Life in Colour - 11: Why I had a hysterectomy at 41: living with endometriosis

Episode Date: March 25, 2025

In this heartfelt and deeply personal episode, Jo Clark takes over the mic to interview me as I share my story of living with endometriosis since I was 14 and the life-changing decision to have a hysterectomy at 41. We dive into the decades-long struggle of navigating chronic pain, the endless treatments I tried, and the emotional toll that endometriosis has taken on every part of my life—my relationships, career, and mental health. This is a story of resilience, of refusing to give up, and of finally choosing what felt right for my body and my future. Whether you’ve battled endometriosis or know someone who has, this episode is a raw and real conversation about pain, perseverance, and reclaiming your life.For more information: Endometriosis Australia https://endometriosisaustralia.org/ Want to learn more about seasonal colour analysis? Get my free Finding Your Colours Guide @ https://www.lovingcolour.au/findyourcolours Or want to know your perfect colour palette now? Purchase a Virtual Colour Analysis with me to find out exactly which colours light you up! Go to https://www.lovingcolour.au/colouranalysis Follow along on Instagram: https://instagram.com/lovingcolour__

Welcome to Life in Color, the podcast where we dive into the real, raw and wonderfully colorful aspects of life. I'm your host, Ashley, and I'm here to explore the ins and outs of seasonal color analysis, navigating motherhood, thriving in your 40s and beyond, and embracing health and wellness with a healthy dose of humor. Join me as we uncover the secrets behind finding your perfect palette, share stories of the joys and challenges of being a mom. And from practical tips to heartfelt conversations, life in color is your space to laugh, learn and live life. unapologetically in all of its colorful hues. So grab your favorite drink, settle in and let's add some color to this adventure that we call life. Welcome to Life in Color.

Well, hello, everyone. This week we have the lovely Joe Clark back and I have invited her on to do a really special podcast interview today. So Joe is back to actually interview me on a topic that is really dear to my heart, but also that I have battled. And I think battled is the right word ever since I can remember. So it is endometriosis awareness month here in Australia. And I know that all of you know that I have had it my entire life and that I've had a hysterectomy, but I've never actually fully gone into any detail about it. So I'm handing over to Joe today and she's going to interview me all about my health

history and what it's been like for me living with this. I'm going to call it insidious disease my entire life. So over to you, Joe. And thank you so much for being here. It is an absolute pleasure. And I want to disclose straight away, I don't suffer from endometriosis. Thank goodness for that, because having had my mum suffer and also knowing friends who have, it is a topic that is such an important one to discuss. And thank you for having me on again to talk to you about this really important topic that has been dismissed for way too long. Yeah, I completely agree with that.

It's funny. I told my son that we were doing this today. And he was like, but why do you need to talk about it? And I said for that exact reason. That's why we need to talk about it. And yeah. So over to you. So everyone knows.

I don't know the questions. So there's no premeditated answers or anything. This is literally just me on the fly answering what Joe would like to know. That's right. And also the questions that I've got, I might not ask you all of these questions. Our conversation might fly. and Eb and, you know, take us into completely. As it does.

Yep. Which I love. Which I absolutely love. And, you know, when you said a word before, and I want to pick up on it right now before I start any of the questions, it's a word battle. You know, for too long, women have, inverted commas, battled with so many things to do with their health, to do with their lives. And it really is time for that to stop.

And I'm so glad that, you know, by every person talking about something, another woman talking about something, another woman hearing it, where still. that whole notion of battling. No more battles. No more. No more battles. That would be nice. Yeah, I've got goosebumps thinking about that.

All right. To start for me, I wanted to know a little bit more about it. So I just did a tiny little, me being the person who loves to learn about things. I went on to endometriosis Australia. And I had a look at their web page. And it is quite extraordinary the information that I started to find out. So I'm just going to start us off with one fact. Yep, that would be great.

And then I want to hear your story because your personal story and what you have gone through, battled, is really important to share. So according to Endometriosis Australia, that's a mouthful, that organisation has the statistics. And they said one in seven females and those assigned female at birth or that ends up being 14% of girls and women in Australia. Now with endometriosis, that's up from one in nine and 11%. So the numbers are actually increasing. And this is based on those diagnosed with the condition by the age 44 to 49. So it means if you don't know, if you don't suffer from endo like I do,

you will know, the listeners will know, other women who do. Absolutely. All I know, and again, I'm coming from a real place of ignorance. So I'm going to use this chat that we have today as a great one because it's one word you can. Thank you. I'm aware that women with endos suffer from heavy periods and unimaginable pain. What are some of those other symptoms that you have had to deal with over the course of your disease? Wow.

Where to start. So, yes, that's what people think. And yes, I did suffer from that from a very young age. my periods would go for a minimum of 10 days even as a teenager. And I would use maternity pads. Through my entire life, I had to use maternity pads. And people think that that's where it starts and stops. And it's not, obviously, cramps can be exceptionally painful.

But it's the fatigue. Like you can get what is called an endo flare, which is outside of your period or outside of, you know, when you would normally think that you would just be suffering symptoms. And endosuffer can have symptoms throughout their entire cycle, which is literally every day of a year, you can be suffering from a symptom. Endo fatigue is just, I've got it at the moment,

and you feel bone-weary tired. It is just the most extreme tiredness. So for those who are mothers out there, it is like that first trimester tiredness where you can't get off the couch, you can't open your eyes. So I've suffered from that. I suffer from brain fog from it. So you can't think clearly.

So endometriosis is a condition. It feeds on estrogen. So for those of us who have it, we're normally running very estrogen high. And so you're literally trying to get excess estrogen for whatever method out of your body. And so we know that when you have too much estrogen, that brain fault can be really, really bad to battle. And there are some days I could sit in front of my laptop and I just couldn't get anything done because I can't actually think straight. You have what's called the endo bloat or the endot tummy where you can look six months pregnant when you're not.

And so then your whole body shape morphs and changes. And it's, I, you know, I think I mentioned in one of my stories, the other. the day that I, to my son's year six graduation, I had to wear a maternity dress because my endo tummy was so bloated, nothing else fit me. Yeah, that was awful. And I still look at those photos and I can remember how I felt I was pretty sick at that time. And heavy legs, so your legs feel like lead. And it's even like your limbs, even up to your arms now. When I was younger, it used to be my legs. And it's to the point where you'd be lying on a couch or something.

And I'd say to my husband, I can't get up. I just can't. I can't get up. So they're probably the main ones that I've had over the years. And obviously, depending on your symptoms and who you are, you know, there are some endosufferers out there who don't actually get the physical symptoms. But it's not till maybe that they try to have a baby or, or other things come about that they realize that they have it.

And then you have others who suffer from a lot of symptoms and from it can be halfway through your life or it can be from a really young age. So tell me about when you first started getting the symptoms. You said you had very heavy periods and always. So yeah. Notice something was wrong. About 14.

I got my period really young. That's a hereditary thing within my family. So I got it at 11. And it was heavy pretty much from the get-go. And I was 14. We'd moved back to Brisbane by this stage. And my mum, I, you know, battled with it. And then my mom took me to the GP.

I was about 15, 16. And their first response was to put me on the pill. And so at the age of, I think I was just under 16, I was put on the pill. I was put on a very high dose pill, which is a very high estrogen pill, funnily enough. And that helped. It definitely did help. And I was on the pill for nine years, but it didn't fully take it away. And I was still in a lot of pain.

And I would miss school because I was either, you know, you literally and you know obviously we're talking about this but you know flooding is a thing with and clots big clots are a real big thing for people with endo and uh i must have been it was year 12 and i can't remember what made us go back it must have been that mom felt that i wasn't maybe improving or getting any better even though i was on the pill and so i actually classify myself as one of the lucky ones because it normally on average takes a woman seven years to be diagnosed. And that's if they're listened to. And I was given a referral to a very old school gynecologist. I can't remember his name. And I went to schoolies for two nights

and I came home because I had my first endosurgery at the age of 18. That's the only one. way to diagnose it. So they thought that that's what I had. And so I was operated on and I was told that I had at that point it wasn't, it was probably classified because they didn't classify in stages back then. It was probably classified as maybe stage two, stage three. And back then, even now some doctors when they operate, they burn it off rather than cutting it out. And so I had it burnt off. So that was my first experience with having an endosurgery at 18 and I was told that once I got pregnant, it would all go away and I would be fine. Yeah, I think I'm the result of my mother's endometriosis. And I don't even know if it was called endometriosis back then, but because she was suffering so

badly from a lot of the things that you're talking about right now. I was the number three baby seven, eight years after my siblings were born. Yeah. Yeah. So let me go. And tell me about the that when you said cutting out and burning out for you what what are we talking where are we talking that things are being burned out because okay you're talking what you're talking. Yeah you got no idea. So you have a what's called laparoposcopy. I hope I said that right. Yeah. And it's where you have three incisions. So it's normally belly button or four incisions, belly button two to the side where you'd imagine sort of your uterus to be so it's lower abdomen and then right one right on your pubic bone and they go in with cameras

and instruments and basically endometriosis is cells that should stay inside the uterus that have grown outside of the uterus and so they attach to all different areas and at that time I didn't really know much about it and it's a very silent disease like you can't physically see it I mean, at the moment, my husband takes one look at me and he knows when something is wrong. But back then, all I knew is that I came out of surgery. I had a stomach that looked like I was pregnant at 18, having just finished year 12, because they'd blow you up with gas in order to be able to see everything properly in there. And then they're looking for it.

And so in order to get rid of those cells at that particular time, they thought burning them was enough for it to end it. And unfortunately, as we know now, that's not the case. For some women, it is that they can have one surgery and be done. But for me, it wasn't. So that's what they do when you have an endosurgery. And the thing is, because the keyhole slits are so small, you don't realize that inside, depending on,

and I don't want to make people feel queasy, you've been torn to shreds. Like it's an invasion. procedure, but you can't see it on the outside, but the healing takes a long time to go back to normal on the inside. And of course, then what you don't again realize that 18 is all the adhesions that will start to form from scar tissue. So one of the major symptoms as well was problems with my bowel. I have had problems with my bowel my entire life. And is that because the cells were growing and the

was starting to wrap itself around that area. Yes, it was going. So I've been very fortunate. I've never had to have part of my bowel removed, which I know a lot of other endo people do. But at the same age, I think I must have been 19. I was diagnosed with IBS, which, yes, I do have IBS, but endo and IBS overlap and mimic.

And so a lot of the bowel symptoms are actually my, endo. So I could swing from being really constipated to having running for the bathroom, eating something and something just literally going straight through me to then being like back to constipation. It was just this constant yo-yo. And I've had that pretty much my entire life. So you've had how many surgeries? Was it just like you said? No, I'm assuming there were more than one. Yes. So that was my first one. And then I stayed on the pill till I was. 25 and I came off the pill to start a family. So I had a family quite what's done. I guess people seem as it quite young to have started a family. I was 26. And I had three very, very quickly.

So I had three under four. And I went to have a pat test done with my, it's the same gynecologist that I have had in in Sydney. He is absolutely amazing. His name is Stephen Lyons. And he's phenomenal. He delivered all of my kids. And we went to do his routine pat test and I nearly screamed. Like I remember flinching and nearly screamed and he knew my history. And he said, Ash, I'm so sorry, you're covered. I can't actually do this. You are. You're covered. You must be covered in endo. And I was like, okay. And I had some symptoms, but my pregnancies had. masked it completely. And so it had grown like a weed.

And so I had a surgery at 31. That was my next one. I've had four in total. And I don't know whether I will need more. And I yeah, the next surgery was at 31. And that was when I was diagnosed with stage four. And it was everywhere but my tubes and my ovaries.

So bladder, bowel, pelvic wall. It was everywhere. And so what did they do in that case? So that time it got removed. It was physically cut out. Everything he could see, he cut out. And that's how they treated it.

And then at that time, which looking back, if I had my time again, I wouldn't, just because I think me and hormonal contraceptive don't necessarily go well together, but I didn't know that at the time. I had a marina put in so that then and then I didn't have periods anymore because for me the marina stopped it but for me and obviously this is this isn't a medical advice podcast or anything this is just my experience I didn't know until I had my second marina put in which was with my next surgery

at 36 that it just wasn't for me with the side effects that I suffered from it yeah And what sort of side effects were they? Headaches all the time. I'd get strange cramping in my feet, hair falling out. And the catalyst was my anxiety went off the Richter scale. So at 36, I'll backtrack a little bit. At 36, a lot of my symptoms had come back. So I noticed my symptoms, they come back about,

a year to 18 months after I've had a surgery and then it becomes, well, how far can she go until I need that surgery? And it got to the stage at 36 that I needed another surgery to go back in and have it removed again. And he recommended a hysterectomy, but I wasn't ready to have a hysterectomy at 36. Okay. So, yeah. So that's the amazing thing, isn't it?

You're dealing with all of that plus. you've got little children to care for. Yeah, that was hard. That is hard. That was really hard. And it's something, it's just been hard. Oh, darn. I wish I could wrap you up and give you a big, big hug right now.

Because that's the thing, so many, a lot of the things that women deal with, no one else can see. No. They might be you're not feeling well or, you know, there's obviously you're not your normal, vibrant self. But the pain, oh, I'm just feeling sad for you now. Yeah, the pain that you feel, the turmoil that you're going through, just the dealing with those symptoms.

Yeah, it's a lonely thing. I feel like you're a burden. And I think with any chronic illness and I think any chronic illness suffer, and, you know, they have reclassified, not all doctors, but it has been reclassified as an autoimmune because it attacks. That's all. Yeah. Not all doctors agree with that, but a number of things that I've seen.

I've read, they have reclassified it as an autoimmune because endo can be found in the lungs. It has been found in the brain. It's been found in the nose. I have a pain. Can you, like, I know you're not a doctor, but can you explain? No, I don't, I don't know how it happened. Do you just get rogue cells that float in the body? I think so.

So after one of my surgeries, I think it must have been when I was 31, I developed this pain. between, it's like underneath my ribs where your stomach is and I had every single test under the sun done, including having my gallbladder removed because we thought it was that. I've had a, I've had a lot of surgeries over my life. And we thought it was that. And I am convinced I have endos stuck up in there because when I had, obviously it's harder for me to know now because I've had a history to me. but whenever I have my cycle, certain parts of my cycle, that pain flares.

And I swear it's up in there. You know your body best. And that's the other thing, isn't it? So you've been, well, that's not, there's a horrible choice of words to say. So please, inverted. Fortunate that you were heard from a younger age. Absolutely. And that's the best choice of words because I was,

because I know that there are a lot of women out there who've had to go to multiple GPs. and multiple gynecologists in order to be heard and listened to. And I wasn't. I was listened to from a very young age, and I'm very lucky that Stephen Lyons, his focus was to do with IBS and endometriosis, and he's on a lot of the boards here and everything in Sydney. And I've never been dismissed or discounted by him once.

He's only ever been kind and caring and understanding. understanding and just listened to me. And he believed me when I said it's back, he didn't need me to somehow prove it, not that you can. But he just, he was like, okay,

well, what do you want to do? Where do you want to go to from here? What do you want to do? And I knew what my options were. So I was offered an ablation. So some people have that. So an ablation is where they remove like the inner lining.

So you stop having a period. so it takes that part away for you. And then obviously I was offered hormonal contraceptive, which we all know how it kind of masks it. It's like a Band-Aid kind of solution, really. Not for everybody. If you're maybe not as severe, it might work better for you. But yeah, eventually after that surgery at 36,

I remember him saying you'll be back. by 40 the next time I see you'll be back asking for a hysterectomy. And he was absolutely right. And I put it off for as long as possible. And if I had my way again, I should have done it at 36. Is that right? Yeah. Because I suffered.

Yeah. I suffered. Because it's such a deeply personal disease that you go through. All of these things are really, you know, you experience them. Obviously, you've got a great husband. who is there to pick up the slack for when you're at your lowest points as well. But is there a support group? Like, did you meet with other women who have the same?

No, I never did. Okay. No, I did not want to? Do you know, I never looked. It never crossed my mind. Like, my mum, so it is a hereditary disease. That was what I was going to ask you, actually, when you said auto and me, and I went, oh, I want a buddy.

It is hereditary. And I did. I asked my mum's permission this morning because I knew we were talking. Yeah. She said absolutely. My mum suffered terribly, like really, really badly. And back in her day, it was, she went to her GP or gynecologist. And I think she was offered, it was called a curate, which I'm thinking is the same

as what an ablation is today. A slightly different procedure. Okay. Yeah, I wasn't quite sure what it was, but that was what she was offered. And she was told, you. told you can have that, but it might make it 50% worse. And my mum was like, I can't cope as it is now. There's no way I can do 50% worse.

And so my poor mum just suffered on and like the same as me, like maternity pads and sitting on a towel in a car. And, you know, my husband knew and even my kids, and that's where that burden feeling comes in. When I was still having my period, they knew I was out of action for a minimum three days. And so that's one of the reasons I also chose to work for myself because I could manage around that because that happened. My period shortened down to every 18 to 21 days.

And then it would last anywhere from 7 to 10. So there was not much quality of life happening. No. And then you'd be losing that much blood. You would imagine iron deficiency would be huge. That would also increase the tiredness and the lethargy. So did you end up with iron infusions? Did you have anything?

I was on. I've always had a problem with iron, low iron. I, like when I had my daughter, I should have had a blood transfusion. I was one point above where they do an automatic blood transfusion. So I've always had problems with low iron. And yes, I was always on an iron supplement. which then created havoc with my bowel because as we know, taking iron, and then it's just this constant cycle that you're on that you just can't seem to break free.

Lots of therapies that you tried as in conjunction because I imagine you would be willing to try anything that somebody said, try this, this might help. What other sorts of things did you go through with that sort of thing? You're absolutely right. I tried everything. So after I had the marina taken out, I remember standing in the kitchen with my mum and it was Easter 2018. And my youngest had just started primary and you know, you should be in a really happy stage. I remember crying in the kitchen to my mum.

I'd had the second marina in for about six months and saying, I feel like I'm going crazy, mum. I'm nervous all the time and I don't know why. I'm always anxious. I have this, you know, that flight or flight, you lurch your stomach. I would have that all the time. It was awful. And I said to her,

I think I'm going to have the Marina taken out. And she was like, okay. So I did that. And then I got put on the pill, but I think I only lasted a month. And then I did what I, looking back, I shouldn't have done it like that,

but I was so desperate to feel better. that I went cold turkey from all hormonal therapy. So that was in the April of 2018. And I became, I was getting intolerant to a lot of foods. Like my health, I think I went down to about 40 kilos. I was really sick. And I've never been, like, my weight has always been light. I'm petite.

I've always been like my entire life. but that was a new load. And I was getting sick and I didn't know what to do. So I saw a nutritionist who was then like, because of all these food intolerances that I had, was like, let's do an elimination diet, but she took out everything. And she took me off gluten, dairy, seeds.

She took me off everything all at once. Well, I think my system went into like some kind of, shock or overreaction because I got worse and then when I started to bring any of those things back, I couldn't tolerate them. So I've been gluten-free ever since then. Over time, I've managed to bring some things back, but then anaphylactic allergies started to come up. So I became anaphylactic to sesame just out of nowhere. And then sunflower seeds. so a lot of seeds, I'm completely allergic to. So my diet, you know, I remember cooking dinner and I cook them a normal dinner.

And I'd be like, I don't know what I can eat. And I would, I remember my mom, my mom got quite upset. They were here for dinner. And I think I had a bit of chicken and some watery zucchini. And that was it. That was all that was all my plate. because I'd been restricted to what I was following this program. And I was just getting worse and worse

and I was trying anything. And so I found a naturopath. I'd read about high histamine levels and how people with endometriosis suffer from high histamine. I can't remember her surname. I found it. It's Laura. Rodden.

That's it. And I contacted her. But she was already, I think in New Zealand at that time. And I don't know if she was taking private patients then. I can't remember. Anyway, and through her, I think I found some other people who dealt with high histamine and endometiosis. And so I found a naturopath and she did.

She turned me around. It wasn't forever, but for a while she turned me around and made me. a really, really a massive difference in my life. And then I made the decision personally to go paleo because I was still losing weight. And so I was paleo until, I would say, March of last year. Yeah, which made it really hard to eat. Yeah, it would have.

I can't remember what happened, what the culmination was. it sort of goes back a bit. I thought I'm doing out. But very quickly, before we get into that, now I pretty much eat, apart from I'm gluten-free, 100% gluten-free, I have my allergies. So cinnamon, sunflower, sesame, all of those things. I can't even trace.

Like if sesame is around me in a restaurant, I react to it. I have to quit. Yeah, I have to leave. So going to Japan is out for me. Like I just, it's just one of those things. I'm like, sorry family, you're going to have to go without me. Yeah. Because I can't do that.

But now I eat dairy. I being paleo, you couldn't have rice or grains. And I've brought rice back in, which is just so nice. So nice to be able to have rice. I'm intolerant to corn. So pastas are harder one for me, even though I love pasta. I buy a grain free one, a cassava flask. flour pasta from the US, which costs a fortune, but it's amazing.

It means you can eat it, good. I can eat it. Yeah. So generally, yeah, I eat a lot more normally and I'm back up to my pre-pregnancy weight. Excellent. Oh, that's good. Yeah. But it's all linked.

Like the whole thing is linked with food, with weight, everything, the whole lot. It's linked. And that's a thing because what you are explaining now, the length that you've gone through, well, your cycles, what they were like, the amount of surgeries that you've had, how it's basically an everyday experience. That's been your, that's been your adult life, basically, hasn't it? Yeah. The emotional toll then must be huge.

How do you get, how do you pull yourself up sometime? Without tooting my own horn, I think I'm pretty... Put away. I think I'm pretty resilient and I think people around me would say that I'm pretty resilient. I've got a pretty high pain threshold as well. And it all started. So I had my endo first endosurgery at 18 and I would put it down to this. This is just me personally.

Other people might not agree. I develop breast lumps at 19. So I had my first breast lump removed at 19. and then I had two more removed a year later at 20. So I had three surgeries, three years in a row at a very young age. And when one of the first one, it kept growing and a benign tumor shouldn't grow at the rate that mine did. And so we had it removed and it was only after it was removed. They found out that it was a Philode's tumor inside a benign tumor.

inside a benign tumor. So there was a bad one basically inside, completely encased inside a good one. Yeah, I became a teaching case because they'd never seen anything like it. And I think when you've had surgeries and had to deal with health stuff at such a young age, it totally changes your perspective on everything.

And, yeah, I've never really thought about it. I've had times of like this really sucks. Like I don't like it, but I don't think I've ever really had a pity party. I see myself as one of the lucky ones because I was able to have my three children. And I've said in my private life again and again, I would go through what I did to be so lucky to have not had to have had any intervention to have had my children because it was the only place in my body that the endo wasn't was my ovaries and my tubes. that is amazing isn't it because a very good friend of mine she's you know she had endometriosis

countless surgeries and that's the thing she was on IV for quite a long time and so i will forever grateful yeah yeah holy yeah it's quite extraordinary when you when you're talking about your story and and thinking about now and again coming from the the point of view that your hormones are changing going to be changing naturally the levels has anyone talked about what happens to a woman who suffers from endo once you start to go through Perry and beyond? Yes. So it's really hard for someone with endos. So like I mentioned, there are some people who their endo doesn't come back after they've had a surgery

or after they've had a hysterectomy. Mine is back and I know that it's back. I get telltale signs like cramps, uncomfortable with intimacy, because obviously that is also a side effect for a lot of women. And so I know that it's back. The problem with people who have endo, who are then going on HRT, is that endo loves estrogen.

So you're always told that when you hit menopause, your endo will go away. Well, it might, but the thing is you're going to have all these other symptoms that you're then trying to combat. So which is the lesser evil? And I think for me, you know what? I've never known any different. So for me to continue it and I just have to look after my body, like the flare that I'm in now, the warning signs were there. and I knew the warning signs were there

and I didn't have a choice. It was so busy with the kids and there's been a bit of stress and there's been other bits and pieces and I could not stop and rest and I knew it would get to a point where my body would literally say enough and I would end up in bed for a couple of days

or even more, which is what's happened. And you just have to write it out. Once you're into that stage, you can't stop it. You're in it. So yeah, that's going to be really tricky for me. And it's finding somebody who will be able to guide me through that and help me through that. So I have a new naturopath who's amazing. She's fantastic.

And she's very well versed herself to do with endo. So she talks a lot about bioidentical. Is that right? Bioidentical. Is that the right phrase? I think of what, Bioidentical is just a term, but that's,

that's with all of the, well, the estrogen gel, that's bioidentical. Yeah, so she's very, what I love about her, she's very scientific based.

And she, it's not just about natural supplements, because natural supplements with me with my allergies is, is a bit of a mine field. So she's open to all of it. And so she'll say, no,

I think you need to go to your GP or a specialist, but ask them this. She'll give me the specific things of what you need. to and at the moment we're trying to figure out how best to test my hormones because I don't have a cycle so I don't well I do but I don't know where I am in it I have no idea welcome to Perry with that one yeah well just having you've got you've got no idea ways though which is just extraordinary to think of what you're having to do as well yeah

yeah and and like obviously you're going through Perry now your mum's post menopause. So is she got symptoms that she's dealing with now as a much older woman? I've never asked her, but no, as far as I'm aware, no, it'd be a good question to ask her. But no, I think she's good. She runs low on iron as well, always has.

And I think that might be one of my problems at the moment. I think I probably need a bit of iron, even though I'm not having a period. Iron deficiency can still be, obviously, thing. But yeah, no, I've never, I've never really asked her about that. But mum, that was when she, when she was going through, it was when HRT came out to be like, you shouldn't be taking it.

So my mum never was given any. And I think she needed it. Yes. She did that help. She had a terrible time. Yeah. Yeah. No, it's quite extraordinary.

Now, so what advice would you give to, like, someone's listening to this and what would you suggest? You have to keep going. You are the biggest advocate for yourself. If you feel that something is not right, you just have to keep going. And I've had to do that a few times with other problems with my bowel or pelvic floor after my hysterectomy. You have to keep going. So if you're not being listened to, find someone that you can go on to the endometriosis page,

Australia page and do research and ask friends. I think a lot of people don't talk about it. Everyone in my life knows and knew that I had endo. I never hit it. Like you mentioned, my husband is amazing. And I'm very lucky with that. So, so supportive. But I'm also teaching my boys that, you know,

this is a normal part of life for a woman that what I go through isn't or shouldn't be normal, but to be respectful and understanding and kind when it comes to understanding that part of what happens with a female. Because I think that's, you know, even in the workplace, it's really important, like if Christian comes into contact with someone through his work for whatever reason, and they have it, he deeply understands it and he doesn't just dismiss it. And I think more workplaces need to be like that, because it's not just a normal period. It is, debilitating and it can just take over. Yeah.

And thankfully, government are now recognising what an impact it has. Yes. And therefore, what happens to her economic future as well, because that's compromised. You can't keep on taking dates off. So they're the sorts of things that I think, at a societal level, we're now starting to get more understanding, more support. Yeah.

But I think if you're not wanting to do the medical route, there are, so there are options out there. You can go, there are specialist ultrasound places where you can go and you can actually have ultrasounds done where they're looking for endometriosis and adenomyosis, which I'll explain what that is in a second. They're specifically looking for that. Do your research, if you're looking for a gynecologist, do your research for someone who has endometriosis.

experience and the way that you do that, use the mum groups on Facebook because they are a wealth of information, the community groups. Like, for example, in the area that I live in, Northern Beech's Mums is a fantastic resource when you're looking. And so you get people's experiences of, yes, I went to see them and they were fantastic. Oh, you know what, I was a bit dismissed. And obviously, I know it's all, you got to be careful. People got to be careful what they say.

but also if you can get a recommendation of someone that you feel that you could trust rather than just literally a name that's given to you out of a random thing of like a GP's like, oh, you could go see this person, but I don't know anything about them. Just do your research. And they can be wealth of information. If you wanting to go down the natural route, there are definitely natural supplements that can help you. There are some natural supplements that have helped me so much over time.

won't necessarily name out what they are because this isn't like a medical podcast, but there are. It's not a one size fits all. That's why. So find a really good naturopath who can help you. Exercise with endometriosis is key for a number of reasons because the adhesions, everything gets stuck. So I had things.

I had organs stuck to each other and stuck to my sides. because it's a bit like glue and tentacles. So keeping everything moving is really important, whether it's going for a walk, doing some Pilates, yoga, some stretching, whatever. Exercise is really important. There are certain things with diet that can make it worse, and this is known. Glutin, dairy, alcohol can really impact.

I get sick when I drink alcohol, and it's because of my endo. I can't tolerate it at all. And when I have dairy now, but when I was having my periods, I didn't have dairy because it made my periods much, much heavier. So there are things that you can do yourself, but then make sure you go and get help. And obviously, I know surgery is the last resort, but if you've got a good specialist, they will guide you to do.

So self-advocacy, mouthful again, is key. Because you have to speak up. You know your body best. You know what's going to be working. And also having, you've talked almost like having a health team is really important. Find out the key people who are going to be important for you. Yes. To help you manage the disease.

Yeah. And know that it's really hard when you're, you know, in front of your kids and you're in a lot of pain. Like my son found me at the top of the staircase. and my husband had to come up and pick me up. I couldn't move. I literally had cramps about it. I was just stuck in a place and I get that occasionally. And they know because I just stand completely still.

It's like shooting pains. Imagine for one of a better phrase, a hot rod and it's twisting. And that's what it feels like. So I still get that to this day. And so I just have to stop and breathe. And it's like they all swing into action. someone gets me some comfy pants to wear. Someone gets me a heat pack and a hot water bottle.

Someone will make me a hot chocolate. And they all just swing into action because they know that that's what I need in that moment. So I think trying to get your family to understand as much as you don't want to be a burden, that there are sometimes you just need to be looked after. I'm very lucky. Yeah.

Yeah. Well, I'm glad you are because there would be women who... There are a lot of women out there who aren't. No, but it's dismissed. And that's a battle on a whole other front. Oh, and speaking, well, before we go back to talk about that, you said you were going to be talking about end. Oh, admiosis.

Okay, so when I realized I needed a hysterectomy, my bowel had stopped working. And that's not an understatement. I literally could not go. And now all these years on, I know that there was multiple things at play within my pelvic floor and my bowel and my endo together. But it had stopped working. And my mum was like enough. You fought enough. You've tried hard for four or five years. Enough. You've got to go back and see Stephen. And I knew exactly what he was going

to say. And he sent me for one of those scans. And this time, they didn't just find, endometriosis they found adenomyosis and adenomyosis is where it's like tentacles that push through your uterus and grow all on the outside like a jellyfish basically um and so i had that as well so that had what will that cause and what are the symptoms of that very very heavy periods very similar to endometriosis, but they're just different. So it literally, it cells that grow from the outside and push through and then come through to the other side of the citrus. Gotcha.

Whereas endo kind of can grow. Endo was on my bladder, my bowel, my pelvic walls. Yeah, it grows all over. And so I had that on top. and the only way that you can get rid of that is to have a hysterectomy. Gotcha. And I knew that's where I was headed. And it wasn't a decision that I took lightly.

And for me, a lot of women struggle with, there's the mental and emotional side of having a hysterectomy about the fact that, you know, I'll no longer, even if I didn't want to, I'd no longer be able to have children and I don't have my uterus or that I found me. That wasn't an issue for me. I just wanted to feel better. I had,

it had served its purpose. It had done what I needed it to do. It delivered me three beautiful children and I was ready to say goodbye. So I booked in quite quickly to have my hysterectomy done. And so when I did, it's funny, people say that I looked grey before I went in. My skin colour changed that I was so unwell.

looked really unwell and the flush of pink came back within like 24 hours of having had my... And the recovery wasn't easy. And then my pelvic floor seized at 11 weeks post-historectomy. And when you say ceased, just tell me what it means. It's like every, all the muscle. So I have what's called a hypotonic pelvic floor. So this is, I know it's really in depth.

with me. And not everyone with endo will have this, but pelvic floor issues looking back, I had that for a while. And it's because my pelvic area was so inflamed my entire life. It contributed to it. So basically, when my, when my bowel, I thought my bowel stopped working because of endo, I think it was also the pelvic floor and the muscles within that area were just so inflamed. And then I, I, weaned off all of the medication and some what I thought was like constipation was starting to come back and I'm like you've got to be kidding me and it's funny like having had endo I thought I knew what bad pain was this pain was something I had never experienced in my life and it was like feeling

without being two TMI that you had to go to the toilet and not for a week all the time and it never went away. And I lived like that for months, months and months. Did that mean, did you become more housebound then? Because you, yeah. I completely shut down because I was just in so much pain. And my naturopath was trying to help me. But no matter what I was taking, magnesium made it worse.

It was some cells made it worse. I would go to pelvic floor. So being diagnosed with a hypotonic, it means it is so tight, like so tight that nothing wants to move. And so I thought, I went through that. And then I restricted my diet because things were flaring it. And we went to the States and I kid you not. I remember thinking, how am I supposed to do this holiday feeling like this?

Well, you just do. But I would eat like a beef burger patty, some lettuce, some hot chips. And I was having a smoothie. That's pretty much what I was living on to try and stop flares. And then it went in the other direction. It then, I don't know, what happened. Even to this day, I don't know what happened. And I flipped in the other direction.

and I was going up to eight times a day. And we thought there was something seriously wrong with me. So I went and I had colonoscopies done. This was when you came back to Australia. Yeah, you had all of this. Yeah, yeah, okay. This was the end of 2023. And I...

So recently. Yeah, yeah. So I had my hysterectomy in March 2020. And on June 21st was when the pain started. And I was just like, you've got to be... Yeah. but it's all interconnected and people have said, would you still have had a history to me?

The answer is yes, because that pelvic floor issue was already there. I just didn't know about it, but it's all linked and it's connected. So yeah, but I'm in a, I found a, I've tried so many things. That's one thing with me. I don't give up.

I never, ever give up on myself. Or if it's a family member, they know that. don't give up. So I kept going and going and going. And that was when I was like, one day I was like, stuff it. I'm going to have an ice cream. And so I did. And then I was like, I'm going to try rice. And I think what was missing in my diet, I didn't have enough to literally bulk out my system. I was having things like fruits and vegetables and stuff that would literally just be digested and really quickly. Yeah. And I found an online lady from the

States. She's called Dr. Brie. And she has a pelvic program called Overcome. And it's supposed to take three months. And I started that in July and I'm still like stuck in month too. But you take it at your own pace. And it was all, the first month was all about relaxing the pelvic muscles, getting them to literally let go. And I think my whole system, my entire life, has been hanging on for dear life. and when you've had that many surgeries, it's bound to have repercussions. Yeah. And they're big surgeries.

And so I do that when I'm well, because at the moment I haven't been well, but I do that every single day, that program. And it has been a life changer. So you said before that you're going, your feelings are you in a flare up? Just a mini flare up evento at the moment. Yeah, it'll calm down.

It will. It will. So you're confident that it will? Yeah, I've just got to write it out. Okay. It's rest. It's literally eating well, not eating too much chocolate, which is my one thing. Like, I literally have it next to me, my family block of top deck.

Yeah. But yeah, as of now, there are always, I'm always going to have issues. issues. Endo's always going to be there, I think. Pelvic floor issues are always going to be there, but it's about how you manage it. And mindset is everything. And like I have tried everything. I have tried naturopaths and acupuncture and surgeries and obviously pelvic floor Pilates. I did hypnotherapy to settle my nervous system down so that my digestive system could just take a breath. hypnotherapy was amazing. Like that, that worked really, really well.

But it's not a one thing that fixes everything. It will, it's all of it coming together. And it's a holistic view of how you're going to manage your endometriosis. But also it doesn't mean that that's fixed you for life. So my bowel's been a bit unhappy in the last few weeks. And I've started doing the hypnotherapy again. And even in my own head, I was like, I wish I didn't have to do this again. I thought I was done and it's learning that it's a maintenance thing that when something pops up,

so stress is a major kicker for endometriosis. Huge. And that's why it's probably really important that you find those pockets of time, not to be proactive rather than reactive, isn't it, just to self-care for you? I mean, self-care for everyone should be a high priority, if not the number one priority. Yes. But I knew that I was, and listen to the signals. I even said to my husband, I'm pushing it.

And he was like, I know. And so it wasn't a surprise. So like I've got a bit of a cold and everything anyway. So that doesn't help because obviously your immunity goes down and it can flare. But it was literally yesterday. I was like, this is more than a cold. My arms and legs feel really, really heavy. So it literally is riding it out, taking care of.

of myself watching some TV and it will pass. Yeah. Cross fingers are going to happen less and less in the recovery time will be faster and faster. So I was thinking when you asked me to come and do this podcast with you, just as recently as last week, there was a well-known radio presenter who made the most unthinkable remarks in a very poor attempt of, humour. He claimed that endo was made up. And for a lot of people, because it is such a silent disease that you were the one who is experiencing, you can't see it from the outside.

How does that make someone who has suffered so incredibly much throughout the entire adult life, how does that make you feel? I mean, as a woman, it just made me feel anger and just rage. And thankfully he's no longer on air. But, you know, what the hell? So it made me really angry, really, really angry when I heard that. But then I went into the comments section. And there were thousands of women in those comments, thousands, and not just ones who had endo, but ones who supported women who have endo.

because I will put it out there. Not all women understand. They're like, it's just a period. It's not all women, I think, even understand what others go through. They're like, are you just winging? You know, there's, I would love to put a machine on him to simulate what it is like. And then he'll understand how excruciating it is and how you literally can't breathe then you can't move or you're stuck on the toilet for hours because it's given you

diarrhea or you're watching your kids look at you when you're in pain. That something enough is the hardest bit because you never want your kids to see you go through that. But it just made me really mad, but then it made me so happy to see that flurry of comments coming out of women saying, you have no idea what you're talking. talking about you're talking at your ass, virtually. And if you don't understand it, then just, you're just so ignorant. But I'm really happy that there are so many men out there who are trying so hard to find

cures or trying to help women, like my gynecologist, like there's, I can't remember his last name, Professor George, who he's the one that developed this ultra- so that not all women have to undergo surgery to be able to see if they've got endo or not. There's research happening in the Western Australia, which will be amazing, like for my daughter, where it's through a blood test. They'll be able to see it through a blood test. You're constantly feeling like you're having to prove to someone something's not right. And that's what makes me angry because you should just be believed.

it's you shouldn't have to prove it no no i just i need to do yeah they they need to do more yeah they certainly do now actually there's one takeaway that you want listeners to remember from the conversation that we've had today what might that be for other sufferers you're not alone because it is quite lone like when you mentioned about a support group i it had never crossed my mind to even try and find other people. So do that. It's a really good place to start and to don't suffer in silence, tell people or tell someone that you think you might be suffering

or that you think this might be. And I'm really hoping it's a turning point because it does seem to be that more and more women are suffering from this. So I would like them to find out why. that's my biggest thing is well why why just some women have it and some don't and I'm so grateful that so many women don't but there's so many of us that do so what is it like get to the cause of not just trying to stop women from suffering but what is it that causes it so we can try and get ahead of that yeah well thank you for sharing what is such a

deeply personal story and I'm absolutely privileged that you've given me, you know, the honour of asking your questions about today. I've learned a whole lot more and I've certainly learned a whole lot about you and what an incredible woman you are to show up and day after day, even if you're feeling at the depths of the lows that you are and just, you know, thank you, thank you for sharing. It's a difference. You know, thank you so much for interviewing me. I think I couldn't have done this without you.

I couldn't have articulated it, I think, in the way that I would have wanted to. So thank you because I know how busy you are at the moment and you've taken time out of a very busy schedule, including a cyclone coming your way, to be on my show and interview me so that my listeners can hear my story. So I really appreciate it, Jo. Thank you. Absolute privilege.

Thanks, Ashley. Thank you so much, everyone for listening. If you have questions, feel free to send me a DM. You can send me an email to. Ashley at LovingColor.com.A.U. That is color spelt with a you. I'm always here to chat. And if you need help with resources or if you are local to me and you're looking to maybe go see someone, send me a private message and I can give you the details of the people that have literally saved my life over the years. So thank you.