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The cost & courage of caring - stories that spark resilience.
Welcome back to this week's
episode of the Caregiver's
Podcast.
I'm your host, Dr.
Mark Ropaleski, and you can call
me Dr.
Mark.
Today, we're talking about
endometriosis.
It affects roughly 1 in 10 women
and girls of reproductive age,
yet is still too often reduced to
bad cramps, a heavy period,
or something women are just
expected to push through.
But for many women, endometriosis
is not a minor inconvenience.
It's a pain that can reshape
ordinary life.
It can interfere with work,
intimacy, parenting, caregiving,
sleep, energy levels,
mental health, and the ability to
move through a normal day
without having to hide what's
happening inside your body.
And for many women, one of the
hardest parts is not just the pain
itself.
It's how often they're left
carrying it alone, trying to
function,
trying to earn a living, trying to
look okay,
trying to explain something that
many people still do not fully
understand or believe.
Our guest today is Dr.
Laura Katz,
a clinical health and
rehabilitation psychologist and
assistant professor at McMaster
University,
and the co-founder of
Endometriosis 360.
Today, we're going to talk about
what endometriosis actually is,
what it feels like to live with,
and how it reshapes intimacy,
work, and everyday life,
and what women can actually do
when proper care is hard to
access.
Dr.
Katz, welcome back to The
Caregiver's Podcast.
And before we begin, please take
the time to subscribe to The
Caregiver's Podcast on Apple
Podcasts,
Spotify, or wherever you listen.
Leave us a comment, leave us a
review.
It would really help.
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second.
It's the best way to support the
show.
Laura, welcome back to The
Caregiver's Podcast.
So happy that you're here to join
us once again.
It's great to be here.
Thanks for having me back.
Well, in the tradition of the
podcast, we're going to jump right
in.
Today, we're talking about
endometriosis,
and acknowledging that
endometriosis affects roughly 1 in
10 women and girls of reproductive
age,
yet a lot of people still hear it
dismissed as just bad cramps.
So tell us, what is endometriosis
actually?
Endometriosis is such a complex,
not only a gynecological
condition, but a huge systemic
condition.
And so, of course, we know the
actual pathology and physiology of
what the condition is,
but what we're starting to
understand is it's just so much
more.
So because it affects somebody in
such a young age,
and there's such a long length of
time that they have to go through
with maybe having their symptoms
not properly validated, heard,
assessed.
And so it might be up to 10 years
by the time they actually get
the kind of assessment, diagnosis,
and treatment that they require.
And so by that time, it's taken
such a huge impact on their
physical life,
their relationships, their
occupation, their family,
the different roles they play in
society as a whole, the workplace.
And so when we just dismiss
endometriosis as bad cramps,
we fail to acknowledge the huge
systemic load that it really takes
on women within our society.
So for the woman listening at home
to this,
how might she know if what she's
experiencing could be
endometriosis,
and what are sort of the symptoms
and patterns she should be paying
attention to?
That's a really great question.
And, you know, we know from a lot
of women, particularly, you know,
before they're able to get to
healthcare, maybe get that kind of
assessment and diagnosis,
it may show up with having utterly
debilitating cramps.
And not to the point where it's
uncomfortable,
but they have to take time off
school or work where, you know,
they're bedridden,
they're curled and hunched over.
It's going to affect your GI
system, potentially really heavy
bleeding.
As you start to get upwards in
life, it might start to affect
things like fertility.
And so if this is somebody
listening,
and you have been somebody that
have really struggled with
incredibly painful cramps,
periods, and bleeding, and it
hasn't been assessed,
this is something that you might
want to start listening to and
seeing
if some of those things are
affecting you.
So, Laura, for women living with
endometriosis,
what does it actually feel like
day to day,
especially when it's at its worst
and starting to sort of take over
your life?
The really tricky thing about
endometriosis is the
unpredictability of the symptoms.
And so you kind of live within the
cyclical nature of the menstrual
cycle.
And for a lot of women, they may
only get 7 to 10 good days per
month.
And then as soon as they start to
hit that luteal, premenstrual, and
even menstrual phase,
you really start to experience
quite significant symptoms.
And so because of that, the
unpredictability about,
can I eat this food?
Am I going to be able to go to
work today?
Am I going to have a flare-up
that's so bad that I'm not going
to be able to function?
And so those are some of the big
things that really strike is the
total unpredictability
and the uncertainty of how it's
going to impact women day to day
in their life.
You've got broad experience in
your practice and in discussions
with colleagues.
Are there women who actually don't
get that 7 to 10 day break and
suffer chronically through the
month?
Absolutely.
There's a lot of women who may not
get any day's break.
And it might just feel completely
different throughout the month.
And there are a lot of treatments
that, hormonal treatments that
women may be on,
that may dial down the symptoms so
they're not as painful throughout
different times of the month.
Or they may, you know, skip
periods so they don't have the
symptoms as bad or the heavy
bleeding and pain.
But it really varies.
And for a lot of women, they may
not have any good days whatsoever
at all.
We all have different pain
thresholds as individuals.
But when women describe
endometriosis pain, what kind of
pain are they actually talking
about?
Help us understand the level and
severity of it.
It's a really good question.
And I work with a phenomenal
pelvic floor physiotherapist, Jill
Mueller.
And she loves to describe the
story where she herself is
somebody with lived experience and
has endometriosis.
And because she's, you know,
suffered all the pain and cramps
and all of that for many, many
years,
she chose to have childbirth with
no anesthetic and completely
medication-free.
And she said that the
endometriosis cramps were at times
worse than childbirth.
And so that's some really strong
experience and a really good
example of how the pain can be
utterly debilitating to the point
where it can be compared sometimes
to childbirth and contractions.
It seems to come up again and
again, this one phrase in this
community of individuals, when
they speak of their experience or
they reflect,
nobody believed me.
Why is being believed such a
central part of the endometriosis
experience?
It's such a central part because
the majority of these women have
had their symptoms dismissed for
upwards of a decade.
And so it's been 10 years plus of
debilitating pain where they've
been given treatment
recommendations like have a bath,
try to relax, do some yoga.
And you're trying to tell somebody
with the pain experience
equivalent to childbirth to go
take a bath and relax.
And so 10 years of that, and then
they finally get this diagnosis.
By that point, it's been a decade
of their life that has been
totally identified with struggling
to cope with such a condition.
And those years probably build on
each other.
Mm-hmm.
So it's years of school and
friendships and university or
college and careers and jobs and,
you know,
meeting partners and trying to
have children, some of the most,
you know, formative years in
somebody's life.
And this is often what somebody
can really identify with and
become such a strong part of what
they have to live with day to day.
So women who listen to this show
have shared that doctors told them
that they were just experiencing a
heavy period and put them on birth
control.
And I mean, what does that kind of
minimization do psychologically,
especially when it happens again
and again?
And you allude to the length of
time, which I think is supported
by the research literature that
seven to 10 years is not off the
table in terms of the amount of
time you live without a diagnosis.
What it does is it starts to
centralize and sensitize the
nervous system.
And when I work with patients, I
talk a lot about the neurobiology
of pain and how that leads to
different kinds of sensations in
the body.
And so when patients are
continually going in to seek
treatments and their symptoms are
getting invalidated and dismissed,
what that ends to leading to is
the fact that they feel more and
more unsafe in their bodies.
And they don't trust their
symptoms more and over time, that
starts to sensitize and centralize
all of the fight or flight
symptoms that are happening in
their body,
which essentially leads to medical
trauma.
And so a lot of the women that I
do work with, you know, when
they've had these decades-long
period of invalidation and medical
procedures and being dismissed and
discharged and all of that,
what it leads to is the fact that
they don't know what's happening
in their body anymore and they
can't trust their body.
And there's this real
hypervigilance of their symptoms
and experiences, which makes a
total amount of sense.
I mean, from what you describe, it
almost seems like the
sensitization overwhelms the
executive ability to just plan
your day,
plan for what you need to
accomplish, no matter what role
you occupy in your life and the
life of others.
It does.
It absolutely does.
And when we start to think about,
you know, what the science is
behind that, you know, this is a
safety mechanism that has helped
us survive for many, many, many
years.
And while it made a lot of sense
for us to have this system in
place while we're running from
bears or, you know, we're living
in caves and things,
it doesn't make a whole lot of
sense in our modern day lives when
we're going to doctor's
appointments or checking emails.
And so because of that and all of
the hypervigilance that's
experienced, it just hijacks that
system.
And you're right in the sense that
it overloads the ability to
function in our modern day life.
So, I mean, what does it do to a
woman over time to have
endometriosis dismissed and
minimized and maybe misdiagnosed
or treated as though pain is just
a normal part of being a woman?
I think it becomes really central
to an individual's identity in the
sense that they start to learn
that their bodies aren't safe.
The healthcare system and medical
practitioners aren't safe.
And they start to feel really out
of control in their selves and
their environments, which
decreases their self-efficacy,
which means they don't know where
to cope.
So, in some cases, they just give
up.
Because if they feel that they
don't know what to do to cope and
nothing they've ever done has
worked, then what's the point of
anything?
And that can lead to some really
scary places.
So, then, once you've actually
been taken seriously and receive a
diagnosis of endometriosis, what
is the typical treatment plan that
a patient can expect to be
initiated, at least the first
steps?
So, typically speaking,
historically, surgery has been
needed for a definitive diagnosis.
But nowadays, ultrasound-guided
diagnosis is becoming more and
more popular.
It's minimally invasive, of
course.
There's not a whole lot of risks
involved.
And so, with that, if you do
happen to get a diagnosis, and a
lot of the times, if people don't
even have access to those kinds of
resources, a lot of general
practitioners are starting to
assume a diagnosis, given the
symptoms and the experiences that
people are having.
And so, even with an assumed
diagnosis, treatment might look
like anything from starting some
kind of hormonal therapy to kind
of dial down the hormones and, you
know, all of the bleeding and the
pain.
It might involve some pain
management medications.
It might eventually involve some
surgical treatments and things
like that.
But ultimately, what we know to be
some of the best quality treatment
for endometriosis is assembling
some kind of multidisciplinary or
interdisciplinary team.
And like I spoke about at the
beginning, this isn't a
gynecological condition.
It's not just pathology in your
uterus.
It really encompasses so much of
your systemic overall being in
terms of your psychology, the
kinds of foods you eat, and how it
impacts your digestion and your
body, your movement and your
physical ability to, you know,
navigate your musculature, and so,
so much more.
And so, treatment can look like a
variety of different things, given
people's resources and, you know,
how they're able to assemble
different practitioners working
with them.
I mean, you bring up a good point
in that it's not just a condition
of the uterus or immediate
surroundings, but these tissues
can migrate inside the abdominal
cavity and implant in different
spots, giving symptoms in areas
which we typically would not, you
know, ascribe to endometriosis.
Endometriosis as being the top
three causes for pain in that
area, knowing that other things
are much more common, but at the
same time, they can be real.
I mean, I've had patients in my
practice who have gastrointestinal
bleeding every month because of
implants of endometriosis that
have kind of burrowed through and
just cause enough swelling and
reaction to cause bleeding
cyclically like that.
Obviously, we're called to make
sure it's not bleeding from
something else, and we often
support our gynecologic teams in
that way to help clarify and sort
of steer, help them steer the
direction the right way.
So, you mentioned something really
important, that there's a
multidisciplinary team.
What is the ideal approach and
what is the ideal scenario that
endometriosis would therefore be
treated?
I think this varies so much based
on what kinds of resources are
available.
And so, it might look different
for somebody in different areas in
terms of, you know, what kind of
resources they have access to and
so on.
If they're urban, if they're more
rural, and, you know, and all of
those kinds of factors.
Big issues, for sure, in terms of
the access of healthcare.
Ideally, you definitely want, you
know, medicine involved.
And so, sometimes I've seen, you
know, individuals with, they'll
have endometriosis lesions all the
way up to their diaphragm, all
over their GI, like everywhere you
can think of.
And it might even be the case
that, you know, a
gastroenterologist might be able
to see them sooner than a
gynecologist.
And so, again, it's the bouncing
back of the medicine.
But obviously, having a medical
team is a really important part of
this condition.
Another really important part of a
multidisciplinary or
interdisciplinary team for
endometriosis is some kind of
pelvic floor physiotherapy.
We know that because of the
location, there's often a lot of
hypertension in the pelvic floor,
which means the muscles are
really, really tight.
And that can cause an incredible
amount of pain just for day-to-day
life and movement and activities,
sexual functioning, going to get,
you know, medical exams and so on.
And, you know, being able to find
a pelvic floor physiotherapist who
has training and understanding of
both pain as well as conditions
like endometriosis.
So, not all pelvic physios or
physios are made alike.
You know, some have excellent
training in, you know, antenatal,
postpartum pelvic floors.
But you're going to want to find
somebody who really understands
pain conditions and how to deal
with the pelvic floor in that way.
Because if you have somebody, for
example, that doesn't know the
condition and just starts to do
internal medical exams, it's
obviously going to increase the
pain and all of the hypertension
and sensitivity.
And that's not going to do a whole
lot of good.
And, of course, you want to have
somebody mental health-wise.
It's the chicken or the egg.
Are people experiencing mental
health distress before a condition
like endometriosis?
Or are they experiencing mental
health distress because of all the
systemic issues that something
like endometriosis is bringing
about?
And it's usually some combination
of the both, of course.
And so, having somebody that's a
mental health therapist or
practitioner involved in your team
can be really helpful,
particularly if they know pain
science, if they understand
women's health issues, and if they
can help you cope with things like
low mood, depression, anxiety, and
potentially trauma as well.
And a third person that you really
want to have on your team is
somebody like a registered
dietitian or a naturopath,
somebody who really understands,
you know, what's going on in terms
of the gastrointestinal symptoms
and food and eating.
And it may not be your typical
person to just tell you, you know,
this food is good, this food is
bad, because what we know is
there's so much disordered eating
in this community, because you're
trying to find foods that feel
safe.
And in doing that, everything just
becomes so reactive.
And so, with that, I'd love to
give, you know, a shout out to my
team, of course.
We have Dr.
Matthew Leonardi, who is our
gynecologist on our team for
Endometriosis 360.
Myself, I'm a health psychologist,
and I lead up all the mental
health on the team.
We have Emily Arthur, who's a
registered dietitian, who does
some incredible work on not just
telling you what food to eat, but
specializing in endocrinology and
food trauma.
And then our incredible pelvic
floor physiotherapist, Jill
Mueller, who does some fantastic
work in somatic therapy on trauma
in the body and pelvic floor.
And so, this, of course, you know,
we've created the ideal, but it's
a little bit different flavor than
just going out to your local
physiotherapy office and trying to
have somebody help you with
strengthening and doing Kegels.
You know, part of our discussion
today was to give our listeners
that sense that they still can be
empowered to build on things.
So, let's bring it back to
grassroots.
Someone has suspected diagnosis.
They have a long waiting list to
access a consultation in
gynecology.
Their family doctor starts them on
some medication to regulate their
menstrual periods.
What is the next logical thing to
add on to that so our listeners
feel like while they're waiting
and they may not have access to a
team like yours,
what are the next logical steps
they can add on to that?
There's so much that people can
do.
And just in knowing that
endometriosis is more than just a
medical condition,
hopefully can give some people out
there hope.
Because there's a lot that you can
optimize in terms of your body and
your environment
so that when you do start to get
in to see a gynecologist or a
specialist,
you're in a very different place
and the treatments actually might
be more effective.
And there's tons of research to
support that.
And so grassroots, you know, doing
some reading in terms of pain
science and the nervous system.
You know, there's some really
great books that are accessible,
aren't too expensive, and go
through a great amount of detail.
I love The Way Out.
I can suggest some other ones as
well.
Yeah, we'll definitely put those
in the notes, the show notes for
sure.
So some great books to learn
about, you know, pain science,
about how things like mental
health really impact our bodies
and our nervous systems,
and, you know, how pain signaling
works.
And there's a ton of free
resources online that you can
access these kinds of things in
different areas from a cognitive
behavioral perspective.
There's tons of resources online,
too, about starting to move your
body and do these kinds of
exercises
that can really help to start to
release the pelvic floor.
And so you don't necessarily have
to have this dream team and, you
know, go through a lot of the
programming and things.
You absolutely can start to put
all the pieces together because
each piece may be only 5%, 10%,
but all together, that would equal
up to 50%.
And if you can optimize your body
and your nervous system by adding
all those puzzle pieces together,
by the time or if you do get to
medical treatment, it's really
going to have such, you know, an
impact and treatment's going to be
way more effective.
And that's a common theme that
resonates with chronic pain, in my
experience, in managing patients
with irritable bowel.
The same issue is that several
contributions, each contributing
10% or 15%, can really add up.
But you need to be of the mindset
to invest in each individually,
not in expecting any of those to
hit the ball out of the park,
but together to result in some
benefit.
So I'd like to change gears a
little bit and start exploring
some of the bigger impacts of
endometriosis on the lives of
women affected.
In your experience, at what point
does endometriosis really start
deeply affecting a woman's
relationships, intimacy, and her
sense of self?
I think it always does.
And so endometriosis is often a
condition that's experienced at
the beginning of menstruation.
You know, we have a lot of youth
and teens and young adults.
And so you start to have that
relationship with your body from a
very early age,
which can be incredibly difficult
for intimacy and forming
relationships and so on,
and finding partners that might be
supportive with these kind of
issues.
So I don't think it's a matter of
when does it start.
They speak of a relational tax
that comes with a diagnosis of
endometriosis.
What do listeners gain from an
understanding of that?
There's a relational tax in the
sense that there's somewhat,
I don't even want to call it a
responsibility,
but being in a relationship with
somebody with endometriosis,
it requires some level of empathy,
understanding, and supportiveness
to know that symptoms may be
unpredictable.
There are times that functioning
and roles will change.
And so, you know, you see the
whole range of the kinds of
partners that women may have
when they have endometriosis,
everything from incredibly
supportive,
you know, good communication,
being able to talk about what
needs might be that varies,
you know, by day, by time, versus,
you know, the partner who like
really doesn't get it
and maybe very solicitous in their
support and passive-aggressive
and, you know, shutting down and
people moving away from each other
in their relationship.
And it even gets to the point
where we talk a lot about intimacy
and the kind of work that I do in
our programming.
And we talk about things, you
know, such as the factors of why
do people have sex
and why are people intimate and
there's approach reasons, of
course,
because we want to, we want to
feel closer, we want to feel good.
But there's also avoidance reasons
because we don't want to have that
fight.
We don't want to have to go
through that conversation again.
We don't want to have to say, I'm
in pain and deal with the negative
consequences.
So when you're talking about a
relational tax, you know, that's
part of, you know,
the atmosphere and the environment
that you're coping with
in terms of there's a lot of
different factors that bring
people together
that are approach-related, but
there's also a lot of
avoidance-related factors
that can bring people apart.
It's also a lot of learning that
can take place to actually
re-establish,
if you will, a new code of
intimacy that's unique to that
partnership,
which may need to be modified or
adjusted in an adaptive process,
but one that still can
holistically keep people intimate
and close and in touch with each
other.
Yeah.
And when we talk about intimacy
and sex, particularly with, you
know, endometriosis,
you know, we don't want to do
things that hurt.
So over time, if sex and
penetration and intimacy hurts,
we, our bodies shut down.
And there's that whole cycle where
we're avoidance, we're emotionally
distressed,
we shut off, you know, it changes
our pelvic floor physiology, our
arousal and desire.
And it makes a lot of sense that
we don't want to engage in
intimacy for future occasions.
And so, you know, we really start
to understand that there's so many
factors that impact arousal,
desire and intimacy.
And so where we once maybe thought
of intimacy in terms of that
linear model,
we now understand it to be much
more circular and fluid with a
variety of factors
factors that impact arousal and
desire at all different stages.
And sometimes we start at one
place and we end off and that's
okay.
And I work with a lot of couples
in terms of understanding their
own individual factors
to be able to feel safe in their
bodies and feel safe in intimacy
once again with their partners
and with themselves.
I mean, that's huge.
You mentioned working with couples
because even the presence of your
partner
at a medical appointment has
actually been shown to maybe
improve listening skills.
I'm not sure what it is, but
actually your chances of being
referred for next level
consultation
where a diagnosis of endometriosis
is actually made
has been shown to be associated
with the presence of your partner
in the room,
which I think is fascinating.
That is.
For many women, though, with
endometriosis, physical intimacy
can just become so painful.
I mean, what starts happening to
closeness and connection when
intimacy becomes associated
with only pain or fear of pain?
It starts to degrade.
So where it might just start with
intimacy, it's obviously going to
continue on to different
levels of the relationship,
because if you feel vulnerable and
violated and dismissed in your
body during intimate moments, then
it's hard to just snap out of it
and go back to your
regular everyday relationship,
because, you know, you are a whole
part of your body.
It's part of your identity.
People speak of the loneliness
associated with endometriosis, but
there's also reference
to double loneliness, because
without that communication
element, the partner can also feel
very much alone.
How do you counsel couples?
What's your strategy to get them
on the same page?
It's really tricky.
And so I think that there's so
much that can be done in terms of
education.
And so I don't, you know, fully do
couples counseling, but of course,
I will counsel couples
who, you know, come forward with
these kind of issues, because I
think there's so much that
can be done in trying to help the
partner understand what is
endometriosis, what happens in
their
body, what's happening in terms of
their physiology and all of the
science, because the partner
can't live inside, you know, that
woman's body and understand the
kind of symptoms that are
happening.
And sometimes just understanding
what that science is can be so
helpful in terms of it's
not just this.
it affects so many different
things.
And so just having that education
there as a first part, and then,
you know, starting
to understand and help the couples
understand their dynamics in terms
of what brings them
together and when they start to
retreat.
And so maybe understanding, you
know, one person ends up
retreating with these kind of
dynamics
and these kind of factors, but
essentially, you want to start to
get them moving together, because
more
often than not, they both have the
same goals, they both want to feel
closer, they both want to improve
the
relationship, they both want to
have communication, they both
don't want to be
hurt.
But you can get so easily stuck
over time in those dynamics and
that vicious cycle.
And so helping couples cut that
cycle to be able to come closer
together with a better
understanding
can be so helpful.
I mean, having your partner just
not get it is a huge obstacle.
And in my practice, patients with
Crohn's disease, I've had, I
recall a time of women in tears
saying
that just they don't get it.
And it's a huge call-out for the
educational component of learning
to live together
when one partner has a chronic
condition that has the potential
to reshape everyday life.
Absolutely.
So for women living with
endometriosis, talk to me a little
bit, what does fertility
uncertainty
do to the way they think about
their body, their future, and the
possibility of pregnancy?
It's such a huge factor.
And so a lot of the younger women
that I've worked with, even before
even having a partner
or wanting to have children,
there's this underlying fear and
anticipation that they may not be
able
to, or it might be incredibly
difficult and stressful.
And so knowing that even before
entering into a relationship, and
then also at the beginning
stages of the relationship,
knowing that that is a factor and,
you know, starting to tackle all
those
logistics together.
So we know that if this is
something, you know, starting to
understand your fertility and
going
to clinics is something that you
definitely want to do sooner
rather than later.
And then for a lot of the women I
work with as well, maybe they've
struggled with infertility
for 10, 20 plus years.
Maybe they were able to have a
child, maybe they weren't, but
it's processing that loss and
that complex grief that they've
experienced and not being able to
understand what's happening
in their body and maybe being
dismissed from a fertility
perspective when endo might have
been
there all along and not
investigated or treated.
That is a huge grief and burden to
carry if there is no room to talk
about it, to express it.
So communication is just so
important.
And in so many chronic conditions,
that's such a huge step.
Day to day, women live with the
reality of endometriosis.
And for women with that condition,
it's not a shared burden.
It's something that they're
carrying largely alone oftentimes.
How does that isolation actually
shape the experience of the
illness?
It's a big one in the sense that
by the time a lot of women will
have reached out to somebody
like me being a psychologist,
they've carried that burden on
their own for so, so many years.
And it's tricky because sometimes
they might reach out or find
individuals on support groups
and corners of the internet.
And while this might be helpful
for forming some kind of a
community, most people don't go
online because they're having a
great day and they want to share
their experiences.
Most people on the internet are
there because they need to vent
and they're having a really
hard time struggling.
So a lot of time within
communities of endometriosis, not
only are you feeling alone, but
when you
do try to form a community and
join others potentially online,
it's not a really safe space and
it's
quite negative.
And so it's that bouncing between,
you know, how do I connect with
others in a really positive
way so they feel like other people
understand me and my symptoms and
what's going on in my
life versus getting dragged down
by some of the toxicity and the
online support groups.
So I can appreciate that there are
places where we need to vent.
The hope would be that there's
some positive experiential
communities where people are on
boarded for the reason of growing
together.
And in this day and age, we might
need to rely on those resources as
so many point out in different
forms of caregiving.
For example, how can we find those
more constructive communities or
ones that help individuals build
while they're waiting for
consults, while they're waiting
for next level care once they have
a
diagnosis?
You can definitely start by
reaching out to some of the bigger
organizations.
So, you know, in Canada, we have
the Endometriosis Network of
Canada and, you know, there's
larger
overall support networks and
groups associated.
You might have local chapters and
groups that, you know, connect and
have all sorts of events.
I think it's tricky in the sense
that, you know, as part of
Endometriosis 360, we've also
created a community as well.
But even within that, it's so
tricky because people just
desperately need that space to
vent.
So even in the best of
communities, there's always going
to be some moments and pieces of
negativity.
And so it's almost as if, I don't
know if there's one space that's
totally safe and devoid of all
these kinds of experiences.
Endometriosis, you just have to
know when to tune out and notice
when it's time to check
out in Lee.
Yeah.
I mean, I think expecting one
space to be the ultimate space
probably would be very realistic
either.
It kind of takes the humanity out
of it all.
What do women with endometriosis
really get good at hiding or
downplaying just to get through
their days?
There's a huge amount of masking.
Tell me more.
Yeah.
So masking in the sense that
pretending you're just okay.
So putting on that smile,
functioning at work, breathing
through the pain, you know, just
ignoring what's happening in your
body, often to the point where you
go, go, go, push, push,
push, and then you just kind of
crash and burn.
And that cycle, you go, go, go,
push, push, push, and then crash
and burn.
And so it's that cycle of masking
and overdoing that a lot of women
with endometriosis struggle
with because relationships and
families and workplaces and our
overall society and environment,
there is no space to take a day.
There are no resources.
We don't live in villages anymore.
And so there often isn't that
opportunity to take that break, do
the self-care, rest, do
the things that you need to do to
regulate, to come back to the
place that you can function
at some level of your normal self.
And so because that doesn't exist
in our society, there's just so
much masking for women to continue
to function in all the roles that
you need to carry.
And it's heavy.
Endometriosis really doesn't wait
for your day off to come around.
How does it get in the way of
work, parenting, and ordinary
life?
I would say it's not that it
doesn't wait for a day off.
It actually waits even more for a
day off in the sense that what can
be such a struggle
is you spend all of your energy
and efforts and self-regulation
doing the things that you
have to do, like work and making
money and, you know, doing all the
things that are absolutely
a necessity to survive and live in
this world.
And then it creates a tax and a
toll that maybe you get home at
the end of the day with
your partner and your kids and
you've got nothing left.
And you're lashing out.
You can't function.
You can barely hold yourself
together.
And maybe that's what a weekend
looks like.
So maybe you held it together all
week and by weekend you just have
nothing and you don't
even get to be able to enjoy your
family or leisure or doing things,
you know, together
because you've just masked and
held it all together throughout
the week or during the day.
Throw on top of that sandwich
generation caregivers who have
aging parents they need to look
after
as well.
And it almost seems like a perfect
storm.
It is the storm.
Yeah.
I'd like to take a break and we
have something for you we'd love
to hear your thoughts about.
We'd like to play a clip that
recently was out on social media
that's particularly valuable
to this discussion and look
forward to hearing what you think.
Period pain can be as bad as the
pain women experience during the
second stage of labor
or even a heart attack.
And yet we are told to suck it up.
Across the U.S., millions of women
have to choose between working
through unbearable pain,
losing income they can't afford to
go without, or tapping into a very
limited number of sick
days that they won't have if they
have the flu or a doctor's
appointment.
I've introduced legislation to
give workers up to 12 days of paid
leave a year for reproductive
health.
This would cover period pain, yes,
but also menopause symptoms, IVF,
miscarriages, endometriosis,
flare-ups, and more.
So, Laura, we'd love to get your
feedback on that clip and your
thoughts about how innovative
it is.
My thoughts are that I can't
believe we're just doing this in
2026.
In a way, this doesn't feel
innovative at all.
It just feels human and like basic
human ethics and rights.
If you are in so much pain because
of what your biology is doing to
you, to the equivalent of
second-stage labor, and society is
expecting you to work without
consequences, something
feels very wrong.
And it feels equivalent to the
fact that women continue to
experience symptoms for decades
within the medical system without
being heard.
And so, yes, this is a really
innovative concept, but it feels
like it should have been passed
decades
ago.
Well put.
I couldn't agree more.
When women talk about an
endometriosis flare-up, what's
actually happening in the body,
and
what can they do to get through
it?
It really varies what's
physiologically happening in the
body.
And sometimes it really is just
biological, but there's so much
you can actually do to work
with a flare-up, to help mitigate
it, to decrease, you know, all of
the dysfunction and the pain
and the suffering that comes from
it.
And so, it can be really helpful.
One of the biggest strategies that
I talk with patients when I work
with them is just the
simple act of noticing.
So, noticing what brings on
flare-ups for you, you know, and
we don't want you to have that
like hyper-vigilant with logging
and tracking every single thing,
but noticing maybe the day
before, or are there particular
events, or people, or activities,
or foods, or anything that might
lead to an increase of a flare-up.
And sometimes there are, and
sometimes there are not.
There is the unpredictability of
the condition, because if you can
notice those things, you can
mitigate and work with them.
Sometimes we can't, and flare-ups
are just going to happen, and
that's really when you start to
build
your toolbox.
So, when you do have a flare-up,
what's going to help for you?
For some people, it's lying down.
For some people, it might be heat.
It might be taking certain
medications.
It might be certain kinds of
movements.
It might be distraction.
It might be different kinds of
practices that you do.
And so, noticing and trying
different things out, and seeing
what helps, and having that
toolbox for when these kind of
flare-ups do happen, you can work
with it.
And part of the importance of
working with flare-ups is the
psychology of it.
Because when you understand the
neurobiology and all of the pain
systems, when we feel pain,
and then we get in our heads about
how scary and catastrophic and how
dangerous and how bad
it was last time, and it's going
to topple me over, and I'm not
going to be able to function,
and we start to build up that
anticipation in the pain, that, of
course, is not going to help.
And so, working with your own
psychology and emotions and
thoughts, because the thoughts
have
so much power over the body and
how it reacts to the sensations
that people are experiencing.
Clearly not a one-size-fits-all,
but really a size that's shaped by
one's own engagement
and trying to figure things out
and turning to those resources
where they can.
And when you mentioned medications
a couple of times, I think it's an
important plug to put
in here, narcotics are really not
an answer in this case, are they?
No, and we know from enough
research that quite often with
visceral pain conditions,
narcotics don't necessarily do
anything in terms of decreasing
your pain levels and intensity.
What they do is they make you
dissociate, check out, and feel
really drowsy, which sometimes
can help because you're not
conscious to experience the pain,
but it doesn't help the pain.
And so, if rest and, you know,
disconnecting from what's
happening in your body is what
you need, there's definitely other
practices that you can use that
aren't medications, habit
forming, and like narcotics.
And certain experts advocate for
brief treatments with typical
anti-inflammatories.
Do a lot of patients in your
practice take advantage of using
those for a couple of days just
to take the edge off pain-wise,
assuming that they're safe to use
in that particular individual
because certain people can't?
Like NSAIDs?
Yes.
Yeah, absolutely.
And the unique qualities of
endometriosis is they often follow
the cycle, right, in the
different levels of hormones.
So, it could be nice in the sense
that it might be very predictable
where you might only use
NSAIDs or some kinds of
medications for three, four days
of your cycle.
You know when they are, you know
how to take them.
And so, it doesn't feel like
you're constantly taking
medication and getting the
negative side
effects.
And so, because of that cyclical
nature, a lot of patients do and
have some really good effects
with it too.
So, I mean, I've heard over the
years of individuals using
anti-inflammatories to help
regulate menstrual
cramps.
Does that mean they have
endometriosis and they don't know
it?
Not necessarily.
You know, I think you're probably
a better expert.
I mean, the actual physiology of
how anti-inflammatories work in
the body.
Of course, anti-inflammatory
medications, they decrease the
amount of pain that somebody
experiences.
But it is normal to some extent to
experience some level of
discomfort associated with cramps.
And so, does that mean that it's
endometriosis?
Not necessarily.
It really is such a subjective
experience in terms of what that
pain is to the person and
how much is too much.
And so, if this is a question,
that's a great example of to go
speak to a medical professional,
potentially get some testing done.
But, you know, just because an
NSAID works doesn't mean that you
have endometriosis.
It could just mean that you're
experiencing pain and it's helping
to do what it does in the
body.
So, for women listening who don't
have access to a full care team,
let's give them a bit
of a game plan.
Where do they start and what's the
best evidence?
The evidence is at looking at the
body holistically.
So, you might want to start by
checking out some of the
organizations in terms of
endometriosis
and some of the recommendations
and resource pages that they have
on their website.
Like we spoke about, maybe it's
looking into some mental health
material.
Maybe it's looking into some body
and somatic practice material.
Maybe it's looking at, you know,
some food and dietetics and, you
know, how your eating patterns
might be influencing things.
So, I think if you were to start,
you know, with a plan for
yourself, it might even be just
noticing.
So, taking a couple days or a week
or so to jot down symptoms and
practices and thoughts and
emotions and movements and what's
happening so you can get a better
sense of what are some
areas in particular that might be
the most helpful for you and then
looking to some of the bigger
endometriosis related
organizations to start getting
some access to resources and
different
things that they might have.
So, if a woman is living with
endometriosis and they're having
to plan for the next flare
before it hits, what absolutely
needs to be in place or how many
recurrent cycles does it
take to get a sense of what they
feel, what they see, what it's
like being present with the
condition?
It varies, right?
For one woman, it might be the aha
moment of understanding their
nervous system and their
pain responses and really getting
the biology and as soon as they
get that, you know, next
cycle, they know how to work with
it more intuitively.
And for some women, it's going to
be a lot of trial and error and,
you know, there's two
steps forward, one step back.
Progress isn't always linear, of
course, and so I think it really
does vary and there
has to be some level of grace and
self-compassion that you have for
your body.
That's huge.
It's huge and we can't buy
biology, you know what I mean?
There's a lot that we can do to
optimize, but, you know, we still
have tissue and hormones
and, you know, all these
biological factors that are real
and make endometriosis, you know,
a significant systemic condition.
And so while we can work with lots
of these different kinds of
therapies, we also have
to acknowledge that there is the
medicine and the medical piece as
well.
That medicine and medical piece
can have, you know, such a strong
impact and, as you said,
that sort of compassion towards
that reality.
But I think you need to also be
compassionate towards yourself and
the efforts that you're
making.
And as you said, one size doesn't
fit all.
And there may be a step forward, a
couple back, two steps forward,
one back, maybe then
no progress one time, then a step
forward, then a step back.
Um, be compassionate to yourselves
and it's probably as you're trying
to navigate different
hurdles, not just the
endometriosis story, but I think
this applies to a lot of things.
Uh, but show yourself that
self-compassion because you're at
least you're showing up and you're
trying.
I'm so hopeful because over the
past few years, there really has
been this influx and
vortex of positive change and
movement in terms of the science,
the research, what's happening
our society, the medical systems,
how we're treating and noticing
endometriosis, there's
a buzz.
And so it gives me so much hope
that things are finally being
heard and listened to and
women are going to finally get all
the research and the practices and
the healthcare that they
have deserved for so, so many
years and decades.
What a perfect point in our
conversation today with hope and a
vision for the future.
Laura, I wanted to thank you for
joining us.
It's been wonderful to share the
discussion for you, to share this
discussion with you and,
um, to give our listeners a chance
who are spending days suffering on
days trying to get through,
uh, and hopefully bringing them,
uh, next level of awareness
that'll, uh, make change possible.
It's great to be here.
Thanks for having me on such an
important topic.
That wraps up this week's episode
of the Caregivers Podcast.
I'm your host, Dr.
Mark Ropolesky.
We'll see you next week.
Dr.
Katz, thank you for helping us
speak to the day-to-day reality of
endometriosis with
honesty and care.
I think one of the clearest
reminders from this conversation
is that endometriosis is not just
pain.
It's something women are often
forced to carry largely alone
while still expected to work,
function, and keep life moving as
though nothing is wrong.
For the women listening who are
living with this, I hope this
conversation helped you feel seen,
believed, and a little less alone.
And if this episode meant
something to you, please take a
moment, rate the Caregivers
Podcast on Apple
Podcasts, Spotify, YouTube, or
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It really helps other people find
the show.
Before we wrap up, I wanted to
remind you of something important.
The conversations you hear on this
podcast are here to inform, to
support, to spark reflection.
We're not a substitute for
professional medical advice, care,
therapy, or crisis services.
Listening to this podcast does not
create a doctor-patient or
caregiver-client relationship
between us.
If you're facing a medical
concern, health challenge, a
mental health challenge, or a
caregiving situation that needs
guidance, I encourage you to reach
out to a qualified
professional who knows your story.
If you're ever in crisis, please
don't wait.
Call your local emergency number
or recognize crisis hotline right
away.
You deserve real-time help and
support.
The views you hear on this show,
whether from me or my guests, are
our own.
They don't necessarily reflect any
organizations we work with, are
part of, or have worked with,
or been part of in the past.
This podcast is an independent
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It's not tied to any hospital,
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Thank you for being here, for
listening, and most of all, for
taking the time to care for
yourself while you continue to
care for others.
I look forward to hearing from
you.