Endometriosis and PCOS with Celeb Erin Barnett

Oct 20, 2022 | Podcast

Erin Barnett is a public figure, having been on Channel 7’s Beauty and the Geek, the runner-up on 9’s Love Island and channel 10’s I’m A Celebrity, Get Me Out Of Here. But behind her reality TV lifestyle Erin has been battling debilitating PCOS and Endometriosis. Host Amelia Phillips and Erin discuss the symptoms, diagnosis, management options and why cases are on the rise. Perfect for Mums of teenage girls (to look out for the symptoms) or women who have unexplained irregular and painful periods and want to learn more.

Living such a public life, yet battling this privately compelled Erin to write a book, Endo Unfiltered, designed to be a guide and a friend for those diagnosed with these endocrine diseases. It’s full of all the important facts and management protocols, but written from a personal perspective, in Erin’s witty, cheeky style. 

About the guest:

Erin Barnett is a nurse, author and public figure, appearing on reality shows Beauty and the Geek, Love island and I’m a Celebrity. Erin, 27, recently published Endo Unfiltered a guide to endometriosis and PCOS. She has over 500k instagram followers and is dedicated to supporting others with these diseases. 

Below is an unedited transcript of the podcast episode:

We all had that friend at school, or maybe it was you, the one who had to take three days off every time she got her period, she complained about the pain, the heavy bleeding, the cramping. To me, it all sounded very dramatic in my teenage brain at the time, and I used to wonder, was this all real or. Maybe were they hamming it up to miss sport and to get some downtime away from school that now with so many friends suffering diseases such as endometriosis and polycystic ovarian syndrome, I realize what must have been going on, and I just scratched my head as to why no one ever diagnosed us.

This is Healthy Her with Amelia Phillips. Erin Barnett is a public figure having been on Channel seven s. Beauty in The Geek Runner up on nine s Love Island and Channel Tens. I’m a celebrity. Get me out of here. Oh my gosh, I do not know how she did that. But behind her reality TV lifestyle, Erin has been battling debilitating P C O S and endometriosis, Living such a public life, yet battling this, privately compelled Erin to write a book, Endo Unfiltered, designed to be a guide and a friend for those diagnosed with these endocrine disease.

It’s full of all the important facts and management protocols, but written from a very personal perspective in Erin’s witty, cheeky style. Erin, thank you so much for joining me today. Oh, no. Thank you so much for having me on. I’m really excited. Tell me, why did you decide to write this book? Well, the story behind the book and the reasoning why I wanted to write it was because when I was 14 years old, I wish I had a book that I could read like this one that I’ve made to put things so simple but super educational, very easy to read, and not boring because you’ve gotta think like a 14 year old if you don’t really have a good attention span.

I want it to be something you can read in your own private space. You don’t have to ask more questions once you’re reading the book. All the questions are. Yeah, it’s really interesting because, you know, if anyone just Googles Endo or P c o S, you know, you’ll get all this publications that come up and that’s just not suitable for a young person to read.

It’s not done in their language. It probably makes it, if anything, feel more scary than manageable. Talk me through your road to diagnosis. Uh, well, it was a bit of a tricky one because it all started. When I had P C O S at 14, I had a huge cyst. There was about three kilos. Three kilos, Yes. And, um, they thought I was pregnant and bad timing because I had just gotten my first boyfriend, but I hadn’t had sex yet.

Oh. So you can just imagine that doctors, um, when I’m in the doctor’s clinic with my mom and they’re making me do pregnancy tests in front of her and I’m swearing that I’m not pregnant. Oh, that’s funny. That’s awful. And my mom’s giving me that look. Tell me the truth, and I’m like, Yeah. So I did, um, like three pregnancy tests plus a blood test to show them that I definitely wasn’t pregnant before.

They went ahead and did other scans, but to be diagnosed with endometriosis. Apparently the doctors that always said to me when I was younger, It looks like she has endometriosis, but it’s no big deal. Let’s just leave it. Let’s put her on another pill. See how she goes. So no one ever really diagnosed me properly until just a few years ago, and in December I’ve just been diagnosed with adenomyosis, which is like endometriosis in the uterus wall.

So they all come under the same umbrella really. I mean that’s quite a dramatic, you know, diagnosis with the big cyst. But for a mom listening that maybe has teenage girls or for a, a young woman listening, what are some of the less dramatic symptoms and signs to look out for other than three kilo baby cysts in a stomach?

This is where it gets really difficult. Cause when I think back, cuz I have two sisters as well. I always just thought it was normal to have really bad periods. Cause I used to watch my sisters on the floor in agony and mom giving her like Panadol nerve and saying, It’s okay, it’s only gonna last a few days.

And I was like, Oh, okay. But really bad periods pain, especially when they mentioned that it runs down their leg. So that could be a big giveaway. And also if they have a lot of clotting when they have their period, that could also be another sign that maybe they have P C O S or endometriosis. It’s like these are all big signs that something could be wrong, but when, um, like say to mum’s listening, It just depends how you grew up and where you grew up.

Because like my mom, she was so old school, so that’s why it took a long time to even go to the doctors because she already had two other daughters and just put it down to bad period pain. But like we’ve learned bad period pain is a sign that something isn’t right. Okay. And so is it still possible in this day and age that a GP might brush it off as a bad period?

Are there particular questions you wish you or your mom had asked the GP or tests that you wish that they had done? Yeah, absolutely. Um, I feel like there’s a lot of gps that will still say, It’s just a bad period. Let’s put you on a contraceptive pill that might make the pain go away or might make the pain not as bad.

So I feel like when you go. The GP clinic, you need to go in there and tell them what test you actually want done instead of asking them what they think you should have done. So I would always recommend saying that you would like to get maybe an ultrasound. Doesn’t have to be internal. It could just be a general ultrasound, a blood test, anything that can speed up the process of being diagnosed, whether or not you have it, that’ll be great if you don’t.

But if you do, then you can treat it accordingly instead of being put on multiple contraceptive pills until you’re finally diagnos. Today we’re gonna kind of jump between Endo and P C O S. Maybe just super quickly, I think most of our listeners will have a general understanding of them, but can you maybe just quickly brush over what they both are just in case?

So, policies to Go Syndrome is just. It’s a hormone imbalance where it causes you, you to have cyst inside your ovaries or on the outside of your ovaries. It’s actually very common. You won’t probably even notice you even got it unless you have it really bad. It can cause infertility issues. It can, it’s quite dangerous if they do burst inside of you, but this is quite severe polycystic ovaries and, and can happen if your mom or your grandma or your sister, it’s very like it runs in the family kind of thing.

Okay? It’s got that hereditary element to it. Endometriosis is where the lining similar to the tissue in your room grows in other parts of your body. So it’s this endometrium which we shed when we have our period, but instead of it going out of our body, it’s everywhere else in our body. So it still reacts to those hormones telling us that it needs to leave the body, but it has nowhere else to go.

So, Right. It just react. That’s that pain. Yeah. So then, and obviously it just grows and grows and it gets more severely, like more painful. And then when you have both of them together, They’re like really good, best friends, but also worst enemies, . So they work very well together and they never stop. Oh my goodness.

And you spoke about the symptoms for Endo being that, you know, horrible period pain, you know, really clotting, excessive bleeding, et cetera. What about the symptoms for P C O S? See that’s the thing is they’re very similar, so, Oh, okay. That’s where it’s really, it’s really hard to differ between the pain, especially also if you have adenomyosis because the pain is just under the same umbrella.

That’s why you need to have the right GP to do the right or refer you to the right gynecologists to get these tests done sooner than later. Cuz I think it, I would rather have these tests done than be put on multiple pills and wait a few years and.  those few years, your body could be growing more cyst or more endometriosis, then it just could be getting worse when you could be getting better.

Well, let’s also talk about the impact on fertility. You know, you talk about the fact that you will not be able to have children. Uh, I wanna talk about the sort of personal impact of that in a moment. But was that always the case? Could you have had any different treatments or would early diagnosis potentially, you know, offered you fertility later?

Not really sure. I know that I was told by one of my gynecologists when I was 17 that I should try for a baby between the ages of 18 and 22. Oh my gosh. Just what every mom wants to hear out of their gyno,  telling their daughter . I know. And I was like, Uh, no. They told me because I’ve had such large cysts and they just keep growing back, that I would struggle to have a child.

They said she has another option, ivf. Then I was diagnosed with endometriosis and then they started working hand in hand. That was just getting worse and worse as I’ve gotten older. Then they told me that IVF wouldn’t really be an option because they can’t overstimulate my ovaries cuz that’s the problem that I’m having is that my ovaries are already over stimulating and causing cysts.

So it would actually be very, extremely dangerous and I would have to be monitored in the hospital while I’m on the treatment because if one burst it can be deadly. And then there’s an option of obviously adoption, but that’s not something I would wanna do. Uh, I am with a my partner who does have kids, but even if I wasn’t with someone, And I was on my own.

I just feel like all the trauma that I’ve been through and all that, it’s not something. I want, and I think maybe cuz I was told at such a young age that I would struggle. I just learned to deal with it. And then as I got older, they slowly were telling me the news that I wouldn’t be able to. And then if you are an older woman, like say you are, I don’t know, 45, not even, right?

And you’ve just diagnosed with endometriosis and being told for some reason you can’t have kids. I can understand why that could be like the worst thing you could imagine. You’re only just learning about it. But I’ve had, I’m 27 and I’ve had since like I was 14. I’ve had many years to process it, so it hasn’t really, I always thought to myself I was gonna have girls.

When I grew up, I always told my mom I wanted to have twin girls and dress them the same and all that. And then once I started having all these surgeries, made you very shy, gynecologists. So you’re, you know, not your best friends at the moment. Yeah, no. So I, and I don’t get that, um, baby fever, is that what it’s called?

Like I see a child and I’d be like, Oh, that’s a cute baby. But I don’t think, Oh, love to have one cuz I just. My reproductive organs to like, leave me alone, . I wonder if there’s even an option for younger people who are suffering from these diseases to be able to, you know, store their eggs on ice, whether it’s surrogacy or a, a different way later on.

I don’t know. I’m, I don’t know, but, and absolutely I probably should have done. At the age of 19 was due egg retrieval, but that was never, And then like freeze your eggs. But that was never an option given to me. They told me to have a child between like 19 and 22. And looking back, I probably should have done it then because my ovaries weren’t.

Stimulating that much where I was having cys every two weeks. So if I had done that, I probably could have stored the eggs and done another like surrogacy or something like that, but it never happened. So tell me, what’s it like when you meet a partner and, uh, you know, how do you broach that topic of, you know, I don’t wanna have children or I can’t have children.

Was it something that you would do, you know, straight away, First date, fyi. You know, talk me through how that, how that worked out for you. I feel like, cause I’m a very honest, upfront person, it would, it, it’s definitely just something I would mention or I would just, Say something like, Yeah, I’ve got endometriosis and P C O S.

Yeah. Um, oh yeah, I kind of have kids, but like it’s okay. And then you just talk to them and see if that’s something they want and if it is, and obviously you have to talk about different options if you guys wanna work out together. But some people it doesn’t work out that way. Just being honest and saying, cuz it’s, it’s part of you, it’s your life.

And unfortunately it’s gonna be with us forever till the day we die unless they find a cure. So it’s just a part of you. So you do have to mention.  and hopefully your partner’s super supportive and they can help you in other ways. Yeah, absolutely. And it sounds like you’ve lucked out with the partner who’s Yes.

Not only super supportive, but also a dad. Anyway, so . Yes, I know. So the world worked really well for me because, um, I’m not taking something away from my partner, Mick, of having children cuz he’s already had three. Yeah. So it kind of just worked out. Yeah. Although I’m so glad to hear that. I’m so glad that you’re happy and I can, I can see that.

I mean, what a journey for you. Most young women are, you know, out enjoying life and, you know, stressing about the little stuff. Yeah. Not, not the big stuff like this. So I’m sorry for you that, that you had to do that and I appreciate you writing this book to, to help others going through it. Thank you.

You’d mentioned earlier about a cure, that there basically isn’t one. Mm-hmm. . I mean, getting a hysterectomy is about the only way Will that get rid of all your symptoms or? Can it mutate in other ways? I mean, it’s not a cure unfortunately. Um, it can help obviously with the adenomyosis cause you don’t have a uterus anymore.

To have that grow inside of you removing your ovaries, you won’t be able to get po, You won’t be able to get any cys on your ovaries. But endometriosis unfortunately can stay there with you. And a hysterectomy is not a cure. There is not really anything out there at the moment that we can say a hundred percent will help us.

So it’s just hopefully getting more funding for research to try and find a way to fix this.

How are you managing your symptoms now and how the hell did you go through? Three intense reality TV series, including being in a fricking jungle . With all of this going on, I, Well, at the moment, like I’m sitting here and I’ve got my wheat pack on my stomach. Oh, honey, it’s honestly just gotten worse over the years.

So beauty in the geek. I was only 18, I only had a couple of surgeries. Oh, only just a couple surgeries, you know, just, just a few by the age of 18  and it’s, I, I wasn’t feeling the pain that bad then on Love Island. I think I had surgery not too long before I went on there, so, um, I was okay. And then as soon as I came out at the start of 2019, that year was just like six surgeries in one year.

It just got worse. The more surgeries you have to can also inflame adenomyosis and endometriosis so it can make it worse. But in my case, they can’t not operate on me because my cysts do pop. So it’s more life threatening. So, and in the jungle, I actually did have a really bad time, so they end up getting me a hot water bottle.

I end up having a CLO come out. Out in front of everyone while I was wearing shorts. After I did a challenge, I had all this blood. Are you serious? Yeah. I had all this blood run down me and I just grabbed the clot and I was like, It was so big. And I was like, Oh. And I just kind of threw it away and then I grabbed my sock and I put my sock down my pants as like a pad until I got back into the camp.

And how many people was that in front of? Was that in front of camera crew? Competitors? No. So it was front of one of the producers, um, which I’ve worked with him in, um, Love Island, and then two of my camp mates, so it was with Ryan and Myth, and they were like, Oh my God, that’s so much blood. Like, are you okay?

And I was like, No, no, it’s fine. I’m like, I actually feel a lot better now that’s come out because my back was really sore and I was getting bag cramps, but obviously this had to come out of me. But unexpected. That’s why it’s like, I wear tampons way too much and I’m pads all the time because I don’t know when this is gonna happen.

And that was a perfect example of it just happens whenever. Oh my goodness. I mean, if, if tho if filming those shows isn’t challenging enough without, you know, this fear of, you know, what’s gonna happen is they gonna be, you know, murdering the underpants going on. Yeah. And I know for a lot of the moms listening, um, you know, we’ve all had those crazy periods after children.

You know, you , you literally feel a trickle down your legs and you can’t believe that there’s, you know, it looks like there’s, and you can’t stop it. It’s one of those things, you can’t control it. But once it happens, and I mean, no, no one saw it in the show other than the camp mates because then they saw just how.

real that this is, and how I just kind of trotted on because in my mind it’s like you’ve just gotta get on with it. So, but majority of the time everyone pulled together, they were making sure my water bottle was always freshly, had like boiling hot water in it. They were every 10 minutes they’re like, let’s fill it back up here.

And like everyone was really supportive and I’m really glad. Slight segue, how long is the filming of each of those shows? How long are you, you know, on an island in the jungle? So I think beauty in the geek. I think it was four weeks. Cause we did it in Fiji, but that was pre-recorded, so it didn’t come out till like seven months later.

Love Island. I was there for seven weeks in Meca in Spain, and that was 24 hour turnover. So I didn’t see anything until I got home. And then the jungle, I was in there for a total of, Like all in the South African jungle for five weeks, but the filming’s also 24 hour turnover. So what do you mean by 24 hour turnover?

Like television wise? So there’s no, there’s 24 hours edit until it’s on tally where Oh, I see. Yeah. So and so are you actually in the jungle for five weeks, like living like that or do they do, like, are they ship you into the, you know, horrible bit for 24 hours and then you go back to a luxury hotel? I wish.

That’s what I thought it was. No, So you do about a week of lockdown. So, you know, you get your phone off, you, you know, communicating with everyone. Then you go into the jungle, which I was there for like three weeks, and then you come outta the jungle, you do all your interviews and stuff. So you say a few more days and then you hop on a plane back there.

So I thought that they were going to give us, you know, I dunno, burger or something. But no, as soon as you’re in the jungle, you do not leave that jungle until you are voted out. Wow. And does stress impact the endo and p c o? I mean, there are obviously three examples of kind of stressful situations. Does it impact the pain of the symptoms?

I feel like it does, only because when I came out of Love Island, which was how everyone started to know who I was, and I went through like a bad thing that happened afterwards with the person that I was on the show with and all, um, the eyes being on me. Social media people and then the news outlet. Are you allowed to talk about the bad thing that happened?

I just don’t really like to, that’s all. Oh, okay. Yeah. But if you Google it, you’ll find it. Um, okay, fair enough. But it’s, it was more like a domestic violence kind of situation. Oh, yeah. Funny. I’m sorry to hear that. That’s, But I recovered from that, and so that happened at the end of 2018 and then the start of 2019.

That whole year was just the worst year I’ve ever had with both Endo and P C O S. So then I turned it down. Well, I think it’s stress. My stress got that bad that that happened and I think it just escalated him since going through the trauma. Yeah. Oh yeah. I mean, surely we know that, you know, it’s an endocrine disease.

Our entire endocrine and hormonal system is highly sensitive to stress. I mean, it’s a stress management system, surely it’s gotta have some kind of, of an impact. Yes, and it’s also impacted my lymph. System as well. So, um, I get random swelling around my back where my pelvic area around this back really bad swelling where you can imprint your hand and then it just stays like that.

So I had to be on water tablets as well because the swelling from all the surgeries, it’s just ruined my lymphatic system as well. So it’s not great. It’s not a really great thing. Talk me through your kind of lowest point in your endo P C O S journey, and then how you got through it and have recovered from that.

Like I said, that year of 2019, I had that many surgeries. One after the other, I had the cis birth. I went into emergency surgery and I was on painkillers for nearly the whole year. So I was so zonked out. I felt super depressed because I didn’t wanna see any of my. I didn’t wanna see anyone and I was really low, like even to have my partner here, I felt like I was letting him down cause I was, wasn’t doing anything.

I just felt like I wasn’t worth anything anymore and I was in a really, really dark. Whole. And then I just had a really good support system around me. And then I went on social media and other people were also supporting me and I was realizing I’m not the only one going through this. So then I realized I just need to pick myself up out of this.

And it was really hard. I had to force myself to do things. So force myself to have a shower first thing in the morning instead of at night before I go back to bed. So it was little things like that, forcing myself to have a routine so that I had something to wake up. And then taking charge of my mental health again and being like, No, I’m not gonna let myself do that.

So then I, you know, reached out to new gynecologists and I took charge of my, my life back. It did take a long time. And then getting off the painkillers, cause I didn’t need surgery was awesome. And then obviously back into the surgery game. So now I know that after surgery I have a week of painkillers and then that.

Because you hope then you move on. Yeah. Then you move on because before it was surgery, after surgery, after surgery, and, and I was losing my hair from the anesthetic, and so I was having so much anesthetic as also my hair was so thin and I just, it was awful, but. Just regaining the strength mentally really helped me physically.

Does your book have, you know, lots of strategies like that to be that kind of big sister or that friend and guide to help others that go through what you went through? Yeah, absolutely. There’s a massive chapter on that and it gives you so many different scenarios, situations, and advice on how to get through.

Situations you may be going through at the time, whether it’s before, after, or during surgery or in relationships, or if you’re on your own and you need like that support system. This book is really, really helpful. It’s seriously like having a friend in a book . Mm mm I really like those, like, you know, the section on, like the questions you need to ask your doctor.

And if you are not getting those answers, then you need to, you know, Keep going. Like, don’t just let them brush you off. Don’t just let them move on to something else. Like keep asking the questions. Yeah. Until you feel satisfied. Mm-hmm. , I think that’s, that’s really important. Do you feel like the prevalence is high and it keeps growing Of Endo 10, 15 years ago, I don’t even think.

I knew what it was. Yeah. And now, now you see it everywhere. Have you noticed that as well? Oh, absolutely. Especially since I was 14 to now. I feel like I see it everywhere. I’m hearing about it. I’m hearing more stories and I feel like people just feel. More empowered to speak about it and not scared that it’s such a taboo subject anymore.

It’s not just a female problem, it’s an everybody problem because we need everyone around us to help hopefully figure out a cure for it. So it has grown. I think it’s growing quicker each year, which is really exciting. It’s funny, it’s a, you know, it’s a, a positive and a negative, you know, the positive that there is that much more support and understanding around it.

But then the negative. Why is the prevalence growing? And I mean, some would argue, well, it’s, it’s not that there’s more people with it, it’s that there’s just more people being diagnosed with it. Yes. But I would challenge that. Is it maybe that the prevalence is going higher? Could it be endocrine disrupting chemicals that are all out there?

Have you looked into what it could be? It’s a mix of both. I. The world we live in today, the environment that you’re in, and also that more people are going out to be diagnosed and they realize their symptoms aren’t just a bad period. But I think it’s, It is a mix of both. Yeah. I mean, I know genetics is the sort of number one pre determinator.

If your mum or sisters have it, then you are more inclined to have it. But it would be interesting to. Very hard to research, but interesting to understand if endocrine disrupting chemicals or EDCs are also having an impact. Yeah, and for, for those of you listening, which is, it’s pretty scary, but EDCs are everywhere.

I mean, the flame retardant, so your carpet that you’re walking on, the flame retardant on that. Is EDCs that slowly evaporates. That’s on couches, Teflon plastics, sun creams. I have an episode on the safer sun creams to use, and I actually also have an episode on endocrine disruptors, endocrinologist, Dr.

Catherine Samaras, if you are interested in trying to reduce your EDC exposure. But it’s a bit of a rabbit hole that sometimes I. Super overwhelming. Yes. Like you literally have to go and live, you know, in a mountain to try to avoid EDCs and still then there would probably be something that would escalate the problem of endometriosis, , there’s probably some mushroom out there that you know, does it as well.

Yeah. But look, it’s great to hear that, you know, they are researching it. Yeah. And that there are management techniques. Tell me what’s next for you? What’s next for me? Hm. I’m not quite sure yet. Um, I have been thinking about already making another book. I would really like to use my platform to reach out to other people all around the world with different culture backgrounds, different everything, and find out how they deal with their endo or, and all different ages as well.

I want to know what different generations have gone through and if they even got treated. . So that’s probably what’s next. Oh honey, I think you are just the best spokesperson for it because you are not only like the the big sister for all the younger girls going through it, but you’re also extremely articulate, extremely intelligent, and you’ve done a lot of research in this book.

So I hope that you continue on this path, cuz I think you’ll be changing lives by doing. Oh, thank you so much. I really appreciate that. Thanks for the chat today. It was fascinating. Thank you. Bye.


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