September 2, 2025 • 48 mins
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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Credit for the music used in this podcast:
The Beat of Nature
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Fiona Kane (00:01):
Hello and welcome to the Wellness Connection Podcast
.
I'm your host, Fiona Kane, andtoday I have another guest.
It's been a little while sinceI've had a guest, so it's good
to have someone else here.
So I'd like to say hello toCourteney Hills.
Courteney Hills (00:15):
Hi, thanks for having me.
Fiona Kane (00:17):
Hi, Courtney, it's good to have you on Now.
We're going to be talking todayabout endometriosis, and I
think it's a really importanttopic that still not enough is
known about it.
I heard a little bit of yourstory and I thought, okay,
that's probably a reallyinteresting and important story
to share.
So maybe just start by justtelling us a little bit about
(00:40):
yourself, Courtney.
Courteney Hills (00:41):
Yeah, thank you .
I am 26 years old.
I work as a specialistveterinary nurse in a busy
hospital in Sydney in theinternal medicine department.
I live in the beautiful BlueMountains.
I really love hiking, being outin nature, of course, all
things animals and, yeah, justspending time with my friends
and family.
Fiona Kane (01:01):
Yeah, great, great.
And so start telling usactually, before we even talk,
about your story withendometriosis and actually I'll
just get you to speak a littlebit louder as well, if you can.
You've got a quiet voice likeme, so just try to speak up a
little bit.
But before we even starttalking about your story, can
you just tell us a little bitabout what endometriosis is?
Courteney Hills (01:23):
Yeah, so endometriosis is a chronic
inflammatory condition, and it'sdefined as cells similar to the
lining of the uterus.
The word similar is reallyimportant.
It's not the lining, it'stissue that looks similar, but
pathologically under amicroscope it is different
tissue, okay, and it grows mostcommonly in the pelvis, but has
(01:47):
been found in every organ of thebody.
Most commonly affects cis women, but has been found in fetuses
and a handful of cis men in casereports, as well as some
animals as well, and so itcauses chronic inflammation and
pain.
It can cause adhesions, stickorgans together, invade organs.
(02:09):
It's kind of like a cancer, butnot cancer.
It kind of acts in a similarway.
Yeah, they don't know how it'scaused and what forms it, and
yeah, they're still reallyresearching this disease that's
been around since the the 18th.
Fiona Kane (02:26):
I didn't know did you just say it can affect men?
Courteney Hills (02:29):
yeah, it's been .
There's been case reports of itin cis, men yeah I, I've never
heard of that before.
Fiona Kane (02:36):
I didn't know.
Yeah, yeah, okay, there you golearn something new.
Um, and just for the purposesof this, look, I uh, everyone's
a bit different with theirpersonal choice, but I don't use
the term cis.
I don't believe in using theterm cis, but just for those who
maybe haven't heard of itessentially cis refers to the
fact that you're in the body,that you haven't changed your
(02:57):
sex or you're not trans oranything like that.
So basically, a cis woman is awoman who was born as a woman,
as a girl.
A cis man is a man who was bornas a woman, as a girl.
A cis man is a man who was bornas a man, so that's, but I just
don't use those terms.
I understand everyone's gottheir personal choice, but I
think for the purposes of thisit might be confusing for people
as well.
So just basically woman or man,that's just forget the words for
(03:19):
cis for the purposes of this, Ithink 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, andalso that you've just said
they're similar to so it'sactually tissue that's similar
to the lining, but not the sameit's different.
Courteney Hills (03:35):
Yeah, it looks different pathologically when
you put it under a microscopeit's not the same.
So the first idea of it comingaround, they thought it was the
lining of the uterus that hadflowed backwards and implanted
like in the pelvis.
That's what they initiallythought.
But that theory is beingdisproven.
So it's some other tissue.
They're not sure where itarises from.
(03:56):
They know there's some sort ofimmune components and some
genetics come into play, butthere's not enough research.
They don't actually know how itforms and what causes it.
Fiona Kane (04:07):
Oh, okay, so it's not like oh, they know, it's
like a hormonal imbalance willdrive it or that kind of thing.
There's no specific.
Courteney Hills (04:14):
There's no specific research.
There is obviously a hormonalcomponent Endo can create.
It has its own receptors, sothere's like estrogen and
progesterone dominant endo.
I have estrogen dominant endo,so it has its own estrogen
receptors and it can also createits own nerves and things.
So it is like a living tissue.
Fiona Kane (04:33):
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 hormonalcomponent, because it's kind of
this not not the same, butsimilar idea.
We say something like womenwill have, you know, breast
cancer that relates to estrogenand men will have prostate
cancer.
It's kind of a similar, similarbut different, but it's related
(04:57):
to the hormones.
Courteney Hills (04:58):
So maybe that's , yeah, maybe what that's why I
think the thing that most of usadvocates are really trying to
push for is moving away from itbeing a women's issue and a
period does issue.
It's actually a whole bodydisease.
Yes, people have lung collapsesand need, you know, surgeries
from endo being removed aroundtheir heart.
They need bowel receptions.
They can't walk because it'swrapped around their sciatic
(05:20):
nerve like it is a whole bodydisease.
Yes, because it's so.
Like you know, you have to goto a gynecologist to get a
diagnosis.
It's missing a lot of peopleand it needs a multidisciplinary
surgery team to remove it, notyeah, yeah.
Fiona Kane (05:34):
So it's seen as a women's issue.
So therefore, you know, likeall women's issues, it would
seem it's like, oh, that's not athing, 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 inmy family who has endometriosis
and you know, when she wasyounger, I'm you know it just
(05:58):
wasn't taken that seriously likeher level of.
You know, because I suppose forfor women it can be really
obvious in the fact that it willactually affect your period.
So it'll affect the.
You know how painful and howdifficult that is, which is
probably why it's seen as awomen's thing.
But, like you just said, it's asystemic issue, whole body
issue, where it can affect lotsof things.
Courteney Hills (06:20):
Yeah, yeah, and I think, because there's so
many period taboos andmenstruation is, you know, not
widely accepted there's a littlebit more acceptance now, since
I've, you know, had endo, evenin my personal like circles,
like I never used to talk aboutmy 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
(06:48):
else going on.
It's really important.
Our periods are so important forall 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 wordcis, because a lot of people who
are transgender, they even haveto push even harder to get care
(07:09):
because of all the biases andall those kind of gender things
and, yeah, all the yes things inthat scheme.
Fiona Kane (07:16):
yeah, yeah, okay.
So then tell me just a littlebit about your story then, as
much as you're happy to share inregards to maybe when you first
started noticing you had someissues and how long it might
have taken you to get any kindof diagnosis, and then your path
to sort of getting actual helpand treatments and things like
that.
Courteney Hills (07:37):
Yeah, so I first started experiencing
symptoms when I was about 14years old and then it took me
about seven years to getdiagnosed.
So my symptoms were initiallyjust painful, really heavy
periods and then, once I startedgetting bowel pain and having
painful bowel movements, thatprogressed to like feeling like
(08:00):
I was going to faint.
Before and during and after myperiod, like with bowel
movements, I was like somethingfeels wrong.
I was working as a trainee vetnurse and I kind of saw how the
vets like tried to figure outwhat was going on and how they
could like investigate thereason for something.
So I went to a few GPs I thinkI saw a total of six GPs before
(08:23):
I pushed really hard for anultrasound.
Of course, the first thing theysaid was oh, we'll just put you
on the pill and that will fixall your problems.
Fiona Kane (08:32):
Yes, the pill is the thing that fixes everything,
supposedly isn't it.
It's just like if we just stophaving a period, it won't be a
problem, we don't have to thinkabout it, and actually that's
what, just stepping back just amoment too, that's what I was
going to say before when youwere talking about the period
how important it is.
It is kind of like the canaryin the coal, mine isn't it?
So it's kind of one of thefirst things that you notice, or
(08:53):
one of the things that goes outof whack to let you know
there's something going wrong.
Courteney Hills (08:58):
Yeah, for sure.
And we know that birth controland hormones don't treat the
endo, they don't shrink thedisease, they just mask your
symptoms, and I wanted to knowthe cause and why.
I've always thought that Iwould want to have kids and I
was like, well, I'd like to knowif my fertility is okay.
I was like 19 years old at thetime.
(09:22):
And luckily, I had really goodsupportive, supportive parents
and they're like, no, like weshould investigate.
And we do ultrasounds in myline 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 in2020, so it was like a phone
call consult.
So I had to be a bit rude and Iwas like, can you just send me
for an ultrasound?
(09:42):
And reluctantly, sent me andthen there was a big cyst on my
left ovary and so then I gotreferred to a gynecologist and,
yeah, then I had to start likefiguring out what this cyst was
like.
You're, the first thing you seewhen you look up ovarian cyst
is cancer.
Um, so then I, you know,started learning about
(10:05):
endometriosis.
Um, a cousin in our family hasit.
So I was thinking, okay, themore I read, I thought, okay, I
think I probably have endo.
This is what my symptoms soundlike.
Um, so just went to an OBGYNand was given the same advice to
try hormonal birth controlfirst, because that would help
(10:26):
with my symptoms, and I was toldthat it would stop the disease
from growing, which is not thetruth.
Fiona Kane (10:32):
Okay, so that's interesting too, because I've
always seen it as like coveringup the symptoms basically
damping symptoms.
Courteney Hills (10:40):
It's a Band-Aid .
It's a band-aid.
It doesn't treat the disease.
Fiona Kane (10:43):
Yeah, but I didn't realize that.
I just hadn't really thoughtabout it, I suppose, because I
don't have the condition, so Ihadn't thought about it that
deeply.
But not only does it justdampen the symptoms for a while,
but it doesn't stop theprogression of the disease.
That's what you just said,isn't it?
Courteney Hills (10:56):
Yeah, it doesn't.
So, um, yeah, I had a fewappointments with this doctor
and I had to push quite hard andadvocate very hard for myself
to have the surgery.
Um, yeah, so then I got thesurgery in April 2021.
Um, and, yeah, they found endoeverywhere.
I was so anxious before thesurgery which is such a common
(11:17):
occurrence because we're sodisbelieved and we have to push
so hard and in the recovery bed,when the doctor came to me and
said we found endometriosis, Iwas like crying hysterically
because I was like I knew I wasright, I knew something was
wrong with me, but I was made tofeel like I was, you know, just
making it up and it wasn't thatbad.
(11:38):
So, yeah, they found endo allthroughout my pelvis.
Um, it wasn't.
I was told that it would beremoved by excision.
There's two types of surgerythey do for endo.
One is ablation, where it'sbasically 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
(12:00):
and has very high recurrencerates because the disease isn't
removed and causes a lot ofpost-op pain.
And there's excision, which isthe gold standard treatment,
where they proper like dig outthe entire plant, taking the
roots and taking some margin.
Ciliter how you would take outcancer or something you want to
fully remove it.
(12:21):
Um.
So, yeah, I was told that Iwould have excision surgery,
which I did have, but it wasexcisional biopsies and the
endometrium, instead of beingremoved, wasn't recognized as an
endometrium, so it was left andit was actually drained.
So then I, yeah, she, thedoctor, wanted to put a Mirena
(12:43):
in at the time of surgery and Ididn't want that because I
wanted to see how my body wouldgo.
And I was allowed to make thatchoice and then I had like some
relief from the surgery.
For like six or eight months Idid feel a bit better, but then
all my symptoms came backbecause the endo was still left
in there.
(13:03):
Yes, and I went back to the samedoctor and they said to me I
told you this would happenbecause you didn't want to get a
marina and I didn't take anyonewith me to the appointment and
I wish I had, because the lookof shock on my face, I was just
in disbelief, um, so it'sactually not my fault, like, and
I just, yeah, it was a form ofmedical gaslighting.
(13:25):
And then, I think, the look onmy face, the doctor started like
backtracking a bit and said, ohwell, you know, there could
have maybe been some microscopicendo left behind.
By this stage I don't like I'dhad my diagnosis.
I'd done a lot of research andreading and realized that we
don't have any proper excisionsurgeons in Australia to fully
(13:46):
remove endometriosis.
Fiona Kane (13:48):
So so it's not really, as it's not really done
as much in Australia maybe, sothey it's not really a specialty
that people the surgery is doneinia all the time, but the
level of skill of the surgeonsis not what it should be and the
training that they get theyonly.
The ob-gyns in australia onlyneed to do 10 supervised
(14:11):
laparoscopies and then they'refree to go okay, so they just do
10 supervised ones and thenafter that they can go for it
sort of thing, and are they moretrained 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 (14:31):
Yeah, I think they're trained in both um.
As far as I'm aware, there wasguidelines put out um before
2017 that said excision surgerywas the gold standard treatment
for endo, okay.
Then there was a nationalaction plan put in place and
then they decided to oh sorry, Ilost my train of thought.
(14:53):
They changed the guidelinesthen in 2017, where excision
surgery was not the goldstandard treatment anymore and
hormones, gnrh agonist andantagonist drugs, complementary
medicine such as acupuncture andphysio, and then excision down
the bottom of the list.
Fiona Kane (15:12):
Okay, so just let me get that, because you've just
said there that they changed theguidelines at one point and
said that excision surgery wasthe gold star, but then they've
gone back on that now.
Is that what you just said?
They've gone back on that nowand they use more hormonal
medications and things.
Courteney Hills (15:29):
Yes, yeah.
So there was a big movement in2017 with endometriosis
advocates in Australia using ahashtag saying change the
guidelines, and I was seeing allof 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
(15:49):
disease.
So I, you know, spoke to lotsof patients, made an Instagram
account, just startedresearching and I realised that
there wasn't going to be asurgeon in Australia who could
do the level of surgery that Ineeded.
There's levels of endometriosisthey don't correlate to, or
stages of endometriosis thatdon't correlate to, pain, but
(16:11):
they can give them a bit of anidea.
So one would be likesuperficial disease, so very
like minimal, and then it goesup to level four, which would be
deep, infiltrating disease,which is what I have, and I just
, yeah, the more I read, themore people I talked to and more
stories I saw, I realised Ineeded to go overseas for
surgery.
So, yeah, I had my surgery inAustralia in 2021, and then, in
(16:35):
2023, I got hospitalised whileon holidays from an
endometriosis flare, um, and Ihad to have, you know, an
ultrasound and a CT and realizedthat the endo had progressed
and that was, yeah, pretty um,heartbreaking to realize.
All this disease had grown quitequickly and was now way more
(16:57):
involved and I had progressionof bowel symptoms and I thought,
oh, might need a bowelreception and, yeah, we didn't
really have anyone who doesthose regularly in Australia.
So I consulted with doctors inAmerica and a few other doctors
in Sydney and my ovary had threeendometriomas on it and the
(17:19):
surgeons in Sydney were quiteworried to operate on it and
wanted me to freeze my eggs.
Anyways, I connected with apatient online and she told me
about Dr Mangeshkar in India andhe's the only multidisciplinary
excision surgeon we have in theSouthern Hemisphere.
So I did a consult with him.
He got me to do an MRI forsurgical planning and, yeah, I
(17:42):
didn't end up needing a bowelresection.
Looking at the scans, which wasreally encouraging.
Um, but yeah, it was all overmy like the outside of my uterus
, on my left ovary, my rightovary, around all the uterus,
sacral ligaments that like holdup your uterus.
It was a bit over my bladderand all down through my rectum
as well, causing all of thesesymptoms.
Fiona Kane (18:04):
So yeah, it has a lot of characteristics that do
sound very similar to cancer,doesn't it?
It sort of sounds like Isuppose the only difference is I
think cancer kind of eatstissue, doesn't it, whereas I
don't think this so much eats it, but because it adheres to the
tissue it can eventually do alot of damage and a lot of
inflammation, and then you mightneed to have resections and
(18:25):
actually then lose tissue.
That way, am I right incharacterizing?
Courteney Hills (18:28):
it that way.
It like adheres to things andinvades tissue and people lose
organs, like there's silentkidney death with endometriosis.
Like people yeah, they havelost organs so, yeah, yeah, so,
so yeah.
Fiona Kane (18:41):
Essentially you could kidney disease or other
things like that.
You could end up losing anorgan because of the damage of
this infiltration of this tissue, yeah, yeah, yeah, that's
really and that's, I thinkyou're.
You're exactly right when yousay this needs to be seen as how
did you describe it?
A full system, full body, fullbody disease, full body disease,
because you know it is.
It's not just like a fullsystem, full body, full body
disease, full body disease,because you know it is.
(19:02):
It's not just like a women'sissue.
And even if it was just just awomen's issue, it still needs to
be addressed because that'swhere 50 of the population
that's pretty you know that'shuge and that's a big issue for
50 of your population, yeahthat's such a common disease too
.
Exactly, but from what?
you saying it needs to be takenso much more seriously, because
the level of damage that thiscan do systemically it sounds
(19:27):
like it's huge, and so it really, and it's just shocking there
must be so many people thatdon't even get a diagnosis.
Because I think, what did yousay?
You went to six or seven GPs,you had to push to have the
ultrasound, so someone whodidn't have access to going to
the, and for people because alot of people watch us who are
in different countries, inAustralia usually the first line
(19:49):
is a GP, so it's a generalpractitioner doctor we go to.
So we don't go to specialistsfirst, we go to the GP, because
it's not the same in othercountries.
Courteney Hills (19:57):
And to get a referral.
Fiona Kane (20:04):
Then they'll send you off to, I'll refer you to a
specialist.
So most people have a GP or aGP clinic they go to and
sometimes it's different, butoften it's the same person.
So you've had to go to, youknow to six or seven different
doctors and then be pushy aboutit and really advocate for
yourself and I don't mean pushin a bad way, I just yeah, you
have to push for it.
Advocate very hard for yourselfyeah, and for anyone who maybe
doesn't, really is a bit nervous.
(20:26):
They don't like asking forthings 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 uhability 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 ofpeople who just have this and
(20:46):
it's completely unsupported inany way and completely missed
yeah, and I think the otherthing is it's so expensive as
well.
Courteney Hills (20:55):
Like ultrasounds are expensive,
seeing a specialist is expensive.
Like going to a gp is expensiveif they don't cover you and pay
you back.
Like all these things areexpensive, like financially,
emotionally, like your time aswell.
Like you know, if you workfull-time and you're trying to
manage a chronic illness, like,yeah, it's really hard, there's
(21:16):
so many barriers to getting care, which is just ridiculous.
This disease is as common asdiabetes.
Like it used to be one in tenwomen in Australia, now it's one
in seven.
Fiona Kane (21:27):
I feel like it's probably more like one in five
yeah, based on the lack ofpeople being diagnosed, it
probably would be yeah and um,and you know it makes you I mean
obviously, who knows?
but it makes you wonder.
You know, what are we doing?
Is it?
You know, all of the plasticsand xenoestrogens in our
environment is?
I don't know what it is, butthere's, there's obviously
things that we're being exposedto environmentally and maybe
(21:49):
they're changing our genetics orsomething.
I don't know what it is, butsomething's obviously happening.
Partly one it's obviouslythere's always that level of
well, they maybe they're gettingbetter at diagnosing, so then
more people get diagnosed.
So there's that aspect, but Ithink it still sounds to me like
it's more than that, that it'salso there's more of it as well.
So there's more of it in thecommunity and it's being maybe
(22:11):
diagnosed a bit more.
Courteney Hills (22:12):
Yeah, and there's more awareness of it now
when people talk about it.
There's people who have alwayshad endo but they were never
allowed to talk about it, theirsymptoms around their periods or
you know, oh, you know, yourthe word hysteria.
Like means uterus.
Fiona Kane (22:26):
Like you know, there's all of those other
things throughout medicine andsociety that just create
barriers to people getting thehelp they need yeah, yeah, and
because, um, you know, eventhough I'm not a big one for
talking about the patriarchythat sort of thing, that's not
my bag but in saying that, froma medicine point of view, it was
very much a patriarchal societyand women weren't really
(22:47):
involved in medicine for a largepart of it, and so women's
issues weren't even consideredthat much, even just things like
when we talk about sort ofheart disease and that sort of
stuff.
There's a lot known about heartdisease in men but there's a
lot less known about women andwe hadn't really focused on
women and so a lot of treatmentsand studies and preventative
(23:09):
things are kind of about whatthey've seen in men but not what
they've seen in women.
So, yeah, that is an ongoingissue.
So, heart disease, and thathappens to men as well, but it's
still male-focused.
So this is because it'sconsidered to be this women's
issue, even worse as far as,like the amount of time they've
(23:30):
probably spent studying it,looking at it, understanding it
and oh, it's just a woman'sissue.
She's being hysterical.
Give her some Patadol, put heron a pill so it just stops,
makes the hormones stop andshe'll be right, mate, yeah, so
you got a diagnosis.
You found out that there wasthis surgeon and this surgeon is
(23:53):
in India.
Is that right?
Yeah, yeah, so tell us a littlebit about you.
Know you made this decision togo and have surgery overseas.
Courteney Hills (24:02):
That must have been a bit scary.
Yeah, it was scary, but I don'tknow I wasn't.
I'm usually quite an anxiousperson, but I just like I'd done
all my research, I'd asked allmy questions, I just felt really
confident in the decision.
Yes, and luckily I was verywell supported by my friends and
family as well.
Yeah, it was scary, but I was ata point where I was so
(24:23):
desperate for help, my qualityof life was so poor.
I just thought, you know, thisis the best option for me and I
just want to do it Like I'm 24years old and my quality of life
is so terrible, like I'm notdoing anything fun or that I
want to do.
All I can do is work and rest.
So, yeah, I did some zooms withhim and spoke to him online,
(24:44):
listened to his podcast andspoke to other patients from New
Zealand and Australia who hadbeen to see him and yeah, so mum
and I flew over there and I hadthe surgery and we had a
consult before the surgery.
He did some of his own imagingand we went through all my
history.
We looked at all the imaging,we came up with a plan and I
(25:06):
stayed overnight one night inthe hospital and then had
surgery early the next day and,yeah, I woke up and I felt
amazing.
I felt so much better than Ihave ever felt after any
procedure.
In Australia they use a lot ofdifferent drugs.
In India they don't normallyuse opioid drugs and their care
is a little bit more likeholistic.
So I felt much better and likethree days after surgery I was
(25:29):
up and walking.
I could walk, you know, withoutpain.
My pain was very wellcontrolled and my body just felt
better.
I think I've spoken to a lot ofpeople who've gone over and had
this kind of surgery and oncethat tissue is out of your body,
you just feel better becauseyour whole immune system and
(25:49):
your body's not fighting thisinflammatory tissue.
Fiona Kane (25:50):
Yeah, yeah, because your whole immune system would
be just constantly activated,wouldn't it?
So you'd have this constantactivation of the immune system
would be just constantlyactivated, wouldn't it so you'd
have this constant, you know umactivation of the immune system
and and inflammation and itwould be like systemic
inflammation so I could onlyimagine if your gut tissue is
gone and your body gets to sortof calm down and just begin to
heal yeah, so it's quite a bigsurgery.
Courteney Hills (26:09):
I woke up with a urinary catheter in and I was
lucky to be able to just lay inbed for like probably 24 hours
post-op but, yeah, there wasthree endometriomas on my left
ovary so they were all fullyexcised and then my ovary was
reconstructed.
It was removed from likeoutside of my bowel, near my
bladder, all in my rectum.
(26:31):
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 (26:41):
There was none of my diaphragm did you say you did
have some in your diaphragm ornot?
Courteney Hills (26:45):
I didn't know.
Okay, I didn't have anyrespiratory symptoms, but they
always check, which is nice, yes, yeah.
And then I recovered reallyfast.
I felt really good.
We had planned to stay twoweeks post-op, but after a
week's post-op check we werecleared to fly.
So we changed our flights andcame home, and the flight home
(27:06):
wasn't too bad, considering Ijust had a major abdominal
surgery.
I don't remember being in toomuch pain.
And then I just like, yeah,recovered at home and went back
to work, and now my life istotally different and I feel so
much better.
Fiona Kane (27:22):
And remind me when, how long ago was this surgery?
Courteney Hills (27:25):
It was in January 2024.
So about 18 months ago now.
Fiona Kane (27:30):
Okay, yep, so, and 18 months down the track.
Where are you now physicallyand how are you feeling?
Courteney Hills (27:36):
I feel so much better.
I have no pain at all, noperiod pain, no heavy periods,
no bowel symptoms, no fatigue,like I don't have any
endosymptoms at all which isamazing I can exercise without
pain now.
Before I had the surgery Icouldn't walk up steep stairs
without pain.
Now I just did the overlandtrack with dad, which is a
(27:59):
six-day overnight hike.
That's like my bucket list hike.
I have energy to see friendsagain.
I can just do what a normal 20year old person can do yes, yeah
, I have my life back.
Fiona Kane (28:12):
Yeah, yeah I'm so happy for you for that, because
I know that you've been througha lot and uh.
And when I first heard you weregoing to india, I was like
india, because I just don't knowenough about this.
Who?
Courteney Hills (28:24):
goes to india.
For that everyone was the samereaction like what do you mean?
We have surgeons here.
I'm like well, let me explainto you why.
Fiona Kane (28:33):
Yeah, yes, yeah, yeah.
So obviously it makes sense nowthat you're explaining it to me
, but I was like what?
I also knew that, um, you andyour mom very intelligent people
, so you, you've obviously doneyour research, so I trusted that
you knew what you were doing so, uh, and a little bit more so.
So the other thing that youmentioned to me before we
(28:54):
started so you've had anotherdiagnosis recently that you
think has contributed to some ofyour issues, so do you want to
share a bit more about that?
Courteney Hills (29:02):
Yeah, sorry, I just missed the question.
Fiona Kane (29:04):
Oh sorry, the internet is a bit funny
sometimes.
So more recently you've hadanother diagnosis and um, and
you've had another issue hasbeen sort of cleared up for you
and that's been helpful for you.
Do you want to tell us a littlebit more about?
Courteney Hills (29:21):
yeah, I think um the more I've learned about
endo.
Fiona Kane (29:23):
There's a lot of comorbidities that come with
endometriosis so, comorbiditybeing another condition that is
strongly related, or they can, Isuppose, piggyback off each
other or cause, cause sort ofcombined problems or something?
Are they conditioned?
That is strongly related, orthey can, I suppose, piggyback
off each other or cause sort ofcombined problems or something.
Courteney Hills (29:39):
Yeah, so one of the comorbidities I already had
was suspected adenomyosis,which is kind of like the sister
disease to endometriosis, whichis actually a uterine issue
where the muscle layer likegrows into itself which you have
to have a hysterectomy for itto be properly diagnosed.
But I've got suspected um,which explains some of my
(29:59):
symptoms as well.
But I have been doing reallywell post-op and was wondering
why I'm still so exhausted andbeing so unwell.
For so long I was diagnosedwith anxiety and depression and
put on medications at one pointwhich didn't really help.
And then I was speaking to somefriends who were recently
diagnosed and got an ADHDdiagnosis and got some
(30:19):
medication and that again hasbeen life-changing, because now
I actually have energy and weknow that it's really common to
have endometriosis andneurodivergence, so such as ADHD
and autism.
So I guess that's been anotherkind of like piece to the puzzle
of figuring out what's going onwith my health in general.
Fiona Kane (30:41):
Um, it's been so amazing, yeah yeah, so I didn't
know about that, that theneurodivergence and
endometriosis they can.
It's more common umendometriosis and people with
neurodivergence.
Is that what you're?
Courteney Hills (30:53):
saying yeah, and other conditions like pot.
So postural orthostatictachycardia syndrome, mast cell
activation syndrome, eds.
Fiona Kane (31:01):
Lots of things um are comorbidities yeah, yeah,
and see, a lot of these thingsare kind of full system, you
know, uh, inflammation andimmune, immune issues and immune
response issues.
So, yeah, there's a lot goingon with our immune systems.
In the last few years.
That, um, that, uh, yeah, a lotof these things are increasing.
(31:23):
Yeah, I've got lots ofsuspicions about lots of things
that might be contributing tothat, but there's something
going on in the fact that, youknow, once upon a time, having
having something like anautoimmune disease was quite
unusual where it's now.
I could name five people justaround me, actually, even in my
family.
Now For a long time I was theonly one in my family that I
(31:46):
knew of who had an autoimmunedisease, and now I could
probably name four peoplestraight away.
So, yeah, a lot's changing asfar as there's a lot more
conditions that are affectingthe immune system.
And well, immune system andinflammation, it kind of goes
together.
Anything, anything that goeswrong with the body, there'll be
inflammation.
Inflammation is part of, orinflammation is part of, how you
know you have the issue.
(32:07):
But yeah, so so you find thatwhat you were saying there is,
you know a lot of people.
Of course, it's one of thosethings right.
Because when you are got, whenyou have a lot of pain and when
you're going through a lot ofpain and and especially if
there's like misdiagnosis oryou're not getting the support
or the help you need and thingsaren't getting better, of course
(32:28):
part of that you would feeldepressed or anxious or those
kind of issues anyway.
So part of it would be just inresponse to your reality, which
is your reality is pretty awful.
So of course you start feelingthat way, and then there's
probably the element of thatthere's because there's a
hormonal attachment to hormonalissues.
Then obviously hormones out ofbalance would also contribute
(32:53):
towards that.
But then on the other side ofthings, you're saying that
anyone who's sort of got anykind of neurodivergence whether
it might be autism or or whetherit's ADHD or something like
that that also will affect sortof the energy and the mood and
that sort of thing.
So that's that's what you'resaying you found and that since
you've been treated for ADHD,that's really improved your
(33:15):
energy.
Is that kind of?
Am I on the right track?
Courteney Hills (33:17):
there.
Yeah, definitely because I waslike I physically feel better
now why am I still so exhaustedLike, why do I not have the
energy to, you know, socialisewith friends and things?
So, yeah, it's been amazing.
Fiona Kane (33:30):
Yeah, and again, you're someone in your 20s, so
that's when you're supposed tohave energy, you know.
So it doesn't make sense forsomeone in their 20s to be so
low in energy.
Yeah, yeah and uh, and so we'reso okay.
So it sounds like you're doingreally well at the moment.
Uh, and what?
(33:50):
Have you got any sort of futureplans or anything that you want
to share with us about whatyou're doing?
Or it sounds like you'rewanting to do a bit of advocacy
work as well.
Is that sort of where?
Courteney Hills (34:03):
you're at.
Yeah, I have been doing itthroughout 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 myInstagram and I try and help
people as much as I can on there.
I get questions from people allover the world asking about my
experience with surgery.
It's not just Australia wherepeople are struggling to get the
(34:26):
endo care they need, it'sworldwide.
So, yeah, I think just advocacyand I don't know, maybe
organising events in the futureand meetups and things.
But yeah, I think just advocacyand I don't know, maybe
organising events in the futureand meetups and things.
But yeah, I think, just beingpart of a patient community that
was so helpful for me.
And like, without the Instagramcommunity on yeah, the endo
(34:46):
community on Instagram like Iwould not have heard about Dr
Meng's and I wouldn't have knownto go to India, I would, yeah,
I think it would have taken me alot more time and I wouldn't
have known to go to India, Iwould, yeah it.
I think it would take me a lotmore time and I possibly would
have just had another surgery inAustralia which you know
wouldn't have gotten me where Ineeded to go and could have
caused more issues.
So, yeah, that's kind of myfuture plans.
Fiona Kane (35:06):
And in Australia is there?
Is there a push to change theguidelines or change your
recommendations around this,because I recently heard
something that said am I rightin saying that in Australia
recently they're not evenrecognizing endometriosis, or
what was it that I heardrecently?
There was something in the newsabout that.
So do you know where we're atas far as in Australia about
(35:27):
diagnosing and treatment forendometriosis?
Courteney Hills (35:30):
Yeah, where we're at, there's somewhere
between about $80 to $100million that's been put towards
endometriosis.
Unfortunately, none of it'sgoing towards surgical training.
Most of it's going towardsresearch and for setting up
pelvic pain clinics, but, yeah,none of it is being put aside
(35:52):
for training surgeons.
Fiona Kane (35:54):
Oh, that's a shame.
So obviously research isimportant and obviously pain is
important, but you might notneed the pain clinic if you had
surgeons that were trained in.
You know, based on your storyand you're obviously not the
only one, because you spoke toother people about this
beforehand that you think thatputting more effort into
training people to do thesurgery that's your pain clinic.
For you, that's, uh, less needfor the pain clinic if you're
(36:17):
able to resolve the issue isn'tthere?
Courteney Hills (36:19):
yeah, definitely.
There's about 200 excisionsurgeons that are
multidisciplinary of, like youknow, the skill set that I went
and saw in the world and there'suh, you know, millions and
millions more people in theworld with endos, so there's a
lack of actual access to thesesurgeons.
It's really hard to find themand when you do, you have to
(36:42):
travel overseas, which is crazy.
Like we shouldn't have to dothat.
We should be able to go to asurgeon in Australia.
Fiona Kane (36:52):
Well, there's a recommendation for anyone who's
looking for a future work.
A future job that they'll get alot of clients, patients with
is if you're doing medicine,maybe consider doing surgery,
this kind of surgery, becauseobviously there's a great need
for it and more people need tobe trained in this.
(37:13):
But even just being trained init is it.
Do they train much for that inin australia?
Do you know much about?
Courteney Hills (37:18):
you might not know they don't do a lot of
training for it and it'snormally lumped within ob gyn.
But to have a proper like asurgery similar to mine, they
need to only be doing endosurgeries.
They can't be delivering babiesand doing other surgeries.
It needs to be only endobecause that's how you get the
skills, because it's like it's areally difficult surgery and
(37:40):
it's different to a cancersurgery where you just want to
get the cancer out of the bodybut most of the time it's
younger people who have the restof their lives ahead of them,
so you can't just remove anorgan, like you've got to try
and preserve fertility as well,because that also plays a big
role.
It's a really tricky surgeryyeah, I'd have robotic surgery
so it had to be really precise.
(38:01):
And you know nerves, pelvicnerve, sparing and you know
trying to preserve yourfertility and all your organs,
and you know your pelvic floorand all those muscles and things
like they're so important, foryou know bodily functions and
everyday life, let alone peoplewho, you know, have it in their
lungs and get lung collapsesevery month like yeah I didn't
(38:23):
even I had.
Fiona Kane (38:24):
No, I just I.
I suppose it's one of thosethings 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 hadlung collapses from the invasion
of this tissue into their youknow, into that part of their
body.
I just had no idea.
Courteney Hills (38:42):
Yeah, and it's kind of seen as rare for people
to have it like extra pelvicendo, like outside the pelvis,
but it's really not rare.
It's just not recognised or wedon't have anyone in australia
who can treat extra pelvic endo.
There is not a surgeon who cando a thoracic surgery in
australia to remove endo fromyour lungs.
(39:04):
So I I've talked to personallya handful of patients who have
to go overseas and it's reallyexpensive as well.
Like it's so expensive to getthese surgeries and, yeah,
people are chronically ill, theycan't afford to work, like
there's just so many barriersand it's just so upsetting and
um, and have you had any contactwith any of your doctors since
(39:26):
you came back to australia totalk to them about the success
of your surgery?
I've spoken to my gp, um, who isreally supportive and super
helpful.
After going through all thoseGPs, 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
(39:47):
naturopath and they're all like,wow, this is so good because,
like the recurrence rates inAustralia are so high.
It's like somewhere around like70% recurrence within five
years because the disease isn'tremoved, whereas my recurrence
rate is less than three percentfor life, okay, and a little bit
(40:07):
higher because I haveendometriosis and because I
ovulate it's more, there's agreater possibility for it to
form.
But those kind of likerecurrence rates are not seen
anywhere in australia yeah, yeah.
Fiona Kane (40:21):
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 wordout, and I suppose things begin
to change when maybe thereneeds to be the groundswell of
people.
You know it's going to be this,it's going to be the rising up
(40:42):
of the people to ask for change.
And maybe that's the way it'sgoing to have to happen.
And there are, you know, Isuppose the other good thing I
suppose is one good thing aboutthere being more women involved
in politics and all sorts oforganisations like medical
organisations and things likethat will advocate, not that
it's a women's issue solely, butjust because it is seen as one.
(41:05):
But I really think they'rerebranding or, you know, I
assume there's some sort ofassociation.
Is there like an organisationor an association that you're
involved in, who is behind thistrying to, you know, rebrand
this disease in a way and getmore attention for it?
Courteney Hills (41:25):
There is a government organisation that I
won't name who get a very, verybig amount of the funding for
endometriosis in Australia anddecide where that money goes,
but they are not very supportiveof advocates like myself.
Yeah, yeah.
Fiona Kane (41:45):
Unfortunately, some organisations for issues and
diseases are more about managingit and medications and all
about just supporting keepingthe status quo, and some are
more about advocating for changeand improvement and whatever it
is.
Courteney Hills (42:04):
Yeah, there was actually a study written last
year about endometriosisadvocates on Instagram, so they
spent some of the funding todata, mine our accounts and,
yeah, basically call us outabout false information on the
internet.
Oh, okay, there's a lot oftension.
Fiona Kane (42:27):
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 allof these things is, I think that
that that's always seems tohave always been the case that
one it's like we, well, we thinkwe know how it is and this is
how it is and this is how itworks and this is how we've
always done it, or whatever itis, and so we just get very
(42:49):
stuck in our ways.
The other thing is that, um, andthere's a lot of ego involved
in these industries, so peopledon't want to admit they're
wrong.
But then, on the other hand,too, when you think about a lot
of people who are influencingthese industries, there's a lot
of money to be made from someonewho needs to go back every five
years and someone who's usingdifferent hormonal medications
(43:11):
or IUDs, all the things.
So there's probably a certainlevel of and this is me look,
hey, don't sue me, this is justme just theorizing and I don't
know enough about it to know.
So it's just, all I'm doing istheorizing, but I'm just
theorizing that there's a lot ofinfluencers who probably don't
(43:33):
want things to change, who areprobably very influential and,
uh, and they're probably part ofwhat's going on here as well.
So that's it's probably a bitof all of those things, a
mixture of we've always done itthis way ego and, um, some big
funding people maybe who havevested interest in it staying a
(43:54):
certain way.
Yeah, I don't know, yeah forsure, yeah, so anyway, it'd be
people like you, uh, getting theword out that will make a
difference and, um, and everyyou know every opportunity to
speak is worthwhile to uh, toteach people more about this.
So is there anything you know?
I think?
Look, thank you so much forsharing that story, because I
(44:14):
know it's been a really hard,really challenging story for you
, a challenging time your life.
You've had a lot of challengein and around this and I know
it's quite personal, so I reallyappreciate you sharing that
today.
Courteney Hills (44:27):
It's okay.
Thank you for having me on,yeah.
Fiona Kane (44:30):
And is there anything else that you would
like to add?
Is there anything that wedidn't talk about or that you
think is worth mentioning before, before we wind up?
Courteney Hills (44:40):
um, I think my advice is always just trust
yourself.
Like you know, your body don'tlike take an answer and run with
it, you know.
Ask more questions, see another, speak to other patients.
Just keep advocating foryourself and just don't give up,
(45:00):
I guess.
Don't lose hope, because thereare people in the world who know
about this disease and do wantto help you.
It is hard to find them, butthey do exist and there is some
hope, yeah yeah, definitelyDon't lose hope.
Fiona Kane (45:15):
Get in contact.
We'll talk about your contactdetails in a moment.
But the other thing I supposewhat you were saying there is
you know, one thing that I tryreally hard to teach my clients
and teach people is to reallytune into your body and really
know yourself.
And we do often really knowourselves and don't
(45:36):
underestimate your ability toknow that there's something not
right.
And you hear this a lot withpeople, whether it be cancer
diagnosis or some otherdiagnosis, but they say that I
just knew something wasn't rightbut I couldn't convince my
doctor or whatever the situationis.
If you just have that instinctthat something is not right,
please keep following it up to.
(45:57):
And if you can't, if one persondoesn't listen to you and you
have access to others, just likeyou know, sometimes you might
have to go through six or sevendoctors before you find one that
will help you but please keepgoing with it because it's
really really important and onceyou do get that right diagnosis
and you get more information,you can do something about it.
But, uh, but yeah, I thinkreally it's important to listen
(46:18):
to our instincts and I know that, um, some people in the medical
fraternity understand that anddo really pay attention to
people's instincts.
Some don't, but uh, but don'tundervalue those.
They are really important.
And, yeah, don't lose hope.
And and thank you for beinghere to give people hope today,
now, if people want to get incontact with you.
(46:39):
Obviously we will put yourdetails in the show notes, but,
uh, but what's the best way thatthey can contact you and find
you?
Courteney Hills (46:44):
yeah, um, on my instagram account it's at endo
vet nurse so at endo vet nurse,is that it?
Fiona Kane (46:52):
yes, yeah, thank you so much, courtney.
Thank you for talking to metoday.
That's okay.
Thanks so much.
So at endovetnurse, is that it?
Yes, yeah, thank you so much,courtney.
Thank you for talking to metoday.
That's okay.
Thanks so much, and thank youeverybody for listening and
watching.
Please like, subscribe, reviewand share episodes, and
particularly this one.
I'm sure you know people who areexperiencing some of these
issues.
So please, you know, just takethe time at this moment just to
(47:14):
click on the share button andshare this with your friends or
family or whoever you know whomight be touched by this,
because it really is importantthat we get this information out
.
It affects so many people andit is, you know, a full body
systemic issue, so we reallyneed to take this very seriously
and get help and hopefullysomeday in in the future we'll
be coming back and talking abouthow they're doing this in
(47:36):
Australia, and there's lots ofsurgeons.
I've been around for longenough to know that these things
take a lot of time.
Eventually, we can get thingsin the right direction, but it
can take a lot of time.
So thanks again, courtney, andthank you everyone for listening
and watching at home.
The point of this podcast is tohave real conversations about
(47:57):
things that matter, and this isdefinitely one of those things.
So thanks, everybody, and I'lltalk to you all again next week.
Thank you, bye.
Hello and welcome to the Wellness Connection Podcast
.
I'm your host, Fiona Kane, andtoday I have another guest.
It's been a little while sinceI've had a guest, so it's good
to have someone else here.
So I'd like to say hello toCourteney Hills.
Courteney Hills (00:15):
Hi, thanks for having me.
Fiona Kane (00:17):
Hi, Courtney, it's good to have you on Now.
We're going to be talking todayabout endometriosis, and I
think it's a really importanttopic that still not enough is
known about it.
I heard a little bit of yourstory and I thought, okay,
that's probably a reallyinteresting and important story
to share.
So maybe just start by justtelling us a little bit about
(00:40):
yourself, Courtney.
Courteney Hills (00:41):
Yeah, thank you .
I am 26 years old.
I work as a specialistveterinary nurse in a busy
hospital in Sydney in theinternal medicine department.
I live in the beautiful BlueMountains.
I really love hiking, being outin nature, of course, all
things animals and, yeah, justspending time with my friends
and family.
Fiona Kane (01:01):
Yeah, great, great.
And so start telling usactually, before we even talk,
about your story withendometriosis and actually I'll
just get you to speak a littlebit louder as well, if you can.
You've got a quiet voice likeme, so just try to speak up a
little bit.
But before we even starttalking about your story, can
you just tell us a little bitabout what endometriosis is?
Courteney Hills (01:23):
Yeah, so endometriosis is a chronic
inflammatory condition, and it'sdefined as cells similar to the
lining of the uterus.
The word similar is reallyimportant.
It's not the lining, it'stissue that looks similar, but
pathologically under amicroscope it is different
tissue, okay, and it grows mostcommonly in the pelvis, but has
(01:47):
been found in every organ of thebody.
Most commonly affects cis women, but has been found in fetuses
and a handful of cis men in casereports, as well as some
animals as well, and so itcauses chronic inflammation and
pain.
It can cause adhesions, stickorgans together, invade organs.
(02:09):
It's kind of like a cancer, butnot cancer.
It kind of acts in a similarway.
Yeah, they don't know how it'scaused and what forms it, and
yeah, they're still reallyresearching this disease that's
been around since the the 18th.
Fiona Kane (02:26):
I didn't know did you just say it can affect men?
Courteney Hills (02:29):
yeah, it's been .
There's been case reports of itin cis, men yeah I, I've never
heard of that before.
Fiona Kane (02:36):
I didn't know.
Yeah, yeah, okay, there you golearn something new.
Um, and just for the purposesof this, look, I uh, everyone's
a bit different with theirpersonal choice, but I don't use
the term cis.
I don't believe in using theterm cis, but just for those who
maybe haven't heard of itessentially cis refers to the
fact that you're in the body,that you haven't changed your
(02:57):
sex or you're not trans oranything like that.
So basically, a cis woman is awoman who was born as a woman,
as a girl.
A cis man is a man who was bornas a woman, as a girl.
A cis man is a man who was bornas a man, so that's, but I just
don't use those terms.
I understand everyone's gottheir personal choice, but I
think for the purposes of thisit might be confusing for people
as well.
So just basically woman or man,that's just forget the words for
(03:19):
cis for the purposes of this, Ithink 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, andalso that you've just said
they're similar to so it'sactually tissue that's similar
to the lining, but not the sameit's different.
Courteney Hills (03:35):
Yeah, it looks different pathologically when
you put it under a microscopeit's not the same.
So the first idea of it comingaround, they thought it was the
lining of the uterus that hadflowed backwards and implanted
like in the pelvis.
That's what they initiallythought.
But that theory is beingdisproven.
So it's some other tissue.
They're not sure where itarises from.
(03:56):
They know there's some sort ofimmune components and some
genetics come into play, butthere's not enough research.
They don't actually know how itforms and what causes it.
Fiona Kane (04:07):
Oh, okay, so it's not like oh, they know, it's
like a hormonal imbalance willdrive it or that kind of thing.
There's no specific.
Courteney Hills (04:14):
There's no specific research.
There is obviously a hormonalcomponent Endo can create.
It has its own receptors, sothere's like estrogen and
progesterone dominant endo.
I have estrogen dominant endo,so it has its own estrogen
receptors and it can also createits own nerves and things.
So it is like a living tissue.
Fiona Kane (04:33):
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 hormonalcomponent, because it's kind of
this not not the same, butsimilar idea.
We say something like womenwill have, you know, breast
cancer that relates to estrogenand men will have prostate
cancer.
It's kind of a similar, similarbut different, but it's related
(04:57):
to the hormones.
Courteney Hills (04:58):
So maybe that's , yeah, maybe what that's why I
think the thing that most of usadvocates are really trying to
push for is moving away from itbeing a women's issue and a
period does issue.
It's actually a whole bodydisease.
Yes, people have lung collapsesand need, you know, surgeries
from endo being removed aroundtheir heart.
They need bowel receptions.
They can't walk because it'swrapped around their sciatic
(05:20):
nerve like it is a whole bodydisease.
Yes, because it's so.
Like you know, you have to goto a gynecologist to get a
diagnosis.
It's missing a lot of peopleand it needs a multidisciplinary
surgery team to remove it, notyeah, yeah.
Fiona Kane (05:34):
So it's seen as a women's issue.
So therefore, you know, likeall women's issues, it would
seem it's like, oh, that's not athing, 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 inmy family who has endometriosis
and you know, when she wasyounger, I'm you know it just
(05:58):
wasn't taken that seriously likeher level of.
You know, because I suppose forfor women it can be really
obvious in the fact that it willactually affect your period.
So it'll affect the.
You know how painful and howdifficult that is, which is
probably why it's seen as awomen's thing.
But, like you just said, it's asystemic issue, whole body
issue, where it can affect lotsof things.
Courteney Hills (06:20):
Yeah, yeah, and I think, because there's so
many period taboos andmenstruation is, you know, not
widely accepted there's a littlebit more acceptance now, since
I've, you know, had endo, evenin my personal like circles,
like I never used to talk aboutmy 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
(06:48):
else going on.
It's really important.
Our periods are so important forall 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 wordcis, because a lot of people who
are transgender, they even haveto push even harder to get care
(07:09):
because of all the biases andall those kind of gender things
and, yeah, all the yes things inthat scheme.
Fiona Kane (07:16):
yeah, yeah, okay.
So then tell me just a littlebit about your story then, as
much as you're happy to share inregards to maybe when you first
started noticing you had someissues and how long it might
have taken you to get any kindof diagnosis, and then your path
to sort of getting actual helpand treatments and things like
that.
Courteney Hills (07:37):
Yeah, so I first started experiencing
symptoms when I was about 14years old and then it took me
about seven years to getdiagnosed.
So my symptoms were initiallyjust painful, really heavy
periods and then, once I startedgetting bowel pain and having
painful bowel movements, thatprogressed to like feeling like
(08:00):
I was going to faint.
Before and during and after myperiod, like with bowel
movements, I was like somethingfeels wrong.
I was working as a trainee vetnurse and I kind of saw how the
vets like tried to figure outwhat was going on and how they
could like investigate thereason for something.
So I went to a few GPs I thinkI saw a total of six GPs before
(08:23):
I pushed really hard for anultrasound.
Of course, the first thing theysaid was oh, we'll just put you
on the pill and that will fixall your problems.
Fiona Kane (08:32):
Yes, the pill is the thing that fixes everything,
supposedly isn't it.
It's just like if we just stophaving a period, it won't be a
problem, we don't have to thinkabout it, and actually that's
what, just stepping back just amoment too, that's what I was
going to say before when youwere talking about the period
how important it is.
It is kind of like the canaryin the coal, mine isn't it?
So it's kind of one of thefirst things that you notice, or
(08:53):
one of the things that goes outof whack to let you know
there's something going wrong.
Courteney Hills (08:58):
Yeah, for sure.
And we know that birth controland hormones don't treat the
endo, they don't shrink thedisease, they just mask your
symptoms, and I wanted to knowthe cause and why.
I've always thought that Iwould want to have kids and I
was like, well, I'd like to knowif my fertility is okay.
I was like 19 years old at thetime.
(09:22):
And luckily, I had really goodsupportive, supportive parents
and they're like, no, like weshould investigate.
And we do ultrasounds in myline 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 in2020, so it was like a phone
call consult.
So I had to be a bit rude and Iwas like, can you just send me
for an ultrasound?
(09:42):
And reluctantly, sent me andthen there was a big cyst on my
left ovary and so then I gotreferred to a gynecologist and,
yeah, then I had to start likefiguring out what this cyst was
like.
You're, the first thing you seewhen you look up ovarian cyst
is cancer.
Um, so then I, you know,started learning about
(10:05):
endometriosis.
Um, a cousin in our family hasit.
So I was thinking, okay, themore I read, I thought, okay, I
think I probably have endo.
This is what my symptoms soundlike.
Um, so just went to an OBGYNand was given the same advice to
try hormonal birth controlfirst, because that would help
(10:26):
with my symptoms, and I was toldthat it would stop the disease
from growing, which is not thetruth.
Fiona Kane (10:32):
Okay, so that's interesting too, because I've
always seen it as like coveringup the symptoms basically
damping symptoms.
Courteney Hills (10:40):
It's a Band-Aid .
It's a band-aid.
It doesn't treat the disease.
Fiona Kane (10:43):
Yeah, but I didn't realize that.
I just hadn't really thoughtabout it, I suppose, because I
don't have the condition, so Ihadn't thought about it that
deeply.
But not only does it justdampen the symptoms for a while,
but it doesn't stop theprogression of the disease.
That's what you just said,isn't it?
Courteney Hills (10:56):
Yeah, it doesn't.
So, um, yeah, I had a fewappointments with this doctor
and I had to push quite hard andadvocate very hard for myself
to have the surgery.
Um, yeah, so then I got thesurgery in April 2021.
Um, and, yeah, they found endoeverywhere.
I was so anxious before thesurgery which is such a common
(11:17):
occurrence because we're sodisbelieved and we have to push
so hard and in the recovery bed,when the doctor came to me and
said we found endometriosis, Iwas like crying hysterically
because I was like I knew I wasright, I knew something was
wrong with me, but I was made tofeel like I was, you know, just
making it up and it wasn't thatbad.
(11:38):
So, yeah, they found endo allthroughout my pelvis.
Um, it wasn't.
I was told that it would beremoved by excision.
There's two types of surgerythey do for endo.
One is ablation, where it'sbasically 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
(12:00):
and has very high recurrencerates because the disease isn't
removed and causes a lot ofpost-op pain.
And there's excision, which isthe gold standard treatment,
where they proper like dig outthe entire plant, taking the
roots and taking some margin.
Ciliter how you would take outcancer or something you want to
fully remove it.
(12:21):
Um.
So, yeah, I was told that Iwould have excision surgery,
which I did have, but it wasexcisional biopsies and the
endometrium, instead of beingremoved, wasn't recognized as an
endometrium, so it was left andit was actually drained.
So then I, yeah, she, thedoctor, wanted to put a Mirena
(12:43):
in at the time of surgery and Ididn't want that because I
wanted to see how my body wouldgo.
And I was allowed to make thatchoice and then I had like some
relief from the surgery.
For like six or eight months Idid feel a bit better, but then
all my symptoms came backbecause the endo was still left
in there.
(13:03):
Yes, and I went back to the samedoctor and they said to me I
told you this would happenbecause you didn't want to get a
marina and I didn't take anyonewith me to the appointment and
I wish I had, because the lookof shock on my face, I was just
in disbelief, um, so it'sactually not my fault, like, and
I just, yeah, it was a form ofmedical gaslighting.
(13:25):
And then, I think, the look onmy face, the doctor started like
backtracking a bit and said, ohwell, you know, there could
have maybe been some microscopicendo left behind.
By this stage I don't like I'dhad my diagnosis.
I'd done a lot of research andreading and realized that we
don't have any proper excisionsurgeons in Australia to fully
(13:46):
remove endometriosis.
Fiona Kane (13:48):
So so it's not really, as it's not really done
as much in Australia maybe, sothey it's not really a specialty
that people the surgery is doneinia all the time, but the
level of skill of the surgeonsis not what it should be and the
training that they get theyonly.
The ob-gyns in australia onlyneed to do 10 supervised
(14:11):
laparoscopies and then they'refree to go okay, so they just do
10 supervised ones and thenafter that they can go for it
sort of thing, and are they moretrained 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 (14:31):
Yeah, I think they're trained in both um.
As far as I'm aware, there wasguidelines put out um before
2017 that said excision surgerywas the gold standard treatment
for endo, okay.
Then there was a nationalaction plan put in place and
then they decided to oh sorry, Ilost my train of thought.
(14:53):
They changed the guidelinesthen in 2017, where excision
surgery was not the goldstandard treatment anymore and
hormones, gnrh agonist andantagonist drugs, complementary
medicine such as acupuncture andphysio, and then excision down
the bottom of the list.
Fiona Kane (15:12):
Okay, so just let me get that, because you've just
said there that they changed theguidelines at one point and
said that excision surgery wasthe gold star, but then they've
gone back on that now.
Is that what you just said?
They've gone back on that nowand they use more hormonal
medications and things.
Courteney Hills (15:29):
Yes, yeah.
So there was a big movement in2017 with endometriosis
advocates in Australia using ahashtag saying change the
guidelines, and I was seeing allof 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
(15:49):
disease.
So I, you know, spoke to lotsof patients, made an Instagram
account, just startedresearching and I realised that
there wasn't going to be asurgeon in Australia who could
do the level of surgery that Ineeded.
There's levels of endometriosisthey don't correlate to, or
stages of endometriosis thatdon't correlate to, pain, but
(16:11):
they can give them a bit of anidea.
So one would be likesuperficial disease, so very
like minimal, and then it goesup to level four, which would be
deep, infiltrating disease,which is what I have, and I just
, yeah, the more I read, themore people I talked to and more
stories I saw, I realised Ineeded to go overseas for
surgery.
So, yeah, I had my surgery inAustralia in 2021, and then, in
(16:35):
2023, I got hospitalised whileon holidays from an
endometriosis flare, um, and Ihad to have, you know, an
ultrasound and a CT and realizedthat the endo had progressed
and that was, yeah, pretty um,heartbreaking to realize.
All this disease had grown quitequickly and was now way more
(16:57):
involved and I had progressionof bowel symptoms and I thought,
oh, might need a bowelreception and, yeah, we didn't
really have anyone who doesthose regularly in Australia.
So I consulted with doctors inAmerica and a few other doctors
in Sydney and my ovary had threeendometriomas on it and the
(17:19):
surgeons in Sydney were quiteworried to operate on it and
wanted me to freeze my eggs.
Anyways, I connected with apatient online and she told me
about Dr Mangeshkar in India andhe's the only multidisciplinary
excision surgeon we have in theSouthern Hemisphere.
So I did a consult with him.
He got me to do an MRI forsurgical planning and, yeah, I
(17:42):
didn't end up needing a bowelresection.
Looking at the scans, which wasreally encouraging.
Um, but yeah, it was all overmy like the outside of my uterus
, on my left ovary, my rightovary, around all the uterus,
sacral ligaments that like holdup your uterus.
It was a bit over my bladderand all down through my rectum
as well, causing all of thesesymptoms.
Fiona Kane (18:04):
So yeah, it has a lot of characteristics that do
sound very similar to cancer,doesn't it?
It sort of sounds like Isuppose the only difference is I
think cancer kind of eatstissue, doesn't it, whereas I
don't think this so much eats it, but because it adheres to the
tissue it can eventually do alot of damage and a lot of
inflammation, and then you mightneed to have resections and
(18:25):
actually then lose tissue.
That way, am I right incharacterizing?
Courteney Hills (18:28):
it that way.
It like adheres to things andinvades tissue and people lose
organs, like there's silentkidney death with endometriosis.
Like people yeah, they havelost organs so, yeah, yeah, so,
so yeah.
Fiona Kane (18:41):
Essentially you could kidney disease or other
things like that.
You could end up losing anorgan because of the damage of
this infiltration of this tissue, yeah, yeah, yeah, that's
really and that's, I thinkyou're.
You're exactly right when yousay this needs to be seen as how
did you describe it?
A full system, full body, fullbody disease, full body disease,
because you know it is.
It's not just like a fullsystem, full body, full body
disease, full body disease,because you know it is.
(19:02):
It's not just like a women'sissue.
And even if it was just just awomen's issue, it still needs to
be addressed because that'swhere 50 of the population
that's pretty you know that'shuge and that's a big issue for
50 of your population, yeahthat's such a common disease too
.
Exactly, but from what?
you saying it needs to be takenso much more seriously, because
the level of damage that thiscan do systemically it sounds
(19:27):
like it's huge, and so it really, and it's just shocking there
must be so many people thatdon't even get a diagnosis.
Because I think, what did yousay?
You went to six or seven GPs,you had to push to have the
ultrasound, so someone whodidn't have access to going to
the, and for people because alot of people watch us who are
in different countries, inAustralia usually the first line
(19:49):
is a GP, so it's a generalpractitioner doctor we go to.
So we don't go to specialistsfirst, we go to the GP, because
it's not the same in othercountries.
Courteney Hills (19:57):
And to get a referral.
Fiona Kane (20:04):
Then they'll send you off to, I'll refer you to a
specialist.
So most people have a GP or aGP clinic they go to and
sometimes it's different, butoften it's the same person.
So you've had to go to, youknow to six or seven different
doctors and then be pushy aboutit and really advocate for
yourself and I don't mean pushin a bad way, I just yeah, you
have to push for it.
Advocate very hard for yourselfyeah, and for anyone who maybe
doesn't, really is a bit nervous.
(20:26):
They don't like asking forthings 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 uhability 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 ofpeople who just have this and
(20:46):
it's completely unsupported inany way and completely missed
yeah, and I think the otherthing is it's so expensive as
well.
Courteney Hills (20:55):
Like ultrasounds are expensive,
seeing a specialist is expensive.
Like going to a gp is expensiveif they don't cover you and pay
you back.
Like all these things areexpensive, like financially,
emotionally, like your time aswell.
Like you know, if you workfull-time and you're trying to
manage a chronic illness, like,yeah, it's really hard, there's
(21:16):
so many barriers to getting care, which is just ridiculous.
This disease is as common asdiabetes.
Like it used to be one in tenwomen in Australia, now it's one
in seven.
Fiona Kane (21:27):
I feel like it's probably more like one in five
yeah, based on the lack ofpeople being diagnosed, it
probably would be yeah and um,and you know it makes you I mean
obviously, who knows?
but it makes you wonder.
You know, what are we doing?
Is it?
You know, all of the plasticsand xenoestrogens in our
environment is?
I don't know what it is, butthere's, there's obviously
things that we're being exposedto environmentally and maybe
(21:49):
they're changing our genetics orsomething.
I don't know what it is, butsomething's obviously happening.
Partly one it's obviouslythere's always that level of
well, they maybe they're gettingbetter at diagnosing, so then
more people get diagnosed.
So there's that aspect, but Ithink it still sounds to me like
it's more than that, that it'salso there's more of it as well.
So there's more of it in thecommunity and it's being maybe
(22:11):
diagnosed a bit more.
Courteney Hills (22:12):
Yeah, and there's more awareness of it now
when people talk about it.
There's people who have alwayshad endo but they were never
allowed to talk about it, theirsymptoms around their periods or
you know, oh, you know, yourthe word hysteria.
Like means uterus.
Fiona Kane (22:26):
Like you know, there's all of those other
things throughout medicine andsociety that just create
barriers to people getting thehelp they need yeah, yeah, and
because, um, you know, eventhough I'm not a big one for
talking about the patriarchythat sort of thing, that's not
my bag but in saying that, froma medicine point of view, it was
very much a patriarchal societyand women weren't really
(22:47):
involved in medicine for a largepart of it, and so women's
issues weren't even consideredthat much, even just things like
when we talk about sort ofheart disease and that sort of
stuff.
There's a lot known about heartdisease in men but there's a
lot less known about women andwe hadn't really focused on
women and so a lot of treatmentsand studies and preventative
(23:09):
things are kind of about whatthey've seen in men but not what
they've seen in women.
So, yeah, that is an ongoingissue.
So, heart disease, and thathappens to men as well, but it's
still male-focused.
So this is because it'sconsidered to be this women's
issue, even worse as far as,like the amount of time they've
(23:30):
probably spent studying it,looking at it, understanding it
and oh, it's just a woman'sissue.
She's being hysterical.
Give her some Patadol, put heron a pill so it just stops,
makes the hormones stop andshe'll be right, mate, yeah, so
you got a diagnosis.
You found out that there wasthis surgeon and this surgeon is
(23:53):
in India.
Is that right?
Yeah, yeah, so tell us a littlebit about you.
Know you made this decision togo and have surgery overseas.
Courteney Hills (24:02):
That must have been a bit scary.
Yeah, it was scary, but I don'tknow I wasn't.
I'm usually quite an anxiousperson, but I just like I'd done
all my research, I'd asked allmy questions, I just felt really
confident in the decision.
Yes, and luckily I was verywell supported by my friends and
family as well.
Yeah, it was scary, but I was ata point where I was so
(24:23):
desperate for help, my qualityof life was so poor.
I just thought, you know, thisis the best option for me and I
just want to do it Like I'm 24years old and my quality of life
is so terrible, like I'm notdoing anything fun or that I
want to do.
All I can do is work and rest.
So, yeah, I did some zooms withhim and spoke to him online,
(24:44):
listened to his podcast andspoke to other patients from New
Zealand and Australia who hadbeen to see him and yeah, so mum
and I flew over there and I hadthe surgery and we had a
consult before the surgery.
He did some of his own imagingand we went through all my
history.
We looked at all the imaging,we came up with a plan and I
(25:06):
stayed overnight one night inthe hospital and then had
surgery early the next day and,yeah, I woke up and I felt
amazing.
I felt so much better than Ihave ever felt after any
procedure.
In Australia they use a lot ofdifferent drugs.
In India they don't normallyuse opioid drugs and their care
is a little bit more likeholistic.
So I felt much better and likethree days after surgery I was
(25:29):
up and walking.
I could walk, you know, withoutpain.
My pain was very wellcontrolled and my body just felt
better.
I think I've spoken to a lot ofpeople who've gone over and had
this kind of surgery and oncethat tissue is out of your body,
you just feel better becauseyour whole immune system and
(25:49):
your body's not fighting thisinflammatory tissue.
Fiona Kane (25:50):
Yeah, yeah, because your whole immune system would
be just constantly activated,wouldn't it?
So you'd have this constantactivation of the immune system
would be just constantlyactivated, wouldn't it so you'd
have this constant, you know umactivation of the immune system
and and inflammation and itwould be like systemic
inflammation so I could onlyimagine if your gut tissue is
gone and your body gets to sortof calm down and just begin to
heal yeah, so it's quite a bigsurgery.
Courteney Hills (26:09):
I woke up with a urinary catheter in and I was
lucky to be able to just lay inbed for like probably 24 hours
post-op but, yeah, there wasthree endometriomas on my left
ovary so they were all fullyexcised and then my ovary was
reconstructed.
It was removed from likeoutside of my bowel, near my
bladder, all in my rectum.
(26:31):
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 (26:41):
There was none of my diaphragm did you say you did
have some in your diaphragm ornot?
Courteney Hills (26:45):
I didn't know.
Okay, I didn't have anyrespiratory symptoms, but they
always check, which is nice, yes, yeah.
And then I recovered reallyfast.
I felt really good.
We had planned to stay twoweeks post-op, but after a
week's post-op check we werecleared to fly.
So we changed our flights andcame home, and the flight home
(27:06):
wasn't too bad, considering Ijust had a major abdominal
surgery.
I don't remember being in toomuch pain.
And then I just like, yeah,recovered at home and went back
to work, and now my life istotally different and I feel so
much better.
Fiona Kane (27:22):
And remind me when, how long ago was this surgery?
Courteney Hills (27:25):
It was in January 2024.
So about 18 months ago now.
Fiona Kane (27:30):
Okay, yep, so, and 18 months down the track.
Where are you now physicallyand how are you feeling?
Courteney Hills (27:36):
I feel so much better.
I have no pain at all, noperiod pain, no heavy periods,
no bowel symptoms, no fatigue,like I don't have any
endosymptoms at all which isamazing I can exercise without
pain now.
Before I had the surgery Icouldn't walk up steep stairs
without pain.
Now I just did the overlandtrack with dad, which is a
(27:59):
six-day overnight hike.
That's like my bucket list hike.
I have energy to see friendsagain.
I can just do what a normal 20year old person can do yes, yeah
, I have my life back.
Fiona Kane (28:12):
Yeah, yeah I'm so happy for you for that, because
I know that you've been througha lot and uh.
And when I first heard you weregoing to india, I was like
india, because I just don't knowenough about this.
Who?
Courteney Hills (28:24):
goes to india.
For that everyone was the samereaction like what do you mean?
We have surgeons here.
I'm like well, let me explainto you why.
Fiona Kane (28:33):
Yeah, yes, yeah, yeah.
So obviously it makes sense nowthat you're explaining it to me
, but I was like what?
I also knew that, um, you andyour mom very intelligent people
, so you, you've obviously doneyour research, so I trusted that
you knew what you were doing so, uh, and a little bit more so.
So the other thing that youmentioned to me before we
(28:54):
started so you've had anotherdiagnosis recently that you
think has contributed to some ofyour issues, so do you want to
share a bit more about that?
Courteney Hills (29:02):
Yeah, sorry, I just missed the question.
Fiona Kane (29:04):
Oh sorry, the internet is a bit funny
sometimes.
So more recently you've hadanother diagnosis and um, and
you've had another issue hasbeen sort of cleared up for you
and that's been helpful for you.
Do you want to tell us a littlebit more about?
Courteney Hills (29:21):
yeah, I think um the more I've learned about
endo.
Fiona Kane (29:23):
There's a lot of comorbidities that come with
endometriosis so, comorbiditybeing another condition that is
strongly related, or they can, Isuppose, piggyback off each
other or cause, cause sort ofcombined problems or something?
Are they conditioned?
That is strongly related, orthey can, I suppose, piggyback
off each other or cause sort ofcombined problems or something.
Courteney Hills (29:39):
Yeah, so one of the comorbidities I already had
was suspected adenomyosis,which is kind of like the sister
disease to endometriosis, whichis actually a uterine issue
where the muscle layer likegrows into itself which you have
to have a hysterectomy for itto be properly diagnosed.
But I've got suspected um,which explains some of my
(29:59):
symptoms as well.
But I have been doing reallywell post-op and was wondering
why I'm still so exhausted andbeing so unwell.
For so long I was diagnosedwith anxiety and depression and
put on medications at one pointwhich didn't really help.
And then I was speaking to somefriends who were recently
diagnosed and got an ADHDdiagnosis and got some
(30:19):
medication and that again hasbeen life-changing, because now
I actually have energy and weknow that it's really common to
have endometriosis andneurodivergence, so such as ADHD
and autism.
So I guess that's been anotherkind of like piece to the puzzle
of figuring out what's going onwith my health in general.
Fiona Kane (30:41):
Um, it's been so amazing, yeah yeah, so I didn't
know about that, that theneurodivergence and
endometriosis they can.
It's more common umendometriosis and people with
neurodivergence.
Is that what you're?
Courteney Hills (30:53):
saying yeah, and other conditions like pot.
So postural orthostatictachycardia syndrome, mast cell
activation syndrome, eds.
Fiona Kane (31:01):
Lots of things um are comorbidities yeah, yeah,
and see, a lot of these thingsare kind of full system, you
know, uh, inflammation andimmune, immune issues and immune
response issues.
So, yeah, there's a lot goingon with our immune systems.
In the last few years.
That, um, that, uh, yeah, a lotof these things are increasing.
(31:23):
Yeah, I've got lots ofsuspicions about lots of things
that might be contributing tothat, but there's something
going on in the fact that, youknow, once upon a time, having
having something like anautoimmune disease was quite
unusual where it's now.
I could name five people justaround me, actually, even in my
family.
Now For a long time I was theonly one in my family that I
(31:46):
knew of who had an autoimmunedisease, and now I could
probably name four peoplestraight away.
So, yeah, a lot's changing asfar as there's a lot more
conditions that are affectingthe immune system.
And well, immune system andinflammation, it kind of goes
together.
Anything, anything that goeswrong with the body, there'll be
inflammation.
Inflammation is part of, orinflammation is part of, how you
know you have the issue.
(32:07):
But yeah, so so you find thatwhat you were saying there is,
you know a lot of people.
Of course, it's one of thosethings right.
Because when you are got, whenyou have a lot of pain and when
you're going through a lot ofpain and and especially if
there's like misdiagnosis oryou're not getting the support
or the help you need and thingsaren't getting better, of course
(32:28):
part of that you would feeldepressed or anxious or those
kind of issues anyway.
So part of it would be just inresponse to your reality, which
is your reality is pretty awful.
So of course you start feelingthat way, and then there's
probably the element of thatthere's because there's a
hormonal attachment to hormonalissues.
Then obviously hormones out ofbalance would also contribute
(32:53):
towards that.
But then on the other side ofthings, you're saying that
anyone who's sort of got anykind of neurodivergence whether
it might be autism or or whetherit's ADHD or something like
that that also will affect sortof the energy and the mood and
that sort of thing.
So that's that's what you'resaying you found and that since
you've been treated for ADHD,that's really improved your
(33:15):
energy.
Is that kind of?
Am I on the right track?
Courteney Hills (33:17):
there.
Yeah, definitely because I waslike I physically feel better
now why am I still so exhaustedLike, why do I not have the
energy to, you know, socialisewith friends and things?
So, yeah, it's been amazing.
Fiona Kane (33:30):
Yeah, and again, you're someone in your 20s, so
that's when you're supposed tohave energy, you know.
So it doesn't make sense forsomeone in their 20s to be so
low in energy.
Yeah, yeah and uh, and so we'reso okay.
So it sounds like you're doingreally well at the moment.
Uh, and what?
(33:50):
Have you got any sort of futureplans or anything that you want
to share with us about whatyou're doing?
Or it sounds like you'rewanting to do a bit of advocacy
work as well.
Is that sort of where?
Courteney Hills (34:03):
you're at.
Yeah, I have been doing itthroughout 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 myInstagram and I try and help
people as much as I can on there.
I get questions from people allover the world asking about my
experience with surgery.
It's not just Australia wherepeople are struggling to get the
(34:26):
endo care they need, it'sworldwide.
So, yeah, I think just advocacyand I don't know, maybe
organising events in the futureand meetups and things.
But yeah, I think just advocacyand I don't know, maybe
organising events in the futureand meetups and things.
But yeah, I think, just beingpart of a patient community that
was so helpful for me.
And like, without the Instagramcommunity on yeah, the endo
(34:46):
community on Instagram like Iwould not have heard about Dr
Meng's and I wouldn't have knownto go to India, I would, yeah,
I think it would have taken me alot more time and I wouldn't
have known to go to India, Iwould, yeah it.
I think it would take me a lotmore time and I possibly would
have just had another surgery inAustralia which you know
wouldn't have gotten me where Ineeded to go and could have
caused more issues.
So, yeah, that's kind of myfuture plans.
Fiona Kane (35:06):
And in Australia is there?
Is there a push to change theguidelines or change your
recommendations around this,because I recently heard
something that said am I rightin saying that in Australia
recently they're not evenrecognizing endometriosis, or
what was it that I heardrecently?
There was something in the newsabout that.
So do you know where we're atas far as in Australia about
(35:27):
diagnosing and treatment forendometriosis?
Courteney Hills (35:30):
Yeah, where we're at, there's somewhere
between about $80 to $100million that's been put towards
endometriosis.
Unfortunately, none of it'sgoing towards surgical training.
Most of it's going towardsresearch and for setting up
pelvic pain clinics, but, yeah,none of it is being put aside
(35:52):
for training surgeons.
Fiona Kane (35:54):
Oh, that's a shame.
So obviously research isimportant and obviously pain is
important, but you might notneed the pain clinic if you had
surgeons that were trained in.
You know, based on your storyand you're obviously not the
only one, because you spoke toother people about this
beforehand that you think thatputting more effort into
training people to do thesurgery that's your pain clinic.
For you, that's, uh, less needfor the pain clinic if you're
(36:17):
able to resolve the issue isn'tthere?
Courteney Hills (36:19):
yeah, definitely.
There's about 200 excisionsurgeons that are
multidisciplinary of, like youknow, the skill set that I went
and saw in the world and there'suh, you know, millions and
millions more people in theworld with endos, so there's a
lack of actual access to thesesurgeons.
It's really hard to find themand when you do, you have to
(36:42):
travel overseas, which is crazy.
Like we shouldn't have to dothat.
We should be able to go to asurgeon in Australia.
Fiona Kane (36:52):
Well, there's a recommendation for anyone who's
looking for a future work.
A future job that they'll get alot of clients, patients with
is if you're doing medicine,maybe consider doing surgery,
this kind of surgery, becauseobviously there's a great need
for it and more people need tobe trained in this.
(37:13):
But even just being trained init is it.
Do they train much for that inin australia?
Do you know much about?
Courteney Hills (37:18):
you might not know they don't do a lot of
training for it and it'snormally lumped within ob gyn.
But to have a proper like asurgery similar to mine, they
need to only be doing endosurgeries.
They can't be delivering babiesand doing other surgeries.
It needs to be only endobecause that's how you get the
skills, because it's like it's areally difficult surgery and
(37:40):
it's different to a cancersurgery where you just want to
get the cancer out of the bodybut most of the time it's
younger people who have the restof their lives ahead of them,
so you can't just remove anorgan, like you've got to try
and preserve fertility as well,because that also plays a big
role.
It's a really tricky surgeryyeah, I'd have robotic surgery
so it had to be really precise.
(38:01):
And you know nerves, pelvicnerve, sparing and you know
trying to preserve yourfertility and all your organs,
and you know your pelvic floorand all those muscles and things
like they're so important, foryou know bodily functions and
everyday life, let alone peoplewho, you know, have it in their
lungs and get lung collapsesevery month like yeah I didn't
(38:23):
even I had.
Fiona Kane (38:24):
No, I just I.
I suppose it's one of thosethings 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 hadlung collapses from the invasion
of this tissue into their youknow, into that part of their
body.
I just had no idea.
Courteney Hills (38:42):
Yeah, and it's kind of seen as rare for people
to have it like extra pelvicendo, like outside the pelvis,
but it's really not rare.
It's just not recognised or wedon't have anyone in australia
who can treat extra pelvic endo.
There is not a surgeon who cando a thoracic surgery in
australia to remove endo fromyour lungs.
(39:04):
So I I've talked to personallya handful of patients who have
to go overseas and it's reallyexpensive as well.
Like it's so expensive to getthese surgeries and, yeah,
people are chronically ill, theycan't afford to work, like
there's just so many barriersand it's just so upsetting and
um, and have you had any contactwith any of your doctors since
(39:26):
you came back to australia totalk to them about the success
of your surgery?
I've spoken to my gp, um, who isreally supportive and super
helpful.
After going through all thoseGPs, 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
(39:47):
naturopath and they're all like,wow, this is so good because,
like the recurrence rates inAustralia are so high.
It's like somewhere around like70% recurrence within five
years because the disease isn'tremoved, whereas my recurrence
rate is less than three percentfor life, okay, and a little bit
(40:07):
higher because I haveendometriosis and because I
ovulate it's more, there's agreater possibility for it to
form.
But those kind of likerecurrence rates are not seen
anywhere in australia yeah, yeah.
Fiona Kane (40:21):
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 wordout, and I suppose things begin
to change when maybe thereneeds to be the groundswell of
people.
You know it's going to be this,it's going to be the rising up
(40:42):
of the people to ask for change.
And maybe that's the way it'sgoing to have to happen.
And there are, you know, Isuppose the other good thing I
suppose is one good thing aboutthere being more women involved
in politics and all sorts oforganisations like medical
organisations and things likethat will advocate, not that
it's a women's issue solely, butjust because it is seen as one.
(41:05):
But I really think they'rerebranding or, you know, I
assume there's some sort ofassociation.
Is there like an organisationor an association that you're
involved in, who is behind thistrying to, you know, rebrand
this disease in a way and getmore attention for it?
Courteney Hills (41:25):
There is a government organisation that I
won't name who get a very, verybig amount of the funding for
endometriosis in Australia anddecide where that money goes,
but they are not very supportiveof advocates like myself.
Yeah, yeah.
Fiona Kane (41:45):
Unfortunately, some organisations for issues and
diseases are more about managingit and medications and all
about just supporting keepingthe status quo, and some are
more about advocating for changeand improvement and whatever it
is.
Courteney Hills (42:04):
Yeah, there was actually a study written last
year about endometriosisadvocates on Instagram, so they
spent some of the funding todata, mine our accounts and,
yeah, basically call us outabout false information on the
internet.
Oh, okay, there's a lot oftension.
Fiona Kane (42:27):
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 allof these things is, I think that
that that's always seems tohave always been the case that
one it's like we, well, we thinkwe know how it is and this is
how it is and this is how itworks and this is how we've
always done it, or whatever itis, and so we just get very
(42:49):
stuck in our ways.
The other thing is that, um, andthere's a lot of ego involved
in these industries, so peopledon't want to admit they're
wrong.
But then, on the other hand,too, when you think about a lot
of people who are influencingthese industries, there's a lot
of money to be made from someonewho needs to go back every five
years and someone who's usingdifferent hormonal medications
(43:11):
or IUDs, all the things.
So there's probably a certainlevel of and this is me look,
hey, don't sue me, this is justme just theorizing and I don't
know enough about it to know.
So it's just, all I'm doing istheorizing, but I'm just
theorizing that there's a lot ofinfluencers who probably don't
(43:33):
want things to change, who areprobably very influential and,
uh, and they're probably part ofwhat's going on here as well.
So that's it's probably a bitof all of those things, a
mixture of we've always done itthis way ego and, um, some big
funding people maybe who havevested interest in it staying a
(43:54):
certain way.
Yeah, I don't know, yeah forsure, yeah, so anyway, it'd be
people like you, uh, getting theword out that will make a
difference and, um, and everyyou know every opportunity to
speak is worthwhile to uh, toteach people more about this.
So is there anything you know?
I think?
Look, thank you so much forsharing that story, because I
(44:14):
know it's been a really hard,really challenging story for you
, a challenging time your life.
You've had a lot of challengein and around this and I know
it's quite personal, so I reallyappreciate you sharing that
today.
Courteney Hills (44:27):
It's okay.
Thank you for having me on,yeah.
Fiona Kane (44:30):
And is there anything else that you would
like to add?
Is there anything that wedidn't talk about or that you
think is worth mentioning before, before we wind up?
Courteney Hills (44:40):
um, I think my advice is always just trust
yourself.
Like you know, your body don'tlike take an answer and run with
it, you know.
Ask more questions, see another, speak to other patients.
Just keep advocating foryourself and just don't give up,
(45:00):
I guess.
Don't lose hope, because thereare people in the world who know
about this disease and do wantto help you.
It is hard to find them, butthey do exist and there is some
hope, yeah yeah, definitelyDon't lose hope.
Fiona Kane (45:15):
Get in contact.
We'll talk about your contactdetails in a moment.
But the other thing I supposewhat you were saying there is
you know, one thing that I tryreally hard to teach my clients
and teach people is to reallytune into your body and really
know yourself.
And we do often really knowourselves and don't
(45:36):
underestimate your ability toknow that there's something not
right.
And you hear this a lot withpeople, whether it be cancer
diagnosis or some otherdiagnosis, but they say that I
just knew something wasn't rightbut I couldn't convince my
doctor or whatever the situationis.
If you just have that instinctthat something is not right,
please keep following it up to.
(45:57):
And if you can't, if one persondoesn't listen to you and you
have access to others, just likeyou know, sometimes you might
have to go through six or sevendoctors before you find one that
will help you but please keepgoing with it because it's
really really important and onceyou do get that right diagnosis
and you get more information,you can do something about it.
But, uh, but yeah, I thinkreally it's important to listen
(46:18):
to our instincts and I know that, um, some people in the medical
fraternity understand that anddo really pay attention to
people's instincts.
Some don't, but uh, but don'tundervalue those.
They are really important.
And, yeah, don't lose hope.
And and thank you for beinghere to give people hope today,
now, if people want to get incontact with you.
(46:39):
Obviously we will put yourdetails in the show notes, but,
uh, but what's the best way thatthey can contact you and find
you?
Courteney Hills (46:44):
yeah, um, on my instagram account it's at endo
vet nurse so at endo vet nurse,is that it?
Fiona Kane (46:52):
yes, yeah, thank you so much, courtney.
Thank you for talking to metoday.
That's okay.
Thanks so much.
So at endovetnurse, is that it?
Yes, yeah, thank you so much,courtney.
Thank you for talking to metoday.
That's okay.
Thanks so much, and thank youeverybody for listening and
watching.
Please like, subscribe, reviewand share episodes, and
particularly this one.
I'm sure you know people who areexperiencing some of these
issues.
So please, you know, just takethe time at this moment just to
(47:14):
click on the share button andshare this with your friends or
family or whoever you know whomight be touched by this,
because it really is importantthat we get this information out
.
It affects so many people andit is, you know, a full body
systemic issue, so we reallyneed to take this very seriously
and get help and hopefullysomeday in in the future we'll
be coming back and talking abouthow they're doing this in
(47:36):
Australia, and there's lots ofsurgeons.
I've been around for longenough to know that these things
take a lot of time.
Eventually, we can get thingsin the right direction, but it
can take a lot of time.
So thanks again, courtney, andthank you everyone for listening
and watching at home.
The point of this podcast is tohave real conversations about
(47:57):
things that matter, and this isdefinitely one of those things.
So thanks, everybody, and I'lltalk to you all again next week.
Thank you, bye.
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