July 13, 2025 • 40 mins
In this episode, Jess Taylor from QENDO shares her personal journey with endometriosis and explores how the condition intersects with perimenopause and menopause.
We dive into the complex impact of endometriosis on the body, the importance of early diagnosis, and the challenges many women face in accessing proper care. Jess also highlights QENDO’s long-standing mission since 1988—offering support, advocacy, and education for those affected.
Whether you're seeking answers, support, or awareness, this conversation is a powerful reminder that you're not alone.
Get Support: http://qendo.org.au/
QENDO Care: https://www.qendo.org.au/qendocare
QENDO Community Volunteers: https://www.qendo.org.au/volunteer/expression-of-interest
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:01):
Welcome to Sage Women, the podcast for midlife ladies
navigating perimenopause, menopause, and healthy aging.
I'm Melanie White, and each weekI talk with experts and women
sharing real stories, practical insights, and smart tips to
thrive through this stage of life and beyond.
It's Melanie here with a Sage Women podcast.
I'm really pleased to introduce today Jess Taylor from Quendo,
(00:24):
and I'm very excited to be talking about why endometriosis
is such an important thing that we need to be having a
conversation about what some of the gaps are and what the future
holds. Jess, welcome and thanks for
being here. Thank you so much for having us
and being an ally in the space of not only Women's Health, but
specifically for endometriosis. We're on the same mission.
(00:45):
Absolutely. Jess, I know that your company
has been around a long time. I'd love to hear a little bit
about your journey and for people listening to understand
how Cuando came into being. You're quite right now.
So Cuando was established in 1988 by what I call incredible
bra burning women who started speaking about Women's Health
(01:08):
issues, but specifically painfulperiods in the corners of
libraries because this was not atopic that was really discussed
up until openly until recently. And so these women were coming
together with their families andlearning about things from
libraries and closed door conversations with GPS and it
wasn't just really spoken about.And So what they did is they
(01:31):
come together and try to put an article in the Brisbane, the
Brisbane newspaper, I believe atfirst it was declined because it
used the word period. And back then they weren't
allowed to do that. But they went ahead and somehow
was able to pop an article in the library saying we're going
to talk about endometriosis at this meeting.
(01:51):
Please come if you're interested.
And they were overwhelmed at thenumber of people who saw that
article and thought, yeah, I have endo or there's this little
connection. And so this very informal group
was formed and, and women from that and families and partners
and doctors and researchers fromall around that had seen the
article came together for the very first time and thought,
(02:14):
right, this is much bigger than just our individual experiences.
We've got quite a lot of people impacted.
And it's a really similar story for me because I was diagnosed
just over 12 years ago after many, many years of struggling
with the symptoms of endometriosis, but not knowing
that they were abnormal because I grew up in a house with the
(02:37):
girls on the eldest of four, twoother sisters and a mum.
And my mum has recently been diagnosed with endo because what
her experience she thought was normal.
So of course, that generational normalization passed on to me.
And it was also a time where we didn't speak about these issues
as well. And the the information about
(02:59):
our period was just, you get it.That's it.
Here's what a tampon is. Here's what a part is that fit.
Yeah. And so I really struggled
silently because there was so much stigma around it.
And through school had so many issues.
But this massive expectation to continue and and excel and not
(03:21):
let your academia go down. And I would faint at school and
end up in sick Bay, put in ambulances because no one really
knew what was going on. I remember someone suggesting
that I was being a hypochondriacand but I just would literally
be. I remember standing in the line
to the library where we were having a class and I was in my
(03:43):
senior years and my entire body just went blank, completely went
blank. And I remember waking up in an
ambulance. So this was a common occurrence
for me. And it wasn't until many years
later that I was at a family barbecue and my sister-in-law
had said to me that she had justhad a hysterectomy because she
(04:04):
had something called endometriosis and adenomyosis.
And I thought, what is that? So learn a little bit about her
journey. Went to my GP and said, look, I
want to be checked for endometriosis.
I don't want a hysterectomy. We now know that a hysterectomy
is not a cure for endometriosis,but that was my end.
Went to the GP, referred to a gynaecologist 3 weeks later
(04:27):
after I had been to 11 differentGPS.
And I remember speaking to one who referred me to a
psychologist and they said, look, I think, you know, there's
just something going on in your head that you need to have
looked at. I was sitting on a psychologist
lounge. And when you have, when you're
in significant amounts of pain, your body reacts.
(04:48):
There's, you know, you're clammy, you can feel this.
I've now had two babies, both natural births.
It feels like a contraction. And I can handle my heart say
now that I know that I have feltsignificant contractions with
two others. That is what this endo flare or
endo pain has always felt like. And your body responds.
Of course it does. So this psychologist before I
(05:12):
admit, my sister-in-law going back a bit, she looked at me
when I had a flare on her loungeone day and she said, Jess, no,
no, there's, there is something anatomically, physiologically
going on inside your body. This is not in your head.
He popped me in an ambulance andup I went to the hospital.
But it was, you know, a lot of that back and forth, a lot of
(05:33):
that trying to work out endoscopies, colonoscopies, who
you name it, you know, you name the scope.
I've had it and it was that one conversation without my
sister-in-law is not a health professional, that lived
experience conversation that gave me my little nugget that I
could go and search for. So Fast forward to having
(05:53):
surgery, I wake up and they write on your hand what you've
what they found. So I had endometriosis written
on my hand. I had stage 2, stage 3.
So they wrote that down as well.And I'm looking at my hand
going, what in the world is endometriosis?
Like my sister-in-law has just said it now they've found it,
what is this thing? And so I was Googling and came
(06:14):
across the Quindo Helpline. And I called the Quindo Helpline
and one of those original founding members, one of those
original bra burning women that started this in 1988, answered
my call. And I was very, very early 20s.
She would have been in her 60s, huge age gap.
But this woman speaking with me over the phone made sense of my
(06:36):
entire life, enabled me to understand all the symptoms I've
always lived with, and let me know that there were not only
hundreds but thousands of women out there who also were
experiencing the same thing. And I remember laying there
going, surely I'm not the only one.
And this woman just confirmed that.
So six weeks later, I not reallyrecovered.
(06:59):
But you know, as we do with women, we get on with it, don't
We attended the AGM and they said, look, we need to close
down the organization. It had been going for quite some
time. They were really tired.
They just couldn't continue. And I was very, very early 20s.
No, you can't close it down. I've just found it.
Please give it all over. I will pick it up and run with
(07:19):
it. I had no idea what I was doing.
My my grandma came with me, my mum, my sisters, my family all
came to the AGM who have all runorganizations themselves.
So thank goodness I have these beautiful people around me to
guide. But I had just found this light
source who made sense of my life, and I could not let that
(07:40):
go because I thought, if I've just experienced this, how many
other people are isolated and living like this?
So we went through the process of bringing the organization and
creating what it is today, and that was just over 12 years ago.
That is an amazing story, Jess. I can't even imagine how you
(08:02):
must have felt when you rang theQuando helpline and somebody
could tell you your life story or tell you make sense of it.
What was that like? Was so I remember being in our
laundry because I thought, oh, you know, just reflecting on how
this went right when you've justhad this diagnosis and, and all
(08:27):
of this information thrown at you, it's a lot to process.
And I remember after the conversation, you know, with,
with that founding member on thehelpline, she was sharing with
me, you know, this is what's normal.
This is what's not normal. I hear you, I see you, this is
true. There are lesions in your body.
(08:47):
This is true pain. This is not in your head.
And, and just how she was sayinghow much I believe you, I
believe you. And I remember reflecting on
that once I had got home, I was in the laundry washing all of
the clothes that I had bled through and had, you know, had
accidents through. And I just remember looking at
them going, right. I, I have been seen, I've been
(09:11):
believed. All of these symptoms that you
experience behind closed doors, other women are going through
this. And so it was this incredible
level of crew support, validation, and that just
ignited this fire in my belly that went, Oh my gosh, how many
other women are going through this and are suffering?
(09:34):
And that is just not OK with me.So it was a mix of emotions, but
it took me some time to allow those to come through.
That sounds so powerful, and it must have taken you a lot of
courage. Like what I'm hearing and what
you've said so far is a lot of persistence.
You've really stuck with trying to find answers and going
(09:55):
through all of the doctors to get to the bottom of things.
And then not just finding your own answer, but saying, where
can I take this? Now?
I'm just really noticing your courage to go through that
process and your commitment to take it to the next level.
Been for since I was a little girl I've always not followed
the rules and I have always beenvery curious and also growing up
(10:19):
in a household where if there's a problem we fix it.
If there's a problem, we just problem solve to the next step.
And I've, I've watched my familybuild netball associations and
build football associations and,you know, there's lots of
different clubs that they've hadto see these really big issues
in, in sporting areas and different people, different
(10:42):
personalities. And they've just done things
I've grown up with that around me.
And so I applied what I had grown up with to this new world
of mine and had no idea what I was doing.
I still don't know what I'm doing.
But we, we listen to people, we listen to the problems.
We don't need to know all the answers.
(11:02):
We try and work out what would, what would you need to help
improve that part of your life? And we start to build it.
And I think that's what we do sowell when we come together as a
community. It's amazing, Jess, and on
behalf of women everywhere with endometriosis, thank you for all
of the work that you're doing. I've never been through it
(11:24):
myself. And for anyone listening who's
wondering what is endometriosis,could you give us a simple
definition? So endo is a really complex
condition. It's many different types of
things, but it's and it's very basic.
It's where tissue that is similar to the lining of the
uterus is found in other parts of the body.
(11:44):
As of 2023, it has been found inevery organ of the body.
It has been found in a very, very small amount of men, but
most predominantly women and those who are identify as
female, although the sign femaleat birth.
And now by definition, endometriosis is found outside
of the uterus. So we often hear women having or
(12:06):
being suggested hysterectomy. But because hysterectomy, as we
would likely know, that's removing the uterus or there's
different types. But if you remove the uterus,
yes, it turns off some of the bleeding and some of the
hormones, but you haven't removed the disease because by
definition it's outside the uterus.
So these lesions that look a bitlike jam get stuck all around
(12:29):
the organs. And if you think about those
inflatable men at car sales, that's what our organs want to
be doing. They want to be floating around
in our pelvic area and endo sticks them together and they
get really upset and really angry.
That creates something called scar tissue, which is very
similar to if you imagine a spider web with all of the silky
(12:51):
web around. So all of the organs in our
pelvis gets webbed together. And that can create, you know,
really shoes people's inability to urinate properly, to have
really good sexual function to bowel motions.
And as those lesions grow and grow, they infiltrate the
muscles, they infiltrate the tissue, and everything gets
(13:13):
really stuck. And wherever they're set up in
the body, they also start bleeding.
So the disease gets progressively worse in people
over time. Wow, that sounds like a
significant disruption to life. I mean, I'm thinking about
bladder function, bowel function, other areas of the
(13:34):
body. I can only imagine it.
It's obviously needs a lot of attention.
And I was going to ask you why did, why do you think
endometriosis awareness matters now?
I suppose it always matters, butdo you think that there's
something different going on right now that people are rising
up, or what is it That's really creating a call to action around
this? So, so many thoughts on this.
(13:58):
So just to say that endometriosis is not a new
condition, but it's a newly spoken about condition.
And I think what we have done collectively is empower Stories.
We have one, brought peoples with lived experience together,
supported them so that they feltvalued, that they had an
(14:19):
opportunity to make a gift, makea difference, supported them as
they're unravelling their story,held space for them and given
them confidence to do so. So because all of that, they've
been able to go to ministers andshare their story, speak to
media, speak to the people and their families.
But we've also done that with doctors who are also frustrated
(14:40):
because they're seeing these really unwell patients and they
need to do something in in the best of their ability too.
And we've also collaborated withresearchers and other health
professionals and then other organizations.
And as we say, if you know sevenwomen, you should know
endometriosis because it affectsone in seven, and that's more
common than breast cancer, diabetes and asthma.
(15:01):
And so when we put it in these terms, we realize, oh, I
probably know someone with endo,that they're very likely to be
suffering alone. When you rally around people,
that isolation reduces and you give them the next step.
So I think that we've done an enormous amount of work in the
awareness space, but it's being driven by people with lived
(15:22):
experience, willing and able to share their stories.
And there's some of them are really horrific.
My story isn't as is nowhere near horrific compared to the
others, but it's not an uncommonstory.
And when you think of and listento these women and what they've
gone through, you think, how is this happening?
How is this happening? And that fire in my belly that I
(15:44):
mentioned earlier occurs in, in all the people that we work
with. And they just want to funnel
their experiences so that the next generation doesn't have to
go through it. We're at a point now where, in
my humble opinion, awareness forawareness sake is done.
We need awareness and action because it's one thing to know
about it, but people then spin on their wheels, what do I do
(16:06):
next? People need help right now.
And so that's where we what we do at Cuando is we give them
services, We give them those next steps so that yes, they're
aware of what's going on. They know what's normal and
what's not normal, and then theyknow what to do about it.
I hear the average diagnosis time is 7 to 10 years.
(16:29):
It is so we have because of the awareness that's now dropped to
around 6 1/2 in a very short period of time because people
are again, not just thinking what they have to live with is
normal. But that's still far too long. 6
1/2 years living with these symptoms is such a long time and
to think about their mental health impacts, their financial
(16:50):
impacts, not being able to go towork or school or study and just
their life, that's that. That is far too long.
So we still have a lot of awareness to do, but it means an
action or call to action behind it every time we talk about the
word. I can hear a lot of your values
coming out in this conversation and and I love it because you're
(17:11):
on a mission. I wonder if you have a personal
vision that encapsulate some of what you said, or maybe
something different. What is it that really drives
you at the core of things, Jess?How do you see the world in the
future, for example? I look at my daughter, who's 8,
and I remember I was 8. I had no idea about periods or
(17:35):
this or even the word endometriosis.
And until you know these words, you don't know what you don't
know, right? So when you start to learn what
these are, it's like these doorsopen and for my generation,
generations before me, and I think even still this
generation, there's so many closed doors, they don't even
know that they're there. But whilst we don't have a cure
(17:55):
and probably in my lifetime, we,we're very unlikely to have the
cure, I think we will in my lifetime actually understand the
disease better. I think we'll know what the
lesions are, what they're doing and how they move in the body.
That will happen in my lifetime,but I don't think a cure would
happen in my lifetime, right? But what I do hope for is people
(18:17):
in my daughter's generation to know the word because when you
know the term, you know it's a thing.
You can then go and get help. And because we're educating GPS
and we're educating the wider group, they're not going to go
to a health professional and be blocked.
That will that doors not going to be blocked.
We want them to open it. And she comes to me now in
(18:39):
school holidays, comes to meetings and I'll have to tell
you last school holiday she camewith me to this meeting and she
has, she has grown up doing thisstuff with me.
I was breastfeeding her in Parliament as we were pulling
the National Action Plan together.
I was in Labour as I was lobbying politicians to get this
National Action Plan up and running right policy.
(19:02):
So she has been with me the whole way and she sat with me
last holidays and the person I was speaking to couldn't
pronounce the word endometriosis.
And she paused and she said, so kindly excuse me, I just need to
correct you. It's actually endometriosis.
And I was so proud of her because she knows the word.
(19:24):
And if you yeah know these terms, they will be able to
search the word or, you know, questions start to question
things. So whilst you know the
beautiful, big and goal is a cure, I have to.
I'm a realist. What else can we do to get to
that point? Educate these people.
(19:47):
Giving people the word, I love that story.
I've got goosebumps as you were saying it.
Because when someone has that awareness and that knowledge and
that understanding, they they are empowered within themselves
to advocate for themselves to know that being dismissed by
somebody who doesn't know is notOK and that they can.
Look for the right people in theright places and we can close
(20:07):
that treatment or that diagnosisgap from 6 1/2 years.
And congratulations on getting that down on your work towards
that. What can we do to bring it down
further, faster? And that, as you say, that
awareness is so important for the next generations coming
through and the current ones even you said your mom's just
been recently diagnosed. Yeah, it's and particularly with
(20:30):
women who go through, are going through perimenopausal menopause
often. So endo is so complex because
you might have a lot of disease and going on inside you and have
no symptoms at all until you go through a significant or even a
seemingly small life situation or event.
While other people might have a tiny amount of disease, but it
be in the most enormous amounts of pain.
(20:52):
And so it's tricky then to, yeah, manage disease and manage
symptoms. And a lot of women like my mum,
she, you know, could have 4 babies no problem at all, you
know, couldn't, as she says, could look at my dad before
pregnant, no problem. So her, her fertility wasn't
impacted. And it was when she started
(21:13):
school, perimenopause and menopausal, that all of this
really ramped up. And so that was for her at a
later stage in her life, lookingback on everything, she just put
up with a lot. She just put up with it thinking
it was normal. And it when it was so unbearable
to manage and she just simply couldn't manage it anymore is
when she went to seek help. And I know from the thousands of
(21:37):
people who have spoken with me over these over 12 years,
they're in exactly the same situation.
And it is so important that people understand it's not a
siloed condition over here, separate from anything else, as
you say, that intersection with menopause in a time where
existing conditions can can become amplified.
(21:58):
And then think about all of the other conditions that intersect
endometriosis. And that somehow we need to
untangle those threads and really understand what's going
on. What might be some other
conditions that could intersect with endometriosis?
But we often hear, particularly around perimenopause and
menopause, the, the ugly cousin called adenomyosis.
(22:21):
So it's endometry. It's, it's where the inside of
the uterus is really invading itself.
And if you think of, you know, that Fruit Ninja app that was
around a couple of years ago where the fruit would drop down
and you'd have a knife and you would be cut.
I mean, that's how I visualize Adam adenomyosis.
So if you imagine just these intense sharp pains going on
(22:45):
inside, like these fruits just exploding inside your uterus,
that's something that can occur.It's a lot of people with endo.
I think someone said as high as 60% of people with endo also do
have adenomyosis from the the most recent World Congress.
Yeah. And again, thinking menopause
and perimenopause, that's one that really starts to ramp up.
(23:08):
So there's lots of clotting, lots of bleeding, more than can
be managed. So that's a big one.
We also have anxiety, which is really, really huge POTS, which
is like where people faint a lotand, and differences in blood
pressures. You know, there's a lot of
people who are neurodiverse in this space as well.
(23:29):
PCOS, infertility, you know, a lot of these Women's Health
issues spring out from endometriosis and that's why
it's this quite large condition and quite complex.
And possibly quite hard to see and to untangle from those other
things that might look like something else perhaps.
And then there there is this underlying component that hasn't
(23:52):
been recognized or realized maybe.
Absolutely. And we often will say if people
can't just continue their life without simple management tools
like Panadol, Nurofen and a heatpack, if people can't manage
just with those things, then we do need to think about, you
know, getting some additional help, right?
(24:13):
And even in someone's period, 80Nils, I think it's 1/3 of a cup
is what someone will ask across their entire bleed of that
period, right? Wow.
So women who are flooding several times in their menstrual
products, that's not normal. And so coming back to right, if
(24:35):
we can't be managed with a Panadol Nerf and heat pack and
I'm bleeding more than that, then we really need to start
thinking about first, OK, even endometriosis.
Let's get the hormones chest checked.
Let's get some blood panels doneto rule out any ovarian cancers
or any endometrial cancers before we start going down.
(24:55):
And in this day and age, whilst well, historically endometriosis
has only been able to have a diagnosis from a laparoscopy,
which is a, it's a, people call it an elective non invasive
surgery, but it's, it's often not elective.
It's, you know, I need some helphere.
(25:17):
They're blowing up the belly. They're putting scopes in,
cutting out the lesions where possible and, and hopefully not
cutting them out where possible.Yeah, totally invasive.
And then it can take up to 12 weeks for you to feel like
yourself again. So that is what has always been
the way for diagnosis. And only recently with very new
(25:40):
technology, very new training, we can look at endometriosis or
see it on scans, but that's not everyone.
There are only a few of them around the country that enables
that. And we've got a lot of work to
do in that space. Not every, you know, person can
do that very, very specific scanning.
(26:01):
So yeah, it's it's tricky to getall of that information
together. But there's so much work
happening in this area too. Like this is a really, really
fast moving research space because women and families and
the whole sector are calling outgoing.
Come on, let's let's make this move.
Yeah, the prevalence is too highto ignore.
(26:23):
We have to do something and the work that you're doing is
leading into that. I think what I've, what you've
just said, it's a really important point is that it's not
just about how does an individual manage their
condition. It's how do we get people to
have a non invasive test processthat's easily accessible.
And the person is doing that test is trained and has
(26:44):
professional capability that they're not going to dismiss you
or send you down another 10 rabbit holes.
I mean, talk to us about the gaps in care coordination for a
moment. So I'll give you a bit of a, a
picture, right. So someone will go, or perhaps
(27:05):
will be listening to this and going right.
Well, I can't manage with a Patadol Nurofen or a heat pack.
All right, well, I should probably go get that looked at.
They go to their GP and their GPmight say to them oh just lose
some weight or you're too stressed and you know, come back
to me in 3 or so months and you know, we'll see how you're
going. Meanwhile that person has become
(27:26):
worse because this is a cycle and also a pain cycle.
Things get progressively worse over time though, whilst in the
initial conversation that GP whowas very well meaning but very
unaware has, you know, not really intercepted with
education, information, resources, some, you know, tests
(27:46):
that they could do. They've said, oh, you're
stressed, you're overweight, trylose some weight and come back.
This is still a common, common question that people or common
occurrence that people are experiencing.
And sometimes that patient will go, all right, well, I'll go
home, I'll try to do all those things.
They can't lose the weight because of all the reasons going
on. Or they might present to
emergency with this intense painthat they don't know where it's
(28:09):
come from. Or again, it's getting
progressively worse and the emergency doesn't know what to
do. They do an ultrasound.
If they can just rule out appendicitis, someone, sometimes
they take out your appendix not needing to because that's what
they think it is. Or they put it down to an
ovarian cyst rupture. And they're really limited in
(28:30):
the emergency department around what they can do.
So that patient, that woman goeshome, right?
Well, I've been to my GP, I've now been to an emergency
department. OK, well, what is going on with
me? And they start to question
everything because they have tried to engage with health
professionals again, who are well meaning most of the time,
but just unaware. I often say health professionals
(28:51):
are not misbehaving. They're misunderstanding.
They're misunderstanding us as women and what we're, you know,
we know our bodies, so listen tous.
And so that is a real, again, somany gaps in those services, so
many gaps in in that care. You've got some surgeons who are
trained to do the procedure and are doing it anyway.
(29:12):
You have other health professionals who are similar,
not trained in this space. And then you have an amazing
group, an amazing, what I call the village of health
professionals who are truly, truly doing the right thing, are
trained appropriately, are listening to patients and are
getting amazing outcomes. And we need to elevate them and
(29:34):
we need to support that workforce because if we don't
have that workforce, women can'tget better.
And So what we have seen at Quendo is we've been hearing
about, you know, I've been to emergency, I've been to the GP
and I just need someone to listen to me and help me be
pointed in the right direction. And we've launched Quendo Care.
We say until there's a cure, there's a cat, there is care.
And this is where a nurse who is, yeah, she's specialised.
(29:58):
She's actually been an IVF nursefor eight years and she has a
lived experience. And you can actually book in and
speak with her for an hour up toan hour for free and over the
phone. And where we have this space
where we can completely listen to all of the things going on
for you and help you with those next steps.
So it might be the right help professional to go to.
(30:20):
It might be organising all of the symptoms, working out, you
know, what will your finances allow and how do we prioritise
that? So there are significant gaps in
the service because of the lack of coordination, and we're
trying to fill that gap because of all these thousands of
stories we've been hearing from women saying I just need someone
(30:41):
to sit with me and help me alongthat way.
How do people access Cuando Care?
How does it work? Let's say that I've got some
symptoms, I've heard this podcast or I've become aware of
the conversation around endometriosis, and I'm going,
well, what do I do next? Where do I go?
How do I access this? You just go to quindoqendo.org
(31:02):
dot AU slash quindocare, QENDOCARE and you literally just
find a date and a time that works for you and booking an
appointment. And this is for people with
lived experience. It's for partners, for mums, for
parents, for teachers, anyone atall.
So there's no referral required.You can book in straight away
(31:23):
and it's completely free. So the calendar is on the
website that you can find the date and time that suits you and
book it. Book yourself in.
So this is a telehealth call on a meeting like this one?
Or is it a phone call? How does that work?
It depends on what the client isafter.
So often it will be either it isall telehealth, either be on a
(31:44):
video call or just a phone call.Because we have some people who
are rural, you know, out past Kanamala and need support right
now. And video conferencing does not
work out there because of reception.
So we can get on a landline and do a phone call.
And then we're here to follow upwith you because there might be
some things that you're working on and you know, it can be a big
(32:06):
discussion to have, particularlyif someone has just shared it
for the very first time. It's a lot to unpack.
So we will book in another session just to follow up to see
how you're going. You know, if there's some goal
setting happening in that appointment, it might be as
simple as talking with someone about XY and Z.
We want to check in to see how you went with that or as we
(32:27):
know, life comes up. So it may be that we have to re
evaluate the goal and work out. All right, well, we've had this
life event happen. What are your steps next?
Amazing. Amazing that you're offering
this in in a way that's so accessible in terms of the
format and an hour is very generous and having it for free
is incredible. It must have taken a lot of work
(32:49):
to get to this point. So much work it.
I have wanted to do something like this for 12 years because
we have our amazing helpline that's available 24/7, 365 days
of the year, even Christmas Day.A couple of years ago when I was
on the helpline, I was taking calls on Christmas Day.
And, you know, I recognize we need a dedicated space to be
(33:13):
held and we needed funders and we needed the right person to to
hold that space for the people. And also it wasn't me.
Yeah, because you get into this space as a leader in these
organizations. And I didn't.
I wanted there some to be some levels of separation as well so
that we could have a dedicated space who has someone that has
(33:34):
energy and that has training to do that.
And we were, we were getting some really just disturbing
calls on the helpline. And our beautiful peers were
equally not trained to take those calls either because like
we've been saying, indoors complex, it's yeah, so many
things. And, you know, a way to open up
(33:56):
that valve and let it all out isCuando Care.
And it's the first phase that we're hoping to expand the scope
in the very, very near future. But at the first stage, it was,
OK, let's have someone that's available to speak in real time
now. And if people do have emergency
situations or urgent things thatthey need to talk about, they
(34:16):
can just e-mail us. And they are really there's no
bookings or you're fully booked.Can I please by any chance, you
know, have a session and we do have some backup emergency
sessions that we allocate as well?
That's amazing, Jess, and there's another way that you
support people too, right through your volunteer community
(34:38):
network across Australia. We do, it's just such grassroots
work because they're the people out in the communities doing the
local education support so people can come to.
We have over 20 different communities across Australia.
We pay for the coffee or the teaat a local cafe so that people
can come and share and connect. Parents bring their girls, their
(35:02):
teens, their kids, they come themselves and we've been doing
that. Cuando's been doing that since
the 90s. And we now have some funding
that can enable people to come where they don't have perhaps
funds as well to to be able to pay for a coffee.
I remember years ago someone wouldn't come, didn't want to
(35:27):
come to a session, but she really needed support because
she couldn't afford a coffee andshe felt really isolated and and
like she wouldn't be welcomed. And that planted this seat in my
mind. This was in 2018 that if we
could ever just pay for people'scoffees to enable them and
reduce that barrier, then we will.
And so we've been able to do that now, but we also have a lot
(35:50):
of other programs like the mentor program.
If someone needs support, dedicated one-on-one support,
we'll sign them up with a mentorand go through a six week
program again completely free. And then we also have the Manage
Endo program. So what we found is people come
in to see the right health professionals and they are
(36:13):
struggling to afford to see people and they are struggling
to actually get in to see them. And clinicians and health
professionals were coming to me saying, Jess, if I could just
fill my first session with the patient and give that to them.
So they come with education, they come with some some tools
and some strategies that would be amazing.
So in 2019 you can see it up here in the corner that all
(36:36):
those little yellow post it notes up.
There I can, yeah. That was myself and another
person on my deck floating out. OK, what topics in 2019 would we
have right? And we just launched that
program not not long ago, and ithas over 30 videos from
different health professionals sharing their perspective or
(36:57):
sharing he's had to decrease a flare at home, or he's had to
talk to your partner about painful sex or he's had to think
about insurance With endo or chronic condition.
There's so many different thingsthat people can step through
themselves. And the idea is that they go to
a health professional or they can start to learn how to manage
some symptoms at home. So yes, we have the lesions with
(37:19):
endo, but we also have all of the symptoms, the lesions like
they do their own thing, but we can look at managing symptoms.
And so it's starting to give people that education and
awareness of right, there's all of these different things that I
could start to do myself. And hopefully that rebuilds
their confidence, increases their agency and you know, helps
(37:41):
reduce that, that, you know, I can't do anything.
We're trying to empower them to know that they do have tools.
We just need to open up those doors for people to know what
those tools are. That's so incredible.
And you know what, what strikes me as you're describing all of
the things that come up, I wouldn't have even thought of
insurance. And I suppose you don't know
where you don't know. You get told you have this
(38:03):
diagnosis, as you said on your hand, endometriosis and the
stage that you're and you're thinking, what is that?
Who do I talk to about this? And you Start learning about the
disease itself and then you start to realize probably or you
may not realize the implicationsfor other areas of your life.
So it's so great that you have that resource.
And is that available through your app or through your website
(38:24):
to get that information? It's on the website
itsjustquendo.org dot AU slash manageendo and it's also our app
will be relaunching it. You can still download it now,
but we're having a little bit ofa glow up.
So at the end of the month we'rehaving, it'll will be embedded
there as well. That's fantastic, Jess.
And we at Sage are really excited to be working alongside
(38:48):
you in raising awareness, particularly from our point of
view, hearing that the federal government was going to put
aside $578,000,000 into menopause and including a big
focus on menopause awareness, I'm thinking how much of that
touches on other related intrinsically connected
conditions like endometriosis. And so together, we can launch
(39:12):
awareness campaigns and initiatives.
We can promote advocacy, we can secure funding, we can do
outreach, we can connect people with the practitioners that they
need to get the right help. And we're really excited to be
doing this work with you. I love it because it just
extends the village. We can't all do this alone and
working in silos is what people have done for years.
(39:34):
Women build communities. We've done it for 10s of
thousands of years and we know that when we are working towards
the goal or working towards the right partnerships and
collaboration, we can really make moves.
So we're equally as excited. And to talk even more so about
the crossovers between perimenopause, menopause and
endo. It's an area that isn't really
(39:56):
addressed as much as it needs tobe and we know so many people
are suffering at that stage. So yeah, bring it on.
Thank you Jess for your time today.
I wonder if you have any last words or tips for people
listening to this about endometriosis or be getting help
or anything like that. If in doubt, if you're starting
(40:17):
to doubt something or starting to question something, to listen
to that instinct, give us the call booking with us.
We will. We can chat with you.
It may not be time for you to take action now, but at least we
can start to, you know, make a bit of a plan for parents, for
yourself, for the partner, anyone at all impacted.
We are here and you do not need to do this alone.
(40:38):
Thank you so much for your time,Jess.
I know you have a lot going on. You've been doing so many
amazing things and we really appreciate you carving out time
to be a guest on the podcast today.
Thanks for having me. Thanks, Jess.
Welcome to Sage Women, the podcast for midlife ladies
navigating perimenopause, menopause, and healthy aging.
I'm Melanie White, and each weekI talk with experts and women
sharing real stories, practical insights, and smart tips to
thrive through this stage of life and beyond.
It's Melanie here with a Sage Women podcast.
I'm really pleased to introduce today Jess Taylor from Quendo,
(00:24):
and I'm very excited to be talking about why endometriosis
is such an important thing that we need to be having a
conversation about what some of the gaps are and what the future
holds. Jess, welcome and thanks for
being here. Thank you so much for having us
and being an ally in the space of not only Women's Health, but
specifically for endometriosis. We're on the same mission.
(00:45):
Absolutely. Jess, I know that your company
has been around a long time. I'd love to hear a little bit
about your journey and for people listening to understand
how Cuando came into being. You're quite right now.
So Cuando was established in 1988 by what I call incredible
bra burning women who started speaking about Women's Health
(01:08):
issues, but specifically painfulperiods in the corners of
libraries because this was not atopic that was really discussed
up until openly until recently. And so these women were coming
together with their families andlearning about things from
libraries and closed door conversations with GPS and it
wasn't just really spoken about.And So what they did is they
(01:31):
come together and try to put an article in the Brisbane, the
Brisbane newspaper, I believe atfirst it was declined because it
used the word period. And back then they weren't
allowed to do that. But they went ahead and somehow
was able to pop an article in the library saying we're going
to talk about endometriosis at this meeting.
(01:51):
Please come if you're interested.
And they were overwhelmed at thenumber of people who saw that
article and thought, yeah, I have endo or there's this little
connection. And so this very informal group
was formed and, and women from that and families and partners
and doctors and researchers fromall around that had seen the
article came together for the very first time and thought,
(02:14):
right, this is much bigger than just our individual experiences.
We've got quite a lot of people impacted.
And it's a really similar story for me because I was diagnosed
just over 12 years ago after many, many years of struggling
with the symptoms of endometriosis, but not knowing
that they were abnormal because I grew up in a house with the
(02:37):
girls on the eldest of four, twoother sisters and a mum.
And my mum has recently been diagnosed with endo because what
her experience she thought was normal.
So of course, that generational normalization passed on to me.
And it was also a time where we didn't speak about these issues
as well. And the the information about
(02:59):
our period was just, you get it.That's it.
Here's what a tampon is. Here's what a part is that fit.
Yeah. And so I really struggled
silently because there was so much stigma around it.
And through school had so many issues.
But this massive expectation to continue and and excel and not
(03:21):
let your academia go down. And I would faint at school and
end up in sick Bay, put in ambulances because no one really
knew what was going on. I remember someone suggesting
that I was being a hypochondriacand but I just would literally
be. I remember standing in the line
to the library where we were having a class and I was in my
(03:43):
senior years and my entire body just went blank, completely went
blank. And I remember waking up in an
ambulance. So this was a common occurrence
for me. And it wasn't until many years
later that I was at a family barbecue and my sister-in-law
had said to me that she had justhad a hysterectomy because she
(04:04):
had something called endometriosis and adenomyosis.
And I thought, what is that? So learn a little bit about her
journey. Went to my GP and said, look, I
want to be checked for endometriosis.
I don't want a hysterectomy. We now know that a hysterectomy
is not a cure for endometriosis,but that was my end.
Went to the GP, referred to a gynaecologist 3 weeks later
(04:27):
after I had been to 11 differentGPS.
And I remember speaking to one who referred me to a
psychologist and they said, look, I think, you know, there's
just something going on in your head that you need to have
looked at. I was sitting on a psychologist
lounge. And when you have, when you're
in significant amounts of pain, your body reacts.
(04:48):
There's, you know, you're clammy, you can feel this.
I've now had two babies, both natural births.
It feels like a contraction. And I can handle my heart say
now that I know that I have feltsignificant contractions with
two others. That is what this endo flare or
endo pain has always felt like. And your body responds.
Of course it does. So this psychologist before I
(05:12):
admit, my sister-in-law going back a bit, she looked at me
when I had a flare on her loungeone day and she said, Jess, no,
no, there's, there is something anatomically, physiologically
going on inside your body. This is not in your head.
He popped me in an ambulance andup I went to the hospital.
But it was, you know, a lot of that back and forth, a lot of
(05:33):
that trying to work out endoscopies, colonoscopies, who
you name it, you know, you name the scope.
I've had it and it was that one conversation without my
sister-in-law is not a health professional, that lived
experience conversation that gave me my little nugget that I
could go and search for. So Fast forward to having
(05:53):
surgery, I wake up and they write on your hand what you've
what they found. So I had endometriosis written
on my hand. I had stage 2, stage 3.
So they wrote that down as well.And I'm looking at my hand
going, what in the world is endometriosis?
Like my sister-in-law has just said it now they've found it,
what is this thing? And so I was Googling and came
(06:14):
across the Quindo Helpline. And I called the Quindo Helpline
and one of those original founding members, one of those
original bra burning women that started this in 1988, answered
my call. And I was very, very early 20s.
She would have been in her 60s, huge age gap.
But this woman speaking with me over the phone made sense of my
(06:36):
entire life, enabled me to understand all the symptoms I've
always lived with, and let me know that there were not only
hundreds but thousands of women out there who also were
experiencing the same thing. And I remember laying there
going, surely I'm not the only one.
And this woman just confirmed that.
So six weeks later, I not reallyrecovered.
(06:59):
But you know, as we do with women, we get on with it, don't
We attended the AGM and they said, look, we need to close
down the organization. It had been going for quite some
time. They were really tired.
They just couldn't continue. And I was very, very early 20s.
No, you can't close it down. I've just found it.
Please give it all over. I will pick it up and run with
(07:19):
it. I had no idea what I was doing.
My my grandma came with me, my mum, my sisters, my family all
came to the AGM who have all runorganizations themselves.
So thank goodness I have these beautiful people around me to
guide. But I had just found this light
source who made sense of my life, and I could not let that
(07:40):
go because I thought, if I've just experienced this, how many
other people are isolated and living like this?
So we went through the process of bringing the organization and
creating what it is today, and that was just over 12 years ago.
That is an amazing story, Jess. I can't even imagine how you
(08:02):
must have felt when you rang theQuando helpline and somebody
could tell you your life story or tell you make sense of it.
What was that like? Was so I remember being in our
laundry because I thought, oh, you know, just reflecting on how
this went right when you've justhad this diagnosis and, and all
(08:27):
of this information thrown at you, it's a lot to process.
And I remember after the conversation, you know, with,
with that founding member on thehelpline, she was sharing with
me, you know, this is what's normal.
This is what's not normal. I hear you, I see you, this is
true. There are lesions in your body.
(08:47):
This is true pain. This is not in your head.
And, and just how she was sayinghow much I believe you, I
believe you. And I remember reflecting on
that once I had got home, I was in the laundry washing all of
the clothes that I had bled through and had, you know, had
accidents through. And I just remember looking at
them going, right. I, I have been seen, I've been
(09:11):
believed. All of these symptoms that you
experience behind closed doors, other women are going through
this. And so it was this incredible
level of crew support, validation, and that just
ignited this fire in my belly that went, Oh my gosh, how many
other women are going through this and are suffering?
(09:34):
And that is just not OK with me.So it was a mix of emotions, but
it took me some time to allow those to come through.
That sounds so powerful, and it must have taken you a lot of
courage. Like what I'm hearing and what
you've said so far is a lot of persistence.
You've really stuck with trying to find answers and going
(09:55):
through all of the doctors to get to the bottom of things.
And then not just finding your own answer, but saying, where
can I take this? Now?
I'm just really noticing your courage to go through that
process and your commitment to take it to the next level.
Been for since I was a little girl I've always not followed
the rules and I have always beenvery curious and also growing up
(10:19):
in a household where if there's a problem we fix it.
If there's a problem, we just problem solve to the next step.
And I've, I've watched my familybuild netball associations and
build football associations and,you know, there's lots of
different clubs that they've hadto see these really big issues
in, in sporting areas and different people, different
(10:42):
personalities. And they've just done things
I've grown up with that around me.
And so I applied what I had grown up with to this new world
of mine and had no idea what I was doing.
I still don't know what I'm doing.
But we, we listen to people, we listen to the problems.
We don't need to know all the answers.
(11:02):
We try and work out what would, what would you need to help
improve that part of your life? And we start to build it.
And I think that's what we do sowell when we come together as a
community. It's amazing, Jess, and on
behalf of women everywhere with endometriosis, thank you for all
of the work that you're doing. I've never been through it
(11:24):
myself. And for anyone listening who's
wondering what is endometriosis,could you give us a simple
definition? So endo is a really complex
condition. It's many different types of
things, but it's and it's very basic.
It's where tissue that is similar to the lining of the
uterus is found in other parts of the body.
(11:44):
As of 2023, it has been found inevery organ of the body.
It has been found in a very, very small amount of men, but
most predominantly women and those who are identify as
female, although the sign femaleat birth.
And now by definition, endometriosis is found outside
of the uterus. So we often hear women having or
(12:06):
being suggested hysterectomy. But because hysterectomy, as we
would likely know, that's removing the uterus or there's
different types. But if you remove the uterus,
yes, it turns off some of the bleeding and some of the
hormones, but you haven't removed the disease because by
definition it's outside the uterus.
So these lesions that look a bitlike jam get stuck all around
(12:29):
the organs. And if you think about those
inflatable men at car sales, that's what our organs want to
be doing. They want to be floating around
in our pelvic area and endo sticks them together and they
get really upset and really angry.
That creates something called scar tissue, which is very
similar to if you imagine a spider web with all of the silky
(12:51):
web around. So all of the organs in our
pelvis gets webbed together. And that can create, you know,
really shoes people's inability to urinate properly, to have
really good sexual function to bowel motions.
And as those lesions grow and grow, they infiltrate the
muscles, they infiltrate the tissue, and everything gets
(13:13):
really stuck. And wherever they're set up in
the body, they also start bleeding.
So the disease gets progressively worse in people
over time. Wow, that sounds like a
significant disruption to life. I mean, I'm thinking about
bladder function, bowel function, other areas of the
(13:34):
body. I can only imagine it.
It's obviously needs a lot of attention.
And I was going to ask you why did, why do you think
endometriosis awareness matters now?
I suppose it always matters, butdo you think that there's
something different going on right now that people are rising
up, or what is it That's really creating a call to action around
this? So, so many thoughts on this.
(13:58):
So just to say that endometriosis is not a new
condition, but it's a newly spoken about condition.
And I think what we have done collectively is empower Stories.
We have one, brought peoples with lived experience together,
supported them so that they feltvalued, that they had an
(14:19):
opportunity to make a gift, makea difference, supported them as
they're unravelling their story,held space for them and given
them confidence to do so. So because all of that, they've
been able to go to ministers andshare their story, speak to
media, speak to the people and their families.
But we've also done that with doctors who are also frustrated
(14:40):
because they're seeing these really unwell patients and they
need to do something in in the best of their ability too.
And we've also collaborated withresearchers and other health
professionals and then other organizations.
And as we say, if you know sevenwomen, you should know
endometriosis because it affectsone in seven, and that's more
common than breast cancer, diabetes and asthma.
(15:01):
And so when we put it in these terms, we realize, oh, I
probably know someone with endo,that they're very likely to be
suffering alone. When you rally around people,
that isolation reduces and you give them the next step.
So I think that we've done an enormous amount of work in the
awareness space, but it's being driven by people with lived
(15:22):
experience, willing and able to share their stories.
And there's some of them are really horrific.
My story isn't as is nowhere near horrific compared to the
others, but it's not an uncommonstory.
And when you think of and listento these women and what they've
gone through, you think, how is this happening?
How is this happening? And that fire in my belly that I
(15:44):
mentioned earlier occurs in, in all the people that we work
with. And they just want to funnel
their experiences so that the next generation doesn't have to
go through it. We're at a point now where, in
my humble opinion, awareness forawareness sake is done.
We need awareness and action because it's one thing to know
about it, but people then spin on their wheels, what do I do
(16:06):
next? People need help right now.
And so that's where we what we do at Cuando is we give them
services, We give them those next steps so that yes, they're
aware of what's going on. They know what's normal and
what's not normal, and then theyknow what to do about it.
I hear the average diagnosis time is 7 to 10 years.
(16:29):
It is so we have because of the awareness that's now dropped to
around 6 1/2 in a very short period of time because people
are again, not just thinking what they have to live with is
normal. But that's still far too long. 6
1/2 years living with these symptoms is such a long time and
to think about their mental health impacts, their financial
(16:50):
impacts, not being able to go towork or school or study and just
their life, that's that. That is far too long.
So we still have a lot of awareness to do, but it means an
action or call to action behind it every time we talk about the
word. I can hear a lot of your values
coming out in this conversation and and I love it because you're
(17:11):
on a mission. I wonder if you have a personal
vision that encapsulate some of what you said, or maybe
something different. What is it that really drives
you at the core of things, Jess?How do you see the world in the
future, for example? I look at my daughter, who's 8,
and I remember I was 8. I had no idea about periods or
(17:35):
this or even the word endometriosis.
And until you know these words, you don't know what you don't
know, right? So when you start to learn what
these are, it's like these doorsopen and for my generation,
generations before me, and I think even still this
generation, there's so many closed doors, they don't even
know that they're there. But whilst we don't have a cure
(17:55):
and probably in my lifetime, we,we're very unlikely to have the
cure, I think we will in my lifetime actually understand the
disease better. I think we'll know what the
lesions are, what they're doing and how they move in the body.
That will happen in my lifetime,but I don't think a cure would
happen in my lifetime, right? But what I do hope for is people
(18:17):
in my daughter's generation to know the word because when you
know the term, you know it's a thing.
You can then go and get help. And because we're educating GPS
and we're educating the wider group, they're not going to go
to a health professional and be blocked.
That will that doors not going to be blocked.
We want them to open it. And she comes to me now in
(18:39):
school holidays, comes to meetings and I'll have to tell
you last school holiday she camewith me to this meeting and she
has, she has grown up doing thisstuff with me.
I was breastfeeding her in Parliament as we were pulling
the National Action Plan together.
I was in Labour as I was lobbying politicians to get this
National Action Plan up and running right policy.
(19:02):
So she has been with me the whole way and she sat with me
last holidays and the person I was speaking to couldn't
pronounce the word endometriosis.
And she paused and she said, so kindly excuse me, I just need to
correct you. It's actually endometriosis.
And I was so proud of her because she knows the word.
(19:24):
And if you yeah know these terms, they will be able to
search the word or, you know, questions start to question
things. So whilst you know the
beautiful, big and goal is a cure, I have to.
I'm a realist. What else can we do to get to
that point? Educate these people.
(19:47):
Giving people the word, I love that story.
I've got goosebumps as you were saying it.
Because when someone has that awareness and that knowledge and
that understanding, they they are empowered within themselves
to advocate for themselves to know that being dismissed by
somebody who doesn't know is notOK and that they can.
Look for the right people in theright places and we can close
(20:07):
that treatment or that diagnosisgap from 6 1/2 years.
And congratulations on getting that down on your work towards
that. What can we do to bring it down
further, faster? And that, as you say, that
awareness is so important for the next generations coming
through and the current ones even you said your mom's just
been recently diagnosed. Yeah, it's and particularly with
(20:30):
women who go through, are going through perimenopausal menopause
often. So endo is so complex because
you might have a lot of disease and going on inside you and have
no symptoms at all until you go through a significant or even a
seemingly small life situation or event.
While other people might have a tiny amount of disease, but it
be in the most enormous amounts of pain.
(20:52):
And so it's tricky then to, yeah, manage disease and manage
symptoms. And a lot of women like my mum,
she, you know, could have 4 babies no problem at all, you
know, couldn't, as she says, could look at my dad before
pregnant, no problem. So her, her fertility wasn't
impacted. And it was when she started
(21:13):
school, perimenopause and menopausal, that all of this
really ramped up. And so that was for her at a
later stage in her life, lookingback on everything, she just put
up with a lot. She just put up with it thinking
it was normal. And it when it was so unbearable
to manage and she just simply couldn't manage it anymore is
when she went to seek help. And I know from the thousands of
(21:37):
people who have spoken with me over these over 12 years,
they're in exactly the same situation.
And it is so important that people understand it's not a
siloed condition over here, separate from anything else, as
you say, that intersection with menopause in a time where
existing conditions can can become amplified.
(21:58):
And then think about all of the other conditions that intersect
endometriosis. And that somehow we need to
untangle those threads and really understand what's going
on. What might be some other
conditions that could intersect with endometriosis?
But we often hear, particularly around perimenopause and
menopause, the, the ugly cousin called adenomyosis.
(22:21):
So it's endometry. It's, it's where the inside of
the uterus is really invading itself.
And if you think of, you know, that Fruit Ninja app that was
around a couple of years ago where the fruit would drop down
and you'd have a knife and you would be cut.
I mean, that's how I visualize Adam adenomyosis.
So if you imagine just these intense sharp pains going on
(22:45):
inside, like these fruits just exploding inside your uterus,
that's something that can occur.It's a lot of people with endo.
I think someone said as high as 60% of people with endo also do
have adenomyosis from the the most recent World Congress.
Yeah. And again, thinking menopause
and perimenopause, that's one that really starts to ramp up.
(23:08):
So there's lots of clotting, lots of bleeding, more than can
be managed. So that's a big one.
We also have anxiety, which is really, really huge POTS, which
is like where people faint a lotand, and differences in blood
pressures. You know, there's a lot of
people who are neurodiverse in this space as well.
(23:29):
PCOS, infertility, you know, a lot of these Women's Health
issues spring out from endometriosis and that's why
it's this quite large condition and quite complex.
And possibly quite hard to see and to untangle from those other
things that might look like something else perhaps.
And then there there is this underlying component that hasn't
(23:52):
been recognized or realized maybe.
Absolutely. And we often will say if people
can't just continue their life without simple management tools
like Panadol, Nurofen and a heatpack, if people can't manage
just with those things, then we do need to think about, you
know, getting some additional help, right?
(24:13):
And even in someone's period, 80Nils, I think it's 1/3 of a cup
is what someone will ask across their entire bleed of that
period, right? Wow.
So women who are flooding several times in their menstrual
products, that's not normal. And so coming back to right, if
(24:35):
we can't be managed with a Panadol Nerf and heat pack and
I'm bleeding more than that, then we really need to start
thinking about first, OK, even endometriosis.
Let's get the hormones chest checked.
Let's get some blood panels doneto rule out any ovarian cancers
or any endometrial cancers before we start going down.
(24:55):
And in this day and age, whilst well, historically endometriosis
has only been able to have a diagnosis from a laparoscopy,
which is a, it's a, people call it an elective non invasive
surgery, but it's, it's often not elective.
It's, you know, I need some helphere.
(25:17):
They're blowing up the belly. They're putting scopes in,
cutting out the lesions where possible and, and hopefully not
cutting them out where possible.Yeah, totally invasive.
And then it can take up to 12 weeks for you to feel like
yourself again. So that is what has always been
the way for diagnosis. And only recently with very new
(25:40):
technology, very new training, we can look at endometriosis or
see it on scans, but that's not everyone.
There are only a few of them around the country that enables
that. And we've got a lot of work to
do in that space. Not every, you know, person can
do that very, very specific scanning.
(26:01):
So yeah, it's it's tricky to getall of that information
together. But there's so much work
happening in this area too. Like this is a really, really
fast moving research space because women and families and
the whole sector are calling outgoing.
Come on, let's let's make this move.
Yeah, the prevalence is too highto ignore.
(26:23):
We have to do something and the work that you're doing is
leading into that. I think what I've, what you've
just said, it's a really important point is that it's not
just about how does an individual manage their
condition. It's how do we get people to
have a non invasive test processthat's easily accessible.
And the person is doing that test is trained and has
(26:44):
professional capability that they're not going to dismiss you
or send you down another 10 rabbit holes.
I mean, talk to us about the gaps in care coordination for a
moment. So I'll give you a bit of a, a
picture, right. So someone will go, or perhaps
(27:05):
will be listening to this and going right.
Well, I can't manage with a Patadol Nurofen or a heat pack.
All right, well, I should probably go get that looked at.
They go to their GP and their GPmight say to them oh just lose
some weight or you're too stressed and you know, come back
to me in 3 or so months and you know, we'll see how you're
going. Meanwhile that person has become
(27:26):
worse because this is a cycle and also a pain cycle.
Things get progressively worse over time though, whilst in the
initial conversation that GP whowas very well meaning but very
unaware has, you know, not really intercepted with
education, information, resources, some, you know, tests
(27:46):
that they could do. They've said, oh, you're
stressed, you're overweight, trylose some weight and come back.
This is still a common, common question that people or common
occurrence that people are experiencing.
And sometimes that patient will go, all right, well, I'll go
home, I'll try to do all those things.
They can't lose the weight because of all the reasons going
on. Or they might present to
emergency with this intense painthat they don't know where it's
(28:09):
come from. Or again, it's getting
progressively worse and the emergency doesn't know what to
do. They do an ultrasound.
If they can just rule out appendicitis, someone, sometimes
they take out your appendix not needing to because that's what
they think it is. Or they put it down to an
ovarian cyst rupture. And they're really limited in
(28:30):
the emergency department around what they can do.
So that patient, that woman goeshome, right?
Well, I've been to my GP, I've now been to an emergency
department. OK, well, what is going on with
me? And they start to question
everything because they have tried to engage with health
professionals again, who are well meaning most of the time,
but just unaware. I often say health professionals
(28:51):
are not misbehaving. They're misunderstanding.
They're misunderstanding us as women and what we're, you know,
we know our bodies, so listen tous.
And so that is a real, again, somany gaps in those services, so
many gaps in in that care. You've got some surgeons who are
trained to do the procedure and are doing it anyway.
(29:12):
You have other health professionals who are similar,
not trained in this space. And then you have an amazing
group, an amazing, what I call the village of health
professionals who are truly, truly doing the right thing, are
trained appropriately, are listening to patients and are
getting amazing outcomes. And we need to elevate them and
(29:34):
we need to support that workforce because if we don't
have that workforce, women can'tget better.
And So what we have seen at Quendo is we've been hearing
about, you know, I've been to emergency, I've been to the GP
and I just need someone to listen to me and help me be
pointed in the right direction. And we've launched Quendo Care.
We say until there's a cure, there's a cat, there is care.
And this is where a nurse who is, yeah, she's specialised.
(29:58):
She's actually been an IVF nursefor eight years and she has a
lived experience. And you can actually book in and
speak with her for an hour up toan hour for free and over the
phone. And where we have this space
where we can completely listen to all of the things going on
for you and help you with those next steps.
So it might be the right help professional to go to.
(30:20):
It might be organising all of the symptoms, working out, you
know, what will your finances allow and how do we prioritise
that? So there are significant gaps in
the service because of the lack of coordination, and we're
trying to fill that gap because of all these thousands of
stories we've been hearing from women saying I just need someone
(30:41):
to sit with me and help me alongthat way.
How do people access Cuando Care?
How does it work? Let's say that I've got some
symptoms, I've heard this podcast or I've become aware of
the conversation around endometriosis, and I'm going,
well, what do I do next? Where do I go?
How do I access this? You just go to quindoqendo.org
(31:02):
dot AU slash quindocare, QENDOCARE and you literally just
find a date and a time that works for you and booking an
appointment. And this is for people with
lived experience. It's for partners, for mums, for
parents, for teachers, anyone atall.
So there's no referral required.You can book in straight away
(31:23):
and it's completely free. So the calendar is on the
website that you can find the date and time that suits you and
book it. Book yourself in.
So this is a telehealth call on a meeting like this one?
Or is it a phone call? How does that work?
It depends on what the client isafter.
So often it will be either it isall telehealth, either be on a
(31:44):
video call or just a phone call.Because we have some people who
are rural, you know, out past Kanamala and need support right
now. And video conferencing does not
work out there because of reception.
So we can get on a landline and do a phone call.
And then we're here to follow upwith you because there might be
some things that you're working on and you know, it can be a big
(32:06):
discussion to have, particularlyif someone has just shared it
for the very first time. It's a lot to unpack.
So we will book in another session just to follow up to see
how you're going. You know, if there's some goal
setting happening in that appointment, it might be as
simple as talking with someone about XY and Z.
We want to check in to see how you went with that or as we
(32:27):
know, life comes up. So it may be that we have to re
evaluate the goal and work out. All right, well, we've had this
life event happen. What are your steps next?
Amazing. Amazing that you're offering
this in in a way that's so accessible in terms of the
format and an hour is very generous and having it for free
is incredible. It must have taken a lot of work
(32:49):
to get to this point. So much work it.
I have wanted to do something like this for 12 years because
we have our amazing helpline that's available 24/7, 365 days
of the year, even Christmas Day.A couple of years ago when I was
on the helpline, I was taking calls on Christmas Day.
And, you know, I recognize we need a dedicated space to be
(33:13):
held and we needed funders and we needed the right person to to
hold that space for the people. And also it wasn't me.
Yeah, because you get into this space as a leader in these
organizations. And I didn't.
I wanted there some to be some levels of separation as well so
that we could have a dedicated space who has someone that has
(33:34):
energy and that has training to do that.
And we were, we were getting some really just disturbing
calls on the helpline. And our beautiful peers were
equally not trained to take those calls either because like
we've been saying, indoors complex, it's yeah, so many
things. And, you know, a way to open up
(33:56):
that valve and let it all out isCuando Care.
And it's the first phase that we're hoping to expand the scope
in the very, very near future. But at the first stage, it was,
OK, let's have someone that's available to speak in real time
now. And if people do have emergency
situations or urgent things thatthey need to talk about, they
(34:16):
can just e-mail us. And they are really there's no
bookings or you're fully booked.Can I please by any chance, you
know, have a session and we do have some backup emergency
sessions that we allocate as well?
That's amazing, Jess, and there's another way that you
support people too, right through your volunteer community
(34:38):
network across Australia. We do, it's just such grassroots
work because they're the people out in the communities doing the
local education support so people can come to.
We have over 20 different communities across Australia.
We pay for the coffee or the teaat a local cafe so that people
can come and share and connect. Parents bring their girls, their
(35:02):
teens, their kids, they come themselves and we've been doing
that. Cuando's been doing that since
the 90s. And we now have some funding
that can enable people to come where they don't have perhaps
funds as well to to be able to pay for a coffee.
I remember years ago someone wouldn't come, didn't want to
(35:27):
come to a session, but she really needed support because
she couldn't afford a coffee andshe felt really isolated and and
like she wouldn't be welcomed. And that planted this seat in my
mind. This was in 2018 that if we
could ever just pay for people'scoffees to enable them and
reduce that barrier, then we will.
And so we've been able to do that now, but we also have a lot
(35:50):
of other programs like the mentor program.
If someone needs support, dedicated one-on-one support,
we'll sign them up with a mentorand go through a six week
program again completely free. And then we also have the Manage
Endo program. So what we found is people come
in to see the right health professionals and they are
(36:13):
struggling to afford to see people and they are struggling
to actually get in to see them. And clinicians and health
professionals were coming to me saying, Jess, if I could just
fill my first session with the patient and give that to them.
So they come with education, they come with some some tools
and some strategies that would be amazing.
So in 2019 you can see it up here in the corner that all
(36:36):
those little yellow post it notes up.
There I can, yeah. That was myself and another
person on my deck floating out. OK, what topics in 2019 would we
have right? And we just launched that
program not not long ago, and ithas over 30 videos from
different health professionals sharing their perspective or
(36:57):
sharing he's had to decrease a flare at home, or he's had to
talk to your partner about painful sex or he's had to think
about insurance With endo or chronic condition.
There's so many different thingsthat people can step through
themselves. And the idea is that they go to
a health professional or they can start to learn how to manage
some symptoms at home. So yes, we have the lesions with
(37:19):
endo, but we also have all of the symptoms, the lesions like
they do their own thing, but we can look at managing symptoms.
And so it's starting to give people that education and
awareness of right, there's all of these different things that I
could start to do myself. And hopefully that rebuilds
their confidence, increases their agency and you know, helps
(37:41):
reduce that, that, you know, I can't do anything.
We're trying to empower them to know that they do have tools.
We just need to open up those doors for people to know what
those tools are. That's so incredible.
And you know what, what strikes me as you're describing all of
the things that come up, I wouldn't have even thought of
insurance. And I suppose you don't know
where you don't know. You get told you have this
(38:03):
diagnosis, as you said on your hand, endometriosis and the
stage that you're and you're thinking, what is that?
Who do I talk to about this? And you Start learning about the
disease itself and then you start to realize probably or you
may not realize the implicationsfor other areas of your life.
So it's so great that you have that resource.
And is that available through your app or through your website
(38:24):
to get that information? It's on the website
itsjustquendo.org dot AU slash manageendo and it's also our app
will be relaunching it. You can still download it now,
but we're having a little bit ofa glow up.
So at the end of the month we'rehaving, it'll will be embedded
there as well. That's fantastic, Jess.
And we at Sage are really excited to be working alongside
(38:48):
you in raising awareness, particularly from our point of
view, hearing that the federal government was going to put
aside $578,000,000 into menopause and including a big
focus on menopause awareness, I'm thinking how much of that
touches on other related intrinsically connected
conditions like endometriosis. And so together, we can launch
(39:12):
awareness campaigns and initiatives.
We can promote advocacy, we can secure funding, we can do
outreach, we can connect people with the practitioners that they
need to get the right help. And we're really excited to be
doing this work with you. I love it because it just
extends the village. We can't all do this alone and
working in silos is what people have done for years.
(39:34):
Women build communities. We've done it for 10s of
thousands of years and we know that when we are working towards
the goal or working towards the right partnerships and
collaboration, we can really make moves.
So we're equally as excited. And to talk even more so about
the crossovers between perimenopause, menopause and
endo. It's an area that isn't really
(39:56):
addressed as much as it needs tobe and we know so many people
are suffering at that stage. So yeah, bring it on.
Thank you Jess for your time today.
I wonder if you have any last words or tips for people
listening to this about endometriosis or be getting help
or anything like that. If in doubt, if you're starting
(40:17):
to doubt something or starting to question something, to listen
to that instinct, give us the call booking with us.
We will. We can chat with you.
It may not be time for you to take action now, but at least we
can start to, you know, make a bit of a plan for parents, for
yourself, for the partner, anyone at all impacted.
We are here and you do not need to do this alone.
(40:38):
Thank you so much for your time,Jess.
I know you have a lot going on. You've been doing so many
amazing things and we really appreciate you carving out time
to be a guest on the podcast today.
Thanks for having me. Thanks, Jess.
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