Endometriosis with Kath Sloan and Emma Dixon

Endometriosis is a chronic and painful condition which affects about 176 million women worldwide. One in 9 women suffer (almost daily) with this condition which impacts a woman's physical, emotion and social wellbeing. 

There is currently no cure, the cause is unclear and diagnosis takes an average of 7 years.

Kath Sloan and Emma Dixon are passionate about sharing their lived experience of endometriosis so that more women are aware of the condition and seek help and diagnosis. This is an intergenerational conversation with Kath in her 50s and Emma in her early 20s sharing their wisdom and insights.  This is an episode to share with your friends, family and the men in your life to raise awareness.  

Warm thanks to:
Sponsor: Females Over Forty-five Fitness in Victoria Park
Sound Engineering: Damon Sutton
Music: William A Spence
... and all our generous and inspiring guests around the warm table this season!

Transcript

Sonia Nolan: 0:00

Welcome to My Warm Table. I'm Sonia Nolan and season two of this podcast about passion and purpose is brought to you by Females Over 45 Fitness or FOFF, in Victoria Park.

Introductory Voice Over of Previous Guests: 0:13

My name is Kate Chaney. My name is Bonnie Davies. My name is Madeleine King. My name is Valerio Fantinelli. My name is Lyn Beazley. My name is Alexandra Helen Flanagan Hi, my name is Sharon Todd. My name is Lucy Cooke and I'm the CEO of SpaceDraft. I'm the first Aboriginal female funeral director. CEO and founder of Motion by the Ocean. I'm a psychologist and a professor in psychology at Curtin University. CEO and founder of Lionheart Camp for Kids. Around My Warm Table. Or listening on Sonia Nolan's My Warm Table. Just sharing a yarn with her.

Sonia Nolan: 0:37

During Season One of My Warm Table I received many messages of support and also ideas for episode topics. I remember clearly one morning receiving an urgent and passionate text from a longtime friend saying, "Sonia, you have to talk about endometriosis." She said, "people need to know and I really want young women to be aware of this condition." Coincidentally, I just caught up for coffee with a younger friend who I taught at university. And at 21 years of age, she had recently been diagnosed with endometriosis, and was equally passionate about talking of her experience and making sure women knew about this debilitating and often misdiagnosed condition which affects one in nine Australian women of reproductive age. So we're having a really important conversation around the Warm Table today that I hope you will share widely with men and women to raise awareness. But please especially share this episode with young women who may be struggling with symptoms, but don't yet have a clear diagnosis. I am delighted to welcome a Kath Sloane and Emma Dixon to My Warm Table. Kath is a longtime friend. We met through our daughters a long time ago when they started kindy. Kath's a fabulous hairdresser, a community volunteer, a mum, a sister, a devoted daughter, and one of those people who is always ready with a chat and a laugh. And Emma is a dynamic young woman with a degree in Social Justice, Politics and International Relations. She is travelling the world and working in hospitality and has her sights set on making a difference in climate change and social justice policies. Emma is positive, kind, smart and really hard working. And what is noticeable about both of these women is that despite often being in chronic pain, they are wonderful to be around. They remain generous active, engaged in their communities, and often the most positive people in the room. So today I'm keen to understand more about their passion and purpose in talking about their lived experience of endometriosis. Kath and Emma, welcome to My Warm Table.

Kath Sloan: 2:51

Thank you, Sonia.

Emma Dixon: 2:52

Thank you, Sonia.

Sonia Nolan: 2:54

There's so much we can unpack today. But I think we really need to start with the definition of endometriosis. So Emma, did you want to start and tell us what this disease is? Or is it right to call it a disease?

Emma Dixon: 3:08

I would say yes, definitely you can call it a disease. I think previously, endometriosis was considered a reproductive issue. However, it's actually moved into more of a immunity issue now because of the fact that the endometrial cells are found in parts of the body where they're not supposed to be. So endometriosis can be found all around the body, meaning that it's moving away more from the reproductive health, which I think is where Kath and I have found that the pain and the mental challenges sort of lie, is that it's not just specific to one area. Maybe Kath could identify the correct definition maybe?

Kath Sloan: 4:01

Well, Emma, you know, it's interesting when I'm 56 and you're 21 I think the thing with endometriosis, even listening to the way that you have explained it, it is certainly a condition that back in my time that we really didn't know anything about you know, we you suffered in silence you know, you didn't go you didn't get it checked out. You just took drugs and you continued to go on with life so.

Sonia Nolan: 4:30

Was it considered a bad period?

Kath Sloan: 4:33

I would say for back in our time. Yes you did. You just considered okay. It really was probably day one and day two. For me, Emma.

Emma Dixon: 4:43

Most definitely.

Kath Sloan: 4:44

Which was the most painful time.

Emma Dixon: 4:48

Yes, definitely. Definitely.

Kath Sloan: 4:50

Okay. And I think after that it sort of would settle and then it would peak again.

Emma Dixon: 4:56

Yes, around ovulation it would peak for me again. That's when it would start to become intense again, the pain would come back. And then the first, second, even third day of my period would be where I'd be like, "Okay, this is going on for a little bit longer than it should" and then all the other symptoms started to come as well. Absolutely.

Kath Sloan: 5:18

And, you know, the symptoms that you are getting is, is this chronic, pelvic pain, and it actually affects you in your back. It affects you when you go to the toilet. It affects every part of your life. Is that exactly what's happened to you too?

Emma Dixon: 5:38

Same with me, I remember distinctly. When I was at my peak of the worst part of my endo for probably two or three years, I couldn't even sit down on a chair, I would struggle just sitting down, that movement of having to sit down and then when that weight would sort of give in once you've sat down is it would go straight to my lower back or my pelvic area. Same thing with exercise, I couldn't run. I was a competitive netball player for probably five or six years. Then when I probably was around 18 years old, was where the pain just got too intense that I couldn't run, I couldn't exercise, sitting down on the toilet would hurt, going to the toilet would hurt. All those sorts of movements, which are daily movements that you have to do. Were really, really just tainted with that pain or uncomfortable feeling. And then like I said earlier, then it trickles down into your mental side because you haven't got a diagnosis. And you're just confused. And it doesn't make sense and it doesn't add up. So I think I can definitely relate to the pain, the pelvic abdominal side of it. For sure.

Sonia Nolan: 6:48

Kath you're nodding sagely there just everything that Emma has just described. You're just nodding. You've lived this many times. And what did the doctor say though? Did the

Kath Sloan: 6:55

Yeah, that's exactly right, Sonia. I think that the doctor say it's something else? Is it - is it your imagination? thing is, nothing has changed from when I first- I wasn't diagnosed with endometriosis until after I got married, which Or is it just a bad cramp? Toughen up. Were those sort of was 26. And this probably the years before that, I thought,"Well, why have I got this pain? Why is it so severe?" Hairdressing, standing the day, I was not feeling great the first couple of days wondering why that this was happening. And there was, every time I'd go to a doctor, it would be just you just take medication and keep going. hard love type of things there? Oh, look, definitely. I think even for yourself, I think you would say to yourself at that stage, just toughen up, you know, every women- all women are going to be going through aspects of...

Emma Dixon: 8:00

Of cramping.

Kath Sloan: 8:01

Of cramping and stuff. So yeah, why are we any different? But I think what you notice is different is that the pain gets worse.

Emma Dixon: 8:08

Yes, yes. Yes, it does. It does. But then you start to second guess yourself thinking, is my pain tolerance just low? Do I have a low pain threshold? And then I think you'd have a similar experience in that, you'd go to the doctor and they would say "Oh, but cramps are normal. It's a normal part of the first few days of your period." However, just because it's common amongst women doesn't mean that it's a normal thing that should be happening.

Kath Sloan: 8:36

there is that for me to not find that till I was 26, till when I was married, it comes down for me then fertility and I just really want people like Emma and others to to know what they are diagnosed with. It is endometriosis, and endometriosis then needs to... we need to be more knowledgeable about it and we need for things to happen. So it happens through the next generation that they will...

Emma Dixon: 9:17

That's exactly right.

Kath Sloan: 9:18

Or are able to do something.

Sonia Nolan: 9:21

So I just want to go back to the official definition of endometriosis, right, so I've got it here written that it is"endometriosis occurs when tissue similar to the tissue normally lining the uterus is found in other parts of the body, such as the ovaries, the fallopian tubes, the peritoneum, which is the membrane lining the abdominal and pelvic cavities, and also the outside of the uterus. And like the tissue lining the uterus, these tissues respond to hormones released by the ovaries leading to bleeding." And I guess that's why it happens around that period of time. "And this leads to inflammation and scarring which can cause painful adhesions between pelvic organs that are normally separate." So it actually grows and joins the organs, particularly in the pelvis, together, which is why it's so painful. It just sounds horrible. It sounds horrible.

Kath Sloan: 10:13

Yeah. I think that once you realise what it is, and

Emma Dixon: 10:14

That's exactly right. That's yeah, very, very once I started down the track of finally getting a diagnosis, we true. And I think Kath's experience is a little bit found that the endometriosis had grown on a lot of my organs on the pelvic wall. Obviously, it's very much in the uterus, it was different considering our age difference, although with Kath, also on other organs in the body. And, and that was what was causing the, A; the pain. But for me, I was on that next stage maybe the knowledge and information and awareness of of my life where I wanted to have a child, and really not endometriosis was a lot less compared to now. I was at the knowing how much is this going through parts of your body? Which I know Emma, you've just had an operation done. You just stage where I was young, trying to push for any diagnosis think well, how much is it's effect? It's- how quick does it grow back? How is this going to affect for the rest of your life? because I knew what I was feeling was not normal. So I

Sonia Nolan: 11:13

Is it so that with endometriosis, in order to get a knew that something wasn't right. However I was pushing to an actual diagnosis, you have to have a laparoscopy, you actually essentially tell a doctor, can you please give me a referral or something to solidify that I'm not going crazy and that have to have some sort of surgery where something goes something is genuinely wrong with my internal workings? internally has a good look around and then if it's there, cuts it out.

Emma Dixon: 12:11

Yes.

Sonia Nolan: 12:12

And that's the only other way of diagnosing endometriosis, that's really invasive.

Emma Dixon: 12:16

It's really invasive. And also it's not

Sonia Nolan: 12:17

And it's diagnosed with irritable bowel syndrome. financially viable for everyone to have that surgery. I know a lot of my close girlfriends, they have had very similar symptoms to me. Even girlfriends who are older than myself, who have very similar symptoms to me, however, they don't have private health or they just don't have the finance. They're not in a financial situation where they can opt for a surgery. So they're left thinking I don't really have any other options because that is the only option to get a diagnosis whether that be for endometriosis or any other reproductive diseases or conditions. I had two separate ultrasounds The first was an external ultrasound and nothing Another one that seems to be the centre of endometriosis is what came back abnormal on that one and then two years later, I had a second, I had an internal and an external again, nothing came back. So then yeah, the next step was surgery to have a formal diagnosis of anything, you know, it might not have been endometriosis, but it was. people think, oh, it must be IBS. So you pushed for a diagnosis and you actually

Emma Dixon: 13:32

Yes, and I think a lot of people get confused with IBS. I think that in the western medicine world, IBS is labelled as a condition however, in the more naturopath world, IBS is just a group of symptoms to label sort of, to label a few symptoms together that are inflammation of the bowel of the bloating, diarrhoea, constipation. However, when that- when you get a diagnosis of IBS, there's nothing you can actually do because it's not the root cause. It's just, you know, labelling that you've got this cluster of symptoms. And so you're correct in saying, Sonia, that IBS goes hand in hand with Endo, because it's very, very similar symptoms. And I think GPs are very reluctant for whatever reason, to hand out referrals or to even have a conversation about endometriosis. My doctor wouldn't even talk about it. They- there was no mention of the fact that I could have endo for many years. specifically requested to go and have a laparoscopy? Yes. So I... going back to when I first sort of had my issues. I had my first period when I was in year seven. So I was about 11 years old, which is quite young. So I think that's set me up for a high chance of having endometriosis, and then my auntie also has Endo. So those two going hand in hand are not a great start. And then my periods were regular. So that sort of led me to think, oh, maybe I am genuinely just weak. And I'm not...

Sonia Nolan: 15:21

Not tough enough.

Emma Dixon: 15:22

Not tough enough, yeah.

Sonia Nolan: 15:23

And Isn't it awful that we have to think like that?

Emma Dixon: 15:25

Yeah it is, it is. So that was probably midway through high school, I was sort of going back and forth thinking, "oh, I don't feel okay. But I'm being told that this is normal, or I'm just not coping." So then I kept talking to my mum saying to her that I just don't feel okay, this doesn't seem normal to be needing time off work, off school. So then that's when I pushed for the two ultrasounds to happen. And then I saw probably three to four doctors to ask for a referral or to ask for more tests to be done. And again, there was no real mention of endometriosis or PCOS or anything like that. There was no mention or...

Sonia Nolan: 16:13

Can we just go back, PCOS s Polycystic Ovarian Syndrome? Which is another cousin of Endometriosis.

Emma Dixon: 16:20

So another reproductive issue that I think gets again confused with other less intense, less intense conditions. And it's just not spoken about because I think especially for someone my age, there's the- it always goes back to "oh, but you're too young to have this, you're not really at a childbearing age as of yet," especially when I was in high

Sonia Nolan: 16:45

You're not socially at a childbearing age. But school. physically, you're absolutely childbearing age because the, you know, the symptoms are from often 15 to 44 is when the most reported symptoms are according to my research. Now, I'm just going to pop in here every now and then with stats, right? Because I've done the research, you ladies have the lived experience of this. But building on the stats that I found, apparently, according to a survey by Endometriosis Australia, 91% of women with endometriosis reported experiencing pain that affected their ability to work, and 62% reported missing work or school due to their symptoms. And so that can really lead to financial strain, missed opportunities and decreased productivity just at that sort of work and school level, let alone like you've mentioned, Emma, that the mental stigma about am I tough enough? Or, you know, isn't this supposed to be normal? Doesn't everybody have cramps, but what you ladies experience is something on the real severe chronic side.

Emma Dixon: 17:47

Yes, and I think because my periods were regular, I was like, "Oh, well, then technically, I just might not be tough enough. Because if I'm having a regular period, then my body is functioning as it should." But then I started to get the really heavy periods, like I said, for the first day or two where you're curled up in a ball and you're losing so much blood, and then it starts to become cluttered blood because your uterus isn't shedding consistently. So it's the stop, start. So that's where the cramping comes in. And then you get the bloating and the really heavy abdominal pain, all started and I think that's when I was like, "Okay, this definitely isn't normal." And finally went to my doctor and said, "I need a referral." And then that led to surgery. So it was a process, a very long process. And again, I think that's why a lot of girls sort of just give up because it's such a long process. And if you don't advocate for yourself, you really don't have anyone else in your corner, which is really quite scary.

Sonia Nolan: 18:51

It is, isn't it? And apparently, it takes that seven to seven and a half years on average for women to actually have that final diagnosis, of Endometriosis, that is a long

Emma Dixon: 19:00

It's a very long time to suffer. And I think at time. any age, it's horrible. But I think as a young teenager, who should be running around having fun, I was constantly thinking whether it'll be the week of my period, or you know, the three weeks off, I was thinking, I can't have this I can't do this because it will set off a certain symptom or I can't, you know, move a certain way so I would not go out or I would try and you know, shape my whole life around how I knew I was going to feel, which is quite debilitating and it's very mentally exhausting.

Sonia Nolan: 19:35

It's draining, sure.

Emma Dixon: 19:35

Because not everyone understands and not everyone is aware. So then they don't have that sort of softness towards the conversation which makes it really difficult. And going back to the seven year diagnosis of how long it takes. I remember I- after my surgery I had woken up as the anaesthetic wore off, and I was still in the hospital bed and there was a nurse there "And I said, oh, like what happened?" And she said, "you've been diagnosed with Endo" and I almost cried because I was like,"this has been almost a decade of me guessing like, am I normal? What's wrong with me? I feel so out of place." And then for someone to tell me that in such a haze of coming out of anaesthetic, I was like, oh my goodness, this is like, the weirdest feeling of relief and validation, scariness as well, because I was like, Okay, this is the next journey to then manage a proper formal diagnosis. But I think Kath could probably relate, when you actually have tangible evidence and tangible confirmation that something is in fact not right, then you're like, "Okay, we can work from here."

Kath Sloan: 20:43

When you hear that side of things for, for me, I didn't start my period until I was 16.

Sonia Nolan: 20:52

Oh, so you on the later side.

Kath Sloan: 20:54

I was on the lighter side. But unfortunately, for me, as I got to about 21, things started to get more and more painful. I was finding it hard with work, with standing on the- on my feet, this terrible pain the first couple of days, your periods. And then really, so it was 10 years, I was 26. We were trying for a child. And then they decided after I pleaded that I needed to go and see what is going on because there was something going on, but no one sort of really knew. And even in those days, no one...they just said, "Well, just keep trying. Just keep trying and relax, relax, have a glass of wine."

Sonia Nolan: 21:36

"Take a holiday and you'll get pregnant."

Kath Sloan: 21:38

You're fine. And you'll get pregnant, you know?

Sonia Nolan: 21:40

Sorry, I laugh because it's just ridiculous.

Kath Sloan: 21:42

I know. And that's exactly what was said. So, you know, the problem with when you have laparoscopic surgery, which I've had 15 laparoscopic-

Sonia Nolan: 21:56

15 Kath?!

Kath Sloan: 21:58

Over my time, it creates scar tissue, because our journey was then becoming- I was wanting to have a child and nothing was happening. And we were having fertility problems. So once we did have the operation to see what was going on, finally, after, so it was a 10 year period, Endometriosis. But Endometriosis then was still not really knowing whether it was going to be a problem for fertility, particularly if I was going to go through IVF. So my journey with IVF was- I'll just shorten it a little bit. I had in between times of 15 laparoscopic surgeries, we had eight fresh retrieval of eggs. And then we had seven to nine - we had frozen embryo transfers, each one of those we had two to three embryos put in. Yeah, we didn't get a pregnancy at all. With IVF. No pregnancy.

Sonia Nolan: 23:08

How long did you go on that cycle?

Kath Sloan: 23:10

We did it. We took seven years, seven years that we went on this cycle. Which I think really the problem is, and I met a group of women that were at Pivot, that we were - when we were going through there, that suffer with endometriosis. And none of us were having any success, there was something missing.

Sonia Nolan: 23:33

And they weren't looking at that either, were they? It was basically you do the fertility cycle, they've got a formula of how it works. And on the assumption that everybody's = every woman's uterus is exactly the same and no real individual understanding of reproduction in women particularly with endometriosis, which again presents differently in different women.

Kath Sloan: 23:56

It does, it does. And the thing is when the embryos are put back in, unless you're... and what was

Sonia Nolan: 24:02

Oh, really? happening. Well, what they found was happening was that the endometriosis if there's anything in there, it was killing off the embryos but here you are waiting for two weeks for your result. And then of course is that it was really they were gone doesn't matter how good of embryos they were.

Kath Sloan: 24:21

Mm. The endometriosis. He told me. You've still got the endometriosis inside even after sometimes after laparoscopic surgery, then it was killing off the embryos and the problem was the more fertility treatment or the more hormones that they're pumping into your body when you didn't succeed, then the endometriosis was back with vengeance and that is where we become very difficult because you go there and you want a result. And I think you know this is just my side of it where it just becomes a door that I wanted result. But the result was "I've gone this far, we have to keep going." And what we ended up doing after many years

Sonia Nolan: 25:04

And how old were you when I told you that? was then we ended up going over to get a second opinion in Melbourne. And I was told that I needed to have a hysterectomy from Professor Carl Woods. He said you have a two month, two month period before you will be really...it will be...it was everywhere. I even - would you believe I even had it up on my lung.

Kath Sloan: 25:32

So when we went over there we were probably 28/29 when we went.

Sonia Nolan: 25:43

When you were told you need to have a hysterectomy?

Kath Sloan: 25:45

Yes, yes, but he said, "I'll give you a little bit of, you know, give you that short period of time to see how we go. And I think at that stage, we thought, "well, we've got nothing to lose," because we had our names on the adoption list to adopt a child. And we come back, and we fell pregnant, out of just- out of the blue, we just fell pregnant and...

Sonia Nolan: 26:09

Miracle.

Kath Sloan: 26:09

And we end up having, all after having the seven years of IVF. And just, you know, I think I was the longest standing person there. Because when you're paying money, you want results. And it just wasn't happening. So I think to fall pregnant naturally with Kayla, and we had her. And then unfortunately, five months after Kayla was born, I had an ectopic pregnancy. And so that was sort of it and then hysterectomy.

Sonia Nolan: 26:40

So how old were you with your hysterectomy?

Kath Sloan: 26:43

I tried to last longer. Because I was desperate to have a second child, I didn't want an only child, my husband's from a family of seven. And I'm from a family of three, three girls. So I was trying to hold off as long as I could, even after the ectopic pregnancy to see if there's anything else we could do. So they were trying different other measures. So in the end, I had the, it was hard to accept to have the hysterectomy, because that's the end. 38. I think, you know, after all injuring the seven years of infertility, of pain and then of - we really needed to, I needed to shut that chapter.

Sonia Nolan: 27:23

Of course, you did.

Kath Sloan: 27:24

And that's why it's important. Like for Emma, that the younger generation that I just so want her to make sure that you do everything in your power for the stage that - when you get to the stage that you have, you're wanting a family, that you- you actually make sure that everything is in place. Because it is a journey that I think you just don't realise how difficult that with endometriosis can cause so much problems with infertility.

Emma Dixon: 28:00

Yeah, a lot of problems. And that was my biggest worry was the infertility side or, you know, amongst the pain and, and the uncomfortable feeling and the missing out on things, that was one side of it, but then thinking oh my goodness, if I, you know, at one stage of my life, I want to be able to have a family and I can't, that's going to weigh over my head for probably the rest of my life. So I was you know, that was in the back of my mind even when I was still quite young. So I think that probably pushed me a lot more to make sure I had a diagnosis or I was moving forward somehow. But it's on the flip side it's hard because a doctor probably won't raise and with a 19 year old with that as your sole motivation.

Kath Sloan: 28:48

"I want to have children one day", yeah.

Sonia Nolan: 28:49

But you've got plenty of time.

Emma Dixon: 28:51

Definitely, and technically on the outside, I'm healthy looking.

Sonia Nolan: 28:55

Yes.

Emma Dixon: 28:55

I'm active to an extent, I eat very well, I don't really do anything crazy. I you know, you're in a routine, I was studying, I was working so like Kath said earlier on, it is a silent-

Sonia Nolan: 29:13

It's invisible.

Kath Sloan: 29:13

Yeah, invisible.

Emma Dixon: 29:14

Yeah, it is because on the outside you look totally normal.

Kath Sloan: 29:18

Well that's and you know what you cannot believe, I just could not believe- I was like you Emma, you know, I'd play tennis and was active and I just could not believe that my body, this body that we've got that we're you know, both eat, you play sport, you're healthy. Just had this disease, had Endometriosis, how did you get it? My sister has also had. She's had it but she was able to... not as much as what I had.

Emma Dixon: 29:48

Not as severe.

Kath Sloan: 29:49

Now I think it's also gone back in some of our generations as well. And also the- we have also checked out my daughter Kayla, and she will have some type of form of it, we have taken her to a specialist. But of course, once they do laparoscopic surgery, they get scar tissue. So until, this is the thing, until you're ready to have a child, you've got to have a partner to have a child, they don't really want you to do anything. But then how do you know that you can't have a

Emma Dixon: 30:24

Exactly. It's actually funny you say that, child? Kath, I think it was probably two months ago, I was sitting on the couch with my mum, and I was talking about coming on the podcast with Sonia, and I was saying to mum, "I genuinely think next year, I'm going to have to look into freezing eggs, at the age of 22/23." Because if I get to a stage where I do want to have a family, just having that safeguard is probably going to be one of the best things that I can do. So having to think about that, that forward, majorly forward planning is huge. I don't know anything about it. Yet, I know that if I'm lucky enough, I would like to have a family. So that's sort of my next step is thinking about freezing eggs, because what else am I supposed to do?

Kath Sloan: 31:09

Look, Emma, the thing is with, you don't have a choice really, and endometriosis also, as you as you're getting older. It's- you're also, as we know, when you're first, you're fertile at a certain age. And as you're getting older, not only are you dealing with a disease, but you're also declining in how well or how fast you fall pregnant. So you've already got- you've got two issues here. And this was my race against time when we were doing the IVF. Because the thing was, when you're racing against time, thinking oh God, I've got nothing wrong with my husband. But here I've got a body that you know, why is it I can't fall pregnant when I'm, you know, when I'm perfectly fit and healthy, but it's not working. And I think that's what makes you so angry. And then you get on - it's like getting on a roller coaster and you can't get off because you get so much into it. And you just want the results. And I think you get determined. And I think my one thing with endometriosis and I can see it with Emma as well, is that I think you gain a lot of strength. I think you really do become; Right. Okay. You know what you want, you know what possibly you may have to do. It's not ideal, but you know, you're safeguarding by taking - if that's what you have to do you do.

Emma Dixon: 32:38

You just do it to get through, you put one foot in front of another. You just keep moving forward. And I think that's what really played on my mind for a long time was that,"Why does my body hate me? Why is it not functioning normally?" And that's what the mental side of it for me was just debilitating. I was like, why is my body working against me? I've not done anything wrong, per se. And I was like, you know, I was looking at all these other girls thinking they can they can go and do this. They're going to the gym, they're going out, they can eat whatever they like. And I'm suffering in silence, and yeah, and bedridden and in chronic pain. And then I was just you know, you have this self doubt of like, why is my body not working? What have I done to deserve this? And yeah, it's really horrible. It's a really hard mental state to be in because there's no, there's no relief in it. Because it's a constant pain, it never really goes away. It subsides for, you know, a couple of weeks, but it's always there, it's always lingering over so you don't really get a break in it.

Sonia Nolan: 33:47

So right now, are you feeling some sort of pain from your Endo? What struck me as I was doing a little bit of

Emma Dixon: 33:52

A little bit, it's quite funny ask that Sonia because my last period was probably two weeks ago. And the last couple of days I've had a lot of symptoms that are indicating to me that I'm either ovulating or I'm getting a period. Which is weird, because after my surgery, I've actually had a lot of great results, I have a lot less pain, I can run again, which is the most liberating thing ever. I can sit down and I don't even have to think about sitting down because it's just normal for me now. But I definitely have probably every three months a period where it's quite heavy, still a little bit cluttered, quite painful, and then throughout the month as well, I have a lot of period symptoms; not getting my period, but just those period symptoms of the abdominal pain, the weird random cramping, the bloating, that is just out of nowhere. So yes, the surgery helped and I feel a lot better, but it's research into endometriosis was that it can be anywhere. And we definitely still there and it definitely still lingers over your head because I'm sure Kath would relate to, "Okay, is this food going to inflame me more than normal, how am I going to respond to this sort of exercise?" So it's a constant battle that you're really having to overanalyze everything that you do, which is very, very draining. talked a little bit about how, you know, in the pelvic region, but Kath, you mentioned that you even had endometriosis near your lungs? So it helped me understand this.

Kath Sloan: 35:26

Well, you know, to me, I always thought, like, I would explain it as, like just this bacteria that just - it just like grows over your organs. And of course, when you have that laparoscopic surgery, they're basically trying to peel it off.

Sonia Nolan: 35:44

But they can only see so far, surely.

Kath Sloan: 35:47

Well, I mean, even for example, I've just had my gallbladder out. Now, the reason why I've probably just had my gallbladder out is because with the endometriosis, they found that the gallbladder was still stuck to the pelvic wall, which had been from when I've had endometriosis. So even though I've had a hysterectomy, as they say, sometimes it never leaves you, there's only - if there's one cell left, it just grows, but I don't get as much pain because I'm not getting my periods every month, like you, Emma. So you know, it's, it is a terrible, it's just a whole terrible bacteria that is just inside on a lot of your organs. And it just because of your bleeding, and it's outside the uterus, then it just becomes like bacteria,

Emma Dixon: 36:38

I actually received the internal photos after my surgery, which was really interesting.

Sonia Nolan: 36:43

That would be good.

Emma Dixon: 36:44

Yeah, so that was really cool to receive, because again, that was just that validation of, okay, it actually is a physical thing inside of me. And funnily enough, it was found on my urethra, so every time I'd go to the toilet, it would move more, it would tear more, and it would just continue to grow and spread, hence why I'd go the toilet in so much pain, which at the time, I was like, this is just crazy how much pain I'm in just going to the toilet. And then that made a whole lot of sense when I got those photos back as well. And then it was also found behind my uterus, just sort of behind my ovary, not on my ovary, but in that area. So the photos were really interesting to see how the dark blood is just sort of dotted all over. It's not it's not necessarily like a blanket on everything. But mine was sort of dotted all over enough to be... enough to affect whichever area it was in, it would still have an impact. It looks small, but I think in the scheme of things where it sits, it actually does impact the internal functions of whatever organ it's on or if it you know, connects an organ to the pelvic wall. Yeah, it still has a pretty big impact.

Kath Sloan: 38:04

Absolutely. And endometriosis is, is a disease that I don't think that any of us understand. I mean, here here we are sitting today, you know, you could have - any of us could be having endometriosis. And it is so important that if any one has any of the pain that's you actually need to get it checked out. Because it is not, it's not normal. And the longer you leave it like, you know, Emma, being at 21 and me not being able to do anything until it's 27. Because no one realised that was Endo, there was no such really thing of endometriosis. Even I remember going to a doctor and he said "it's really - endometriosis is like a careers woman's disease."

Sonia Nolan: 38:56

A career woman's disease.

Kath Sloan: 38:57

And I said, "Oh." I thought about it. I thought"What does that mean?" And he said, "basically, it's leaving your children too late. And the endometriosis has spread?"

Sonia Nolan: 39:07

Oh, wow.

Kath Sloan: 39:09

And that meant that you know, your chances of falling pregnant in where I was in my life is very small. And even with IVF the statistics for endometriosis are still very low. And you know, I've spoken to a lot of friends that have gone - still going through it now. And theres just so much more we need to understand, why it is not working for a lot of us.

Emma Dixon: 39:36

Yes, I agree. And that's the scary side of it is, although I had a diagnosis early on, I'm still thinking we don't know enough to safeguard the future of my generation, of generations to come. Because you're sort of stabbing in the dark because you don't really know if you're going to have fertility issues or not. Because some women are okay and then others not and that's where Sonia was saying that, you know, every uterus is different. And unfortunately, it's the surgery that can give you that answer or not. Which is why I think a lot of women just give up because it's a long process and there's not a lot of awareness about it. And you're told it is normal.

Sonia Nolan: 40:20

And interesting that you say that because the Australian Government a couple of years ago launched the National Action Plan for Endometriosis and the three areas are to raise awareness and education in regards to endometriosis, also to look at clinical management and care, and also more research into endometriosis. What struck me though, is that the amount of money that's poured into - well, poured - trickled, little, little trickle into endometriosis is in 2019 to 2020, the Australian government allocated $2.5 million in funding for endometriosis research. Now $2.5 million, I don't think goes very far. Now by comparison, I thought I'm just going to look at a comparative for this - prostate cancer, which obviously is only in men, endometriosis only in women. So prostate cancer in that same year was allocated$62.6 million in research funding. So there's a huge gap just in the amount of funding that is going into these particular diseases. And look, I think all diseases should be funded to understand them better. But when we're looking at one in nine women in Australia are potentially or are diagnosed with endometriosis. So that's one in nine, we all know more than nine women, right? So chances are we all know someone who's got endometriosis. And women make up slightly more of the Australian population than men. That's another little fact. Why are we not spending more money in trying to understand this debilitating chronic illness?

Emma Dixon: 42:02

Yeah that's very true, Sonia.

Sonia Nolan: 42:03

Makes me grumpy.

Emma Dixon: 42:04

Yeah, it's a very frustrating side of endometriosis culture, if you will. I know that my GP, one of them, she was - almost had a lack of knowledge for a doctor, it sort of surprised me her lack of knowledge. Being a female doctor as well, she didn't know a lot about endometriosis. And that might not be a fault of her own. It might be a fault of the medical system and her when she got her degree and went through medical school.

Sonia Nolan: 42:35

And I guess GPs are expected to know a lot about a lot of stuff. So, it's hard from their perspective but endometriosis being something that we we understand is so common.

Emma Dixon: 42:44

Yes, being so prevalent in society, I would have thought that, you know, the four doctors that I saw, at least one of the four would have a little bit more knowledge about, about the disease. But I remember distinctly, I went to her probably a couple of times a year pushing for some sort of recognition, whether it be a referral, or some more testing or anything, she just continued to put me on the contraceptive pill. And I think that's a very, very, very scary side to endometriosis. Because when you go on the pill, it essentially turns off your reproductive workings. So all your symptoms are masked because you're pumping your body with hormones, which essentially balance your hormones but in a artificial way. So you switch off your reproductive side, and then all your symptoms sort of disappear because you don't have a period. And when you don't have a period, you don't have any symptoms associated with Endo, which is really terrifying, because a lot of doctors will just prescribe the pill, thinking that it will help a girl's cramping in particular or heavy periods. But really, it's just dulling the the side effects or the symptoms sorry of endometriosis.

Sonia Nolan: 44:05

So is endo still growing in your body, even though you're not feeling then the symptoms of it?

Emma Dixon: 44:10

Yes, so it's still growing. It's still there. It's just masked by all the artificial hormones that are within the pill. So a lot of girls will go on the pill and think, "Oh, I have solved my issues. It's okay." And that's what happened to me multiple times. I think I was probably put on three different contraceptive pills. And on a baseline level, yes, it helped, obviously, because that's what it's meant to do, it's meant to...

Sonia Nolan: 44:42

Make you feel better.

Emma Dixon: 44:43

Make you feel better. And then when I came off the pill, everything came back tenfold. It was heavier periods, more clotted periods. I was spotting, probably two or three times a month when I wasn't supposed to be even on my period. And then it just sort of went downhill from there because everything just came back really intense. And that's very terrifying that girls my age are being put on the pill, and they don't have any information, whether it'd be about the pill, or about endometriosis, or any other reproductive health issues.

Kath Sloan: 45:20

that was the same as what what I did as well, is that you think, okay, if you want a little bit of peace, from the pain, you go on, you go on the pill, or you go, they put me into menopause, you know, when I was trying to have a baby, to cool it down inside, calm. And then and then try again, trying all these different ideas. But when I did get - like you were saying when you did get your period, because you had this, you realise how nice it was where you've just have no pain, you know, you don't have the pain. But then once you go off the pill or you go off the medication, then it's back within you. And it's it's actually worse,

Emma Dixon: 46:09

Much worse. And the scary thing was I actually saw a combined health doctor, so she was a naturopath and a western medicine doctor. So she practised both. And she did a big blood test for me of pretty much everything that you can do just to really see where my health was at. She knew my previous, well, my past history with this was before my endo diagnosis. So she knew the history of my periods and where I was at with other health things, got the tests back, and my oestrogen hormone was 700 units higher than it should be.

Sonia Nolan: 46:49

Wow.

Emma Dixon: 46:49

So it should be within the ranges of I think 30 to 400. Pre menopausal. So for the younger girls, that's where it should be. And mine was at 1100. And she didn't pick up on that to be potentially an issue. And so I did a bit of research myself, because to me, you know, your hormones fluctuate, of course, whether you're on the pill or not, that's quite normal. However, for your hormones to be that high, at the time of the month that I was tested is quite extreme and quite terrifying. So I did some more research. And I think there's a lot more, a lot more research going into your hormone, like hormone testing, and the link between the ratio of your hormones and endometriosis. I think a lot of women are coming into that and realising that if you have hormonal issues, some of the time that does have a very strong link to endometriosis, unfortunately.

Kath Sloan: 47:55

It does, I mean, what they did for for me was they - and it's not even heard of now is CA125. So it's a cancer level, to see what your levels are in your body. And like you, Emma, my levels were were super high, which gives them an indication because you have laparoscopic surgery. But then you can't keep going in to have it done all the time because it's creating the scar tissue. So once Emma is ready to have a child, if she's had multiple, multiple laparoscopic surgeries, there's scar tissue happening. So what they were trying to do the CA125, which is the cancer - is a cancer level, though we check that if it's high, then they would forego the embryos. And then what they would do is in they'd put you on another drug and rest your body for six months to not get a period and then go for it again. It's a chronic illness and that is where, Emma, you have to be at the forefront. I mean, I, you know, when I was going through, I was so passionate, I'd see things about it and it would just make me angry that there was just - there was nothing about it. But there was also another issue that I just thought, a lot of hairdressers, you know, that I worked with, none of them had children and a lot of us had endometriosis. And then it started me thinking now, Is it anything to do with chemicals? Has that, you know, come into it? And there were other issues there. That I just thought, you know, we need to- there needs to be a lot more.

Emma Dixon: 49:38

It's the broader sense. Yeah, I think genetics plays a massive part in it. But then also doing my research a lot of the fake or artificial estrogens that you're exposed to in deodorant and makeup, hair products, all of that that exacerbates your oestrogen because your oestrogen reads that and then produces more when it shouldn't be and so you're literally a breeding ground for more Endo. So I think just having that awareness of the Western medicine, which goes a very long way with surgeries and medication, but then on the flip side of, you know, knowing to eat clean, leaner, and as organic as you can, because pesticides and herbicides are again, really, really, toxic for endo on your body in general. And just being aware of what you consume, what you're exposed to, mould exposure is a really big one for Endo, which a lot of people don't know. And a lot of people don't know how to identify when you're being exposed to mould, which is quite scary. And then, ironically, a GP, if you've been exposed to mould, they'll give you antibiotics, which lowers your immune system, which then makes the endo you know, more feisty and ready to attack because you're, you're at a compromised vulnerable state. So it's just having that awareness of every little thing that you are sort of around or exposed to is really, really important.

Kath Sloan: 51:05

Absolutely, Emma. And that's where, as I said, it's just lovely hearing your passion. Because, you know, sometimes you get to a stage in your life, even though I've been- Sonia knows how passionate I was about it, but you just, you know, there's just so much that you can give to people and I think you can, Emma, you're going to be the, you've got to make a difference, you've got to fight through everything, because you will, okay? And once you get to the, because the other issues, you know, when you do find that partner, there's also intercourse, it's very painful, right?

Emma Dixon: 51:44

That was my biggest symptom.

Kath Sloan: 51:45

It's very painful. So you're thinking well, "you can't have intercourse, well then, how are you gonna have a baby?" But then you do and it's painful. And you're thinking oh.

Emma Dixon: 51:53

And that's not how life should be, you shouldn't be having to live life like that.

Kath Sloan: 51:56

That sort of stuff, it should be all really just flowing, you know, it's like life is meant to be like a butterfly, and you flow into the next stage of your life. And it just doesn't work like that.

Emma Dixon: 52:09

No. And it's super uncomfortable. And then again, that plays on your mental health, because you really start to self doubt. And you really start to just self sabotage.

Kath Sloan: 52:18

And this is the other thing. I mean, even like, we didn't talk about this sort of stuff when we were younger, probably Sonia and our age group, it was something that you just didn't talk about, and to now being able to talk about it and to make people aware. And that is the only way that's going to happen. Because...

Emma Dixon: 52:39

How else?

Kath Sloan: 52:40

How else? How else, is if it's not going to make people aware of it. And you know, we've got, we've got a job to do. And we've, we've got to get people to listen and to understand. But Emma, my passion here is to make a difference where we can get better pregnancy rates, better pregnancy rates, at fertility clinics. Yes, there is a percentage of girls that will fall pregnant that have got endometriosis. Unfortunately, these days, a lot of girls are not getting married till later. They're having, you know, professional or travelling, like what Emma's choosing to do, and that's wonderful. But when it is time, because you've got endometriosis, it can become a very difficult situation where you're not falling pregnant. And then that's when the age comes into it as well. So we just, we need more research, we need to know what is causing it. And we need to help the younger generation and it's got to start very young, it's got to start once you're starting to get pain, we need to be able to diagnose it much - even much earlier than what Emma had.

Emma Dixon: 53:54

Yes, yeah. And just realising that a certain level of cramping is normal. But then when you're debilitated and you've got the clots and you've got the abdominal pain. And you're just sort of, you know, hopeless when you're on your period. I think that's when you definitely start looking in- looking into getting a diagnosis or just even, you know, starting the process of figuring out your body. Reading into the signs and symptoms starting to understand where things start to feel a little bit off where you start to feel a bit off about yourself at different times of the month. It's important to just have that self awareness, I definitely think at an earlier age. And be there for each other. I think that's the hardest thing is because it's a very isolating disease because it's not spoken about or it's just the whole toughen up, get on with it. But it's really hard. It's a hard thing to go through. Because it affects every aspect of your life, unfortunately.

Sonia Nolan: 55:00

Ladies, this has been the most amazing conversation. I'm so thankful that you've been so candid and so raw about your experiences. As a young woman being newly diagnosed with endometriosis, Emma, thank you for for your journey to date. There's there's a time ahead, and Kath for your warmth and your generosity and your real passion for making sure that young women have got a smoother ride than what you've had. So thank you for joining me around My Warm Table today.

Emma Dixon: 55:32

Thank you, Sonia.

Kath Sloan: 55:32

Thank you very much, Sonia.

Sonia Nolan: 55:35

Thanks for joining me Sonia Nolan around the Warm Table. Let's grow the community. Please follow My Warm Table podcast on socials and like and share this episode with your family and friends. My Warm Table is brought to you by Females Over 45 Fitness. Keep listening now for a health tip from FOFF head coach Kelli Reilly.

Kelli Reilly FOFF: 55:56

Hi, it's Kelli Reilly, founder and head coach of Females Over 45 Fitness. Alcohol consumption. Okay, right. We generally have alcohol affect us more because we have a lower body weight than what men do. And we can absorb alcohol more quickly than they do, which means we can get tipsy. When we get tipsy we can get dehydrated and the body needs to stay hydrated. Okay, because we often have hot flushes and night sweats. So with your alcohol consumption that can create joint pain, more night sweats, poorer sleep, changes in our mood, of course, and even nutrient changes in the body. Okay, so ladies drink in moderation. Okay, enjoy nice wine, of course, but don't binge drink. Remember ladies, it's your time to shine.