October 14, 2013 • 30 mins
Why does it take women, on average, more than nine years to be accurately diagnosed for endometriosis, one of the most common medical disorders affecting women? Cristen and Caroline explore what endometriosis is, what causes it and why the uncurable condition is still so misunderstood by doctors today.
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Speaker 1 (00:03):
Welcome to stuff Mom never told you From House to
works Nott Com. Hello and welcome to the podcast. I'm
Caroline and I'm Kristen, And today we are talking about
a health issue that affects a lot of women, millions
of women worldwide, but it was very misunderstood and is
(00:26):
another one of those health issues that a lot of
people a long time ago just assumed was an angry,
bloating uterus. Yeah, we're going to talk about endometriosis. And
back in the day, women who had chronic and severe
pelvic pain that we would these days associate more with
endometriosis were more likely diagnosed as having something called a
(00:50):
suffocating womb or hysteria as we've talked about in past podcast,
or they were just deemed crazy, Yes, your pain makes
you crazy, like yeah, people assume they were possessed on
all sorts of crazy stuff. But really, the crazy thing
is that this disease that affects women is still not understood.
(01:13):
There's still questions as to how and why you get
it and how you go about treating it. So, speaking
of the history of this condition, um Stanford gynecologist Cameron
nez hot Uh led a review of data going back
like four thousand years and found that women suffering from
(01:34):
endometriosis underwent torturous treatments including leeches and blood letting, hot douches,
being hung upside down, and even accused of demonic possession
and ended up getting killed. And going back and looking
at these primary sources, Naza notes that Plato, for instance,
mentions womb suffocation which was most likely endometriosis. And then
(01:57):
fastwarding way forward in history, we have Freud attributing endometriosis
two symptoms of hysteria. And even though it was first
identified around three years ago, it wasn't until the early
twentieth century with the development of anesthesia that there were
more intensive treatments available because you could actually do things
(02:20):
like take a biopsy. Um. But even since then, as
we'll talk about, endometriosis is difficult to get a diagnosis
for in a timely fashion and difficult to treat. Yeah,
I mean still surgery and biopsies are probably the best
(02:42):
way to diagnose endometriosis. Although you can get a minimally
invasive surgery, it's not like a massive surgery to detect endometriosis. UM.
But let's look at some some facts and stats um,
something that is heartbreaking to read about because as endometrios
is so painful, most women suffer endometrial pain for up
(03:05):
to ten years before diagnosis, and that that equates to
about five years spent in pain before they even reported
to anyone or go to the doctor about it, and
then another five years for a proper diagnosis. Because despite
the fact that endometrius is so common, um, there are many,
many stories still of women who go to doctor after
(03:25):
doctor after doctor and they're they're diagnosed with things like
irritable bow uh, even things ranging all the way up
to cervical cancer, pretty much anything but endometrios is. And
as you can imagine, because endometriosis affects so many women,
it does amount up to a massive medical cost um.
(03:46):
And this is coming from the Endometriosis Foundation of America,
which estimates that it racks up about twenty two billion
in related costs annually. And you mentioned at the top
of the podcast s, Carolina, it affects millions of women
and girls worldwide. Endometriosis as one of the most common
(04:06):
health problems in women, affects one hundred and seventies six
women and girls in the United States alone, we're talking
about around eight point five million. And even though twenty
seven is the average age of diagnosis, that is probably
not the age of onset for those painful symptoms. Right. Yeah,
(04:27):
it is considered you know, like a not an older women.
I don't mean like older women. I just mean it's
considered like a mature woman's condition. But yeah, like like
Kristen just said, it probably is something that young women
live with for a long time because they just think, well,
this is normal to have really painful periods or I'm
too embarrassed to talk about why my body hurts. Um,
(04:48):
but it can be serious. Uh. Endometriosis is one of
the top three causes of female infertility, and while it
is one of the most treatable causes of infertility, it
is also one of the least treated cases. So let's
talk about what endometriosis actually is. I have a feeling
that for many of the women listening, and probably a
(05:09):
lot of the men too, you've heard about endometriosis. You've
heard that word before, but myself included, I wasn't exactly
sure what it is inside the body. It is a
painful disorder in which the tissue that normally lines the
inside of your uterus, which is called the endometrium, grows
outside your uterus, and it most commonly involves your ovaries, bowel,
(05:33):
or the tissues aligning your pelvis, but it can also
spread beyond your pelvic region to the lungs, brain, and skin.
But those conditions are a lot rarer right, And the
extreme pain comes from the fact that this endometrial tissue,
this displaced tissue, despite where it is, you know, not
where it's supposed to be, it still acts like it
(05:54):
normally would, so that means that it thickens, breaks down,
and bleeds with each menstrual cycle. However, because the displaced
tissue has no way to exit your body, as it
does during your period, it becomes trapped. And when the
endometriosis involves your ovaries, cysts called endometriom as can form,
(06:16):
and then that leads even worse. It keeps getting worse
do the surrounding tissue becoming irritated and eventually developing scar
tissue and adhesions, which are abnormal tissues that bind organs
together and so not surprisingly, endometriosis can cause pain, sometimes severe,
and especially during your period. And I know personally some
(06:39):
women who have endometriosis, and the pain is no joke.
It is excruciating for a lot of women. And like
you mentioned, Caroline, fertility problems may also develop, but there
are some effective treatments that are available, although there is
no cure for endometriosis. But let's back up for a
minute and talk about what the symptoms of endometriosis are. Yeah.
(07:05):
First of all, I mean, obviously you're going, as we said,
going to have a lot of pain, but the pain
doesn't necessarily equal the severity of the condition itself. It's
not like if you have terrible endometrios as you're going
to have terrible pain. You could have terrible endometriosis and
have mild pain or vice versa. This is really something
that you know, you do need to go to your
doctor about, obviously, because doctors Kristen and Caroline cannot give
(07:26):
the official word on anything. So one of the things
that you experience as a symptom of endometriosis is painful
periods otherwise known as dysmin area basically horrific cramps. Oh yeah, yeah,
And this pelvic pain and cramping might begin before and
extend several days into your period, and the pain can
radiate to your lower back and to the abdomen. And
(07:50):
most women who have endometriosis also have dysmin area, but
it's not it doesn't work both ways. Most women with
dysmin area in general do not have endometrios is, So
just because you have one doesn't necessarily mean that you'll
have the other. And another unpleasant symptom of endometriosis is
painful intercourse. UM. This is a common symptom and another
(08:13):
reason why it's tricky to diagnose sometimes because this might
be an issue that women don't want to talk about because,
as we talked about in our episode on volvedenia for instance,
or the hallmark is extremely painful intercourse. Um. There are
there's lots of shame that goes along with that. Not
(08:33):
only are women sometimes uncomfortable just talking about their vaginas
and sex and the things that go on, but it
can cause problems with partners who might not be too
happy about that pain or think that they're faking it um.
And I'm talking obviously about worst case scenario, but it's
certainly a contributor to the diagnosis gap that we see
(08:55):
with this condition and pain also is known to occur
with bull movement or urination, although you are more likely
to experience those symptoms during your period. And speaking of periods,
you are more likely to have excessive bleeding or bleeding
between periods. And we've already talked about fertility a couple
of times, because infertility can be a symptom of endometriosis,
(09:21):
probably two for women who have waited longer to go
to the doctor or have had more trouble seeking a diagnosis. Um.
And on top of all of these pleasant things, so
we can just toss in some more symptoms including fatigue, diarrhea, constipation, bloating,
and nausea, especially during your period. And if these symptoms
(09:44):
sound like lots of different other things to you, uh,
you're not mislead at all. A lot of times, uh,
women who are coming with these symptoms often get diagnosed
for the wrong thing, like pelvic inflammatory disease of varian
cyst or like you mentioned caroline ib us irritable bowel syndrome. Well,
so we also mentioned earlier that you know, things are
(10:06):
still foggy about why women get into metriosis. There are
several contributing factors. One of those the one of the
main culprits that people talk about is retrograde menstruation, and
in this condition, menstrual blood containing indometrial cells flows back
through the fallopian tubes and into the pelvic cavity instead
(10:26):
of out of the body. These display cells stick to
the pelvic walls and surfaces of pelvic organs, where they
grow and continue to thicken and bleed over the course
of each menstrual cycle. And it's this is actually thought
to happen in a lot of women, but women with
endometriosis or might not actually be able to clear the
extra fluid as well, and it can also result from
(10:48):
issues with embryonic cell growth, specifically in the cells lining
the abdominal and pelvic cavities which come from embryonic cells,
because when one or more small areas of the nominal
lining turned into endometrial tissue, endometriosis can develop. And also
for women who might have undergone his directomys or had
(11:09):
C sections, endometrial cells can attach to surgical incisions, and
there's also the blood vessels and tissue fluid that can
transport endometrial cells to other parts of the body. These
endometrial cells, by the way, Caroline. They are rebellious. It's
like I'm gonna go where I want to go. I know,
(11:31):
they're like horrible teenagers. They just want to get out
of the uterus. Let me out of the the uterus.
Help and mis cell. We're not trying to diminish the
pain of endometriosis, but really though, there's so many mechanisms
for these cells who get into other parts of the body.
Endometriosis is also linked to immune system disorders, and it's
(11:54):
possible that a problem with the immune system may make
the body more unable to recognize and destroy a endometrial
tissue that's gone rogue basically um. And there's also an
issue of the possibility of small amounts of tissue from
when you were nothing but an embryo might later become endometriosis.
(12:16):
So if you're experiencing these symptoms and you go to
the doctor, endometriosis is commonly diagnosed with a pelvic exam,
in which the doctor will feel for large cysts or
scars behind your uterus um. You might also get an
ultrasound to check for ovarian cysts or something called a
lapru scopy, which is when I believe they make an
(12:37):
incision in your belly button. Yeah, minimally invasive. It's one's
incisions in your belly button and one is right above
your pubic area, and they just look around and they
appear inside. But you know, I just I do want
to pause as we're talking about all this because I
know that every time we do a health episode, I'm like,
I have it. I have it. I've got it. I
have it. Um. But I calmed myself down by reading
(13:00):
about the diagnosis and having pelvic exams, in which your doctor,
you know, feels for abnormalities than any sists or anything.
And I was like, Okay, you get a pelvic exam
and a paps mirror every single year. She has never
felt cysts. So you're probably just bloated from you know,
eating too much Mexican food or something. I don't know.
(13:21):
So this podcast is your own Web and D symptom
checker in which you generally get cancer like every other month.
Yeah yeah, yeah, But but so far you're doing great,
Kristen at helping me figure out that I don't have
some of these things. Oh good. And you should also
listen to the advice we always give our listens, which
is talk to your doctor or nurse practitioner, right, But
(13:43):
being aware of these symptoms, especially for something like endometriosis
that affects so many women and yet it's so hard
to diagnose. I think it's really important though, for women
not to be alarmist, to say, run to your doctor
as soon as possible. But maybe it might set off
some lightbulbs for some girls and women who have been
(14:04):
experiencing this kind of pain and discomfort and don't know
what's going on, and maybe you know, we're doing our
part to help close that gap somewhat because it's it's
it is very astounding to me that medical technology and
research has not caught up to this problem. I don't
think it has in any at any rate. Well, they'll
(14:25):
never catch up to a floating uterus, that's true. Um.
So we're talking about diagnosis, and once endometriosis is diagnosed,
the treatment for it is going to depend on the
severity and it might include anything from pain medication to
hormone therapy. Um. I know women with endometriosis, for instance,
(14:46):
who are on hormonal birth control to control the growth
of the endometrial tissue. And then there's also surgery, which
might include laparoscopy or hysterectomy, right, and part of the
the hormonal birth control treatment makes me think of this girl,
and we should do an episode on treating things with
(15:07):
birth control, you know, not you know, not just taking
birth control for birth control. But a girl I went
to high school with had beyond killer cramps every month.
I mean she was in horrific pain, to the point
where she had to stay home and she actually her
her parents very reluctantly put her on birth control just
to control the pain. Um. But so what that does
(15:28):
when you take hormonal birth control is it decreases the
amount of menstrual flow and prevents the overgrowth of tissue
that lines the uterus um. Women can also take ganada,
trope and releasing hormone agonists and antagonists which lower estrogen
levels and stop the menstrul cycle. You can also use
progestins like depa, Privera, and a medication called danasoll which
(15:50):
is an androgen used to treat indometrioss and other similar conditions. Yeah,
and estrogen is often pinpointed when we look into what
can you prevent this? And unfortunately the answer is no,
There's no way to totally dodge endometriosis, but often doctors
might say that lowering estrogen levels can help, and some
(16:13):
ways non medicated that you can do that is through exercise,
reducing body fat, avoiding alcohol and caffeine. Sorry, I can't
give up my morning coffee. Um, but speaking of estrogen though,
I almost hate to mention this study that came out,
but it got a lot of pressed. It was weird,
(16:34):
it was very strange and um some people listeners might
have seen it when it came out in because it
concluded that among a group of three hundred women, those
with severe endometriosis were rated as more attractive than those
with mild endometriosis, possibly because they have higher levels of estrogen.
(16:59):
Now you can imagine how a finding like that would
just be taken and spun out into a million different
kinds of clickable headlines, um saying, hey, ladies, do you
have endometrios as well? Here's what upside, people think you're
really hot. Yeah. And the women in the study were
rated by two male doctors and two female doctors, and
(17:21):
the women who had severe endometrios is tended to have
smaller waists and larger breasts. Yeah, so I mean take
that finding for what it's worth. I tried to find
the actual study and kind of wrap my brain around
why these four doctors were rating this group of three
(17:41):
hundred women because the outcome from it. Yeah, they made
the point about, oh, well estrogen. You know, obviously these
women have more hourglass shapes. This is probably having to
do with estrogen. There's a genetic tie in this, UM
but the presentation of the findings were Yeah, making being
right and and making it about a woman's attractiveness is
(18:04):
very weird and icky and strange because it could have
been presented as like, okay, well these women do have
this estrogen and it contributes to having a more hour
glass shape. You don't have to go into well we
rate it or hot or not? You know, Yeah, it
came across very much hot or not. So I don't
know if there are any academics listening who are familiar
(18:25):
with the study who can offer some insight into its value.
Please email us. Mom said Discovery dot com because it
was one of those that I just saw in my
news feed when it first came out, and I was
a bit taken aback, wondering why why um so Moving
(18:48):
along from that, what is it like living with indometriosis. Unfortunately,
the answer is a lot of times it's very painful. Yeah,
there um a lot of the stuff. Titles on this
condition include phrases like a life shaped by pain, agony,
I never know how I'll feel. I mean that should
(19:09):
be another indication for women out there who were like,
oh my god, do I have this? And clearly the
physical toll that it takes on on women is can
be pretty severe as well as the mental toll. Um
and relationships or something that come up in talking about
endometriosis as well, because it can be taxing for the
(19:31):
partner who's there. There was um a study on how
male partners dealt with being with a woman who has endometriosis,
and it concluded that low mood, anxiety, and powerlessness contributed
to a grief like process much like that experienced by
their female partners, with all some also reporting acceptance and
(19:53):
relationship growth out of that. Um So, just a different
perspective on how ending atriosis is often about a lot
more for the women experience that experiencing it beyond just
killer cramps. And speaking of research, there is uh there
is something that's come up in more recent years is
(20:15):
readjusting our perception of endometriosis is something that really affects
women in their thirties and forties, because I did not
realize this about endometriosis, but it used to be referred
to up until not that long ago as the career
woman's disease because it's often diagnosed in women in their
(20:38):
thirties who don't have kids. But obviously that's not the
only reason why it happens, and the reason why to
women often get those diagnoses in their thirties. I mean,
the average age of diagnosis, as we mentioned at the
top of the podcast, is but that follows years of symptoms, right,
(21:00):
because forty seven percent of women in one study reported
having to see a doctor five times or more before
they got a definitive diagnosis. And then you also have
to think about, Okay, your thirties. You're in your thirties,
you don't have kids. Maybe some of these women also
have been on birth control or been on depot prevyor
or something, and so they don't even realize until maybe
they get older and they want to have kids, or
(21:21):
they just want to switch their birth control or something.
Maybe that's when they start experiencing intense pain because they've
gone off of it. Yeah. And I saw a story
from two thousand twelve over at w b R in
Boston about a girl I think she was fourteen or
fifteen when endometrial symptoms first SEVENCE. She was at a
(21:43):
Taylor Swift concert actually and doubled over in these sharp
pains that started happening. And following that, she and her
parents went through this medical saga of trying to get
some kind of diagnosis because no thing, none of the
treatments that were being given to her, because no one
(22:04):
was thinking, oh, indometriosis. None of the treatments were working.
And I mean, she's very fortunate because she comes from
a wealthy family and they were able to pay thousands
and thousands of dollars. And her mother is saying this
in the story, um, pay so much money for finding
a diagnosis. And then finally she got hooked up with
(22:25):
a specialist who said, oh, this is indometriosis. Um. And
so it's so important that maybe we start to, you know,
focus our attention away from oh, well, this is something
that happens to midle aged women who don't have kids. No, yeah, yeah,
I mean it's it is mind boggling to think that
this poor girl had to go to so many doctors
when it's like, hello, well, and how many poor girls
(22:48):
you know, is it's going on with who are are
experiencing these kinds of symptoms and now and just to
think about how many times she and probably so many
other young girls have just there like here, here's some
pain meds. Just take some pain meds. Well, and the
statuh see women seeing a doctor five times or more
(23:09):
before getting a diagnosis reminds me of similar statistics that
come up when you look at polycystic ovarian syndrome volvidenia,
a lot of these conditions that involve the female pelvis. Well, yeah,
and how even today and we've talked about this before,
but like even today we have our own version of
telling women they have a hysterical uterus, you know, like
(23:32):
our version of that today is the doctor just saying, well, oh,
it's like some kind of phantom pain, like maybe you
used to have something that hurt and that was wrong,
but now you're just like your body is still firing
pain neuron or just having doctors who will simply switch
up your birth control right, just keep you birth control
hopping around. I know personally women that's happened to where
(23:53):
they go in with a problem and the doctor just
wants to change the birth control and that's not actually
the problem. So um, hopefully, I think that one good
step is educating ourselves first, so we know questions to
ask and symptoms to look for. I'm not saying going
the web md symptom checker alarmist route and diagnosing ourselves
(24:14):
with cancer. Caroline, I know, I know, I'm I've gotten better.
It's just now it's like, oh, we're researching a health
condition for the podcast. Oh well sure, yeah. I mean,
these kinds of things can definitely raise our eyebrows, but
you know, we need to be aware of what can
happen to our bodies. And and it's good for us,
(24:35):
you and I to read this stuff and for our
listeners to hear us talking about it because it can
put a lot of people at ease and educate them
about Okay, you probably don't have this, but you might.
And that's why it's important to go to the doctor
and know what to look for, and like you said, Noah,
to ask and hopefully educate guys who are still listening
(24:55):
to this podcast all about endometrial tissue gold star to you,
because I mean that's going to make life easier as
well for women and girls who are experiencing this, for
everybody to have a better idea of what exactly is
going on inside the body. So, now, I guess let's
(25:15):
throw out a call. I want to hear from listeners
who who have the condition, who have dealt with it.
Have you had a stereotypically frustrating medical experience trying to
find a diagnosis and a treatment, and how do you
manage your symptoms? I mean, obviously for some people they're
more severe than others UM, but we want to be
able to share with other listeners techniques that maybe you
(25:38):
found helpful for managing UM endometrial pain and discomfort. So
send us your letters. Mom Stuff discovery dot com is
where you can send them. You can also message us
on Facebook or tweet us at mom Stuff Podcasts. And
we have a couple of letters to share with you.
Right after a quick break and now back to our letters,
(26:02):
All right, Well, I have a letter here from Katie
Beth and she volunteers in women's prisons in her state
for a program called Storylink, and she wanted to write
in and give her her view on some things. After
our women's prison episode, she says, the visiting situation was
not something you mentioned on your podcast. Small active children
(26:25):
can easily get in trouble in the visiting room. Guards
are already on edge and maybe may put pressure on
moms to control their children, not an easy task if
you haven't seen them on a regular basis. Something else
you didn't mention is that communities with men's prisons will
often see a wife or girlfriend move into town to
be close to an offender during incarceration. It's fairly common
(26:45):
for a family to follow a male offender. This does
not happen very often for women, and it's uncommon for
a primary caregiver to suddenly go months without seeing their
children at all because no family member on the outside
lives close by or is able or willing to drive
some distance to that prison. And all of my volunteer training,
it has been stressed that the support system on the
outside for a female offender is typically much smaller than
(27:07):
the support system on the outside for a male offender,
and Katie Bath also points out she says, I have
also been told that administrative segregation slash the shoe which
is a segregated housing unit. UM is also done for
protection in an enemy situation. Safety may only be guaranteed
if a target is isolated. So thank you for all
(27:30):
of your inside knowledge, Katie. We appreciate it, and thanks
for listening. And I've got an email here from Kate
in response to our lean in episode Unbalancing Wook Life Balance,
and it was she's referencing a story that you told,
Caroline about an older man who was profiled on Humans
of New York who said that when he looked back,
(27:50):
he said he'd give up a couple of rungs on
the ladder to have spent more time with his kids.
She writes, I think this is a pretty common refrain,
and to be honest, it's one that's always irked me.
It's easy to say to younger people you shouldn't work
too hard, enjoy life, it'll work out, etcetera. But the
reality is it's a lot easier to say that having
made money and knowing how your life turned out than
(28:11):
it is in your twenties. You don't know at whether
you'll be successful or have the money to pay for
your kids college education or buy a house. You don't
know whether you could suffer financial setbacks as a result
of something that could happen to your partner, or whether
you will have the sort of career that enables you
to live comfortably and have a good work life balance.
I don't think you have to pressure yourself to have
(28:31):
it all to still struggle with mitigating these concerns. While
it may seem like a cruel irony, I don't think
you can really take that tact in anything but hindsight
or once you've had the luxury to slow down. From
personal experience, my grandparents worked really hard to get to
the top and barely saw their children. My parents decided
to do things differently because they wanted the balance in
(28:52):
more time with their kids, but they have financially suffered
enormously for it. The sad reality is there is no
right answer nor any way saying you would be happier
or better off if you had taken it easier. I
think the best we can do is find jobs to
make us happy for fifty weeks out of the year,
and not just counting down to the two weeks when
we're on vacation. Likewise, it's important to raise children not
(29:14):
apologizing constantly or punishing yourself for the time away, but
rather emphasizing yourself as a strong role model of good
work ethics and maximizing the time that you do have together.
So thanks for some wisdom, Kate, and some real talk.
And if you've got some real talk to send us.
Mom Stuff Discovery dot com is where you can send
your letters police head over to Facebook and like us
(29:37):
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(29:57):
Does it have stuff works dot com se
Welcome to stuff Mom never told you From House to
works Nott Com. Hello and welcome to the podcast. I'm
Caroline and I'm Kristen, And today we are talking about
a health issue that affects a lot of women, millions
of women worldwide, but it was very misunderstood and is
(00:26):
another one of those health issues that a lot of
people a long time ago just assumed was an angry,
bloating uterus. Yeah, we're going to talk about endometriosis. And
back in the day, women who had chronic and severe
pelvic pain that we would these days associate more with
endometriosis were more likely diagnosed as having something called a
(00:50):
suffocating womb or hysteria as we've talked about in past podcast,
or they were just deemed crazy, Yes, your pain makes
you crazy, like yeah, people assume they were possessed on
all sorts of crazy stuff. But really, the crazy thing
is that this disease that affects women is still not understood.
(01:13):
There's still questions as to how and why you get
it and how you go about treating it. So, speaking
of the history of this condition, um Stanford gynecologist Cameron
nez hot Uh led a review of data going back
like four thousand years and found that women suffering from
(01:34):
endometriosis underwent torturous treatments including leeches and blood letting, hot douches,
being hung upside down, and even accused of demonic possession
and ended up getting killed. And going back and looking
at these primary sources, Naza notes that Plato, for instance,
mentions womb suffocation which was most likely endometriosis. And then
(01:57):
fastwarding way forward in history, we have Freud attributing endometriosis
two symptoms of hysteria. And even though it was first
identified around three years ago, it wasn't until the early
twentieth century with the development of anesthesia that there were
more intensive treatments available because you could actually do things
(02:20):
like take a biopsy. Um. But even since then, as
we'll talk about, endometriosis is difficult to get a diagnosis
for in a timely fashion and difficult to treat. Yeah,
I mean still surgery and biopsies are probably the best
(02:42):
way to diagnose endometriosis. Although you can get a minimally
invasive surgery, it's not like a massive surgery to detect endometriosis. UM.
But let's look at some some facts and stats um,
something that is heartbreaking to read about because as endometrios
is so painful, most women suffer endometrial pain for up
(03:05):
to ten years before diagnosis, and that that equates to
about five years spent in pain before they even reported
to anyone or go to the doctor about it, and
then another five years for a proper diagnosis. Because despite
the fact that endometrius is so common, um, there are many,
many stories still of women who go to doctor after
(03:25):
doctor after doctor and they're they're diagnosed with things like
irritable bow uh, even things ranging all the way up
to cervical cancer, pretty much anything but endometrios is. And
as you can imagine, because endometriosis affects so many women,
it does amount up to a massive medical cost um.
(03:46):
And this is coming from the Endometriosis Foundation of America,
which estimates that it racks up about twenty two billion
in related costs annually. And you mentioned at the top
of the podcast s, Carolina, it affects millions of women
and girls worldwide. Endometriosis as one of the most common
(04:06):
health problems in women, affects one hundred and seventies six
women and girls in the United States alone, we're talking
about around eight point five million. And even though twenty
seven is the average age of diagnosis, that is probably
not the age of onset for those painful symptoms. Right. Yeah,
(04:27):
it is considered you know, like a not an older women.
I don't mean like older women. I just mean it's
considered like a mature woman's condition. But yeah, like like
Kristen just said, it probably is something that young women
live with for a long time because they just think, well,
this is normal to have really painful periods or I'm
too embarrassed to talk about why my body hurts. Um,
(04:48):
but it can be serious. Uh. Endometriosis is one of
the top three causes of female infertility, and while it
is one of the most treatable causes of infertility, it
is also one of the least treated cases. So let's
talk about what endometriosis actually is. I have a feeling
that for many of the women listening, and probably a
(05:09):
lot of the men too, you've heard about endometriosis. You've
heard that word before, but myself included, I wasn't exactly
sure what it is inside the body. It is a
painful disorder in which the tissue that normally lines the
inside of your uterus, which is called the endometrium, grows
outside your uterus, and it most commonly involves your ovaries, bowel,
(05:33):
or the tissues aligning your pelvis, but it can also
spread beyond your pelvic region to the lungs, brain, and skin.
But those conditions are a lot rarer right, And the
extreme pain comes from the fact that this endometrial tissue,
this displaced tissue, despite where it is, you know, not
where it's supposed to be, it still acts like it
(05:54):
normally would, so that means that it thickens, breaks down,
and bleeds with each menstrual cycle. However, because the displaced
tissue has no way to exit your body, as it
does during your period, it becomes trapped. And when the
endometriosis involves your ovaries, cysts called endometriom as can form,
(06:16):
and then that leads even worse. It keeps getting worse
do the surrounding tissue becoming irritated and eventually developing scar
tissue and adhesions, which are abnormal tissues that bind organs
together and so not surprisingly, endometriosis can cause pain, sometimes severe,
and especially during your period. And I know personally some
(06:39):
women who have endometriosis, and the pain is no joke.
It is excruciating for a lot of women. And like
you mentioned, Caroline, fertility problems may also develop, but there
are some effective treatments that are available, although there is
no cure for endometriosis. But let's back up for a
minute and talk about what the symptoms of endometriosis are. Yeah.
(07:05):
First of all, I mean, obviously you're going, as we said,
going to have a lot of pain, but the pain
doesn't necessarily equal the severity of the condition itself. It's
not like if you have terrible endometrios as you're going
to have terrible pain. You could have terrible endometriosis and
have mild pain or vice versa. This is really something
that you know, you do need to go to your
doctor about, obviously, because doctors Kristen and Caroline cannot give
(07:26):
the official word on anything. So one of the things
that you experience as a symptom of endometriosis is painful
periods otherwise known as dysmin area basically horrific cramps. Oh yeah, yeah,
And this pelvic pain and cramping might begin before and
extend several days into your period, and the pain can
radiate to your lower back and to the abdomen. And
(07:50):
most women who have endometriosis also have dysmin area, but
it's not it doesn't work both ways. Most women with
dysmin area in general do not have endometrios is, So
just because you have one doesn't necessarily mean that you'll
have the other. And another unpleasant symptom of endometriosis is
painful intercourse. UM. This is a common symptom and another
(08:13):
reason why it's tricky to diagnose sometimes because this might
be an issue that women don't want to talk about because,
as we talked about in our episode on volvedenia for instance,
or the hallmark is extremely painful intercourse. Um. There are
there's lots of shame that goes along with that. Not
(08:33):
only are women sometimes uncomfortable just talking about their vaginas
and sex and the things that go on, but it
can cause problems with partners who might not be too
happy about that pain or think that they're faking it um.
And I'm talking obviously about worst case scenario, but it's
certainly a contributor to the diagnosis gap that we see
(08:55):
with this condition and pain also is known to occur
with bull movement or urination, although you are more likely
to experience those symptoms during your period. And speaking of periods,
you are more likely to have excessive bleeding or bleeding
between periods. And we've already talked about fertility a couple
of times, because infertility can be a symptom of endometriosis,
(09:21):
probably two for women who have waited longer to go
to the doctor or have had more trouble seeking a diagnosis. Um.
And on top of all of these pleasant things, so
we can just toss in some more symptoms including fatigue, diarrhea, constipation, bloating,
and nausea, especially during your period. And if these symptoms
(09:44):
sound like lots of different other things to you, uh,
you're not mislead at all. A lot of times, uh,
women who are coming with these symptoms often get diagnosed
for the wrong thing, like pelvic inflammatory disease of varian
cyst or like you mentioned caroline ib us irritable bowel syndrome. Well,
so we also mentioned earlier that you know, things are
(10:06):
still foggy about why women get into metriosis. There are
several contributing factors. One of those the one of the
main culprits that people talk about is retrograde menstruation, and
in this condition, menstrual blood containing indometrial cells flows back
through the fallopian tubes and into the pelvic cavity instead
(10:26):
of out of the body. These display cells stick to
the pelvic walls and surfaces of pelvic organs, where they
grow and continue to thicken and bleed over the course
of each menstrual cycle. And it's this is actually thought
to happen in a lot of women, but women with
endometriosis or might not actually be able to clear the
extra fluid as well, and it can also result from
(10:48):
issues with embryonic cell growth, specifically in the cells lining
the abdominal and pelvic cavities which come from embryonic cells,
because when one or more small areas of the nominal
lining turned into endometrial tissue, endometriosis can develop. And also
for women who might have undergone his directomys or had
(11:09):
C sections, endometrial cells can attach to surgical incisions, and
there's also the blood vessels and tissue fluid that can
transport endometrial cells to other parts of the body. These
endometrial cells, by the way, Caroline. They are rebellious. It's
like I'm gonna go where I want to go. I know,
(11:31):
they're like horrible teenagers. They just want to get out
of the uterus. Let me out of the the uterus.
Help and mis cell. We're not trying to diminish the
pain of endometriosis, but really though, there's so many mechanisms
for these cells who get into other parts of the body.
Endometriosis is also linked to immune system disorders, and it's
(11:54):
possible that a problem with the immune system may make
the body more unable to recognize and destroy a endometrial
tissue that's gone rogue basically um. And there's also an
issue of the possibility of small amounts of tissue from
when you were nothing but an embryo might later become endometriosis.
(12:16):
So if you're experiencing these symptoms and you go to
the doctor, endometriosis is commonly diagnosed with a pelvic exam,
in which the doctor will feel for large cysts or
scars behind your uterus um. You might also get an
ultrasound to check for ovarian cysts or something called a
lapru scopy, which is when I believe they make an
(12:37):
incision in your belly button. Yeah, minimally invasive. It's one's
incisions in your belly button and one is right above
your pubic area, and they just look around and they
appear inside. But you know, I just I do want
to pause as we're talking about all this because I
know that every time we do a health episode, I'm like,
I have it. I have it. I've got it. I
have it. Um. But I calmed myself down by reading
(13:00):
about the diagnosis and having pelvic exams, in which your doctor,
you know, feels for abnormalities than any sists or anything.
And I was like, Okay, you get a pelvic exam
and a paps mirror every single year. She has never
felt cysts. So you're probably just bloated from you know,
eating too much Mexican food or something. I don't know.
(13:21):
So this podcast is your own Web and D symptom
checker in which you generally get cancer like every other month.
Yeah yeah, yeah, But but so far you're doing great,
Kristen at helping me figure out that I don't have
some of these things. Oh good. And you should also
listen to the advice we always give our listens, which
is talk to your doctor or nurse practitioner, right, But
(13:43):
being aware of these symptoms, especially for something like endometriosis
that affects so many women and yet it's so hard
to diagnose. I think it's really important though, for women
not to be alarmist, to say, run to your doctor
as soon as possible. But maybe it might set off
some lightbulbs for some girls and women who have been
(14:04):
experiencing this kind of pain and discomfort and don't know
what's going on, and maybe you know, we're doing our
part to help close that gap somewhat because it's it's
it is very astounding to me that medical technology and
research has not caught up to this problem. I don't
think it has in any at any rate. Well, they'll
(14:25):
never catch up to a floating uterus, that's true. Um.
So we're talking about diagnosis, and once endometriosis is diagnosed,
the treatment for it is going to depend on the
severity and it might include anything from pain medication to
hormone therapy. Um. I know women with endometriosis, for instance,
(14:46):
who are on hormonal birth control to control the growth
of the endometrial tissue. And then there's also surgery, which
might include laparoscopy or hysterectomy, right, and part of the
the hormonal birth control treatment makes me think of this girl,
and we should do an episode on treating things with
(15:07):
birth control, you know, not you know, not just taking
birth control for birth control. But a girl I went
to high school with had beyond killer cramps every month.
I mean she was in horrific pain, to the point
where she had to stay home and she actually her
her parents very reluctantly put her on birth control just
to control the pain. Um. But so what that does
(15:28):
when you take hormonal birth control is it decreases the
amount of menstrual flow and prevents the overgrowth of tissue
that lines the uterus um. Women can also take ganada,
trope and releasing hormone agonists and antagonists which lower estrogen
levels and stop the menstrul cycle. You can also use
progestins like depa, Privera, and a medication called danasoll which
(15:50):
is an androgen used to treat indometrioss and other similar conditions. Yeah,
and estrogen is often pinpointed when we look into what
can you prevent this? And unfortunately the answer is no,
There's no way to totally dodge endometriosis, but often doctors
might say that lowering estrogen levels can help, and some
(16:13):
ways non medicated that you can do that is through exercise,
reducing body fat, avoiding alcohol and caffeine. Sorry, I can't
give up my morning coffee. Um, but speaking of estrogen though,
I almost hate to mention this study that came out,
but it got a lot of pressed. It was weird,
(16:34):
it was very strange and um some people listeners might
have seen it when it came out in because it
concluded that among a group of three hundred women, those
with severe endometriosis were rated as more attractive than those
with mild endometriosis, possibly because they have higher levels of estrogen.
(16:59):
Now you can imagine how a finding like that would
just be taken and spun out into a million different
kinds of clickable headlines, um saying, hey, ladies, do you
have endometrios as well? Here's what upside, people think you're
really hot. Yeah. And the women in the study were
rated by two male doctors and two female doctors, and
(17:21):
the women who had severe endometrios is tended to have
smaller waists and larger breasts. Yeah, so I mean take
that finding for what it's worth. I tried to find
the actual study and kind of wrap my brain around
why these four doctors were rating this group of three
(17:41):
hundred women because the outcome from it. Yeah, they made
the point about, oh, well estrogen. You know, obviously these
women have more hourglass shapes. This is probably having to
do with estrogen. There's a genetic tie in this, UM
but the presentation of the findings were Yeah, making being
right and and making it about a woman's attractiveness is
(18:04):
very weird and icky and strange because it could have
been presented as like, okay, well these women do have
this estrogen and it contributes to having a more hour
glass shape. You don't have to go into well we
rate it or hot or not? You know, Yeah, it
came across very much hot or not. So I don't
know if there are any academics listening who are familiar
(18:25):
with the study who can offer some insight into its value.
Please email us. Mom said Discovery dot com because it
was one of those that I just saw in my
news feed when it first came out, and I was
a bit taken aback, wondering why why um so Moving
(18:48):
along from that, what is it like living with indometriosis. Unfortunately,
the answer is a lot of times it's very painful. Yeah,
there um a lot of the stuff. Titles on this
condition include phrases like a life shaped by pain, agony,
I never know how I'll feel. I mean that should
(19:09):
be another indication for women out there who were like,
oh my god, do I have this? And clearly the
physical toll that it takes on on women is can
be pretty severe as well as the mental toll. Um
and relationships or something that come up in talking about
endometriosis as well, because it can be taxing for the
(19:31):
partner who's there. There was um a study on how
male partners dealt with being with a woman who has endometriosis,
and it concluded that low mood, anxiety, and powerlessness contributed
to a grief like process much like that experienced by
their female partners, with all some also reporting acceptance and
(19:53):
relationship growth out of that. Um So, just a different
perspective on how ending atriosis is often about a lot
more for the women experience that experiencing it beyond just
killer cramps. And speaking of research, there is uh there
is something that's come up in more recent years is
(20:15):
readjusting our perception of endometriosis is something that really affects
women in their thirties and forties, because I did not
realize this about endometriosis, but it used to be referred
to up until not that long ago as the career
woman's disease because it's often diagnosed in women in their
(20:38):
thirties who don't have kids. But obviously that's not the
only reason why it happens, and the reason why to
women often get those diagnoses in their thirties. I mean,
the average age of diagnosis, as we mentioned at the
top of the podcast, is but that follows years of symptoms, right,
(21:00):
because forty seven percent of women in one study reported
having to see a doctor five times or more before
they got a definitive diagnosis. And then you also have
to think about, Okay, your thirties. You're in your thirties,
you don't have kids. Maybe some of these women also
have been on birth control or been on depot prevyor
or something, and so they don't even realize until maybe
they get older and they want to have kids, or
(21:21):
they just want to switch their birth control or something.
Maybe that's when they start experiencing intense pain because they've
gone off of it. Yeah. And I saw a story
from two thousand twelve over at w b R in
Boston about a girl I think she was fourteen or
fifteen when endometrial symptoms first SEVENCE. She was at a
(21:43):
Taylor Swift concert actually and doubled over in these sharp
pains that started happening. And following that, she and her
parents went through this medical saga of trying to get
some kind of diagnosis because no thing, none of the
treatments that were being given to her, because no one
(22:04):
was thinking, oh, indometriosis. None of the treatments were working.
And I mean, she's very fortunate because she comes from
a wealthy family and they were able to pay thousands
and thousands of dollars. And her mother is saying this
in the story, um, pay so much money for finding
a diagnosis. And then finally she got hooked up with
(22:25):
a specialist who said, oh, this is indometriosis. Um. And
so it's so important that maybe we start to, you know,
focus our attention away from oh, well, this is something
that happens to midle aged women who don't have kids. No, yeah, yeah,
I mean it's it is mind boggling to think that
this poor girl had to go to so many doctors
when it's like, hello, well, and how many poor girls
(22:48):
you know, is it's going on with who are are
experiencing these kinds of symptoms and now and just to
think about how many times she and probably so many
other young girls have just there like here, here's some
pain meds. Just take some pain meds. Well, and the
statuh see women seeing a doctor five times or more
(23:09):
before getting a diagnosis reminds me of similar statistics that
come up when you look at polycystic ovarian syndrome volvidenia,
a lot of these conditions that involve the female pelvis. Well, yeah,
and how even today and we've talked about this before,
but like even today we have our own version of
telling women they have a hysterical uterus, you know, like
(23:32):
our version of that today is the doctor just saying, well, oh,
it's like some kind of phantom pain, like maybe you
used to have something that hurt and that was wrong,
but now you're just like your body is still firing
pain neuron or just having doctors who will simply switch
up your birth control right, just keep you birth control
hopping around. I know personally women that's happened to where
(23:53):
they go in with a problem and the doctor just
wants to change the birth control and that's not actually
the problem. So um, hopefully, I think that one good
step is educating ourselves first, so we know questions to
ask and symptoms to look for. I'm not saying going
the web md symptom checker alarmist route and diagnosing ourselves
(24:14):
with cancer. Caroline, I know, I know, I'm I've gotten better.
It's just now it's like, oh, we're researching a health
condition for the podcast. Oh well sure, yeah. I mean,
these kinds of things can definitely raise our eyebrows, but
you know, we need to be aware of what can
happen to our bodies. And and it's good for us,
(24:35):
you and I to read this stuff and for our
listeners to hear us talking about it because it can
put a lot of people at ease and educate them
about Okay, you probably don't have this, but you might.
And that's why it's important to go to the doctor
and know what to look for, and like you said, Noah,
to ask and hopefully educate guys who are still listening
(24:55):
to this podcast all about endometrial tissue gold star to you,
because I mean that's going to make life easier as
well for women and girls who are experiencing this, for
everybody to have a better idea of what exactly is
going on inside the body. So, now, I guess let's
(25:15):
throw out a call. I want to hear from listeners
who who have the condition, who have dealt with it.
Have you had a stereotypically frustrating medical experience trying to
find a diagnosis and a treatment, and how do you
manage your symptoms? I mean, obviously for some people they're
more severe than others UM, but we want to be
able to share with other listeners techniques that maybe you
(25:38):
found helpful for managing UM endometrial pain and discomfort. So
send us your letters. Mom Stuff discovery dot com is
where you can send them. You can also message us
on Facebook or tweet us at mom Stuff Podcasts. And
we have a couple of letters to share with you.
Right after a quick break and now back to our letters,
(26:02):
All right, Well, I have a letter here from Katie
Beth and she volunteers in women's prisons in her state
for a program called Storylink, and she wanted to write
in and give her her view on some things. After
our women's prison episode, she says, the visiting situation was
not something you mentioned on your podcast. Small active children
(26:25):
can easily get in trouble in the visiting room. Guards
are already on edge and maybe may put pressure on
moms to control their children, not an easy task if
you haven't seen them on a regular basis. Something else
you didn't mention is that communities with men's prisons will
often see a wife or girlfriend move into town to
be close to an offender during incarceration. It's fairly common
(26:45):
for a family to follow a male offender. This does
not happen very often for women, and it's uncommon for
a primary caregiver to suddenly go months without seeing their
children at all because no family member on the outside
lives close by or is able or willing to drive
some distance to that prison. And all of my volunteer training,
it has been stressed that the support system on the
outside for a female offender is typically much smaller than
(27:07):
the support system on the outside for a male offender,
and Katie Bath also points out she says, I have
also been told that administrative segregation slash the shoe which
is a segregated housing unit. UM is also done for
protection in an enemy situation. Safety may only be guaranteed
if a target is isolated. So thank you for all
(27:30):
of your inside knowledge, Katie. We appreciate it, and thanks
for listening. And I've got an email here from Kate
in response to our lean in episode Unbalancing Wook Life Balance,
and it was she's referencing a story that you told,
Caroline about an older man who was profiled on Humans
of New York who said that when he looked back,
(27:50):
he said he'd give up a couple of rungs on
the ladder to have spent more time with his kids.
She writes, I think this is a pretty common refrain,
and to be honest, it's one that's always irked me.
It's easy to say to younger people you shouldn't work
too hard, enjoy life, it'll work out, etcetera. But the
reality is it's a lot easier to say that having
made money and knowing how your life turned out than
(28:11):
it is in your twenties. You don't know at whether
you'll be successful or have the money to pay for
your kids college education or buy a house. You don't
know whether you could suffer financial setbacks as a result
of something that could happen to your partner, or whether
you will have the sort of career that enables you
to live comfortably and have a good work life balance.
I don't think you have to pressure yourself to have
(28:31):
it all to still struggle with mitigating these concerns. While
it may seem like a cruel irony, I don't think
you can really take that tact in anything but hindsight
or once you've had the luxury to slow down. From
personal experience, my grandparents worked really hard to get to
the top and barely saw their children. My parents decided
to do things differently because they wanted the balance in
(28:52):
more time with their kids, but they have financially suffered
enormously for it. The sad reality is there is no
right answer nor any way saying you would be happier
or better off if you had taken it easier. I
think the best we can do is find jobs to
make us happy for fifty weeks out of the year,
and not just counting down to the two weeks when
we're on vacation. Likewise, it's important to raise children not
(29:14):
apologizing constantly or punishing yourself for the time away, but
rather emphasizing yourself as a strong role model of good
work ethics and maximizing the time that you do have together.
So thanks for some wisdom, Kate, and some real talk.
And if you've got some real talk to send us.
Mom Stuff Discovery dot com is where you can send
your letters police head over to Facebook and like us
(29:37):
and follow us on Twitter at mom Stuff Podcast and
you can also follow us on Instagram at stuff mom
Never Told You, and you can watch us as well
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You is where you can go and don't forget to
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(29:57):
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