The Wellness Connection with Fiona Kane

Living With Endometriosis: Symptoms, Struggles & Treatment Explained | Ep. 127

• Fiona Kane • Season 1 • Episode 127

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Living with endometriosis can be overwhelming, especially when it takes years to get the right diagnosis. In this episode of The Wellness Connection Podcast, Fiona Kane sits down with Courteney Hills to share her personal journey - from the first symptoms as a teenager, through the struggles of being dismissed by doctors, to finally finding effective treatment overseas.

You’ll learn what endometriosis really is, why it’s often misdiagnosed, how it affects the whole body, and the treatment options available today. Whether you’re newly diagnosed, supporting someone with endo, or just wanting to understand this condition better, this honest conversation offers both knowledge and hope.

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Linktree: https://linktr.ee/endovetnurselink

Learn more about booking a nutrition consultation with Fiona: https://informedhealth.com.au/

Learn more about Fiona's speaking and media services: https://fionakane.com.au/

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Credit for the music used in this podcast:

The Beat of Nature

Music by Olexy from Pixabay



Fiona Kane:

Hello and welcome to the Wellness Connection Podcast. I'm your host, Fiona Kane, and today I have another guest. It's been a little while since I've had a guest, so it's good to have someone else here. So I'd like to say hello to Courteney Hills.

Courteney Hills:

Hi, thanks for having me.

Fiona Kane:

Hi, Courtney, it's good to have you on Now. We're going to be talking today about endometriosis, and I think it's a really important topic that still not enough is known about it. I heard a little bit of your story and I thought, okay, that's probably a really interesting and important story to share. So maybe just start by just telling us a little bit about yourself, Courtney.

Courteney Hills:

Yeah, thank you. I am 26 years old. I work as a specialist veterinary nurse in a busy hospital in Sydney in the internal medicine department. I live in the beautiful Blue Mountains. I really love hiking, being out in nature, of course, all things animals and, yeah, just spending time with my friends and family.

Fiona Kane:

Yeah, great, great. And so start telling us actually, before we even talk, about your story with endometriosis and actually I'll just get you to speak a little bit louder as well, if you can. You've got a quiet voice like me, so just try to speak up a little bit. But before we even start talking about your story, can you just tell us a little bit about what endometriosis is?

Courteney Hills:

Yeah, so endometriosis is a chronic inflammatory condition, and it's defined as cells similar to the lining of the uterus. The word similar is really important. It's not the lining, it's tissue that looks similar, but pathologically under a microscope it is different tissue, okay, and it grows most commonly in the pelvis, but has been found in every organ of the body. Most commonly affects cis women, but has been found in fetuses and a handful of cis men in case reports, as well as some animals as well, and so it causes chronic inflammation and pain. It can cause adhesions, stick organs together, invade organs. It's kind of like a cancer, but not cancer. It kind of acts in a similar way. Yeah, they don't know how it's caused and what forms it, and yeah, they're still really researching this disease that's been around since the the 18th.

Fiona Kane:

I didn't know did you just say it can affect men?

Courteney Hills:

yeah, it's been. There's been case reports of it in cis, men yeah I, I've never heard of that before.

Fiona Kane:

I didn't know. Yeah, yeah, okay, there you go learn something new. Um, and just for the purposes of this, look, I uh, everyone's a bit different with their personal choice, but I don't use the term cis. I don't believe in using the term cis, but just for those who maybe haven't heard of it essentially cis refers to the fact that you're in the body, that you haven't changed your sex or you're not trans or anything like that. So basically, a cis woman is a woman who was born as a woman, as a girl. A cis man is a man who was born as a woman, as a girl. A cis man is a man who was born as a man, so that's, but I just don't use those terms. I understand everyone's got their personal choice, but I think for the purposes of this it might be confusing for people as well.

Fiona Kane:

So just basically woman or man, that's just forget the words for cis for the purposes of this, I think it'd be simpler. But yeah, I had no idea, though, that it did affect men. So there you go. Uh, that's something, and, and also that you've just said they're similar to so it's actually tissue that's similar to the lining, but not the same it's different.

Courteney Hills:

Yeah, it looks different pathologically when you put it under a microscope it's not the same. So the first idea of it coming around, they thought it was the lining of the uterus that had flowed backwards and implanted like in the pelvis. That's what they initially thought. But that theory is being disproven. So it's some other tissue. They're not sure where it arises from. They know there's some sort of immune components and some genetics come into play, but there's not enough research. They don't actually know how it forms and what causes it.

Fiona Kane:

Oh, okay, so it's not like oh, they know, it's like a hormonal imbalance will drive it or that kind of thing. There's no specific.

Courteney Hills:

There's no specific research. There is obviously a hormonal component Endo can create. It has its own receptors, so there's like estrogen and progesterone dominant endo. I have estrogen dominant endo, so it has its own estrogen receptors and it can also create its own nerves and things. So it is like a living tissue.

Fiona Kane:

But it's just causing damage and pain and inflammation okay, all right, and that might be why one of the reasons that men get it as well. Then, in that, the hormonal component, because it's kind of this not not the same, but similar idea. We say something like women will have, you know, breast cancer that relates to estrogen and men will have prostate cancer. It's kind of a similar, similar but different, but it's related to the hormones.

Courteney Hills:

So maybe that's, yeah, maybe what that's why I think the thing that most of us advocates are really trying to push for is moving away from it being a women's issue and a period does issue. It's actually a whole body disease. Yes, people have lung collapses and need, you know, surgeries from endo being removed around their heart. They need bowel receptions. They can't walk because it's wrapped around their sciatic nerve like it is a whole body disease. Yes, because it's so. Like you know, you have to go to a gynecologist to get a diagnosis. It's missing a lot of people and it needs a multidisciplinary surgery team to remove it, not yeah, yeah.

Fiona Kane:

So it's seen as a women's issue. So therefore, you know, like all women's issues, it would seem it's like, oh, that's not a thing, or it's, or it's a all. You know the whole thing that. You know women are just, uh, bunging it on or making it up or that sort of thing. I know there's some someone in my family who has endometriosis and you know, when she was younger, I'm you know it just wasn't taken that seriously like her level of. You know, because I suppose for for women it can be really obvious in the fact that it will actually affect your period. So it'll affect the. You know how painful and how difficult that is, which is probably why it's seen as a women's thing. But, like you just said, it's a systemic issue, whole body issue, where it can affect lots of things.

Courteney Hills:

Yeah, yeah, and I think, because there's so many period taboos and menstruation is, you know, not widely accepted there's a little bit more acceptance now, since I've, you know, had endo, even in my personal like circles, like I never used to talk about my periods, but now we all talk about them because, like I've, your period it's like a vital sign of your body. If your period is not right, then it means there's something else going on. It's really important.

Courteney Hills:

Our periods are so important for all aspects of our health as women. Ovulation is really important, like all these things are so important. And, yeah, I think taboos and, like you know, patriarchal views and that's why I use the word cis, because a lot of people who are transgender, they even have to push even harder to get care because of all the biases and all those kind of gender things and, yeah, all the yes things in that scheme.

Fiona Kane:

yeah, yeah, okay. So then tell me just a little bit about your story then, as much as you're happy to share in regards to maybe when you first started noticing you had some issues and how long it might have taken you to get any kind of diagnosis, and then your path to sort of getting actual help and treatments and things like that.

Courteney Hills:

Yeah, so I first started experiencing symptoms when I was about 14 years old and then it took me about seven years to get diagnosed. So my symptoms were initially just painful, really heavy periods and then, once I started getting bowel pain and having painful bowel movements, that progressed to like feeling like I was going to faint. Before and during and after my period, like with bowel movements, I was like something feels wrong. I was working as a trainee vet nurse and I kind of saw how the vets like tried to figure out what was going on and how they could like investigate the reason for something. So I went to a few GPs I think I saw a total of six GPs before I pushed really hard for an ultrasound. Of course, the first thing they said was oh, we'll just put you on the pill and that will fix all your problems.

Fiona Kane:

Yes, the pill is the thing that fixes everything, supposedly isn't it.

Fiona Kane:

It's just like if we just stop having a period, it won't be a problem, we don't have to think about it, and actually that's what, just stepping back just a moment too, that's what I was going to say before when you were talking about the period how important it is. It is kind of like the canary in the coal, mine isn't it? So it's kind of one of the first things that you notice, or one of the things that goes out of whack to let you know there's something going wrong.

Courteney Hills:

Yeah, for sure. And we know that birth control and hormones don't treat the endo, they don't shrink the disease, they just mask your symptoms, and I wanted to know the cause and why. I've always thought that I would want to have kids and I was like, well, I'd like to know if my fertility is okay. I was like 19 years old at the time.

Courteney Hills:

And luckily, I had really good supportive, supportive parents and they're like, no, like we should investigate. And we do ultrasounds in my line of work and I was like why can't we do an ultrasound? There's no radiation. Like can we just have a look? And it was COVID, it was in 2020, so it was like a phone call consult. So I had to be a bit rude and I was like, can you just send me for an ultrasound?

Courteney Hills:

And reluctantly, sent me and then there was a big cyst on my left ovary and so then I got referred to a gynecologist and, yeah, then I had to start like figuring out what this cyst was like. You're, the first thing you see when you look up ovarian cyst is cancer. Um, so then I, you know, started learning about endometriosis. Um, a cousin in our family has it. So I was thinking, okay, the more I read, I thought, okay, I think I probably have endo. This is what my symptoms sound like. Um, so just went to an OBGYN and was given the same advice to try hormonal birth control first, because that would help with my symptoms, and I was told that it would stop the disease from growing, which is not the truth.

Fiona Kane:

Okay, so that's interesting too, because I've always seen it as like covering up the symptoms basically damping symptoms.

Courteney Hills:

It's a Band-Aid. It's a band-aid. It doesn't treat the disease.

Fiona Kane:

Yeah, but I didn't realize that. I just hadn't really thought about it, I suppose, because I don't have the condition, so I hadn't thought about it that deeply. But not only does it just dampen the symptoms for a while, but it doesn't stop the progression of the disease. That's what you just said, isn't it?

Courteney Hills:

Yeah, it doesn't. So, um, yeah, I had a few appointments with this doctor and I had to push quite hard and advocate very hard for myself to have the surgery. Um, yeah, so then I got the surgery in April 2021. Um, and, yeah, they found endo everywhere. I was so anxious before the surgery which is such a common occurrence because we're so disbelieved and we have to push so hard and in the recovery bed, when the doctor came to me and said we found endometriosis, I was like crying hysterically because I was like I knew I was right, I knew something was wrong with me, but I was made to feel like I was, you know, just making it up and it wasn't that bad. So, yeah, they found endo all throughout my pelvis. Um, it wasn't.

Courteney Hills:

I was told that it would be removed by excision. There's two types of surgery they do for endo. One is ablation, where it's basically just like burning. So if there's like a plant, they just burn, like the top of the plant off, leaving the roots, which leaves disease behind and has very high recurrence rates because the disease isn't removed and causes a lot of post-op pain. And there's excision, which is the gold standard treatment, where they proper like dig out the entire plant, taking the roots and taking some margin. Ciliter how you would take out cancer or something you want to fully remove it.

Courteney Hills:

Um. So, yeah, I was told that I would have excision surgery, which I did have, but it was excisional biopsies and the endometrium, instead of being removed, wasn't recognized as an endometrium, so it was left and it was actually drained. So then I, yeah, she, the doctor, wanted to put a Mirena in at the time of surgery and I didn't want that because I wanted to see how my body would go. And I was allowed to make that choice and then I had like some relief from the surgery. For like six or eight months I did feel a bit better, but then all my symptoms came back because the endo was still left in there.

Courteney Hills:

Yes, and I went back to the same doctor and they said to me I told you this would happen because you didn't want to get a marina and I didn't take anyone with me to the appointment and I wish I had, because the look of shock on my face, I was just in disbelief, um, so it's actually not my fault, like, and I just, yeah, it was a form of medical gaslighting. And then, I think, the look on my face, the doctor started like backtracking a bit and said, oh well, you know, there could have maybe been some microscopic endo left behind. By this stage I don't like I'd had my diagnosis. I'd done a lot of research and reading and realized that we don't have any proper excision surgeons in Australia to fully remove endometriosis.

Fiona Kane:

So so it's not really, as it's not really done as much in Australia maybe, so they it's not really a specialty that people the surgery is done inia all the time, but the level of skill of the surgeons is not what it should be and the training that they get they only.

Fiona Kane:

The ob-gyns in australia only need to do 10 supervised laparoscopies and then they're free to go okay, so they just do 10 supervised ones and then after that they can go for it sort of thing, and are they more trained in the ablation as opposed to the? Did you? Did you call it resection? What? Excision excision sorry, yeah, sorry that's okay.

Courteney Hills:

Yeah, I think they're trained in both um. As far as I'm aware, there was guidelines put out um before 2017 that said excision surgery was the gold standard treatment for endo, okay. Then there was a national action plan put in place and then they decided to oh sorry, I lost my train of thought. They changed the guidelines then in 2017, where excision surgery was not the gold standard treatment anymore and hormones, gnrh agonist and antagonist drugs, complementary medicine such as acupuncture and physio, and then excision down the bottom of the list.

Fiona Kane:

Okay, so just let me get that, because you've just said there that they changed the guidelines at one point and said that excision surgery was the gold star, but then they've gone back on that now. Is that what you just said? They've gone back on that now and they use more hormonal medications and things.

Courteney Hills:

Yes, yeah. So there was a big movement in 2017 with endometriosis advocates in Australia using a hashtag saying change the guidelines, and I was seeing all of that around the time of like investigating and I was like, what do you mean? Like we don't have the right, you know, surgery for this disease. So I, you know, spoke to lots of patients, made an Instagram account, just started researching and I realised that there wasn't going to be a surgeon in Australia who could do the level of surgery that I needed. There's levels of endometriosis they don't correlate to, or stages of endometriosis that don't correlate to, pain, but they can give them a bit of an idea. So one would be like superficial disease, so very like minimal, and then it goes up to level four, which would be deep, infiltrating disease, which is what I have, and I just, yeah, the more I read, the more people I talked to and more stories I saw, I realised I needed to go overseas for surgery. So, yeah, I had my surgery in Australia in 2021, and then, in 2023, I got hospitalised while on holidays from an endometriosis flare, um, and I had to have, you know, an ultrasound and a CT and realized that the endo had progressed and that was, yeah, pretty um, heartbreaking to realize.

Courteney Hills:

All this disease had grown quite quickly and was now way more involved and I had progression of bowel symptoms and I thought, oh, might need a bowel reception and, yeah, we didn't really have anyone who does those regularly in Australia.

Courteney Hills:

So I consulted with doctors in America and a few other doctors in Sydney and my ovary had three endometriomas on it and the surgeons in Sydney were quite worried to operate on it and wanted me to freeze my eggs. Anyways, I connected with a patient online and she told me about Dr Mangeshkar in India and he's the only multidisciplinary excision surgeon we have in the Southern Hemisphere. So I did a consult with him. He got me to do an MRI for surgical planning and, yeah, I didn't end up needing a bowel resection. Looking at the scans, which was really encouraging. Um, but yeah, it was all over my like the outside of my uterus, on my left ovary, my right ovary, around all the uterus, sacral ligaments that like hold up your uterus. It was a bit over my bladder and all down through my rectum as well, causing all of these symptoms.

Fiona Kane:

So yeah, it has a lot of characteristics that do sound very similar to cancer, doesn't it? It sort of sounds like I suppose the only difference is I think cancer kind of eats tissue, doesn't it, whereas I don't think this so much eats it, but because it adheres to the tissue it can eventually do a lot of damage and a lot of inflammation, and then you might need to have resections and actually then lose tissue. That way, am I right in characterizing?

Courteney Hills:

it that way. It like adheres to things and invades tissue and people lose organs, like there's silent kidney death with endometriosis. Like people yeah, they have lost organs so, yeah, yeah, so, so yeah.

Fiona Kane:

Essentially you could kidney disease or other things like that. You could end up losing an organ because of the damage of this infiltration of this tissue, yeah, yeah, yeah, that's really and that's, I think you're.

Fiona Kane:

You're exactly right when you say this needs to be seen as how did you describe it? A full system, full body, full body disease, full body disease, because you know it is. It's not just like a full system, full body, full body disease, full body disease, because you know it is. It's not just like a women's issue. And even if it was just just a women's issue, it still needs to be addressed because that's where 50 of the population that's pretty you know that's huge and that's a big issue for 50 of your population, yeah that's such a common disease too.

Fiona Kane:

Exactly, but from what?

Fiona Kane:

you saying it needs to be taken so much more seriously, because the level of damage that this can do systemically it sounds like it's huge, and so it really, and it's just shocking there must be so many people that don't even get a diagnosis. Because I think, what did you say? You went to six or seven GPs, you had to push to have the ultrasound, so someone who didn't have access to going to the, and for people because a lot of people watch us who are in different countries, in Australia usually the first line is a GP, so it's a general practitioner doctor we go to. So we don't go to specialists first, we go to the GP, because it's not the same in other countries.

Courteney Hills:

And to get a referral.

Fiona Kane:

Then they'll send you off to, I'll refer you to a specialist. So most people have a GP or a GP clinic they go to and sometimes it's different, but often it's the same person. So you've had to go to, you know to six or seven different doctors and then be pushy about it and really advocate for yourself and I don't mean push in a bad way, I just yeah, you have to push for it.

Fiona Kane:

Advocate very hard for yourself yeah, and for anyone who maybe doesn't, really is a bit nervous. They don't like asking for things from doctors. They don't know what to say, they don't have the right language, they just, you know, or they whatever, for whatever reason, just don't have that uh ability to to get to a doctor and or ask for what they need, which would be a lot of people. There just must be a lot of people who just have this and it's completely unsupported in any way and completely missed yeah, and I think the other thing is it's so expensive as well.

Courteney Hills:

Like ultrasounds are expensive, seeing a specialist is expensive. Like going to a gp is expensive if they don't cover you and pay you back. Like all these things are expensive, like financially, emotionally, like your time as well. Like you know, if you work full-time and you're trying to manage a chronic illness, like, yeah, it's really hard, there's so many barriers to getting care, which is just ridiculous. This disease is as common as diabetes. Like it used to be one in ten women in Australia, now it's one in seven.

Fiona Kane:

I feel like it's probably more like one in five yeah, based on the lack of people being diagnosed, it probably would be yeah and um, and you know it makes you I mean obviously, who knows?

Fiona Kane:

but it makes you wonder. You know, what are we doing? Is it? You know, all of the plastics and xenoestrogens in our environment is? I don't know what it is, but there's, there's obviously things that we're being exposed to environmentally and maybe they're changing our genetics or something. I don't know what it is, but something's obviously happening. Partly one it's obviously there's always that level of well, they maybe they're getting better at diagnosing, so then more people get diagnosed. So there's that aspect, but I think it still sounds to me like it's more than that, that it's also there's more of it as well. So there's more of it in the community and it's being maybe diagnosed a bit more.

Courteney Hills:

Yeah, and there's more awareness of it now when people talk about it. There's people who have always had endo but they were never allowed to talk about it, their symptoms around their periods or you know, oh, you know, your the word hysteria. Like means uterus.

Fiona Kane:

Like you know, there's all of those other things throughout medicine and society that just create barriers to people getting the help they need yeah, yeah, and because, um, you know, even though I'm not a big one for talking about the patriarchy that sort of thing, that's not my bag but in saying that, from a medicine point of view, it was very much a patriarchal society and women weren't really involved in medicine for a large part of it, and so women's issues weren't even considered that much, even just things like when we talk about sort of heart disease and that sort of stuff. There's a lot known about heart disease in men but there's a lot less known about women and we hadn't really focused on women and so a lot of treatments and studies and preventative things are kind of about what they've seen in men but not what they've seen in women. So, yeah, that is an ongoing issue.

Fiona Kane:

So, heart disease, and that happens to men as well, but it's still male-focused. So this is because it's considered to be this women's issue, even worse as far as, like the amount of time they've probably spent studying it, looking at it, understanding it and oh, it's just a woman's issue. She's being hysterical.

Fiona Kane:

Give her some Patadol, put her on a pill so it just stops, makes the hormones stop and she'll be right, mate, yeah, so you got a diagnosis. You found out that there was this surgeon and this surgeon is in India. Is that right? Yeah, yeah, so tell us a little bit about you. Know you made this decision to go and have surgery overseas.

Courteney Hills:

That must have been a bit scary. Yeah, it was scary, but I don't know I wasn't. I'm usually quite an anxious person, but I just like I'd done all my research, I'd asked all my questions, I just felt really confident in the decision. Yes, and luckily I was very well supported by my friends and family as well.

Courteney Hills:

Yeah, it was scary, but I was at a point where I was so desperate for help, my quality of life was so poor. I just thought, you know, this is the best option for me and I just want to do it Like I'm 24 years old and my quality of life is so terrible, like I'm not doing anything fun or that I want to do. All I can do is work and rest. So, yeah, I did some zooms with him and spoke to him online, listened to his podcast and spoke to other patients from New Zealand and Australia who had been to see him and yeah, so mum and I flew over there and I had the surgery and we had a consult before the surgery. He did some of his own imaging and we went through all my history. We looked at all the imaging, we came up with a plan and I stayed overnight one night in the hospital and then had surgery early the next day and, yeah, I woke up and I felt amazing. I felt so much better than I have ever felt after any procedure.

Courteney Hills:

In Australia they use a lot of different drugs. In India they don't normally use opioid drugs and their care is a little bit more like holistic. So I felt much better and like three days after surgery I was up and walking. I could walk, you know, without pain. My pain was very well controlled and my body just felt better. I think I've spoken to a lot of people who've gone over and had this kind of surgery and once that tissue is out of your body, you just feel better because your whole immune system and your body's not fighting this inflammatory tissue.

Fiona Kane:

Yeah, yeah, because your whole immune system would be just constantly activated, wouldn't it? So you'd have this constant activation of the immune system would be just constantly activated, wouldn't it so you'd have this constant, you know um activation of the immune system and and inflammation and it would be like systemic inflammation so I could only imagine if your gut tissue is gone and your body gets to sort of calm down and just begin to heal yeah, so it's quite a big surgery.

Courteney Hills:

I woke up with a urinary catheter in and I was lucky to be able to just lay in bed for like probably 24 hours post-op but, yeah, there was three endometriomas on my left ovary so they were all fully excised and then my ovary was reconstructed. It was removed from like outside of my bowel, near my bladder, all in my rectum. It was deeply infiltrating. That was all removed. I'm all behind my uterus and, yeah, basically my whole pelvis yes my diaphragm was checked.

Fiona Kane:

There was none of my diaphragm did you say you did have some in your diaphragm or not?

Courteney Hills:

I didn't know. Okay, I didn't have any respiratory symptoms, but they always check, which is nice, yes, yeah. And then I recovered really fast. I felt really good. We had planned to stay two weeks post-op, but after a week's post-op check we were cleared to fly. So we changed our flights and came home, and the flight home wasn't too bad, considering I just had a major abdominal surgery. I don't remember being in too much pain. And then I just like, yeah, recovered at home and went back to work, and now my life is totally different and I feel so much better.

Fiona Kane:

And remind me when, how long ago was this surgery?

Courteney Hills:

It was in January 2024. So about 18 months ago now.

Fiona Kane:

Okay, yep, so, and 18 months down the track. Where are you now physically and how are you feeling?

Courteney Hills:

I feel so much better. I have no pain at all, no period pain, no heavy periods, no bowel symptoms, no fatigue, like I don't have any endosymptoms at all which is amazing I can exercise without pain now. Before I had the surgery I couldn't walk up steep stairs without pain. Now I just did the overland track with dad, which is a six-day overnight hike. That's like my bucket list hike. I have energy to see friends again. I can just do what a normal 20 year old person can do yes, yeah, I have my life back.

Fiona Kane:

Yeah, yeah I'm so happy for you for that, because I know that you've been through a lot and uh. And when I first heard you were going to india, I was like india, because I just don't know enough about this. Who?

Courteney Hills:

goes to india. For that everyone was the same reaction like what do you mean? We have surgeons here. I'm like well, let me explain to you why.

Fiona Kane:

Yeah, yes, yeah, yeah. So obviously it makes sense now that you're explaining it to me, but I was like what? I also knew that, um, you and your mom very intelligent people, so you, you've obviously done your research, so I trusted that you knew what you were doing so, uh, and a little bit more so. So the other thing that you mentioned to me before we started so you've had another diagnosis recently that you think has contributed to some of your issues, so do you want to share a bit more about that?

Courteney Hills:

Yeah, sorry, I just missed the question.

Fiona Kane:

Oh sorry, the internet is a bit funny sometimes. So more recently you've had another diagnosis and um, and you've had another issue has been sort of cleared up for you and that's been helpful for you. Do you want to tell us a little bit more about?

Courteney Hills:

yeah, I think um the more I've learned about endo.

Fiona Kane:

There's a lot of comorbidities that come with endometriosis so, comorbidity being another condition that is strongly related, or they can, I suppose, piggyback off each other or cause, cause sort of combined problems or something? Are they conditioned? That is strongly related, or they can, I suppose, piggyback off each other or cause sort of combined problems or something.

Courteney Hills:

Yeah, so one of the comorbidities I already had was suspected adenomyosis, which is kind of like the sister disease to endometriosis, which is actually a uterine issue where the muscle layer like grows into itself which you have to have a hysterectomy for it to be properly diagnosed. But I've got suspected um, which explains some of my symptoms as well. But I have been doing really well post-op and was wondering why I'm still so exhausted and being so unwell. For so long I was diagnosed with anxiety and depression and put on medications at one point which didn't really help. And then I was speaking to some friends who were recently diagnosed and got an ADHD diagnosis and got some medication and that again has been life-changing, because now I actually have energy and we know that it's really common to have endometriosis and neurodivergence, so such as ADHD and autism. So I guess that's been another kind of like piece to the puzzle of figuring out what's going on with my health in general.

Fiona Kane:

Um, it's been so amazing, yeah yeah, so I didn't know about that, that the neurodivergence and endometriosis they can. It's more common um endometriosis and people with neurodivergence. Is that what you're?

Courteney Hills:

saying yeah, and other conditions like pot. So postural orthostatic tachycardia syndrome, mast cell activation syndrome, eds.

Fiona Kane:

Lots of things um are comorbidities yeah, yeah, and see, a lot of these things are kind of full system, you know, uh, inflammation and immune, immune issues and immune response issues. So, yeah, there's a lot going on with our immune systems. In the last few years. That, um, that, uh, yeah, a lot of these things are increasing. Yeah, I've got lots of suspicions about lots of things that might be contributing to that, but there's something going on in the fact that, you know, once upon a time, having having something like an autoimmune disease was quite unusual where it's now. I could name five people just around me, actually, even in my family. Now For a long time I was the only one in my family that I knew of who had an autoimmune disease, and now I could probably name four people straight away. So, yeah, a lot's changing as far as there's a lot more conditions that are affecting the immune system.

Fiona Kane:

And well, immune system and inflammation, it kind of goes together. Anything, anything that goes wrong with the body, there'll be inflammation. Inflammation is part of, or inflammation is part of, how you know you have the issue. But yeah, so so you find that what you were saying there is, you know a lot of people. Of course, it's one of those things right. Because when you are got, when you have a lot of pain and when you're going through a lot of pain and and especially if there's like misdiagnosis or you're not getting the support or the help you need and things aren't getting better, of course part of that you would feel depressed or anxious or those kind of issues anyway. So part of it would be just in response to your reality, which is your reality is pretty awful.

Fiona Kane:

So of course you start feeling that way, and then there's probably the element of that there's because there's a hormonal attachment to hormonal issues. Then obviously hormones out of balance would also contribute towards that. But then on the other side of things, you're saying that anyone who's sort of got any kind of neurodivergence whether it might be autism or or whether it's ADHD or something like that that also will affect sort of the energy and the mood and that sort of thing. So that's that's what you're saying you found and that since you've been treated for ADHD, that's really improved your energy. Is that kind of? Am I on the right track?

Courteney Hills:

there. Yeah, definitely because I was like I physically feel better now why am I still so exhausted Like, why do I not have the energy to, you know, socialise with friends and things? So, yeah, it's been amazing.

Fiona Kane:

Yeah, and again, you're someone in your 20s, so that's when you're supposed to have energy, you know. So it doesn't make sense for someone in their 20s to be so low in energy. Yeah, yeah and uh, and so we're so okay. So it sounds like you're doing really well at the moment. Uh, and what? Have you got any sort of future plans or anything that you want to share with us about what you're doing? Or it sounds like you're wanting to do a bit of advocacy work as well. Is that sort of where?

Courteney Hills:

you're at. Yeah, I have been doing it throughout my journey, but now I have like that energy to yeah, I guess, kind of get my story out there and answer questions. I get a lot of messages on my Instagram and I try and help people as much as I can on there. I get questions from people all over the world asking about my experience with surgery. It's not just Australia where people are struggling to get the endo care they need, it's worldwide. So, yeah, I think just advocacy and I don't know, maybe organising events in the future and meetups and things. But yeah, I think just advocacy and I don't know, maybe organising events in the future and meetups and things.

Courteney Hills:

But yeah, I think, just being part of a patient community that was so helpful for me. And like, without the Instagram community on yeah, the endo community on Instagram like I would not have heard about Dr Meng's and I wouldn't have known to go to India, I would, yeah, I think it would have taken me a lot more time and I wouldn't have known to go to India, I would, yeah it. I think it would take me a lot more time and I possibly would have just had another surgery in Australia which you know wouldn't have gotten me where I needed to go and could have caused more issues. So, yeah, that's kind of my future plans.

Fiona Kane:

And in Australia is there? Is there a push to change the guidelines or change your recommendations around this, because I recently heard something that said am I right in saying that in Australia recently they're not even recognizing endometriosis, or what was it that I heard recently? There was something in the news about that. So do you know where we're at as far as in Australia about diagnosing and treatment for endometriosis?

Courteney Hills:

Yeah, where we're at, there's somewhere between about $80 to $100 million that's been put towards endometriosis. Unfortunately, none of it's going towards surgical training. Most of it's going towards research and for setting up pelvic pain clinics, but, yeah, none of it is being put aside for training surgeons.

Fiona Kane:

Oh, that's a shame. So obviously research is important and obviously pain is important, but you might not need the pain clinic if you had surgeons that were trained in. You know, based on your story and you're obviously not the only one, because you spoke to other people about this beforehand that you think that putting more effort into training people to do the surgery that's your pain clinic. For you, that's, uh, less need for the pain clinic if you're able to resolve the issue isn't there?

Courteney Hills:

yeah, definitely. There's about 200 excision surgeons that are multidisciplinary of, like you know, the skill set that I went and saw in the world and there's uh, you know, millions and millions more people in the world with endos, so there's a lack of actual access to these surgeons. It's really hard to find them and when you do, you have to travel overseas, which is crazy. Like we shouldn't have to do that. We should be able to go to a surgeon in Australia.

Fiona Kane:

Well, there's a recommendation for anyone who's looking for a future work. A future job that they'll get a lot of clients, patients with is if you're doing medicine, maybe consider doing surgery, this kind of surgery, because obviously there's a great need for it and more people need to be trained in this. But even just being trained in it is it. Do they train much for that in in australia? Do you know much about?

Courteney Hills:

you might not know they don't do a lot of training for it and it's normally lumped within ob gyn. But to have a proper like a surgery similar to mine, they need to only be doing endo surgeries. They can't be delivering babies and doing other surgeries. It needs to be only endo because that's how you get the skills, because it's like it's a really difficult surgery and it's different to a cancer surgery where you just want to get the cancer out of the body but most of the time it's younger people who have the rest of their lives ahead of them, so you can't just remove an organ, like you've got to try and preserve fertility as well, because that also plays a big role.

Courteney Hills:

It's a really tricky surgery yeah, I'd have robotic surgery so it had to be really precise. And you know nerves, pelvic nerve, sparing and you know trying to preserve your fertility and all your organs, and you know your pelvic floor and all those muscles and things like they're so important, for you know bodily functions and everyday life, let alone people who, you know, have it in their lungs and get lung collapses every month like yeah I didn't even I had.

Fiona Kane:

No, I just I. I suppose it's one of those things that you're vaguely aware of when it's not your situation, when you're not around people with it. I had no idea that people had lung collapses from the invasion of this tissue into their you know, into that part of their body. I just had no idea.

Courteney Hills:

Yeah, and it's kind of seen as rare for people to have it like extra pelvic endo, like outside the pelvis, but it's really not rare. It's just not recognised or we don't have anyone in australia who can treat extra pelvic endo. There is not a surgeon who can do a thoracic surgery in australia to remove endo from your lungs. So I I've talked to personally a handful of patients who have to go overseas and it's really expensive as well. Like it's so expensive to get these surgeries and, yeah, people are chronically ill, they can't afford to work, like there's just so many barriers and it's just so upsetting and um, and have you had any contact with any of your doctors since you came back to australia to talk to them about the success of your surgery?

Courteney Hills:

I've spoken to my gp, um, who is really supportive and super helpful. After going through all those GPs, I finally found a really good GP and she's wonderful. So I've spoken to her. I've spoken to my pelvic physio, my acupuncturist, my naturopath and they're all like, wow, this is so good because, like the recurrence rates in Australia are so high. It's like somewhere around like 70% recurrence within five years because the disease isn't removed, whereas my recurrence rate is less than three percent for life, okay, and a little bit higher because I have endometriosis and because I ovulate it's more, there's a greater possibility for it to form. But those kind of like recurrence rates are not seen anywhere in australia yeah, yeah.

Fiona Kane:

so that's, that's phenomenal, that is that's, that's amazing. Well, like I hope over time, some of your doctors you speak to, I suppose all you can do is, uh, is tell as many people as you can about this, get the word out, and I suppose things begin to change when maybe there needs to be the groundswell of people. You know it's going to be this, it's going to be the rising up of the people to ask for change.

Fiona Kane:

And maybe that's the way it's going to have to happen. And there are, you know, I suppose the other good thing I suppose is one good thing about there being more women involved in politics and all sorts of organisations like medical organisations and things like that will advocate, not that it's a women's issue solely, but just because it is seen as one. But I really think they're rebranding or, you know, I assume there's some sort of association. Is there like an organisation or an association that you're involved in, who is behind this trying to, you know, rebrand this disease in a way and get more attention for it?

Courteney Hills:

There is a government organisation that I won't name who get a very, very big amount of the funding for endometriosis in Australia and decide where that money goes, but they are not very supportive of advocates like myself. Yeah, yeah.

Fiona Kane:

Unfortunately, some organisations for issues and diseases are more about managing it and medications and all about just supporting keeping the status quo, and some are more about advocating for change and improvement and whatever it is.

Courteney Hills:

Yeah, there was actually a study written last year about endometriosis advocates on Instagram, so they spent some of the funding to data, mine our accounts and, yeah, basically call us out about false information on the internet. Oh, okay, there's a lot of tension.

Fiona Kane:

Yeah, yeah, it's one of the the thing about, in my experience, the thing about, even in whether it be nutrition science or in medicine and all of these things is, I think that that that's always seems to have always been the case that one it's like we, well, we think we know how it is and this is how it is and this is how it works and this is how we've always done it, or whatever it is, and so we just get very stuck in our ways.

Fiona Kane:

The other thing is that, um, and there's a lot of ego involved in these industries, so people don't want to admit they're wrong. But then, on the other hand, too, when you think about a lot of people who are influencing these industries, there's a lot of money to be made from someone who needs to go back every five years and someone who's using different hormonal medications or IUDs, all the things. So there's probably a certain level of and this is me look, hey, don't sue me, this is just me just theorizing and I don't know enough about it to know. So it's just, all I'm doing is theorizing, but I'm just theorizing that there's a lot of influencers who probably don't want things to change, who are probably very influential and, uh, and they're probably part of what's going on here as well. So that's it's probably a bit of all of those things, a mixture of we've always done it this way ego and, um, some big funding people maybe who have vested interest in it staying a certain way.

Fiona Kane:

Yeah, I don't know, yeah for sure, yeah, so anyway, it'd be people like you, uh, getting the word out that will make a difference and, um, and every you know every opportunity to speak is worthwhile to uh, to teach people more about this. So is there anything you know? I think? Look, thank you so much for sharing that story, because I know it's been a really hard, really challenging story for you, a challenging time your life. You've had a lot of challenge in and around this and I know it's quite personal, so I really appreciate you sharing that today.

Courteney Hills:

It's okay. Thank you for having me on, yeah.

Fiona Kane:

And is there anything else that you would like to add? Is there anything that we didn't talk about or that you think is worth mentioning before, before we wind up?

Courteney Hills:

um, I think my advice is always just trust yourself. Like you know, your body don't like take an answer and run with it, you know. Ask more questions, see another, speak to other patients. Just keep advocating for yourself and just don't give up, I guess. Don't lose hope, because there are people in the world who know about this disease and do want to help you. It is hard to find them, but they do exist and there is some hope, yeah yeah, definitely Don't lose hope.

Fiona Kane:

Get in contact. We'll talk about your contact details in a moment. But the other thing I suppose what you were saying there is you know, one thing that I try really hard to teach my clients and teach people is to really tune into your body and really know yourself. And we do often really know ourselves and don't underestimate your ability to know that there's something not right. And you hear this a lot with people, whether it be cancer diagnosis or some other diagnosis, but they say that I just knew something wasn't right but I couldn't convince my doctor or whatever the situation is.

Fiona Kane:

If you just have that instinct that something is not right, please keep following it up to. And if you can't, if one person doesn't listen to you and you have access to others, just like you know, sometimes you might have to go through six or seven doctors before you find one that will help you but please keep going with it because it's really really important and once you do get that right diagnosis and you get more information, you can do something about it. But, uh, but yeah, I think really it's important to listen to our instincts and I know that, um, some people in the medical fraternity understand that and do really pay attention to people's instincts. Some don't, but uh, but don't undervalue those. They are really important. And, yeah, don't lose hope. And and thank you for being here to give people hope today, now, if people want to get in contact with you.

Fiona Kane:

Obviously we will put your details in the show notes, but, uh, but what's the best way that they can contact you and find you?

Courteney Hills:

yeah, um, on my instagram account it's at endo vet nurse so at endo vet nurse, is that it?

Fiona Kane:

yes, yeah, thank you so much, courtney. Thank you for talking to me today. That's okay. Thanks so much. So at endovetnurse, is that it? Yes, yeah, thank you so much, courtney. Thank you for talking to me today. That's okay. Thanks so much, and thank you everybody for listening and watching. Please like, subscribe, review and share episodes, and particularly this one.

Fiona Kane:

I'm sure you know people who are experiencing some of these issues. So please, you know, just take the time at this moment just to click on the share button and share this with your friends or family or whoever you know who might be touched by this, because it really is important that we get this information out. It affects so many people and it is, you know, a full body systemic issue, so we really need to take this very seriously and get help and hopefully someday in in the future we'll be coming back and talking about how they're doing this in Australia, and there's lots of surgeons. I've been around for long enough to know that these things take a lot of time. Eventually, we can get things in the right direction, but it can take a lot of time. So thanks again, courtney, and thank you everyone for listening and watching at home. The point of this podcast is to have real conversations about things that matter, and this is definitely one of those things. So thanks, everybody, and I'll talk to you all again next week. Thank you, bye.

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Fiona Kane

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