank you for clarifying. Saying that, and please do pick me up if I if I don’t do that, I think it’s really important for the reasons that you’ve shared.
So, many people probably assume things about pelvic pain and endometriosis. What’s the million dollar question you get from parents or loved ones when their child experiences or is diagnosed with either of these or both?
Nicola Jensen 06:11
Yes, lots of questions are asked. I guess the million dollar questions are, is it life threatening and is there a cure? So fortunately, no, it’s not life threatening. It can’t kill you. And unfortunately, there is currently no cure for endometriosis. However, there is so much that we can do to help manage associated symptoms, if the symptoms are impactful.
Megan Gilmour 06:44
Yes, that’s very important to point out, and the fact that there’s pain associated with it in some cases, or in most, even if it isn’t life limiting, it’s having a big impact, and I’m sure we’re going to hear more about that as we deepen into our conversation.
So, what’s the most important thing that you want them to know at diagnosis and in relation to these important questions?
Nicola Jensen 07:22
Yes, the most important thing that I want them to know is that there is help out there, that there are people who care about them, there are health professionals who care about them a lot. They are invested in this space, that they can live a really active, a really fulfilling and healthy life, and that the diagnosis doesn’t have to define them, that there are people out there that can help navigate this with them and their families.
Megan Gilmour 07:50
Yes, perfect. And we often hear this phrase, you are not alone, as a bit of a wrap up of that. And you know psychologically to know that there are not only others out there experiencing it, but there’s a whole body of knowledge and people like yourselves who can, and health professionals across the country who can, support and assist, I think is really fundamental to anybody in this circumstance. We can move through it together with others and with support.
We’d love to know from both of you, what brought you into the world of pelvic pain and endometriosis?
Nicola Jensen 08:41
Do you want me to take it first? Kate, I’ll go first. Alright, I think I have a few merging factors that brought me here. So, I was diagnosed with endometriosis in my first year of nursing. After many years of quite significant pain and heavy bleeding, I had a lot of people in my life who had not dissimilar stories to my own.
So, I’ve worked as a nurse alongside young people and their families my whole nursing career, most recently as a school nurse, and I think that’s where I saw first-hand the impact that pelvic pain and period pain has on young people and how much school they were missing.
And it’s at that point that I thought, hey, I can have a really big impact here. I care about this. I feel passionate about this, and that’s how I landed here at the Pelvic Pain Foundation of Australia as a clinical educator, doing work that I absolutely love, to help empower young people to know more about their bodies, more about pain, and how to manage that pain and get help when needed.
Megan Gilmour 09:49
Yes, perfect. And that’s the lived experience right, sitting behind that, is not only absolutely informative, also validating, but also brings the passion to the work and to make life different for others. Thank you so much for sharing that with us and Kate. What about you?
Kate Tomsett 09:49
Yes. Nicola is just such a beautiful human, and I always love hearing her story. For me, it was my sister, honestly, it was, and we might ask questions about that later, but being that person next to her, watching her live with period pain, pelvic pain, and then we found out she was diagnosed with endometriosis, and I hated that helpless feeling, and I didn’t want people to have to live the way she lived.
And I always say in all of the talks that we do as part of our work, that I’m here because of my sister. She’s inspired a lot of what I do. And I mean more broadly, it was always intersectional feminism that was going to bring me here. I really did enjoy seeing the beautiful, strong women and people of minority genders in my life, living with this pain month on month on month, and just having to have this social idea of tough it out, be stronger, when I just really want people to listen to their bodies, nurture their bodies, and honor themselves and all the beauty that we are, as women, and it’s yes, a really beautiful job that I get to do here at PPEP Talk, in educating young people about knowing their bodies and how they can really harness all their beautiful power and strength in facing this game.
Megan Gilmour 11:34
Oh, that’s so special, and you have a lived experience too, right, as the sibling. So, we always really love to bring siblings and peers, but siblings really play such an important role in, you know, complex health and medical conditions or situations and are often overlooked, I would say. But we can get into that later.
But living your own experience as well, and the ways that it shapes and changes you as a sibling, I think, is such an important part, and also what that means for siblings and school too. So, I hope we can hear from you a little bit on that as well.
Thanks for being so generous, both of you for bringing us into your world and how this all started for you. So, knowing all that you know, what’s the biggest hope for kids with pelvic pain and or and or endometriosis, their families and loved ones when navigating this journey?
Nicola Jensen 12:44
I just hope that they feel optimistic and hopeful, and I know that not always optimistic might be a word used associated with a diagnosis, but we just have so much more funding and research going into this space at the moment, there’s a real spotlight on endometriosis, which is fantastic.
I just want them to, yes, feel optimistic, hopeful, not feel like it’s the end of the world, like I’ve already mentioned, they can live really active, healthy, fulfilling lives, and knowing that they’re not alone when navigating it too, knowing that there’s lots of help out there.
Megan Gilmour 13:23
And we’re so happy that that spotlight is on and shining brightly, and that it means that, you know, hopefully, over the coming years, we’re going to hear more and more good news, and more and more hopeful messages coming out of all the work that’s going to take place as a result of this spotlight and additional funding.
What are some of the common and perhaps frustrating public misconceptions about pelvic pain and endometriosis, and how have you seen these impact families?
Nicola Jensen 13:56
Oh, there’s so many, so I’m just going to have to pick a few. I guess one of the misconceptions that I do see as a clinical educator while in schools is hearing from students who say they’ve heard on social media or on TikTok or from peers, that having endometriosis means you’re infertile. So that is a massive misconception.
So, if someone is diagnosed with endometriosis, there’s no reason to say they can’t go on to have happy, healthy pregnancies. Yes, it can, for some people, impact their fertility, but not in every single case. So that’s a massive misconception that we hear.
Another one as well that’s really frustrating is around the normalisation of severe period pain. I think we all hear stories of people saying, oh, you know my grandma or my mom, they had really bad period pain. So, mine is just normal.
Any pain that interferes with daily activities, basically, is not normal, and it does need addressing. So being told that this pain is normal, period pain is normal, yes, having pain can be normal, but if it is impacting or interfering with daily activities, it isn’t normal, and we do need to look at that a little bit further.
Another misconception is that all endometriosis is associated with severe period pain. So, whilst this can be true for some people, it’s not the case for everyone. So, someone could have endometriosis and have not very much pain at all, no pain. So, it can really vary, and I think that this can often lead to people or others being dismissive of their pain.
Megan Gilmour 15:48
Yes, they are. That is so illuminating. And we’ve heard lately the term medical misogyny associated with this. Would you like to comment on that?
Nicola Jensen 16:00
Oh, I feel like Kate would definitely like to comment. This is one for her.
Kate Tomsett 16:08
Yes. I mean, personally, within our work, we work with a lot of doctors all around Australia, and we speak to a lot of people who have been diagnosed with endometriosis and who do have pelvic pain. And I guess that’s the strongest story that has come out of so much of the research, is that people feel like they’re not heard and that their pain isn’t real and that it’s in their head, and maybe that, yes, it does come from a place.
I mean, if you really want to go back to looking at medical misogyny, just the pure lack of research into anything to do with the female body, let alone pain, and validating women’s pain and what they’re experiencing.
I mean, the fact that we still don’t know what causes endometriosis or how we can cure it, and there are still so many people living with pelvic pain, while you know, people who are assigned male at birth have many treatments available for them, and no, we don’t want anything awful to happen, we want equality within our healthcare system.
I think we’re just so far behind with women’s research, and it would be really beautiful for these women to feel heard and seen in their bodies and understand that anatomically, we’re not just little men. Yes, we have, we have cycles, and we need to embrace every part of our cycle.
Megan Gilmour 17:20
Yes, and perhaps that’s one of the biggest public misconceptions of all, yes. And thanks for commenting on that, I feel like it’s really important to bring that into the conversation, especially because it has been associated with this issue, and we don’t want to shy away from that when we’re talking about frustrations and misconceptions and the impact that they have as you’ve both mentioned,
Which I might add, is on top of the pain, on top of the condition, and on top of all of the other things that happen for a person when they’re experiencing this, to then be dealing with that next level or next layer of pain, emotional pain, or hurt or, maybe even gaslighting. So, it’s important to really pick up on this.
Is there a risk of delayed diagnosis, or are most cases of pelvic pain and/or endometriosis picked up easily?
Kate Tomsett 18:31
Yes, that’s, oh, such a good question. And I mean, when I started this work four years ago, I mean, it was current, well, back then, it was 11 years from onset of symptoms until diagnosis. We’ve seen progress, and now it’s around six and a half years from onset of symptoms to official diagnosis.
I mean, the thing that really gets in the way when we’re talking about delayed diagnosis is the recurrence of persistent pelvic pain. And the definition of persistent pelvic pain, depending where you look in the literature, is anywhere from pain experienced on most days for three to six months.
So, for most of those people who have had to wait their six and a half years for a diagnosis, they’ve already got persistent pelvic pain, and that is where that pain starts to become more than you know, those lesions in their body, that inflammation, that’s when they get into that fatigue. Maybe there’s some nerve pain, there’s some anxiety. We see high rates of depression and anxiety in people with pelvic pain, the pain spreads.
And I think that’s the biggest thing that I would love people to take away, is that, yes, it can take time to get an official diagnosis of endometriosis, and that’s because currently, the guidelines say that the gold standard is that those lesions of endometriosis must be seen with a laparoscopy. We’re getting better at our ultrasounds. We’re getting so close that there’s just no simple test at the moment to do a blood test or an ultrasound and say, yes, that person has Endo.
So please don’t wait for that diagnosis if you have pain, if that young person has pain, that is real and that’s really interfering with their lives. And there are things they can do from the moment they understand that pain, to try and address it. You know, it’s okay to start addressing it with any like anti-inflammatory medications, stretches, TENS machines, physios. And as you said, there’s a whole team behind you who are really passionate in making sure that pain is managed. Um. Yes,
Megan Gilmour 20:31
Yes. So much. So many excellent points there too, for people. And the thing that I keep hearing over and over again is pain as a signaler to something not being right, or, you know, taking us out of homeostasis and prodding us to pay attention to something that we can and should take it seriously and address it, no matter what other people are saying about it. It’s just this or it’s just that, to keep that agency front and centre, in your own medical advocacy, to know that you don’t have to be in pain, and you don’t have to wait, no matter what anyone’s saying, just keep going, keep working the frontier to make the discoveries of what’s happening.
And I guess it is a moment of celebration to say it was 11 years and now it’s six and a half, but six and a half years in pain, that’s a long time. But I am hearing that there’s some breakthroughs on the horizon, perhaps, or close anyway, which is really optimistic and hopeful.
What kind of complications do kids with pelvic pain and endometriosis face? So, this could include medical it could include anything.
Kate Tomsett 22:05
Yes. I mean, yes, it’s really, I mean, how long’s a piece of string? And I mean, with the idea of this podcast missing school, is, yes, it’s such an incredible thing that people face because of, initially, the shame and the stigma that there still exists around periods and bleeding, and especially with a lot of people getting their periods in primary school and often not feeling that the rest of the cohort is educated about it, or that it’s normalised.
So already, we don’t want to start talking about periods. We want to hide our pain. We want to pretend it’s not there or dismiss it. So yes, we’ve seen that the rate of dropping out of school, the rate of absenteeism affects those students as well.
And when we are talking about pelvic pain, we haven’t mentioned it yet, but we are also talking about bladder pain and bowel pain, as well as pelvic muscle pain. So, we don’t want to exclude those people with painful bladders, those students who, as you can imagine, in the middle of class feel the urgency to go up and get to the bathroom every half hour, every hour. And same with those with chronic constipation or diarrhea, bloating and IBS. So those people also include it in this big bucket.
I guess the biggest complications that people will find is, yes, most of that persistent pelvic pain. Maybe, if it is left unaddressed, maybe then we are looking to some infertility complications. But as Nicola said, about one in three people with endo can still have babies just like anybody else.
Yes, and it’s just, if we don’t address it, other things can start to appear with that fatigue and that anxiety, with facing pain for most days, and especially if we’re experiencing it on a cyclic, monthly, ongoing, iterative basis, that’s when that pain can start to build.
Megan Gilmour 23:47
Yes, and I was going to ask that question is, you know, does the pain, or can the pain increase cyclically? So, I’m hearing that that’s the case. So, it could be low level in the background, maybe, and then dials up at different times and stages of life. And hormone hormonal changes might also affect that as well.
Kate Tomsett 24:11
Definitely, we see those symptoms onsetting, you know, with the first period, but yes, and especially, I think that is what makes women’s pelvic pain so much more I guess, prevalent is that we do have that monthly inflammatory event that is a period that, yes, it is a natural, beautiful part of our body, but there’s inflammation. Our body is being told, “Hey, there’s something going on here. There’s some pain, there’s some things we need to listen to”. And if that isn’t addressed, and it does happen month on month on month, month month, then people can get that persistent, that really strong pain. Yes.
Megan Gilmour 24:42
And as we said, if we come back to the fact that six and a half years maybe for a diagnosis, and that’s a long time to feel extraordinary pain. And I would sort of classify this as extraordinary pain, because we, you know, we do note that, you know, periods can be associated with pain naturally, and then that subsides.
The other thing I picked up there, which I’d like to sort of come to, and you mentioned that some people drop out because this is, you know, has gone on for years and years, and may have led to mental health issues and other things, and just fatigue and you know, I just leave this here for the audience that it’s distressing to think that a young person might not complete school because of this.
And when help is at hand, and there are things that can be done, first of which is, is believing that it’s legitimate. That’s got to be the first step and to be validated in that as well. We can’t have kids not completing their education because of this, because we know that that leads to all sorts of other things, and that’s why we’re having these conversations, because we want young people, as we talked about in the beginning, not to just identify with their health condition or their situation, to be able to be seen and recognised as a student, a friend, sister, brother, whatever, you know, just to be held in the full expression of who they are, rather than just be, you know, living under the cloud of that diagnosis or not having a diagnosis.
So next question is, how are siblings and peers of kids with pelvic pain and endometriosis impacted? And what should families be across?
Kate Tomsett 24:42
And thank you so much for making space for this. I mean, yes, as a sibling of someone who does have endometriosis, and she experienced a lot of pelvic pain throughout her adolescence and her youth, it’s really nice to have somewhere to speak to this.
And I know a lot of people who will be siblings, whether they’re brothers or sisters or friends, just carers and involved in this space, it’s really nice to be able to talk to it.
I think, I mean, my parents did as best as they possibly could. I know parents have a lot on their plate, but yes, as you mentioned before, it can sometimes make one feel overlooked, or, you know, well, her periods absolutely awful. So, any bit of pain that I experience that’s nothing compared to her. I mean, she’s throwing up, she’s passing out, she’s having to change pads and tampons every two hours.
I’ve just got some cramps like I can, I can push on. This will be fine, and it very much is easy to minimise that. But also, I feel like for siblings, and once they’re made aware of it, especially if they’re assigned female at birth, that there is a genetic link that has been found with endometriosis, so that little needle in the back of your mind of, oh, could this also be me?
And especially for, if I was a younger sibling, luckily, I’m older, that if I was younger, and looking at my big sister going through this, the dread and the fear and the priming for pain that a young person might experience. So, I’d really encourage parents to let them know that, yes, this is maybe this is an older sibling’s experience. But please don’t think that periods will be the end of you in sport and the end of you going to school and friendships like periods can be so much more.
And make sure that, because we know of someone, if I tell you something’s going to be painful, and then I do it, you’re going to experience some pain, so we can, again, try to still validate that siblings experience, but also let the other sibling know that it will be okay. And periods can sometimes do this, but there are ways to manage it that would be incredible, too.
Megan Gilmour 28:48
Yes, and did you feel yourself becoming hyper vigilant for your sister and feeling a responsibility to look after her as well?
Kate Tomsett 29:02
Oh, girly, yes, my whole job, my beautiful co-worker who first did this job with me, said, gosh, you just walk into a room, and you are aware of everyone’s emotions and their status. Like that has gone on to so much of my life, and yet, for my sister, obviously it’s – I’d be at school. I’d be the one packing the extra pads and the tampons.
I mean, even now, you know, I’m the one sending her TENS machines and going to gynecology appointments with her and going to pain specialist appointments with her and setting her up with the best team that we can.
And yes, you are. You’re on highlight, you’re especially as a big sister, you’re protective, and you want to make sure that they’re best cared for. And yes, I would definitely say that it heightens not only your awareness to one person, but to others in your life as well.
Megan Gilmour 29:49
Yes, and you don’t have to answer this, but was there resentment there at times as well, and then guilt for resentment.
Kate Tomsett 29:59
Sometimes, I have worked through this very well with my psychologist. Um, I was definitely an over achiever. I was a perfectionist. I had to get straight A’s. One time I got a B in high school, and I cried and demanded to take the test again until I got an A. So, yes, there was definitely because you –
Megan Gilmour 30:17
You had to be the good child. You had to cause less problems.
Kate Tomsett 30:21
I had to perform. I had to be seen. I had to be the academic excellence kid, the girl who got dux, the girl who was school captain, the girl who was head of the volleyball team and dance captain to feel like I’m, like I was part of this family.
And I mean not resentment, but definitely, yes, I very much have empathy for how beautiful and strong my parents were. They had, you know, they you can cut this out, but please don’t, if you don’t want to.
But my sister was diagnosed with Asperger’s, and you know, now would be autism spectrum disorder. I had an eating disorder, and then Georgia with her endometriosis and pelvic pain. So, they were juggling so much, and I was just so grateful for all that they could give.
Megan Gilmour 31:10
Yes, yes, indeed. And I think it’s part of, you know, the things that go on in families, where there’s this complex kind of health situation going on, can spiral out to a whole range of other things, as you’ve pointed out there. And both adaptive and maladaptive behaviors coming out, which, let’s just put it under the category of people trying to cope with what’s ahead of them or present.
You know, so there’s also grief associated with these things happening and things missed out on because of them as well, and people feeling disappointed because of that, on behalf of one another or together.
So, it is really complex, and I feel like it’s such an important conversation to have, because we do know that siblings, school life, attendance at school, but also school life can be fractured by what’s going on in their family, to do with a sister or brother who has a complex health condition.
And I guess if the number of kids across Australia with a serious health condition affecting attendance and school performance, and all of that is unknown, which it is, then what does it look like when we add siblings into the mix?
So, I just leave that there for people to think about, and I suppose you know for teachers to be aware of as well. And but some of the things that you’ve said there, Kate, I could be talking to my own daughter, and as she was the sibling in our complex medical situation with her brother.
So, thank you so much for sharing generously. I know it’s really important for people to hear this, and people might not have thought about it before.
So, what’s the current population of school aged children with pelvic pain and or endometriosis? And how accurate is that data? Is it tracked? For example?
Kate Tomsett 33:30
Yes. Thank you so much for asking this question. And I mean, as you said, so much of this is unknown, and especially when we’re looking to pelvic pain and endometriosis, we know a little bit about bladder pain and toileting. We know a little bit about bowel pain, but it’s very difficult to pin down, especially if endometriosis must be diagnosed with a laparoscopy, which will feel like quite an invasive surgery. No doctor is going to rush into a young person or an adolescent to perform that.
So, it is really hard to get the data. We know in our general population, as Nicola mentioned before, one in seven will have endometriosis, that’s around 14%, and I think what’s really exciting about the work that we’ve been doing with PPEP Talk, is we’ve collected so much data, which has been unknown before, so look out for a research article that’s about to drop.
But from what our data can show, and I think it’s really indicative, is that 51% of people with a period experience regular severe period pain, as Nicola mentioned, 23% are regularly missing school because of their period.
And then if you look to meta-analyses of like, oh, yes, you know, again, we need to be validating that pain – this is regular severe period pain that these students are reporting for themselves, and meta-analyses have shown that around 62% of adolescents with period pain were confirmed to have endometriosis upon laparoscopy.
So, if you’re really going to extrapolate that, that’s approximately 32% of teens that we’re seeing that could have endometriosis, which, again, that space is very unknown, and we’re getting there, and we’re building our data, and, yes, we are tracking it as best we can.
We have a brilliant researcher based in Canberra, in the ACT, who is called Mel Parker, and she’s working on getting a tool called the PIPA tool, which is what we’ve been using in our studies to try and ease that way into diagnosis and addressing that pain more readily.
Megan Gilmour 35:28
Yes, so they’re 4 million school students. So that’s around 1.2 million, bit more than 1.2 million students.
Kate Tomsett 35:39
That’s mental.
Megan Gilmour 35:41
We quote the 1.2 million. This is why I know this without even pulling out a calculator, because up to 30% of kids have a complex or chronic health condition serious enough to affect their education and attendance. So that 30% is 1.2 million. It’s probably a bit more than that now.
Kate Tomsett 36:03
Yes, and just to see that in the future, yes, we’re diagnosing at a rate of around 14% but is this our future? Is this the rate of people who are going to be experiencing endometriosis, and are health systems ready for it?
Megan Gilmour 36:15
Well, I just want to point out that endometriosis and pelvic pain is just one condition. Now let’s add all rare conditions. Let’s add in all the major ones that come off top of mind, heart, kids, juvenile arthritis, cancer, Crohn’s, cystic fibrosis, and on and on and on and on.
So, this is why we’re having these conversations with organisations like yours, because we want to just start all working together to really push forward on like, a national approach to how kids with health conditions at school or out of school – missing school, how we deal with this?
Because it’s not only affecting those individuals, each and every one of them, but also, it’s definitely affecting the performance of our school system and school completion rates and all of that other stuff.
So, I just flag that out as a major shadow issue that’s not really coming to the surface on our education agendas. And we’re talking a lot about mental health, but medical is not a word in there, and I’m really trying to get it in there.
Kate Tomsett 37:35
Just keep going you’re fabulous.
Megan Gilmour 37:37
We have to. And also, for teachers too, right? Because they’re battling across all of these things without a sort of a clear way of doing it in in the school setting. So, we need to support teachers through this as well at a systems level, not just at a school’s level, because we know that chronic conditions are on the rise for whatever reason, and we know that, and I believe in this case, school absences would be experienced mostly at home than in a clinical setting or in a hospital.
So, people often think if you have any illness serious enough to keep you out of school or missing school, often that you’re in hospital. But that’s not true. That’s one to pull out as well.
So, with those big numbers in mind, the question is, do kids with pelvic pain and endometriosis currently miss a lot of school? And if so, why?
Nicola Jensen 38:46
Yes, they do. They definitely do. And we, both Kate and myself, have mentioned some of the statistics around that. So, we know that 23% of students reported to regularly miss school or work due to their period. So that’s huge.
Why are they missing school? Well, so many factors, obviously pain left untreated or unmanaged, severe pain, can then lead on to persistent pelvic pain, which can have whole body symptoms. So, people can not only feel pain physically, those physical limitations, but they get that fatigue, the anxiety. This can lead to social, social isolation.
Megan Gilmour 39:32
even nausea,
Nicola Jensen 39:34
Yep, absolutely, nausea, yep, nausea, vomiting. There are just so many symptoms involved in this. People physically can’t get themselves out of bed, or they have poor sleep due to pain, so are fatigued -lack concentration.
But also, there’s those factors that are involved that once they are at school, there’s limitations at school in terms of, can they get to the toilet and have a longer toileting break in between class? Do they have to participate to the full extreme of physical education lessons? Like, are there alternatives?
People miss school when they’re in pain, they miss school, they don’t show up. So, yes, I mean, that’s why, and I know we’re going to talk about PPEP Talk in a little more detail later, but it’s why PPEP Talk, our program is so important. We go into schools nationwide, educating students on all things periods, on pelvic pain, what’s normal, what’s not normal when it comes to this pain, and what they can do to manage that pain, and who they can seek out if they need extra help.
So yes, it’s really important that people who are having impactful pain do seek out some extra help, or they address that pain. They don’t just leave it and think, no, it’s going to go away next month, because, as I mentioned, it can spread. It can be felt in all parts of the body.
Megan Gilmour 40:56
Yes. And I’m just thinking, there too, even with the pain management, right, there’s going to be cost associated with that too. And can families manage that? Can all families manage that cost of treatment.
Nicola Jensen 41:12
No, absolutely not, not always. And it’s why it’s so important that they get this education early, so that they don’t go down that track of persistent pain. Because once it does get to persistent pain, it can be managed and it can be treated, but it’s harder.
They might need to go to more health professionals. They might need to go and see a pelvic health physio. They might need to go and see a nutritionist or a dietitian, and all these things do cost money, like you just mentioned.
Megan Gilmour 41:44
Yes, it’s something we hear coming up again and again. And I have to admit that in all of my years that I’ve spent working in the areas that we have the personal cost of maintaining treatment throughout these complex health conditions, apart from the fact that work can also suffer and those things, those sorts of things too, is big. It’s got to be considered a big part of it, and for us to mention here.
So yes, what are the critical times in the school life of a child with pelvic pain and endometriosis?
Nicola Jensen 42:23
Yes, well, I think for those people assigned female at birth, it is around the time of menstruation. So, we say sort of 12 to 16 years. However, we know that people are getting their periods younger, as young as 9, Kate’s already mentioned it’s happening in primary school.
It’s so important that they learn around this time, changes that are happening inside their body. They understand what a period is. Understand what’s normal pain. Like I’ve already mentioned, it’s been for so long, people talk about pain and say, you know, severe pain? Oh no, it’s normal. That’s normal. That’s what a period should be. Yes, you can have some pain with a period. If it’s not bothering you, it’s not interfering with your daily activities. That’s fine. That’s okay. You actually don’t need to do anything about it at that point.
It’s when it’s interfering in daily activities. That’s when it’s really important that these students learn how to navigate that, how to manage it, and the symptoms associated with it.
Pain that’s left unmanaged and untreated, it can spread, can get to other parts of the body. And the point is learning at these times of their life, like around the time of menstruation, even earlier, learning about it, talking about it at home, breaking that stigma, breaking the taboo about periods.
Let’s talk about it at home, with boys, with girls with those assigned female at birth, assigned male at birth. It’s not a gendered issue, like everyone should be talking about this in homes, in schools.
Megan Gilmour 43:52
Thanks for that comprehensive answer. And what should families and schools be prepared for at different times?
Nicola Jensen 44:01
Yes. Look, I think young people, teenagers, they are going through so many changes in their lives, so many things going on. So, they’ve got, obviously, the physical changes, but social complexities. There’s homework, there’s assessments, there’s family life, extracurricular activities, it’s a lot, and then when you throw into it a little bit of pelvic pain, perhaps a little bit of endometriosis, maybe, maybe not, but some pain, they can start feeling really isolated and alone.
I think there’s a lot of things that families and schools can do to help at these times where they might need a little bit of extra support.
So, a little a few little changes can actually go a long way. So, in every scenario, it might look a little bit different, but perhaps at school, and I’ve already mentioned this, it can be little changes, like longer toileting breaks in between lessons.
So, people have time to go change their menstrual products. They have time to stretch, get some water, perhaps take some medication if they need to. It’s having some breaks in class where there’s time for stretching, there’s time for movement, so people aren’t sitting for prolonged periods of time.
It might be modifying or adjusting PE lessons for those people, so they don’t have to do as high intensity and high impact activities when they’re having a pain flare.
So, for people who are experiencing pelvic pain, making small tweaks can just really go a long way. And the idea is, we want to keep people in school right. We want them showing up.
And if people, if schools, are making these small changes, these small allowances, and it’s the difference between them staying home or coming to school, then why not make these allowances?
Megan Gilmour 45:51
Yes, for sure. And some of the things that we talk about as adjustments would be good for everyone.
Nicola Jensen 45:57
Yes, absolutely, not just people with pelvic pain, I think everyone just sitting down for some time could do with a stand up, a stretch. I know, personally, I need that. So, yes, I think for everyone, it could go a long way.
Megan Gilmour 46:12
Yes, what comes to mind? I’m just going to say it out, because it might sound a bit strange to people, but just thinking about yoga, where there’s, you know, in any single pose, there’s just multiple adjustments you can make, you can go in deeper, or you can, you can operate at a much more, you know, learn a beginner level.
And I think this is where we have to see schools heading with activities, excursions, where, you know, there’s a sort of a range of things, and people can have those different options just as business as usual, rather than even having to see them written into an Individual Learning Plan.
This is about the time in the process where I mentioned the Disability Standards for Education, the disability standards also apply to medical issues, health issues, illness as it’s defined, or disease, and the standards enable a whole range of things: ongoing access to classrooms, which we say should occur, whether the students at school or not at school, and the use of technology for that access in the 21st century; learning alongside peers; having additional supports; having assistive devices, such as a telepresence to enable that access if you can’t be physically present – meanwhile, we’re all working for that physical presence.
Importantly, as we’ve just mentioned, adjustments so that you can have participation on the same basis as others and but the only footnote that I’ll put there is that I could see how this particular topic might not be seen as a serious health issue that would trigger the Disability Standards. And I would say that it is given what, given the definitions in the standards would absolutely cover it, but I could see how it would, you know, there’d be sort of this fear around well, now we’ll have everybody who’s having a period and period pain wanting an Individual Learning Plan under the standards and so, yes, I think that’s a really interesting topic. You might want to comment on that right now, or not.
Nicola Jensen 48:44
Look, I think there’s a lot to be said there. Yes, the, even the talk of, you know, everyone with a period is suddenly going to want their own learning plan, and they have their own special allowances, yes, just that alone. So much to say to that.
I mean, what I’ve been talking to isn’t just saying that everybody suddenly can sit out at PE lessons, that everyone gets extensions on their assignments. We’re not talking about that. It’s about, you know, someone who has seen their doctor, and perhaps does have, you know, a letter from their doctor to say this person might need 10 minutes extra toileting breaks or might need to go and access medications throughout class, stuff like that.
But also, I think that schools, just like you said, having small break times in class, I think everyone could benefit from that. Just stand up, stretch everyone, move your bodies around, yes? I think that everyone could benefit from that. But we’re not saying that everyone who has a period needs their own specialised learning plan.
Megan Gilmour 49:55
Yes, yes. Because we also don’t want that push back, right? We’re trying to establish here that things that you could do in the school and in a classroom that would benefit a whole range of students – those micro adjustments, and maybe even at certain times.
But you know, there’s some things that across the board could be applied for, for better comfort, for most, if not all, students, and even things, you know, sometimes we have the conversations on this call to do with school excursions that people can’t attend, and I’m sure this cohort would be in this category too, and miss out on excursions when there could be an incursion or some other kind of modification to that. So that, you know, there’s that that experience on the same basis or the same opportunity as peers, so it’s not to be excluded, which is the unfortunate outcome when there’s not an option.
Nicola Jensen 51:14
Yes, absolutely.
Kate Tomsett 51:16
I mean the biggest thing that I mean, especially going into schools. We hear about school camps, you know, imagine being someone with period pain and say, going somewhere where there may not be a toilet for you to go camping and change your pads and your tampons or your menstrual cups and have facilities to feel hygienic and fresh and like you’re managing well.
Yes, just these kinds of things, I think, yes, schools need to keep an eye on. And I know I’ve had people talk about even swimming carnivals as an incursion or an excursion and yes, maybe just having allowance for that, or having a school uniform where period swimwear is the school uniform, little things like that that can make everyone feel more accepted.
Nicola Jensen 51:55
And not white, not white swimmers. Like we heard about in one school recently where their uniform is, yes, white swimmers. No. That’s a big no.
Megan Gilmour 52:06
Yes. And look, I mean, for any of us, right? That is just any of us who’ve been, you know, through having periods, I’m on the other side of that now, but it’s always that thought there, that horrendous thought, right?
And then you, you add the layer of being, being a teenager, or, as you’ve shared, and I won’t go into it on this call, but the fact that it, you know, getting a period is happening at a younger age. Is just having attention drawn to you in that way as a young person is the worst thing ever.
I mean, you know, you just want to really blend in right at some point, and having that kind of attention, which I would say or can also lead to bullying as well. So, we want to avoid all of that I also really love, and I know we’re going to get into it as you share with us more about PPEP Talk, I’m sure, is the fact that this education is for all students.
So, we want to make everyone aware. We want to be able to have these conversations open openly and remove that stigma that’s associated with what is just a biological – just talking about period now – is a biological thing that happens, and it happens to half the population. Well, you know, theoretically,
We can’t have it being sort of stigmatised in the way that it’s unhelpful, and then I imagine that again loads on extra layers for those who are having difficulty with that.
So, I suppose that leads us to the next question, which is, what are the biggest challenges and vulnerabilities facing kids with pelvic pain and endometriosis at school? And please share with us as part of your answer how that’s being addressed, and if you want to share what you’re doing as an organisation to tackle that?
Kate Tomsett 54:18
Yes, definitely. I mean, I think Nicola touched on the majority of it there that the shame, the stigma, being able to access and turn up to school feeling secure, not, you know, having to worry about leaking, and you know all these things when you just want to be in class focusing on your math equation.
And as we already spoke to absenteeism students, missing school, but also presenteeism of being when – you know people in pain. When you’re in pain, your body is making you pay attention to that pain. So, it’s very difficult to focus and stay concentrated and present in class.
I think also you kind of led to the access to period products in schools. It varies between state to state. Um, but yes, it’s the Share the Dignity ‘Bloody Big Survey’ found that 64% of menstruators struggled to afford period products. So being able to have that at school as a safe place for people to access would be another huge task.
And I guess, yes, talking about PPEP Talk, it’s our baby. It’s what we do. We absolutely adore it.
We have a team nationwide of fabulous educators who PEP, P, P, E, P, stands for the periods pain and endometriosis program.
It was started by the Pelvic Pain Foundation of Australia, which is a beautiful not for profit. And it was expanded to address the national priority, sorry, the National Action Plan of Endometriosis. Priority One was education and awareness. We were very lucky. We already had a program, so let’s make it nationwide.
And since inception, we’ve seen over 110,000 students and staff, and our program is really focused on teaching students, whether they’re assigned female or male at birth, we can run a co-ed session. We’ll do anything to get that PPEP talk in there and to break down any stigma. And it’s all about what is normal, what’s not normal when it comes to period pain, and what can you do about it?
That hope that this is pain and this it’s okay to feel pain. Pain is a part of life. But what are the tools that we can implement right now that mean that you can address that period pain, so you’re not missing school or sport or then work and then university and then being passed up for promotions and still things that people face these days.
So yes, the PPEP Talk. It’s free for schools. There is a bit of a disparity between state and federally funded schools, which we need to be addressing, but it’s free, and it’s focused at secondary school students, so I think PPEP Talk is doing a brilliant job, and we have been funded, and we’re very grateful for the funding that we receive to see 268 federally funded schools, so that’s your Catholic and independent or your private schools, and then we receive funding for 237 state schools only in Queensland, Tasmania, South Australia and Western Australia.
And that’s every year, which is awesome, but as a whole, that means we cover about 35% of schools in Australia, and we’re still seeing those states like New South Wales, Victoria, Northern Territory, ACT, missing out on all students being able to access this education.
Megan Gilmour 57:30
That’s something that has to change.
Kate Tomsett 57:35
Yes, yes. We’ve been fighting for a long time, and it’s difficult when you know I already said before that I’m a bit of a data nerd, and you can see that students in government schools are disproportionately impacted by their period pain and pelvic pain compared to those at Catholic and independent schools. So, the money needs to be put where it’s needed most.
Megan Gilmour 57:54
Yes, and you know, the availability of products as well would get and keep more students at school, right?
Kate Tomsett 58:05
Yes, you would hope that, I mean, especially, like, might even encourage some kids to come to school, if it means that at home, they can’t access it
Megan Gilmour 58:12
Absolutely
Kate Tomsett 58:13
But at school have a pad and a tampon
Megan Gilmour 58:15
And get my education while I’m there.
Kate Tomsett 58:17
Yes, what a pack!
Megan Gilmour 58:20
Double whammy – yes, I think there’s GST on products too, right? Yes, that’s a conversation for another time.
Nicole Jensen 58:29
Yes,
Megan Gilmour 58:30
Yes, I hear you, and that is, I mean, it’s wonderful that it’s out there, and let’s just give a big cheer and a shout out for getting that out to more schools and more funding for you to be able to do that. And just side note is, do you run these in workplaces too?
Kate Tomsett 58:51
Yes, we have a workplace program as well. It isn’t funded by the government, so it is a paid program, but we offer it for workplaces, anywhere you can imagine a person, we have a PPEP Talk for it
Megan Gilmour 59:02
Fantastic
Kate Tomsett 59:04
Talking yarns, for First Nations people, for intellectually diverse or disabled students. Any way you can bring a group of people together to talk about anything you can put a PPEP Talk there.
Megan Gilmour 59:14
Ah, that’s so so so cool. I kind of figured that if it wasn’t happening, that that might be something that needed to happen as well. So, thanks. Thank you so much for the work that you do.
So, as we as we head to the last part of our conversation, which has just been so incredible and so enlightening and so refreshing to get into detailed talk about periods openly, and not only that, but the other types of pelvic pain that you talked about as well, and pain itself, pain as an issue itself, and the spreading of pain, and then the associated things to do with pain that that can occur, and the emotional challenges and the psychological challenges of managing something like that for such a long time.
I could say so much more in a wrap up, but I should just ask you, is there anything else that we need to say here at the end of our conversation about pelvic pain and endometriosis.
Kate Tomsett 1:00:21
I think, firstly, also, if we could get some extra funding to be working in primary schools so we can address and educate people, so they can know what a period is before they have it, that would be incredible as well. And yes, obviously, all states,
Megan Gilmour 1:00:38
Yes, yes. So incredible, especially since you’ve said that that age is changing as well, or children are getting their period in the younger years.
Kate Tomsett 1:00:50
We’ve been asked to a school in the Northern Territory with students menstruating in year three. So, it’s really important we can be there.
Megan Gilmour 1:00:58
And then that’s just a whole other conversation about why that’s happening. But we just need to know that it is happening. And so vital for younger people to know, and even if it wasn’t happening, it’s going to so, that separation just destigmatises from such a young age then, and I think it’s treating something at the root cause rather than after the fact, and that makes such a difference.
Kate Tomsett 1:00:58
I would also like to add – I would really love to add that all these stats that we’ve spilled definitely for the national average, but we do have those groups who are identified as a priority group, and we are really privileged that we get to work in regional and remote areas with First Nations people.
And I just wanted to highlight that although the national average for people missing school because of that period is 23%. In regional areas we find that it’s 26%, in government schools it’s 28% and then 33% of Aboriginal and Torres Strait Islander students are missing school regularly because of their period. So, we are very privileged to be in a space where we can access this education and be close and central, but people need it.
Megan Gilmour 1:02:16
Yes, and that’s one worth reflecting on. All on its own is just those different cohorts and the disproportionate effect in different cohorts, which is often not part of the conversation and really should be.
Thank you so much for sharing that with us as well as so that we can take that with us as we close out. So, you each get a stab at this call to action. What’s your call to action for pelvic pain and endometriosis in seven words or less?
Kate Tomsett 1:02:50
Mine is book a PPEP Talk.
Nicola Jensen 1:02:57
My call to action, oh we talked about it yesterday, and we’re like, you’re just going to do the book a PPEP Talk! Okay, oh, now I’ve got to think on the spot. Okay, um, mine – is call to action -oh, goodness, I was just going to say, talk about periods and endometriosis. Talk about it. Let’s just talk about it. Let’s Yes, breaking the stigma, breaking the social taboo.
Megan Gilmour 1:03:24
Yes, amazing way to end. And so I want to give a special shout out to both of you for making time to talk to us and sharing your knowledge, experience, lived experience and wisdom so generously today, and being willing to just jump right into to some of the deeper parts of the story and the experience, and also, of course, to Pelvic Pain Foundation of Australia and the work that you do.
So, everyone, you’ll find PPEP Talk there as well as a whole bunch of other things. Go there, give generously, support and find the help that we talked about at the very beginning. You’re not alone, so you’ll find that at www.pelvicpain.org.au [https://www.pelvicpain.org.au].
Nicola Jensen 1:04:22
Yes, and that’s where you can book a PPEP Talk as well. So, if you’re looking to book a PPEP Talk, you book it through that website there. There’s a separate PPEP Talk spot on that.
Megan Gilmour 1:04:31
Yes, jump over there and have a look anyway, and give generously, because, you know, we need more of this out there, as we pointed out, and in places it’s not reaching yet.
So, from us to you. Thank you so much Nicola and Kate for joining us today. It’s been such a great conversation, and we’re so very grateful to you.
Nicola Jensen 1:04:57
Thanks for having us
Kate Tomsett 1:05:00
Thanks for such a beautiful, vulnerable and easy to share space in the work you’re doing, and the attention you’re bringing to these really vulnerable people is imperative.
Megan Gilmour 1:05:10
Yes, yes, absolute honor.
Nicola Jensen 1:05:12
Yes. Thank you very much for your time with us today. We’ve had a blast, and we love shining a light on really important issues like we’ve spoken about today.
Megan Gilmour 1:05:26
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 missingschool.org.au, because every dollar makes a difference.
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