It Takes Heart
It Takes Heart is an unmissable podcast where healthcare workers share their honest and unique experiences from Australia’s frontline.
Discover real-life stories of passion and purpose, insight and inspiration from people on the inside and tales that are equal parts heart-warming, heart-wrenching and hilarious. It Takes Heart is co-hosted by cmr | Cornerstone Medical Recruitment CEO Samantha Miklos and Head of Talent and Employer Branding Kate Coomber.
It Takes Heart
32. “I Just Wanted the Pain to Stop”: Erin Barnett on Endo & Empowerment
You might know Erin Barnett from Love Island or I'm a Celebrity…, but her most powerful story isn’t one that played out on screen. A registered nurse living with endometriosis, adenomyosis and PCOS, Erin opens up about what it’s taken to be heard in a system that too often overlooks women’s pain.
From a tough start in the health system to becoming the kind of nurse she wished she’d had, Erin shares the personal journey behind her book Endo Unfiltered and what led her to make the life-changing decision to have a hysterectomy in her 20s.
If you’ve ever felt dismissed by the system, are raising young women, or work in women’s health, this episode is for you.
Language warning: This episode contains occasional strong language.
More about Erin's Organisation of Choice, Endometriosis Australia
Endometriosis Australia is at the forefront of advocating for those affected by endometriosis, a chronic condition that impacts millions worldwide. Dedicated to improving the lives of those living with endometriosis, they deliver a comprehensive range of programs and support services designed to make a real difference.
Follow Erin on Instagram.
It Takes Heart is hosted by cmr CEO Sam Miklos, alongside Head of Talent and Employer Branding, Kate Coomber.
We Care; Music by Waveney Yasso
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Imagine living with such extreme and relentless pain that you're facing a hysterectomy in your twenties. The complete removal of your uterus just to make the pain stop. This is the reality Erin Barnett faced.
Erin Barnett:And the pain is so bad that you're almost passing out, you feel like you can't breathe, and you don't want anyone to touch you. And then when your family's around seeing that, they don't know what to do. And I also had to get my appendix out because there was like everything was stuck together, my ovary, my appendix, I had endometros on my appendix. And I was like, just take it out. But now I've got no more organs that you can take out. Like I actually need to live with the rest of the organs that I have.
Kate Coomber:But before you get into this episode, be sure to pop over to wherever you get your podcasts and make sure you subscribe. And if you really love this episode, perhaps share it with a friend or even leave a review as it really helps us reach more people.
Sam Miklos:Don't forget to follow us on Instagram for all the behind-the-scenes fun. Okay, so you might know Erin Barnett from Love Island, or I'm a Celebrity, get me out of here, but there is so much more to her story. Behind the cameras and headlines is a registered nurse who spent years navigating chronic pain from endometriosis, adiomiosis, and polycystic ovary syndrome since her teens. This isn't just a story about reality TV. It's a story about the courage it takes to take back your own body and control of your life. Welcome to It Takes Heart, Erin.
Erin Barnett:Oh, thank you. Thank you so much for having me. I'm really excited.
Sam Miklos:It's a pleasure to have you. So before we get started, though, congratulations on your recent wedding. How did the big day go?
Erin Barnett:Yeah, um, oh my god, the day actually went really well. Nothing went wrong besides my dad not having pants in his suit jacket thing. Other than that, we got the pants and everything else went fine.
Kate Coomber:Oh, you looked beautiful. The photos are stunning that I've seen.
Erin Barnett:Oh, thank you. I had the best wedding planner. Gee, what a wedding. She literally, that's the only reason why everything went okay. If you're ever looking for a wedding planner, highly recommend.
Sam Miklos:Maybe for our next weddings.
Kate Coomber:Don't say that. I'm not going to spend her. I'm sure she's on speed dial several times a day in the lead up. So, yes, so as Sam mentioned in your intro, you're a bit of a TV personality and people will definitely know who you are, but what they might not know is that you're a registered nurse. So, when did you become a nurse and and why did you get into nursing?
Erin Barnett:Um, so I did nursing years and years ago back in 2016, but I was an EN and then I w went straight into being an RN, but I didn't get my registration until after my RN because I went from EN to RN, but I had to pause that while I went on Love Island and then I had to restart it afterwards because I had lost a big gap and you have to do like another course to get your registration, and then I just went back into it. Was that a big decision to pause and and go and do something different? Oh, massive, because I didn't know what really Love Island was, like it was a UK thing, it wasn't an Australian thing. So I was like, hmm, we'll just see how it goes, and it turned out really good.
Sam Miklos:And so with your nursing side of things, like what do you love about nursing and what um what areas of nursing have you worked in?
Erin Barnett:Um I think my favourite thing about nursing is looking after people that can't look after themselves or people that don't really want to be at the hospital, you know, those people that don't want to go there and you have to convince them why they're there. And I just did you say what made me want to be a nurse? Yeah. Well, when I was younger and I had my first ever surgery, I had a disappointing interaction with a nurse, and I always thought to myself, that's it, I want to be a nurse so no one else has to go through what I went through, and I'll always be that nurse that everyone wants.
Sam Miklos:Yeah. And do you think um obviously that interaction had a real impact on on how you are as a nurse today? I guess how has that shaped the way that you approach patients?
Erin Barnett:Oh, massively. I think because some people don't like to be at hospital, some people are uh at hospital on their own, they don't have family, so I'm acting like their family, not just their nurse. And I take every single patient seriously, and I don't just think they're just like a patient in room five or whatever. I call them by their first name or however they like to be called, and I just really respect that person and the reason why they're there.
Kate Coomber:I think we we hear that a lot uh through these conversations, don't we, of having the right people in healthcare. And I think that when when you have the job that you really love that really shines through to the patient care union, you can really spot the healthcare worker who loves what they do versus someone who doesn't want to be there, and that really impacts then the patient care.
Erin Barnett:Yeah, and it's disappointing when you can see the difference between the nurses that want to be there and the nurses that don't want to be there. Yeah, absolutely.
Kate Coomber:So you talked there about being a patient, and in 2022 you wrote a book, Endo Unfiltered.
Erin Barnett:Yeah. How did this come about? And why why did you write the book? Well, I wanted to have a book that someone could read who well when I was 14 I had no idea what any of this stuff was, and I hate reading. I've never really that's the only book that I've actually fully read. And I just wanted to have a book that people can read, that it's easy to read, it's not boring. I even have a cheat sheet in there, so if you can't be bothered reading, it just tells you what page to go to, and that family and friends can read, fathers of daughters can read, and they can understand everything. Because at 14, like I mean, when I was 19, I was told that I needed to have children um because of like my PCOS and all that. And at 19, who wants to be having children? Like, no offense to the people who are, but to me, I was thinking about the next birthday party I was going to, what I was gonna wear, my sick days, like how much I was gonna get paid for the work I was doing. I didn't care about that. So this book has really helped so many people, and I really I'm really grateful for that.
Sam Miklos:It was a really well-written book. I um it's funny that you say you don't love reading writing, no, you don't love reading books, but it is so well written, and it um I flew through it and you know I personally suffered with all of the same things in my twenties, and back then there was really no education, there was nothing you could read. I mean, obviously I'm in my 40s now. Um and it was I I said to Kate actually after I read it, I felt very seen. You know, for the first time I was reading it, going, God, I actually experienced that. I had no idea that was a thing. There was so much there were so many little things, yeah, that I I overlooked or I went, oh, that's just part of it, and and moved through it. So it was a it was a really well-written book and there was a lot of great takeaways. Do you do you think, or I guess why do you think there's such a gap in education around women's health? And do you do you still think there's a gap? Because there definitely was for us 20 years ago.
Erin Barnett:I think there is still a massive gap. And I also think I've got two older sisters, and me being the youngest, I just watched them go through bad periods, and I thought, oh, that's just what periods are. I watched my mum, you know, my grandmother, and I was like, oh, that's just what periods are. And then when you would go to the doctor, they would say you either have to lose weight, panodolneurofin, heat hack, that's just part of being a woman. And then when you do sex ed in school, they don't mention anything about that, it's just safe sex, blah blah blah. And when you go see doctors, what frustrates me is they're mainly all male, and I know that's hard because it's what they want to specialise in. But then also I have seen a couple of female um gynecologists that was the worst I've ever been to. But I don't understand why there is such a gap. And I'm actually I would like to ask that question as well. Why is there a massive gap in the industry for women's health? And why does no one take it seriously?
Kate Coomber:So maybe because there is that gap. Can you talk us through for those who may not understand? Like, what is uh endometriosis, adenomiosis, polycystic ovary syndrome? You know, do they are they likely to all come with three or what's been in your experience and what is it?
Erin Barnett:So endometriosis is similar to the lining of the uterus that you get when you have your period, but it's different, but it's similar, and it grows, it can go anywhere in your body, and it also reacts to the hormones of you when you do have your period. So the cramping, wherever you have the endometriosis, it's gonna it's gonna start to hurt. Adiomiosis is kind of like a sister to endometriosis, and it is in the lining, no, it's on the outside of your uterus, so it can't be diagnosed correctly unless you have your uterus out and have a biopsy. And then polypsis gobri syndrome is cyst that is inside your ovaries, outside your ovaries. And unfortunately for me, I've got a different dad from my sibling. So my nan had endometriosis, and my mum has PCOS. So I got the best of both worlds. And they're a big happy family inside your body. They really love each other and they bounce off each other. And it was when I found out that I had all three, I was like, that's just great. That was just like the best experience I've ever had. And that's when I realized I had no education around it. Even when you get when you're young, you're like you get your period, I reckon there should be like a pamphlet you get to let you know that what's normal, what's not normal, and on the floor in a lot of pain, it should not like a painful period is not okay.
Kate Coomber:Yeah. Yeah, we heard from another guest recently, didn't we, that just because it's common that doesn't make it normal. And I think when we're talking about these topics, that has never been truer that uh everyone at school would be going, you know, quite a few people were going through similar things. So you just think, well, this is just what it is. And when you think about even getting a period and the little starter hacks that you might be given from you know your mum or or or you know, parental figure to make sure you're prepared for that. But I don't think anything really prepares you for any associated pain or if you've got heavy bleeding or any of those sorts of things.
Erin Barnett:Yes, well, I recently was working at a school as a school nurse, and what I did see, which I really liked, is back because I'm 30, when I was at school, getting a period was like if you had to get a pad, you would try and hide your pad and go to the bathroom. God forbid you made a noise at news that you were unwrapping your paddle. So true. So bad. But the school that I worked at, girls didn't girls don't care anymore. They would come in and be like, Do you have a do you have any pads? I've got my period, like all people around, it wasn't a secret. They're a lot more open, so that's why I love having these conversations because younger women will be watching this and think this is not normal, this is normal, or I should go see a doctor. But then also, not many people have um the ability to go get good health care. And I know that for myself because unfortunately, my mum was a single mum of four, and I was on a waiting list for a very long time, and my first surgery went really bad, and then my second and third were just as bad. And if I was given really good health care from the beginning, I probably wouldn't have all the issues that I've had now.
Sam Miklos:Yeah. Tell us about then the pain that you've experienced over those years, and I guess more about like the impact that pain that pain has had on your daily life, your relationships, you know. I don't think there's a lot of conversation around that.
Erin Barnett:Exactly, and that's so true. So it does take a massive toll on your personal life, and if you've got a partner, a massive toll on their life as well with your relationship with them, because the pain is all of a sudden, there's no time frame for it. You're not scheduled in for a Tuesday at 2 p.m. You're gonna be in pain for an hour.
Kate Coomber:Um, so And it's not something that Panadol can resolve, right? We're not talking, you know, pain to take something to take the edge off.
Erin Barnett:I know. And then when you present to the doctor's office in a lot of pain and they recommend Panadol, Neurofin, rest, and you're like, Yeah, but I I can't even afford that. I need to go to work. And the pain is so bad that you're almost passing out, you feel like you can't breathe, and you don't want anyone to touch you, and then when your family's around seeing that, they don't know what to do, and that's what's sad is so people should know what to do in that moment when a woman is suffering with extreme lower abdominal pain.
Sam Miklos:When um when were you diagnosed with endometriosis? How long did it take from being 14 to to that diagnosis?
Erin Barnett:Between 19 and 21, which is such a shame because when I was had my first surgery, it's even written on our medical because I asked for what is it called? Your rights. You know, when you get young, you can get your yeah, what is it called? Yeah, so we got that done, and um they even wrote on there spec something, blah blah blah, looks like endometriosis, and then we asked about it, and the doctor was like, It looks like something called endometriosis, but it's alright, she's very young, there's no need to worry about it. If it gets worse over time, just come back. And I'm thinking, well, I should have been diagnosed then. And then after all these surgeries for cyst ruptures and removing my ovary, then they did a biopsy on a bit of my endometriosis, and they said, Oh, you'd got it. And then they were doing it wrong, they'll burning it off, and then I was like, Then I was having too much scar tissue, and then it was growing back worse, so it was just over. Like my whole twenties, I was just in and out of surgery.
Sam Miklos:So was that what prompted you at twenty-three to have a hysterectomy?
Erin Barnett:Well, I asked for a hysterectomy straight away, and they only gave it to me in 2023. So they said that they wouldn't have to be.
Sam Miklos:How old were you then?
Erin Barnett:Twenty-eight.
Sam Miklos:Twenty-eight, yeah. Yes.
Erin Barnett:So I asked for it earlier and they kept saying no because the side effects of having a hysterectomy at such a young age, and when I did get it done, they still kept my bright ovary, and I was so mad because I was like, the PCOS, like I'm still gonna get fist. So then I was on Zolodex again, that was terrible. And then after a while, as soon as I turned like I was almost turning 30, I was like calling the guy and I'm like, listen, you're gonna have to take it out. I'm I don't want to do these injections anymore. And he was like, Alright, fine, you win. And I also had to get my appendix out because there was like everything was stuck together, my ovary, my appendix, I had endometriosis on my appendix, and I was like, just take it out. But now I've got no more organs that you can take out. Like, I actually need to live with the rest of the organs that I have.
Kate Coomber:So talk us go back a step there. You mentioned injections um following the hysterectomy. Talk to us about that.
Sam Miklos:What's why do they leave one ovary?
Erin Barnett:So the zolodex injection puts you into medically induced menopause, and it's meant to turn off your ovary, so tricking your brain into thinking that you don't have an ovary. And then I was also on a HRT patch to give me the hormones that my ovary wasn't. And the reason they don't want to take your ovary is because the side effects of not having naturally produced um hormones is you know, your life expectancy lowers, you get risk of cardiovascular disease, all these different things. But I would rather risk that. I would rather have a good life and die at 65 than be in and out of surgery until I'm 60. Do you know what I mean?
Sam Miklos:Yeah, yeah. And was there a final straw that kind of got you to that? Because it sounds like you were asking and asking for this hysterectomy. What was the final straw that that got you to the point of having it and having your doctor say yes, let's go ahead?
Erin Barnett:Well, I think I was out with my friends doing this Titanic experience, and I dropped to the floor in a lot of pain, and I said, Oh, I think my appendix has just burst and I couldn't walk, and I was in that much pain, but then all of a sudden it went away, and I was like, Oh, that's alright. And then I was doing, you know, the jumping method, and I was like pulpating my stomach, and I was doing everything to see, and then the pain was just getting worse and worse. I went to Epworth Emergency. They said, Oh, it looks like it could be your ovary, it looks like there's a cyst in there. And I'm like, How? I'm on this injection that is putting me through hell. And then um I was like, That's it, I want it out. So I called the gyno, and then I had to see another surgeon who does the appendix. So I had two surgeons in there doing two different surgeries, and he said to me, My gyneo, he's like, You finally got what you wanted, and I was like, Yes, I did. And he goes, Oh, he's like, I hope I wasn't gonna see you before I retired because he really doesn't agree with the whole taking the last ovary out if you don't need to. But in my opinion, I was like, It's my body, and I will sign like you can get cosmetic surgery, whatever you want, and you can sign a waiver, and they will tell you because when I got my booth done, they said you shouldn't go this big, this can happen, but here's a signature and it's you know, sign your life away. And I did. But with your other organs, the other surgeons don't let that happen.
Sam Miklos:Did you uh I was just gonna say, at that age too, like at twenty-eight, did you have to have any um you know, psychological evaluation or something? You know, did they talk to you about fertility and you know not being able to then go and have children? What was the process around that?
Kate Coomber:Because it's not reversible, right? I think it's with with other surgeries, maybe sometimes it can be reversed, but this is you know, it's a big decision.
Erin Barnett:Yes, I did. I had to go see a psychologist, I had to go get a second opinion, and I had to get a letter from my doctor, my um GP. And the when I had to go get um a psychology review, I was sitting there and I was speaking to this lady and I was like, Do you know this is so effed up? And she was laughing and she goes, Why? I'm like, because I'm doing this so that I'm not having children, so that I can get my uterus taken out. I'm like, but anyone can get pregnant and they're not getting psych evaluated, so that makes me feel weird. Like, so I'm choosing not to have kids or have this surgery because I'm in a lot of pain, but anyone can go get pregnant and no one has to go see a psychologist, and they could be like psychos, but here I am and level-headed, knowing what I want, and you're telling me whether or not I can get it done. And the second um surgeon who I had to get a second opinion actually disagreed and said no to the surgery, but because the psychologist said that I was like okay to get it done, he did go ahead with it, which was really good. I was very thankful for that.
Kate Coomber:Did you have any doubt though? Had you ever, you know, were thinking about children, had you ever thought that that was on the cards for you, or or pretty adamant that that wasn't a consideration?
Erin Barnett:Well, when I was younger, I always wanted children, and then when I had my first surgery, they said she'll probably need help to have children when she's older, and I was like, no worries. And then every surgery after 14, I was just getting more frustrated and more frustrated. Then they told me to freeze my eggs at 19 to 20, and I was like, I'm not doing that. And then as and then the more surgeries you have, your brain starts to associate your reproductive organs with like pain, discomfort, not pregnancy, not being a mother, like it's not comforting to me. I've still got like those motherly love, like I love children, all that, but I don't get that feeling of sadness or anything. I think I just accepted it at a young age, and also if I was to have a a girl knowing that she's gonna suffer like I would, like I would hate that. And then people say, Oh, but you know, you can adopt, but it's like, but why do I have to have a child just because I'm a woman to be a woman? I can still be a nice person without having my own children.
Sam Miklos:It doesn't define being a woman, exactly. As a public figure, Erin, did you get a lot of negative commentary about this decision to have a hysterectomy?
Erin Barnett:Actually, no, I got the really good um feedback and um positive people coming up to me and messaging me on Instagram, which was really nice, but then a lot of people were saying, Well, why don't you adopt? Why don't you do this? And then my comments back to that is where it started to get a bit negative. Right. Right.
Sam Miklos:But it's good to hear that like the overall, you know, that that resounding um support as well, because I know even at at 40 when I had hysterectomy, there was a lot of even and I've got three kids who were going, Are you sure? Are you done? Why would you do that? What are you gonna do to yourself? You're gonna go into menopause, you can do all these things, but similar to yourself, I'd had enough now.
Erin Barnett:Yes, and I know and I remember one of the doctors was like, Does your partner know about this? And I was like, Um, I don't give a shit if he doesn't know about this. He does know about it, and I'm like, But why does it matter? Like, why are we even mentioning him? He's not the one having this procedure done. Like, why is that we're not in the stone ages, like what the hell?
Kate Coomber:So I guess what what does life look like post surgery now? This, you know, was that your final surgery or when you got that last ovary out? And what what does it look like now? What what's life?
Sam Miklos:Has the pain gone? Do you can you still get endometriosis? You mentioned endometriosis is anywhere in your body. Does it still exist?
Erin Barnett:Unfortunately, it is still there. Endometriosis cannot be cured with a hysterectomy, but PCOS can be cured with getting ovaries removed, and endomiosis can be cured with getting a uterus removed, but I'm not an advocate and I'm not promoting getting these procedures done. It's only if necessary, and mine was so severe that it was the only way for me to live. And my last surgery was this year where I had my right ovary and my appendix removed and knock on wood, I haven't been in any pain, and I was kind of resentful but happy at the same time because I was looking back at all my 20s and thinking if they had just done this when I was 23 and asking for it, I would have had no problems. But now I'm trying to look at it like, okay, well, I'm 30 now, so now 30 onwards, pain-free. But endometriosis can still grow back, so if I start to get a little bit of pain here or there, I will always go to the doctor and get checked up. But it's just not as it won't be as severe as people who do have a uterus, but it can be anywhere in the body and it's not curable. And I really wish that there was something that we could do about it. And I know we have to raise funds for endometriosis, research, and even that's hard, but hopefully one day soon there's something that we can do, other than popping a million pills at such a young age to try and stop your period. We can try and figure out why this is happening.
Sam Miklos:Because that's very true. I know um when I was in my twenties and diagnosed, um, it was all about just taking the pill. You know, it was it was just take the pill and that'll help, and then keep going in for surgeries and burning it off and take the pill back in again. But there was just there was no other conversation around it other than that.
Kate Coomber:No, I think that's a good idea. I think what we're talking about is really extreme too. Like I think with any of these um diagnoses, there's there's such a spectrum, right, of where you sit and each and every time. And I think for people to understand what you're referring to, I imagine is you know, you're unable to leave the house. You're um you know, you're dropping to the floor in pain. It's it's genuinely having an impact on everyday life for you, which then has a knock on effect to every other part of your life, be it relationships, your mental health, your own wellness, your career. I imagine that was just affecting every component of your life.
Erin Barnett:Yeah, absolutely. And all the times I had to take work work off my sick leave that was non-existent. Um, I would have cyst ruptures at work, I would have to cancel events, and then it takes a toll on your relationship because you know it can sex can become super painful, and then males don't really understand like why you're in pain, but you don't look like you're in pain because you might just be sitting on the couch doing nothing all day, and some people are not understanding, but to you you're like in your head screaming. But because people can't physically see your endometriosis or PCOS or adenomiosis, they don't understand it. So unless you're sitting there screaming, no one will understand. That's why the more you talk about it, the more details you give, the more people will understand and you hope for that. Because I remember I was thinking to myself, I don't know how I'm gonna get a full-time job like this because I've had to leave work early, and I'm walking normal and I'm talking normal, and I'm like, oh hey, I've got to go home early, I'm in a lot of pain. It just doesn't look realistic, but that is how we deal with it. We've just been told to put a smile on our face and you know be tough and just act like it's okay, but it's not.
Sam Miklos:How did you get through the filming of Love Island and particularly like I'm a celebrity? Get me out of here. Like, were you experiencing all of these things during those?
Erin Barnett:So many people have asked me that. So on Love Island, I wore a tampon every single day because I was so scared that I would bleed because I would bleed randomly and get clots. Like I would every single day of Love Island. Like getting around your bikini every day, yeah. Yeah, I had to wear a tampon and I did get some bad cramps, but I acted like it was nothing. And then as soon as I came out of Love Island, everything just went downhill. And I don't know if it was the stress from it, like from post-Love Island stuff, but then when I was on I'm a Celebrity, I actually had um a clot come out of me one of the after one of the trials, and I was walking with a producer, Myth, and Ryan, and they all saw it and I had blood all over my pants, and it was really nice because then they offered me like a hot water bottle, and it was like leopard print, and you can only see it for like a split second in some of the filming, and I was just sitting there with the hot water bottle, and then I was just sleeping most of the days, and that's why when I got voted out, I was like, you know what, I understand because I'm not doing anything, because I'm sore and I'm tired and I'm hungry, but it was hard, it was really hard, and but I was raising awareness for endometriosis on I'm a celebrity. We've gone on to be a brand ambassador, haven't you, with endometriosis astronomy? Yes, I reached out to them years ago and I was like, I think I deserve some sort of a medal or some sort of a badge or something. I think I've gone through enough. Let me be an ambassador, and then when they took me on board, I was so happy.
Kate Coomber:It's really great to be raising awareness around these things and just having other young girls just hear stories, I think, makes them feel not so alone that there are other people, it's not just them or it's not just in their head, or it is really happening, because as you say, you can't see it.
Sam Miklos:Um and I was thinking, Erin, like um, you know, as a mother of daughters, you know, they're gonna be getting into their their early teens. What advice would you say to me? How would you say, you know, to educate the girls, what would you say, make sure you do these things? I wish that I'd known these things.
Erin Barnett:I just wish that I had more knowledge on it, but obviously with your mum, it's a bit awkward sometimes when your mum's talking to you about, you know, vaginas and periods, you're like, ew mum, shut up, go away. No, I'm so cool, Erin, I swear. And then so I would what I would love to for people to do is like give them either my book or any other books, just kind of slip it into their bedroom, let them read it, or find someone that they can talk to. I always say to people, you can reach out to me on social media, I'm happy to answer any questions, especially for young girls that only have like a father, or if they live with their grandparents or grandfather and they don't have any women in their life to talk to about this. Like I'm always there on social media and yeah, just lots of education, but in a way that the kids will respond to. It can't be boring and it has to be something, you know, fun.
Sam Miklos:Because I wouldn't be listening to a podcast. You want to you always do like a podcast talking to 14 year olds about periods and making it cool to talk about it.
Erin Barnett:Yes, I know, I know. But I'm always telling people re I speak to women daily, like hundreds and hundreds of women on social media every single day. I had mothers reaching out to me, I've got young girls reaching out to me, like what should I do? This is what's happening. And I'm always like telling them, you know, go speak to your parents or go see a doctor when you're at a s and when I worked at the school, it was the best thing because I had so many young girls come and ask for my advice, and I would be writing things down for them to go to their parents and ask for this, go see a doctor, see if you can get this test, this blood test, blah, blah, blah. And just the education around it is just so important. That school nursing sounds like a really great fit, doesn't it? For someone who's who said, They loved me there, and I loved it there. And I I wish I could go back, but then I was like, I didn't really want to do school nursing forever. But I loved it there. I think that's one of the best jobs I've ever had.
Sam Miklos:You would have been very easily relatable too. I think they would have all I know my girls would absolutely adore a conversation with you over me. But thinking about too and I mean I was I remember in your book you were saying, you know, getting your periods early. Like I got mine at 11, and you know, imagine that, like, yeah, little brown paper bag, terrified, going to the bathrooms like it was just so taboo. So even to see where it's come in, you know, what's that, 30, 30, 50, 20 years to hear, like it's such progress. We're getting yeah.
Erin Barnett:Yes, eventually we will get there. But it was good to see at the school that girls were not that worried about talking about their periods or asking for a pad, or they weren't trying to hide it, they were just grabbing it and walking off to the bathroom with it. Where back in my day in high school, oh my god, if you were seen holding a pad, that is it, like leave your school, leave the country. It was so embarrassing.
Kate Coomber:Yeah, and the boys, you know, educating the boys so that they're comfortable around it too. You know, I have a son, um, and it's really important that we talk about those things to make sure that he never feels makes anyone else feel really uncomfortable. And I feel that that's really important because I do. I remember boys pulling, you know, I had a little pack in my backpack and it looked like a pencil case, and that was sort of what mum tried to help me with, and and boys pulled it out. You're right, you may as well leave school.
Erin Barnett:Yeah, and not coming back from that, you know. Especially with boys, and see my partner's got two daughters and a son, and like he's amazing, like because obviously you're on sisters, and then he's got his own mum as well, and it's like really important. Like, if we talk about it on the couch and that, like I look around and I make sure no one's making a sound or a noise if we're talking about periods or anything, or even my husband, if I say something like, Oh, you know, the girls have both got their periods, and he goes, Oh, God's sake, why both of them at the same time? And I'm like, Oh, shut up! And he goes, Oh, what do you mean in sync? He's like, What do you mean that happens? I'm like, it's a real thing, it's a real thing. And I'm like, but we talk about it like normal and we don't whisper. And I remember going to the shops before self-checkout, like when you I remember getting my mum to buy the pads in tampon, like it was so embarrassing if you had to go to the shops and like put that pad down to buy it, but now it's no one cares, and I love that.
Sam Miklos:It's a big change, you know. Thinking back about all of your operations and just your health journey, what advice would you give to someone now who's listening and they're kind of in the Midst of of a journey similar to yours. Is there one lesson that that you look back and go, gosh, I really learned that the hard way and I wish I'd known that sooner?
Erin Barnett:I wish I had spoken about what I was going through to more people, not just my mum, and left it up to because obviously you're a child, but I just wish I spoke about it to more people. And um as much as you love your parents, I just wish I got more advice and not just second opinions from doctors, but I just wish I spoke about it to different people and just got everyone's like take on it because some women have different advice, like nans or you know, your best friend's mum or a friend of a friend. I just wish I had more people to talk to about what I was going through and if they thought this was a good idea or if they had any experiences that I could take from it. But I also know that I just I know this is really like a hit or miss with people. But I really think these days you should be going under surgery to be correctly diagnosed. I know it's a dangerous surgery, but you're having your tonsils removed when you're like four years old, that's also a dangerous surgery. But instead of giving young women a bunch of pills and then telling them to come back when they're 19 and 20, then have surgery and then say, Oh, it's actually not endometriosis or it's not that. So I've been giving you the wrong pills for six years. Let's try something else. I just want I just wish women were correctly diagnosed from the beginning and then we we can begin correct treatment. Because then you're taking all these tablets for no reason, and then that can cause more issues later on in life, and then especially women who want to have children find out when they're trying to conceive, oh, you've actually got this, this, and that. And it's like, oh well, I've been on the pill since I was 14 and they didn't mention that to me. And it's like, well, they should have. Do you know what I mean?
Sam Miklos:Agree, and I think because that's the interesting thing, endometriosis can't be diagnosed unless you've had the surgery, the laparoscopy to see. And um, I was much the same as you actually, it wasn't until they did that surgery and it was everywhere, you know, and it had been years and years of pain and discomfort, and it was in so many crazy places. Um, absolutely.
Kate Coomber:And then I think moving on from there is really understanding why this happens. I feel like that's a big gap of why so many women and girls suffer from this. What is happening to cause this condition, I guess. Yes.
Erin Barnett:And I've heard a lot of people say things like, oh, all of a sudden every woman's got endometriosis. And I remember saying to someone online, like I was getting new to an online argument, and I was like, no, it's actually been going on for generations, but only now it's been it's been properly diagnosed, and people are speaking about it because of social media. It's not every woman has endometriosis, and you know what, it probably will be like that eventually because people will be getting diagnosed and hopefully correctly like helped out quicker. But I've saw someone say that and that really annoyed me. They're like, oh, now everyone's trying to say they've got ends. No one wants it. No one wants endometriosis. No, it's not, it's the worst thing. We don't want that. Take it away.
Sam Miklos:Also, too, though, if you think about the rise of IVF over all the years, too. So there's so many more women who would have struggled to have children and just opted out. Whereas now, with all of the surgeries and all of the work that you do during that process, there would be so many more women, again, who are diagnosed with it through those procedures. So I agree, nobody wants it. It's definitely not fun by any way, but it's great that there's there's more diagnoses and more awareness.
Erin Barnett:Yeah, and I was also I was offered IVF um for the freezing of my eggs, but then when we went through it, the process of the injections makes you me more prone to grow my cysts quicker because I was growing them really fast, and for them to rupture was more dangerous. So I would have to stay in hospital for the treatment, and I was like, all just to freeze my eggs that I might not ever use. And then um my health cover didn't want to cover me for that if I wasn't going to go ahead with having a child. They would you know how your health cover does IVS? But only if if it's the whole process of you know getting your eggs, then freezing them and then the transfers, and I was like, Oh no, I'm just doing it to freeze it, and they were like, Oh, we don't cover you for that. And I'm like, that is a joke, but it was too dangerous for me to do that because people are always like, But you didn't try, you know, what if later in life you regret it? And I'm like, Okay, but that's my life to live, and that's my regret to live with, but I'm more happy that I'm pain-free. Like, when you're in that amount of pain for so many years, or you would do anything to be pain-free for 20 seconds. You would literally almost cut off your own leg to be like, Does this mean I'm gonna have no more pain? And that's how bad it can be for some women. For you, it just felt like that was not serving you anymore.
Kate Coomber:And it felt like the right thing to do.
Erin Barnett:When I look at this, when I got told I was getting the hysterectomy. Oh, sorry. No, no, go, go, go, Erin. When I was getting told I was getting the hysterectomy, I actually cried so much and I called my partner and he was like, What's wrong? What's wrong? And I was like, I've just been approved, and it was the happiest day of my life, and that's when you know that the pain was a lot.
Kate Coomber:Yeah, yeah. Look, with this episode, a CMR are going to be donating to a charity of your choice today, Erin. Where can we donate that money to? Oh, I would love for that to go to Endometriosis, Australia.
Erin Barnett:That would be fantastic. Perfect.
Sam Miklos:That would be our absolute pleasure. Erin, thank you so much for your time today and just for sharing your story. Um, like I said, I really enjoyed your book. It's definitely one that my girls will have access to. You know, every woman's journey is so um different. And, you know, I think it's so important that, you know, we we seek out education, that we make sure we surround ourselves with the right healthcare professionals and the people that feel right. And I think for you, um, just hearing, you know, you did such a great job advocating for yourself and you went through so much to get to where you are today, and certainly really inspirational, inspirational story. So thank you.
Erin Barnett:No, I really appreciate it, and I really appreciate you guys letting me come on the podcast and share my story, and hopefully this can help at least one person out there. Absolutely. Thank you so much, Erin. No, thank you.
Kate Coomber:We acknowledge the traditional custodians of the land of which we meet, who for centuries have shared ancient methods of healing and cared for their communities. We pay our respects to elders past and present.
