March 3, 2025 • 34 mins
Join us for a heartfelt and enlightening conversation tackling one of women's health's often-overlooked issues: endometriosis. Through the eyes of three women who bravely share their personal narratives, we uncover the complexities around the experiences of living with this painful condition. From the onset of their first menstrual cycles, fraught with discomfort and uncertainties, to the ongoing struggle to have their pain validated by medical professionals, their journeys are filled with resilience and empowerment.
Listen as they candidly discuss the challenges of misdiagnosis and the importance of advocating for oneself—a central theme that resonates throughout their experiences. This episode emphasizes the necessity of self-advocacy when navigating the healthcare system, where symptoms are often dismissed as "normal." Each story sheds light on the emotional turmoil faced, creating a powerful narrative around the need for medical professionals to listen and respond adequately.
As the conversation shifts toward treatments and the tough decisions surrounding surgeries, including hysterectomies, our guests share invaluable insights into recovery and the bittersweet journey toward finding relief. They reflect on how community and peer support have played crucial roles in their healing processes.
This episode is not just about sharing stories; it's about fostering understanding, breaking stigmas, and building a supportive environment for those affected by endometriosis. We invite you to listen, reflect, and engage with us as we ignite discussion on a topic that profoundly impacts countless women. Don’t forget to subscribe, share your thoughts, and connect with us on our journey toward awareness!
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to my Spoonie Sisters podcast.
We are here to talk about allthings endometriosis, or
endometriosis awareness month.
Hello ladies, hello, helloTiffany.
I'm going to call on you first.
Guilty Pleasures.
What is your favorite guiltypleasure?
(00:21):
Tv?
Speaker 2 (00:22):
show.
Oh my gosh, it would have to bethe Office.
I love the Office.
I've never watched it.
You have to.
Speaker 3 (00:32):
I've never watched it .
It's so good.
I tried one episode and Icouldn't get into it, and maybe
it was.
You know how you go throughphases where certain shows just
don't.
I'll have to try it again.
Speaker 1 (00:43):
You have to.
I was told that we need to makeit through the first few
episodes and then we will loveit.
Speaker 2 (00:50):
Oh yes.
Speaker 3 (00:51):
Yes.
Speaker 2 (00:51):
Okay.
Speaker 1 (00:52):
Yeah, so we're going to give it a try again because I
think it's right up myhusband's alley and everyone
said if you have to even skip toseason two, but whatever you do
, get in and watch it.
Speaker 3 (01:03):
You, you know this one is a really easy one, big
bang theory.
Okay, my husband got me theblu-ray set of all the seasons
for christ.
I had them all but the lastseason, and so for christmas he
got me all of them.
That is my binge.
When I don't feel good, that'swhat I've been watching the last
week, really.
Speaker 2 (01:22):
Yeah, when I don't feel good, that's my go-to my
husband keeps saying we need towatch the big bang theory and
it's like okay, so you said it.
Now I guess we're gonna have todo it.
Yeah, okay if you, if you,watch the office I will watch
the big bang theory what's yours?
Speaker 1 (01:39):
I'm throwing a weird one at you.
No, no, married at First Sight.
The reality show I know Is thatthe reality show it is.
I'm not huge on reality shows.
Speaker 2 (01:52):
Yeah.
Speaker 1 (01:53):
We do like Survivor.
We watch that together everynight, mm-hmm.
But after everyone's in bed Ilike to watch Married.
At First Sight, I feel like.
Speaker 2 (02:02):
I've heard of that show before, but I watched it
the first season.
Speaker 3 (02:07):
There's one couple I still love.
When I see them pop up on myfyp on instagram I'm like yeah,
they're still together.
It just makes me happy thatthey're, and they've got like
three or four kids now.
Speaker 1 (02:19):
So but they were on the first season yeah, exactly,
some are still together, somehave families.
Yeah, all of them stay together.
But what I think is neat is howthey have this panel completely
vetting them, asking all theimportant things, whether it be
questions about their sex life,religion, children, all the
things, because they're tryingto pair up a couple they really
(02:41):
think will bring out the goodqualities in each other.
Yeah, also want the same kind ofthings, and it's interesting to
see because there was onecouple I remember watching and
she was not attracted to himwhatsoever.
She actually was kind of likeyou, I don't want to do this
right, and then you'll watch herjust fall madly in love with
(03:01):
him.
Madly in love favorite personis this guy now and they're
still together.
Speaker 2 (03:05):
You know, you've heard the thing opposite the
tracks.
Speaker 1 (03:08):
Right, you know so yeah, and I will agree he was
kind of a goofy looking dude.
I think he had this like molein a weird spot on his face that
I couldn't help but stare at.
Do you know how sometimespeople see something on
someone's face and you can'thelp but zero in and don't?
get like I have moles, I havethis one that I zero in on.
Things on myself too we couldeasily talk all kinds of, but
(03:31):
the real one we wanted to comehere and discuss is
endometriosis.
What I love is all three of ushave dealt with that.
Tiffany, do you mind kind ofstarting out the conversation
and tell us a little bit of yourbackground with it?
Speaker 2 (03:45):
Yeah.
So here's the thing.
My menstrual cycle started atthe age of 12.
And you know, I was told, yeah,you're going to have cramps,
it's going to hurt a little bit,you're going to have a
bellyache.
So they gave me that you knowwhole spiel and I thought, oh
(04:06):
well, that's going to suck.
You know I don't like that.
But when that time came and Ihad my first experience, I felt
like I was dying.
It felt like, you know, someonehad just squeezed me so tight,
like someone dropped a fireballin my stomach, and my stomach
just blew up like a balloon.
My flow was heavier than I everexpected.
(04:26):
I passed out a few times overthe years.
I passed out.
I told my mom I'm like is thisnormal?
This isn't a normal menstrualcycle, is it?
We went to a gynecologist andfirst they diagnosed me with
PMDD, which I get, and so Ilived with the impression that I
had PMDD.
(04:47):
They just told me and sent meon my way, said it was bad
periods and I lived with that,but it was hell.
It was hell Over the years, allthroughout my teenage years.
I blew up like a balloon.
My flow was heavy.
I was irritated.
One minute I'm irritated.
One minute I'm bawling my eyesout.
It was just emotionsfluctuating everywhere, but I
(05:10):
just felt like this isn't anormal, you know, period like a
woman has, like something's notright here.
I went to my first gynecologistappointment and I said could you
test me, because this doesn'tseem normal?
And they dismissed me and theysaid just bad periods.
(05:30):
Let's put you on some birthcontrol and you'll be fine.
I was naive.
I'm young, I'm naive and I'mthinking okay, maybe this would
work.
It made my periods worse.
It made me worse, my emotionsworse, and it just was not
helping.
I still experienced the pain,the bloating and nearly passing
(05:52):
out all the time, and that's theway it was for years.
I had more OBGYN visits andthey told me the same thing and
that's the way I lived forprobably over 20 years.
I hate that for you.
Yeah, that was terrible.
I had to call off days of work.
I had to call off things withfriends.
Speaker 1 (06:13):
Miss school is awful.
Linnea, you ready to chime inwhat was yours?
Speaker 3 (06:20):
It's a lot of the same.
Tiffany, I had a completehysterectomy in January of 2000.
Yeah, I had had my second childin September of 99.
So nothing ever went rightafter I had him.
But my endometriosis came backroaring and they ended up having
(06:41):
to do an emergency hysterectomyand I got rid of it all.
But that's the way I was inhigh school.
I mean, I was 22 when I had itdone.
But in high school same thing Alot of pain, a lot of bloating,
a lot of just miserable.
And everybody telling me oh,it's just bad period pain.
I'm sorry, I should not bedoubling over like I feel like
(07:04):
I'm going to die andeverything's going to rip out of
my insides.
At that time, 90s, doctorsdidn't know as much about it,
but also they thought you werejust whining, because you were
being a baby, about some periodpain, when it wasn't just period
pain.
So yeah, that's kind of been my, but again, it's been a long
(07:25):
time since I'm 40, almost 48.
So it's been a while since I'vehad any.
But I don't have anyendometriosis any longer.
I have nothing.
So, I'm thankful for that, but Iremember it.
What about you, jen?
How was yours?
Was yours like that?
I?
Speaker 1 (07:39):
think mine was a lot similar to both of you Going
through.
I started having my period atthe age of 12.
And here's a fun fact for youthat summer I was staying with
my aunt and uncle in Las Vegasvisiting them for a whole month.
I was so thrilled to go and oneday, all of a sudden, the house
(08:00):
started to shake.
I went in the kitchen and Icould see the chandelier
swinging and I thought it wasgoing to hit the ceiling.
I remember my aunt running outwith my cousin in hand and she's
like we got to get out of thehouse.
We got to get out of the house.
Now, growing up in Idaho, wealways talked about Yellowstone
and we always did thesepreparations for earthquakes.
So in elementary school we hadto hide under the desks and
(08:26):
prepare.
We did those for tornadoes,yeah.
So we had to do that.
But nothing prepares you forone to really happen.
So here I am, 12 years old.
I should be ready for all thepractice, right?
Nope, scared to death, thoughtI was going to die.
We go outside.
Promise this is going to makesense in a second.
We go outside.
We promise this is going tomake sense in a second.
We go outside, we finally areallowed to go again, we turn on
(08:47):
the TV to see what's going onand an aftershock happens.
So we have to go run outsideagain and then we're having to
survey the house looking forcracks in the house and in the
pool and all the fun things, butit just set me off.
It set me off and that is whenI had my first panic attack was
while I was in Vegas, and thenthe next morning I woke up, went
(09:09):
into the bathroom.
I started my period when peopleask me how I like Vegas.
I hate this.
It's not on a priority for meto go back to.
I haven't been since I was 12.
But for me it's likeearthquakes, panic attacks and
my first period, thanks.
Speaker 2 (09:28):
Yeah.
Speaker 3 (09:29):
It's the earthquake's fault that you started.
Speaker 2 (09:32):
Yeah, it totally scared it out of you.
I was just going to say thatyes, see, yes.
Speaker 1 (09:39):
Yeah, yeah, and I don't know about you guys, but I
remember, you know, going toschool and having the period
start and nothing, nothing wouldhelp that pain, the lightness,
the icky feeling.
I even got upset stomach withit and it was something positive
.
Speaker 2 (09:56):
Yeah, me too.
Yes, I would get physicallysick.
Speaker 1 (10:00):
Sometimes no one prepares.
You are prepared to evenexplain to us about how
medication works.
No, I can go home from schooland say Mom, I started my period
, I'm having really bad cramps,and she can hand me some
ibuprofen.
Mm-hmm.
Did we really understand how itworked?
And, of course, back then I wasallowed to take it with me to
school, right, mm-hmm.
And I remember one time tryingto take Tylenol and nothing was
(10:23):
getting better.
This was, I think, in highschool, and I went home and got
some Advil, took some Advil,tried to get through the rest of
my day, but it was horrific.
Sometimes you could put atampon in and a pad on too.
I believed through all of it.
Speaker 3 (10:36):
Believed through all of it.
Yeah, numerous times calling mymom and she's like I know
there's more going on, butgetting a doctor to listen to
you at that time yeah, like waslike.
Speaker 2 (10:50):
Oh, you're just, you're being dramatic yeah, see,
that's the thing you know there.
There was a point where I justgot so frustrated with ob-gyn I
just quit and I decided you knowI'm I have to defend from ben,
from theend for myself, becauseno one's listening to me, so I'm
going to have to do this on myown.
(11:10):
I had to learn tips and tricksto get through the pain and it
was just awful.
Speaker 1 (11:15):
Absolutely Bless my mom's heart.
You know she did her best and Iremember her sitting down and
saying I miss two days of schoolevery single month.
I'm sitting here going this ismy future.
You miss two days of schoolevery single month.
I'm sitting here going this ismy future.
You missed two days of schoolevery month.
I'm gonna miss two days everymonth.
Yeah that, we gotta do betterthan that.
She did take me in to be seen.
Oh bless my heart.
I was such a I didn't knowanything.
(11:37):
So here she puts me into myfirst ob-gyn and they wanted to
do a full exam.
Right, had never had one, hadnot had one of those.
I was terrified and thisdelusional girl that had been to
all the classes in school wasstill convinced that I was going
to lose my virginity if theydid this to me.
I'm going.
Oh my gosh, you poor child.
I swear.
(11:57):
My mom talked to me about sexand all the things, but somehow
in my head I was going to losemy virginity by them placing
this in to do the exam.
Speaker 3 (12:06):
Wow, it's amazing how our minds are young and we
catch on to certain things,Because all I heard from the
girls in the locker room oh, ifyou use a tampon, you're not
going to be a virgin.
That's not how it works.
I know it, but we were notexplained, even though some of
the things work that way.
Speaker 2 (12:26):
It doesn't work that way health class didn't really
no inform us of that kind ofthing.
Speaker 1 (12:33):
Even even if it did, it's not like we really listened
.
Speaker 2 (12:36):
We're too busy being embarrassed or giggling or
excited about our new thing ofdeodorant yeah, I know, I know
it, and reading thoseinstructions on the pamphlets
when you get the box is like thetedious time.
Speaker 3 (12:52):
My mom was much older .
My mom was like grandparent ageto my friends and so my mom
even grew up in a different timewhere they didn't have all the
tampons and the different sizepads and everything.
When my daughter started I waslike what do I buy?
Speaker 1 (13:07):
I'm looking at the counter going.
Speaker 3 (13:08):
It's been 20 years I haven't had to do any of this.
Yeah, and I saw I could seewhere our moms would struggle
with that, not knowing what tobuy because now we have all
these options but we didn't evenhave, we didn't even have
doctor options back then.
No it was not a thing until Igot pregnant.
(13:29):
Did I ever go to a gynecologist?
Speaker 2 (13:31):
It's so crazy too, because when I would go to the
store to buy my pads, I wouldhave to get the ultra, you know
ultra strength.
But, like I said, my flow wasso heavy I was like, do they
have ultra ultra?
Because, like, at this pointI'm going to need diapers.
You know what?
Speaker 3 (13:49):
the heck.
I was just going to say weshould have just.
It would have been nice to havethose period panties that they
have now.
I know.
Do those work for people likeus?
Speaker 1 (14:00):
Boy, do I have a story for?
Speaker 3 (14:03):
you.
I want to know if, for peoplewith endometriosis, would this
be helpful?
Speaker 1 (14:08):
So tell us, yes.
So my daughter my daughter andI just had For people with
endometriosis.
Would this be helpful?
So tell us it has.
So my daughter and I just hadthis conversation last week.
She has the period panties andshe told me that they are
wonderful, she loves them, butlast week she was at work.
Evidently she didn't have themon snug enough.
You need to make sure they'resnug in the correct position.
If not, they have to be worn acertain way either.
Speaker 3 (14:28):
You have to make sure they're snug, I'm in the
correct position.
If not, they had to be worn acertain way either you have to
make sure they're snug.
Speaker 1 (14:33):
She had to talk to the teacher, which was a man
which is like your dad's age.
Luckily he's got daughters.
Speaker 3 (14:41):
It was all fine doesn't matter how old you are,
you still get no yeah, I know, Iknow I can talk to you guys
about it, but you know bringingup somebody else in public, yeah
no and hopefully you know thosewho are.
Speaker 2 (14:55):
You know, watching this, you know they will not
feel so embarrassed or needingto shell up anymore, because
they're not alone and that'sthat's the point is that
endometriosis used to be sohidden, not talked about.
It needs to be talked about.
It really does.
You know, I got to a pointbecause I have epilepsy and
(15:16):
endometriosis was impacting myseizure activity and I thought
I'm going to give it one moretry.
After 20 years I have to giveit one more try and talk to an
OBGYN.
And so I did and I begged andpleaded.
I said please, please, test me,because I know I have a gut
feeling that I haveendometriosis.
(15:37):
And they were like, ok, we'regoing to do this test and we
have to, you know, place thisthing inside of you.
And they did.
And it was an ultrasound and Ilooked over and I had tears
running down my eyes and theysaid you have endometriosis.
I looked at my husband and Isaid I'm so, so, so sorry
because we wanted to havechildren so bad and I can't have
(16:02):
children.
But I cried, tears and I saidcried tears and I said you have
no idea how much, how long I'vewaited for this.
I said I'm both happy and alittle sad because I'm looking
at my uterus, where my childshould be but will never be.
(16:22):
But I see the endometriosisthat I knew was there for years,
and then I decided to have apartial hysterectomy and my life
has been so much better.
I had to make a sacrifice, butit was worth it.
What age were you at that point?
This was just last year.
Okay, wow, that I had.
Speaker 3 (16:44):
Yeah, see, I don't think I would have ever had my
kids if I didn't get pregnantwhen I did.
I don't think I would have everbeen able to have them because
of how the endometriosis wastaking over.
I got pregnant with my sonlittle window like this itty
(17:10):
bitty window from surgery towhen it all starts growing back
and you gotta find that windowand that window's limb.
well, yeah, jj, we found thewindow because he is now a 25
year old.
But they were shocked when thepregnancy test came back
positive, because they're likewe have no idea how you're
pregnant.
I said you said there was awindow.
Yeah, well, we don't evenreally tell patients that
because we don't want them toget their hopes up.
(17:31):
I did not have any hope tohaving another child, right, but
yeah, so I understand.
I tell him all the time you'remy blessing, they're both my
blessing, because not everybodygets when you have endometriosis
that severe and have babies.
It's an unfortunate side effectof endometriosis.
(17:55):
Has your endometriosis attachedto anywhere outside of your
uterus Besides the ovaries?
Did it go anywhere else in yourbody?
Speaker 2 (18:03):
No, it was just in my uterine lining.
So they needed to take my rightovary, my uterus, and they also
took out my cervix because theynoticed some cancerous cells.
So they didn't want to take anychances and they took that as
well.
Speaker 1 (18:21):
So what happened for me was I went to bed that night
and my back was hurting reallybad and I got up about 4.30 and
my husband was already off towork and at 4.30, I was just
hurting, hurting, hurting, wentto the bathroom and I peed blood
.
I called him up and I said okay, I don't know what's going on,
(18:42):
but I'm peeing blood and he'slike I'm two hours away and I'm
not the one driving, so you'regoing to have to get yourself to
the hospital.
I had to wake up.
My daughter Well, I guess shewas five at that point, she was
in kindergarten Woke my daughterup and we were driving to the
hospital and I missed the turnto the hospital and I had to
actually pull over to the sideof the road and I threw up on
(19:04):
the sidewalk.
Speaker 2 (19:06):
I was missed so much.
Speaker 1 (19:07):
And I got to the hospital and then, long story
short, I found out I had kidneystones that had to be surgically
taken care of.
Well, it was a year later thatI was having what I thought was
that same kind of pain, but itfelt a little different.
But it still felt a lot thesame, but I wasn't peeing blood.
Jeremy was like well, still gosee the urologist, let's find
(19:29):
out what's going on.
And it wasn't kidney stones, Iwasn't having those again.
And finally it got to the pointwhere I ended up in the
emergency room and they didmultiple ultrasounds and
multiple doctors came in andthey were just like we don't
know what's going on, we're justgoing to have to give you some
pain medicine and get youcomfortable.
And then my husband said we arenot here for pain, pain meds,
(19:55):
that's not what we're here for.
We want answers.
We are not leaving until youget her answers, right.
So this poor man, he left theroom and he finally came back
and he said okay, we found you adoctor, he will see you
tomorrow, but can we at leastsend you home with some pain
meds to get you through thenight.
So the next morning I had todrive to the next town over,
which is only a couple milesaway.
I got in there and he said I'mnot putting you through any more
ultrasounds.
They've done enough of these onyou.
(20:16):
I need to get in and scope andfind out what's going on.
It was the following week hewent in there and he found it
growing all over the place,lasered off as much as he
possibly could and thenexplained to us that the best
option was going to be ahysterectomy for me, but he
wanted to do a partial.
Now, mind you, I only had oneovary.
I lost one of my ovaries when Iwas eight months old.
(20:39):
My poor mom was put through alot.
I had gone gangrene and twistedand they couldn't salvage it.
They had to remove it.
The second ovary almost didthat at 18 months old, but they
were able to salvage it.
They had to remove it.
The second ovary almost didthat at 18 months old, but they
were able to salvage it.
Hence I had Madison.
So Madison's my miracle baby.
Yeah, well, he's explaining tous.
I'm going to take everythingout except for this ovary.
(21:00):
You're only 20.
We would like you to have yourhormones and all that fun stuff.
We argued, we tried to get himto take it out because the
endometriosis was growing allover the place.
I was in so much pain we didn'twant to take the chance of
going through more surgery.
He wouldn't listen, so he tookout everything with that last
ovary.
That was 2006 and in 2014 I hadto have emergency surgery
(21:22):
because my ovary was engorgedabout to burst.
Speaker 3 (21:26):
Wow, yeah goodness, and that is why they took out
the second one.
That wasn't really it wasacting up, but nothing like the
other one.
But they're like with.
We can't take the chance.
So they took both of mine.
But see, mine grew on my colonand was growing outside of in
(21:46):
other areas of my body.
I was telling Jenny earliertoday, I had it grow underneath
a mesh from a hernia patch.
It was not there when they putthe hernia patch on.
It was there when they wentback in because I was having
pain and they're like why isthis still happening?
And they went back and it hadgrown.
I had been put on estrogen, likewe all get after we have
hysterectomies.
(22:06):
If they take all your ovaries,the estrogen was causing my body
to cycle even though I wasn'thaving a period, and so it was
growing and multiplying in otherplaces.
I was taking off all estrogenin 2002.
I went through about two yearsof some exploratory surgery
(22:27):
where they kept finding it andthey're like you don't have
anything.
And the doctor was brave enoughto say no, we're taking you off
of it.
Went into surgery two years agofor a prolapse.
I asked him can you please lookaround and make sure nothing's
in there.
I need reassurance that thepain I'm having is just from
(22:47):
this other, it's not from it,and he goes you are completely
clean.
It was the first time I wasexcited for the doctor to tell
me everything was clean, Eventhough he just put everything
back in.
It wasn't there anymore, but itwas from not taking estrogen
any longer.
I've had a few argue with me,but this is where you have to
stand up for yourself and say Iknow my body.
Speaker 2 (23:09):
I cannot have that.
You have to kind of argue withthe doctor, because if they
don't listen and they try to bethe authoritarian, it's like no,
I know my body, you know yeah,you know yeah, we got to, I'm
not leaving, I'm not leaving.
Speaker 3 (23:32):
I want to encourage people, though, that if they
feel like their estrogen iscausing it to grow back, it's a
conversation you should havewith your doctor.
It's a conversation to reallyweigh the options.
For me, with my RA, they saidit would be good to have the
estrogen for my joints, but forthe endometriosis it's not good.
I have to weigh yeah, I'm notdoing any more surgeries, I'll
deal with the RA.
Speaker 1 (23:52):
It's interesting too, because some people get
endometriosis all over the place.
So it doesn't matter if youhave the hysterectomy, You're
still going to get it in places.
And then there's people likemyself who had the surgery,
haven't seen endometriosis since.
Yeah, same here.
Speaker 3 (24:10):
That makes my heart so happy.
When I hear others that cantolerate the estrogen but also
they don't have to go without.
Everything Like it makes myheart happy.
Speaker 2 (24:21):
There's often times where I will have my time alone,
or I'll be alone and maybe I'llbe washing the dishes or
folding laundry and I cry, Itear up and cry just because I'm
happy.
You know that I won.
I feel like I won the battleafter fighting for so long.
Like I won the battle afterfighting for so long and, as you
know, I'm not afraid to show myscars.
(24:42):
You know my hysterectomy scars,because it's like that.
Those are my battle wounds, ormy battle scars after fighting
for so long.
Speaker 3 (24:51):
Exactly we did.
We earned those scars.
Speaker 2 (24:54):
We earned those scars .
Speaker 3 (24:55):
Yes, I hate it.
The ultrasounds FYI Worse Worse, yeah, FYI Worse worse.
Speaker 2 (25:01):
Yeah, I know the tests to find out that that was
very uncomfortable.
I mean, it was uncomfortablebut worth it.
It's worth it.
Speaker 1 (25:11):
Yeah, I want both of you to tell me what would be
your biggest tip for someonewith endometriosis and tip for
someone after a hysterectomy.
Speaker 2 (25:21):
The first tip with someone with endometriosis is to
definitely advocate foryourself.
If you have that hunch, standyour ground and advocate for
yourself.
If you have to get a secondopinion, if you have to get a
third opinion, do it, becausedon't let a doctor push you
around and shut you down.
Honestly, I could have hadanswers probably years ago, but
(25:46):
you know I was naive at the time.
I let the doctors push mearound.
So stand your ground.
If you have that gut feeling,definitely voice your opinions
and voice your concerns.
I agree.
Speaker 1 (25:57):
And I would also add if you are not comfortable
standing up for yourself, takesomeone with you that is
comfortable and will fight foryou.
There you go.
Speaker 3 (26:06):
Yep, and if you can build a community.
That is the one thing I didafter my hysterectomy, because I
was so young and all my friendswere starting families.
I found an online community.
It was my very first onlinecommunity.
Women with endometriosis andhysterectomies I think they
(26:26):
reassured me at 22 that I wasn'tlosing my mind.
Yeah, ask the questions.
I think finding that communityonline because, even if you
can't take them with you to yourdoctors, you can have them in
your pocket.
With their list of questions.
They're going to say, hey, askthem this, ask them that, write
(26:50):
this down.
Take that notepad with you.
Speaker 2 (26:52):
Yes, that right there is it.
Speaker 3 (26:54):
I mean right with you .
Speaker 2 (26:54):
Yeah.
Speaker 1 (26:56):
Now I'm curious Linnea was yours, the same one I
went to.
I joined Hister Sisters.
It is, oh my God.
That would have been funny ifwe were might have talked on
there.
There's so many more optionsnow and I know Tiffany is super
savvy.
I picture Tiffany going over toInstagram or TikTok or all the
things and searching hashtags.
(27:17):
But we didn't have that option.
You had to join other thingsthey held a hand when I have a
newborn.
Speaker 3 (27:24):
I just got done with all the pads and everything from
after having a baby and nowyou're taking all my innards out
and it's still not stopping.
But there were ladies on therethat had been there right where
I had walked, I actually untilshe mentioned about
endometriosis I forgot I had itLike I don't talk about it
(27:44):
anymore.
Most people don't know I'veever had it because I don't have
it anymore.
Speaker 1 (27:51):
Well, we talk more about our RA right, Exactly,
Exactly.
Speaker 3 (27:56):
But I got rid of that endometriosis.
I was one of the lucky few thatI got my babies and was able to
get rid of that pain.
I'm very I would share mygrandbaby with you.
I'd let you cuddle with her,Tiffany.
Speaker 2 (28:09):
Oh, I would love that so much.
I would love that so much, I'mjust going to let you, what
would be your tip for after ahysterectomy?
Yeah, definitely seek out acommunity to really support you,
lift you up and maybe you caneven offer your tips and your
(28:29):
wisdom for someone who might begoing through their journey and
just starting off on theirjourney.
Speaker 3 (28:35):
You need those people because those people are going
to understand the pain you're in.
But after your hysterectomy Ithink you need those people.
Even those people are going tounderstand the pain you're in,
but after your hysterectomy Ithink you need those people even
a little more because of youremotions and your roller coaster
of the hormones.
I think it's so important.
But I think my biggest tipabout the hysterectomy is get
(28:57):
your butt up.
As soon as they give youpermission to walk, you get up
and you start walking.
That's right.
It will help your recovery time.
I learned that from myC-sections.
I am so glad I did it becauseit did get me moving better and
I felt more like myself when.
Speaker 2 (29:14):
I could move.
That's true.
I was encouraged to do that.
Speaker 3 (29:19):
Yeah, yeah it's really important and talk.
Talk to your spouse, talk to afriend, talk to somebody.
Do not keep it inside.
Speaker 1 (29:27):
No, no, not at all.
My next question tiffany.
For someone that is wanting tonavigate and join this, the
space of advocating online, youand I are both patient leaders.
It's been really fun.
What would be your tip tosomeone starting out and wanting
to join in and doing these kindof things?
Speaker 2 (29:49):
that's a great question.
I would definitely just connectwith the community, you know,
just really get to know thecommunity, get to know what they
need and really what you need,and just talk, start talking,
raising awareness, sharingcontent, all kinds of different
things, and even talk about yourstory, tell your story, I agree
(30:12):
.
Speaker 1 (30:12):
I think a lot of times we get stuck in thinking
we don't have all the knowledge,we don't have all the tools and
you don't always need to be inCongress.
Oh, if you're advocating, youcan advocate from anywhere.
Yes, your voice Right?
Speaker 2 (30:30):
Yeah, just soak up the knowledge.
Soak up the knowledge fromreputable resources and just
talk about it with family,friends, online communities,
just everyone that you familyfriends online communities, just
everyone that you know iswilling to listen.
Speaker 1 (30:45):
This has been a fantastic conversation.
Speaker 3 (30:48):
I think it was a conversation that needed to be
had.
Looking back, endometriosisdoes not get a big enough voice
out there.
No, no, I'm glad you did this,jen.
Speaker 1 (30:57):
I'm going to close this out with one more fun
question, oh no, I'm going toclose this out with one more fun
question.
Oh no, I know, I know, bring it.
If you could eat only one foodfor the rest of your life, what
would it be?
Speaker 3 (31:13):
Chipotle.
I think we're on the sameMexican.
Just give me a plain taco orquesadilla.
I could live on that for therest of my life.
Speaker 2 (31:21):
Yes.
Speaker 3 (31:23):
Just think about it.
You can do different variationIf you ask for a taco and you
get all the toppings for a taco.
You see where I'm going.
Speaker 1 (31:30):
I was about to say zucchini or squash, but that
leaves out all the other thingsI need.
But that leaves out all theother important things I need.
So if I say, like a taco or ataco salad, that opens up way
more healthy options to keep mealive.
Speaker 3 (31:47):
I think it's funny that she went like zucchini and
we went a whole big group, likea whole ethnic group.
Speaker 1 (31:54):
Yes, we did, we did yes we did my first thought was
salmon, and I was, but my bodyneeds more than salmon.
And I was like, ooh, I reallylike zucchini.
I just can't you see how mybrain was going.
I was thinking tacos and shesaid chipotle and I'm like yes,
oh yes, I was over here being aping-pong, going back and forth,
trying to decide okay, this,this, this or this you know
(32:18):
where Tiffany and Ice Heads are?
Oh, yes, I need a taco tonight.
Well, thank you all for givingyour time today.
I think this was fabulous and Ihope it's helpful to someone
out there.
And besides all the usualplaces that we look for things,
if you're needing it, check outHistory Sisters 2.
I bet it's still around.
Yes, if you ever have questionsor just want someone to chat
(32:44):
with, our dms are always opentiffany and linea.
They're great people.
Don't be afraid, don't be shy,go say hello.
All right, until next time.
Don't forget your spoon.
Welcome back to my Spoonie Sisters podcast.
We are here to talk about allthings endometriosis, or
endometriosis awareness month.
Hello ladies, hello, helloTiffany.
I'm going to call on you first.
Guilty Pleasures.
What is your favorite guiltypleasure?
(00:21):
Tv?
Speaker 2 (00:22):
show.
Oh my gosh, it would have to bethe Office.
I love the Office.
I've never watched it.
You have to.
Speaker 3 (00:32):
I've never watched it .
It's so good.
I tried one episode and Icouldn't get into it, and maybe
it was.
You know how you go throughphases where certain shows just
don't.
I'll have to try it again.
Speaker 1 (00:43):
You have to.
I was told that we need to makeit through the first few
episodes and then we will loveit.
Speaker 2 (00:50):
Oh yes.
Speaker 3 (00:51):
Yes.
Speaker 2 (00:51):
Okay.
Speaker 1 (00:52):
Yeah, so we're going to give it a try again because I
think it's right up myhusband's alley and everyone
said if you have to even skip toseason two, but whatever you do
, get in and watch it.
Speaker 3 (01:03):
You, you know this one is a really easy one, big
bang theory.
Okay, my husband got me theblu-ray set of all the seasons
for christ.
I had them all but the lastseason, and so for christmas he
got me all of them.
That is my binge.
When I don't feel good, that'swhat I've been watching the last
week, really.
Speaker 2 (01:22):
Yeah, when I don't feel good, that's my go-to my
husband keeps saying we need towatch the big bang theory and
it's like okay, so you said it.
Now I guess we're gonna have todo it.
Yeah, okay if you, if you,watch the office I will watch
the big bang theory what's yours?
Speaker 1 (01:39):
I'm throwing a weird one at you.
No, no, married at First Sight.
The reality show I know Is thatthe reality show it is.
I'm not huge on reality shows.
Speaker 2 (01:52):
Yeah.
Speaker 1 (01:53):
We do like Survivor.
We watch that together everynight, mm-hmm.
But after everyone's in bed Ilike to watch Married.
At First Sight, I feel like.
Speaker 2 (02:02):
I've heard of that show before, but I watched it
the first season.
Speaker 3 (02:07):
There's one couple I still love.
When I see them pop up on myfyp on instagram I'm like yeah,
they're still together.
It just makes me happy thatthey're, and they've got like
three or four kids now.
Speaker 1 (02:19):
So but they were on the first season yeah, exactly,
some are still together, somehave families.
Yeah, all of them stay together.
But what I think is neat is howthey have this panel completely
vetting them, asking all theimportant things, whether it be
questions about their sex life,religion, children, all the
things, because they're tryingto pair up a couple they really
(02:41):
think will bring out the goodqualities in each other.
Yeah, also want the same kind ofthings, and it's interesting to
see because there was onecouple I remember watching and
she was not attracted to himwhatsoever.
She actually was kind of likeyou, I don't want to do this
right, and then you'll watch herjust fall madly in love with
(03:01):
him.
Madly in love favorite personis this guy now and they're
still together.
Speaker 2 (03:05):
You know, you've heard the thing opposite the
tracks.
Speaker 1 (03:08):
Right, you know so yeah, and I will agree he was
kind of a goofy looking dude.
I think he had this like molein a weird spot on his face that
I couldn't help but stare at.
Do you know how sometimespeople see something on
someone's face and you can'thelp but zero in and don't?
get like I have moles, I havethis one that I zero in on.
Things on myself too we couldeasily talk all kinds of, but
(03:31):
the real one we wanted to comehere and discuss is
endometriosis.
What I love is all three of ushave dealt with that.
Tiffany, do you mind kind ofstarting out the conversation
and tell us a little bit of yourbackground with it?
Speaker 2 (03:45):
Yeah.
So here's the thing.
My menstrual cycle started atthe age of 12.
And you know, I was told, yeah,you're going to have cramps,
it's going to hurt a little bit,you're going to have a
bellyache.
So they gave me that you knowwhole spiel and I thought, oh
(04:06):
well, that's going to suck.
You know I don't like that.
But when that time came and Ihad my first experience, I felt
like I was dying.
It felt like, you know, someonehad just squeezed me so tight,
like someone dropped a fireballin my stomach, and my stomach
just blew up like a balloon.
My flow was heavier than I everexpected.
(04:26):
I passed out a few times overthe years.
I passed out.
I told my mom I'm like is thisnormal?
This isn't a normal menstrualcycle, is it?
We went to a gynecologist andfirst they diagnosed me with
PMDD, which I get, and so Ilived with the impression that I
had PMDD.
(04:47):
They just told me and sent meon my way, said it was bad
periods and I lived with that,but it was hell.
It was hell Over the years, allthroughout my teenage years.
I blew up like a balloon.
My flow was heavy.
I was irritated.
One minute I'm irritated.
One minute I'm bawling my eyesout.
It was just emotionsfluctuating everywhere, but I
(05:10):
just felt like this isn't anormal, you know, period like a
woman has, like something's notright here.
I went to my first gynecologistappointment and I said could you
test me, because this doesn'tseem normal?
And they dismissed me and theysaid just bad periods.
(05:30):
Let's put you on some birthcontrol and you'll be fine.
I was naive.
I'm young, I'm naive and I'mthinking okay, maybe this would
work.
It made my periods worse.
It made me worse, my emotionsworse, and it just was not
helping.
I still experienced the pain,the bloating and nearly passing
(05:52):
out all the time, and that's theway it was for years.
I had more OBGYN visits andthey told me the same thing and
that's the way I lived forprobably over 20 years.
I hate that for you.
Yeah, that was terrible.
I had to call off days of work.
I had to call off things withfriends.
Speaker 1 (06:13):
Miss school is awful.
Linnea, you ready to chime inwhat was yours?
Speaker 3 (06:20):
It's a lot of the same.
Tiffany, I had a completehysterectomy in January of 2000.
Yeah, I had had my second childin September of 99.
So nothing ever went rightafter I had him.
But my endometriosis came backroaring and they ended up having
(06:41):
to do an emergency hysterectomyand I got rid of it all.
But that's the way I was inhigh school.
I mean, I was 22 when I had itdone.
But in high school same thing Alot of pain, a lot of bloating,
a lot of just miserable.
And everybody telling me oh,it's just bad period pain.
I'm sorry, I should not bedoubling over like I feel like
(07:04):
I'm going to die andeverything's going to rip out of
my insides.
At that time, 90s, doctorsdidn't know as much about it,
but also they thought you werejust whining, because you were
being a baby, about some periodpain, when it wasn't just period
pain.
So yeah, that's kind of been my, but again, it's been a long
(07:25):
time since I'm 40, almost 48.
So it's been a while since I'vehad any.
But I don't have anyendometriosis any longer.
I have nothing.
So, I'm thankful for that, but Iremember it.
What about you, jen?
How was yours?
Was yours like that?
I?
Speaker 1 (07:39):
think mine was a lot similar to both of you Going
through.
I started having my period atthe age of 12.
And here's a fun fact for youthat summer I was staying with
my aunt and uncle in Las Vegasvisiting them for a whole month.
I was so thrilled to go and oneday, all of a sudden, the house
(08:00):
started to shake.
I went in the kitchen and Icould see the chandelier
swinging and I thought it wasgoing to hit the ceiling.
I remember my aunt running outwith my cousin in hand and she's
like we got to get out of thehouse.
We got to get out of the house.
Now, growing up in Idaho, wealways talked about Yellowstone
and we always did thesepreparations for earthquakes.
So in elementary school we hadto hide under the desks and
(08:26):
prepare.
We did those for tornadoes,yeah.
So we had to do that.
But nothing prepares you forone to really happen.
So here I am, 12 years old.
I should be ready for all thepractice, right?
Nope, scared to death, thoughtI was going to die.
We go outside.
Promise this is going to makesense in a second.
We go outside.
We promise this is going tomake sense in a second.
We go outside, we finally areallowed to go again, we turn on
(08:47):
the TV to see what's going onand an aftershock happens.
So we have to go run outsideagain and then we're having to
survey the house looking forcracks in the house and in the
pool and all the fun things, butit just set me off.
It set me off and that is whenI had my first panic attack was
while I was in Vegas, and thenthe next morning I woke up, went
(09:09):
into the bathroom.
I started my period when peopleask me how I like Vegas.
I hate this.
It's not on a priority for meto go back to.
I haven't been since I was 12.
But for me it's likeearthquakes, panic attacks and
my first period, thanks.
Speaker 2 (09:28):
Yeah.
Speaker 3 (09:29):
It's the earthquake's fault that you started.
Speaker 2 (09:32):
Yeah, it totally scared it out of you.
I was just going to say thatyes, see, yes.
Speaker 1 (09:39):
Yeah, yeah, and I don't know about you guys, but I
remember, you know, going toschool and having the period
start and nothing, nothing wouldhelp that pain, the lightness,
the icky feeling.
I even got upset stomach withit and it was something positive
.
Speaker 2 (09:56):
Yeah, me too.
Yes, I would get physicallysick.
Speaker 1 (10:00):
Sometimes no one prepares.
You are prepared to evenexplain to us about how
medication works.
No, I can go home from schooland say Mom, I started my period
, I'm having really bad cramps,and she can hand me some
ibuprofen.
Mm-hmm.
Did we really understand how itworked?
And, of course, back then I wasallowed to take it with me to
school, right, mm-hmm.
And I remember one time tryingto take Tylenol and nothing was
(10:23):
getting better.
This was, I think, in highschool, and I went home and got
some Advil, took some Advil,tried to get through the rest of
my day, but it was horrific.
Sometimes you could put atampon in and a pad on too.
I believed through all of it.
Speaker 3 (10:36):
Believed through all of it.
Yeah, numerous times calling mymom and she's like I know
there's more going on, butgetting a doctor to listen to
you at that time yeah, like waslike.
Speaker 2 (10:50):
Oh, you're just, you're being dramatic yeah, see,
that's the thing you know there.
There was a point where I justgot so frustrated with ob-gyn I
just quit and I decided you knowI'm I have to defend from ben,
from theend for myself, becauseno one's listening to me, so I'm
going to have to do this on myown.
(11:10):
I had to learn tips and tricksto get through the pain and it
was just awful.
Speaker 1 (11:15):
Absolutely Bless my mom's heart.
You know she did her best and Iremember her sitting down and
saying I miss two days of schoolevery single month.
I'm sitting here going this ismy future.
You miss two days of schoolevery single month.
I'm sitting here going this ismy future.
You missed two days of schoolevery month.
I'm gonna miss two days everymonth.
Yeah that, we gotta do betterthan that.
She did take me in to be seen.
Oh bless my heart.
I was such a I didn't knowanything.
(11:37):
So here she puts me into myfirst ob-gyn and they wanted to
do a full exam.
Right, had never had one, hadnot had one of those.
I was terrified and thisdelusional girl that had been to
all the classes in school wasstill convinced that I was going
to lose my virginity if theydid this to me.
I'm going.
Oh my gosh, you poor child.
I swear.
(11:57):
My mom talked to me about sexand all the things, but somehow
in my head I was going to losemy virginity by them placing
this in to do the exam.
Speaker 3 (12:06):
Wow, it's amazing how our minds are young and we
catch on to certain things,Because all I heard from the
girls in the locker room oh, ifyou use a tampon, you're not
going to be a virgin.
That's not how it works.
I know it, but we were notexplained, even though some of
the things work that way.
Speaker 2 (12:26):
It doesn't work that way health class didn't really
no inform us of that kind ofthing.
Speaker 1 (12:33):
Even even if it did, it's not like we really listened
.
Speaker 2 (12:36):
We're too busy being embarrassed or giggling or
excited about our new thing ofdeodorant yeah, I know, I know
it, and reading thoseinstructions on the pamphlets
when you get the box is like thetedious time.
Speaker 3 (12:52):
My mom was much older .
My mom was like grandparent ageto my friends and so my mom
even grew up in a different timewhere they didn't have all the
tampons and the different sizepads and everything.
When my daughter started I waslike what do I buy?
Speaker 1 (13:07):
I'm looking at the counter going.
Speaker 3 (13:08):
It's been 20 years I haven't had to do any of this.
Yeah, and I saw I could seewhere our moms would struggle
with that, not knowing what tobuy because now we have all
these options but we didn't evenhave, we didn't even have
doctor options back then.
No it was not a thing until Igot pregnant.
(13:29):
Did I ever go to a gynecologist?
Speaker 2 (13:31):
It's so crazy too, because when I would go to the
store to buy my pads, I wouldhave to get the ultra, you know
ultra strength.
But, like I said, my flow wasso heavy I was like, do they
have ultra ultra?
Because, like, at this pointI'm going to need diapers.
You know what?
Speaker 3 (13:49):
the heck.
I was just going to say weshould have just.
It would have been nice to havethose period panties that they
have now.
I know.
Do those work for people likeus?
Speaker 1 (14:00):
Boy, do I have a story for?
Speaker 3 (14:03):
you.
I want to know if, for peoplewith endometriosis, would this
be helpful?
Speaker 1 (14:08):
So tell us, yes.
So my daughter my daughter andI just had For people with
endometriosis.
Would this be helpful?
So tell us it has.
So my daughter and I just hadthis conversation last week.
She has the period panties andshe told me that they are
wonderful, she loves them, butlast week she was at work.
Evidently she didn't have themon snug enough.
You need to make sure they'resnug in the correct position.
If not, they have to be worn acertain way either.
Speaker 3 (14:28):
You have to make sure they're snug, I'm in the
correct position.
If not, they had to be worn acertain way either you have to
make sure they're snug.
Speaker 1 (14:33):
She had to talk to the teacher, which was a man
which is like your dad's age.
Luckily he's got daughters.
Speaker 3 (14:41):
It was all fine doesn't matter how old you are,
you still get no yeah, I know, Iknow I can talk to you guys
about it, but you know bringingup somebody else in public, yeah
no and hopefully you know thosewho are.
Speaker 2 (14:55):
You know, watching this, you know they will not
feel so embarrassed or needingto shell up anymore, because
they're not alone and that'sthat's the point is that
endometriosis used to be sohidden, not talked about.
It needs to be talked about.
It really does.
You know, I got to a pointbecause I have epilepsy and
(15:16):
endometriosis was impacting myseizure activity and I thought
I'm going to give it one moretry.
After 20 years I have to giveit one more try and talk to an
OBGYN.
And so I did and I begged andpleaded.
I said please, please, test me,because I know I have a gut
feeling that I haveendometriosis.
(15:37):
And they were like, ok, we'regoing to do this test and we
have to, you know, place thisthing inside of you.
And they did.
And it was an ultrasound and Ilooked over and I had tears
running down my eyes and theysaid you have endometriosis.
I looked at my husband and Isaid I'm so, so, so sorry
because we wanted to havechildren so bad and I can't have
(16:02):
children.
But I cried, tears and I saidcried tears and I said you have
no idea how much, how long I'vewaited for this.
I said I'm both happy and alittle sad because I'm looking
at my uterus, where my childshould be but will never be.
(16:22):
But I see the endometriosisthat I knew was there for years,
and then I decided to have apartial hysterectomy and my life
has been so much better.
I had to make a sacrifice, butit was worth it.
What age were you at that point?
This was just last year.
Okay, wow, that I had.
Speaker 3 (16:44):
Yeah, see, I don't think I would have ever had my
kids if I didn't get pregnantwhen I did.
I don't think I would have everbeen able to have them because
of how the endometriosis wastaking over.
I got pregnant with my sonlittle window like this itty
(17:10):
bitty window from surgery towhen it all starts growing back
and you gotta find that windowand that window's limb.
well, yeah, jj, we found thewindow because he is now a 25
year old.
But they were shocked when thepregnancy test came back
positive, because they're likewe have no idea how you're
pregnant.
I said you said there was awindow.
Yeah, well, we don't evenreally tell patients that
because we don't want them toget their hopes up.
(17:31):
I did not have any hope tohaving another child, right, but
yeah, so I understand.
I tell him all the time you'remy blessing, they're both my
blessing, because not everybodygets when you have endometriosis
that severe and have babies.
It's an unfortunate side effectof endometriosis.
(17:55):
Has your endometriosis attachedto anywhere outside of your
uterus Besides the ovaries?
Did it go anywhere else in yourbody?
Speaker 2 (18:03):
No, it was just in my uterine lining.
So they needed to take my rightovary, my uterus, and they also
took out my cervix because theynoticed some cancerous cells.
So they didn't want to take anychances and they took that as
well.
Speaker 1 (18:21):
So what happened for me was I went to bed that night
and my back was hurting reallybad and I got up about 4.30 and
my husband was already off towork and at 4.30, I was just
hurting, hurting, hurting, wentto the bathroom and I peed blood
.
I called him up and I said okay, I don't know what's going on,
(18:42):
but I'm peeing blood and he'slike I'm two hours away and I'm
not the one driving, so you'regoing to have to get yourself to
the hospital.
I had to wake up.
My daughter Well, I guess shewas five at that point, she was
in kindergarten Woke my daughterup and we were driving to the
hospital and I missed the turnto the hospital and I had to
actually pull over to the sideof the road and I threw up on
(19:04):
the sidewalk.
Speaker 2 (19:06):
I was missed so much.
Speaker 1 (19:07):
And I got to the hospital and then, long story
short, I found out I had kidneystones that had to be surgically
taken care of.
Well, it was a year later thatI was having what I thought was
that same kind of pain, but itfelt a little different.
But it still felt a lot thesame, but I wasn't peeing blood.
Jeremy was like well, still gosee the urologist, let's find
(19:29):
out what's going on.
And it wasn't kidney stones, Iwasn't having those again.
And finally it got to the pointwhere I ended up in the
emergency room and they didmultiple ultrasounds and
multiple doctors came in andthey were just like we don't
know what's going on, we're justgoing to have to give you some
pain medicine and get youcomfortable.
And then my husband said we arenot here for pain, pain meds,
(19:55):
that's not what we're here for.
We want answers.
We are not leaving until youget her answers, right.
So this poor man, he left theroom and he finally came back
and he said okay, we found you adoctor, he will see you
tomorrow, but can we at leastsend you home with some pain
meds to get you through thenight.
So the next morning I had todrive to the next town over,
which is only a couple milesaway.
I got in there and he said I'mnot putting you through any more
ultrasounds.
They've done enough of these onyou.
(20:16):
I need to get in and scope andfind out what's going on.
It was the following week hewent in there and he found it
growing all over the place,lasered off as much as he
possibly could and thenexplained to us that the best
option was going to be ahysterectomy for me, but he
wanted to do a partial.
Now, mind you, I only had oneovary.
I lost one of my ovaries when Iwas eight months old.
(20:39):
My poor mom was put through alot.
I had gone gangrene and twistedand they couldn't salvage it.
They had to remove it.
The second ovary almost didthat at 18 months old, but they
were able to salvage it.
They had to remove it.
The second ovary almost didthat at 18 months old, but they
were able to salvage it.
Hence I had Madison.
So Madison's my miracle baby.
Yeah, well, he's explaining tous.
I'm going to take everythingout except for this ovary.
(21:00):
You're only 20.
We would like you to have yourhormones and all that fun stuff.
We argued, we tried to get himto take it out because the
endometriosis was growing allover the place.
I was in so much pain we didn'twant to take the chance of
going through more surgery.
He wouldn't listen, so he tookout everything with that last
ovary.
That was 2006 and in 2014 I hadto have emergency surgery
(21:22):
because my ovary was engorgedabout to burst.
Speaker 3 (21:26):
Wow, yeah goodness, and that is why they took out
the second one.
That wasn't really it wasacting up, but nothing like the
other one.
But they're like with.
We can't take the chance.
So they took both of mine.
But see, mine grew on my colonand was growing outside of in
(21:46):
other areas of my body.
I was telling Jenny earliertoday, I had it grow underneath
a mesh from a hernia patch.
It was not there when they putthe hernia patch on.
It was there when they wentback in because I was having
pain and they're like why isthis still happening?
And they went back and it hadgrown.
I had been put on estrogen, likewe all get after we have
hysterectomies.
(22:06):
If they take all your ovaries,the estrogen was causing my body
to cycle even though I wasn'thaving a period, and so it was
growing and multiplying in otherplaces.
I was taking off all estrogenin 2002.
I went through about two yearsof some exploratory surgery
(22:27):
where they kept finding it andthey're like you don't have
anything.
And the doctor was brave enoughto say no, we're taking you off
of it.
Went into surgery two years agofor a prolapse.
I asked him can you please lookaround and make sure nothing's
in there.
I need reassurance that thepain I'm having is just from
(22:47):
this other, it's not from it,and he goes you are completely
clean.
It was the first time I wasexcited for the doctor to tell
me everything was clean, Eventhough he just put everything
back in.
It wasn't there anymore, but itwas from not taking estrogen
any longer.
I've had a few argue with me,but this is where you have to
stand up for yourself and say Iknow my body.
Speaker 2 (23:09):
I cannot have that.
You have to kind of argue withthe doctor, because if they
don't listen and they try to bethe authoritarian, it's like no,
I know my body, you know yeah,you know yeah, we got to, I'm
not leaving, I'm not leaving.
Speaker 3 (23:32):
I want to encourage people, though, that if they
feel like their estrogen iscausing it to grow back, it's a
conversation you should havewith your doctor.
It's a conversation to reallyweigh the options.
For me, with my RA, they saidit would be good to have the
estrogen for my joints, but forthe endometriosis it's not good.
I have to weigh yeah, I'm notdoing any more surgeries, I'll
deal with the RA.
Speaker 1 (23:52):
It's interesting too, because some people get
endometriosis all over the place.
So it doesn't matter if youhave the hysterectomy, You're
still going to get it in places.
And then there's people likemyself who had the surgery,
haven't seen endometriosis since.
Yeah, same here.
Speaker 3 (24:10):
That makes my heart so happy.
When I hear others that cantolerate the estrogen but also
they don't have to go without.
Everything Like it makes myheart happy.
Speaker 2 (24:21):
There's often times where I will have my time alone,
or I'll be alone and maybe I'llbe washing the dishes or
folding laundry and I cry, Itear up and cry just because I'm
happy.
You know that I won.
I feel like I won the battleafter fighting for so long.
Like I won the battle afterfighting for so long and, as you
know, I'm not afraid to show myscars.
(24:42):
You know my hysterectomy scars,because it's like that.
Those are my battle wounds, ormy battle scars after fighting
for so long.
Speaker 3 (24:51):
Exactly we did.
We earned those scars.
Speaker 2 (24:54):
We earned those scars .
Speaker 3 (24:55):
Yes, I hate it.
The ultrasounds FYI Worse Worse, yeah, FYI Worse worse.
Speaker 2 (25:01):
Yeah, I know the tests to find out that that was
very uncomfortable.
I mean, it was uncomfortablebut worth it.
It's worth it.
Speaker 1 (25:11):
Yeah, I want both of you to tell me what would be
your biggest tip for someonewith endometriosis and tip for
someone after a hysterectomy.
Speaker 2 (25:21):
The first tip with someone with endometriosis is to
definitely advocate foryourself.
If you have that hunch, standyour ground and advocate for
yourself.
If you have to get a secondopinion, if you have to get a
third opinion, do it, becausedon't let a doctor push you
around and shut you down.
Honestly, I could have hadanswers probably years ago, but
(25:46):
you know I was naive at the time.
I let the doctors push mearound.
So stand your ground.
If you have that gut feeling,definitely voice your opinions
and voice your concerns.
I agree.
Speaker 1 (25:57):
And I would also add if you are not comfortable
standing up for yourself, takesomeone with you that is
comfortable and will fight foryou.
There you go.
Speaker 3 (26:06):
Yep, and if you can build a community.
That is the one thing I didafter my hysterectomy, because I
was so young and all my friendswere starting families.
I found an online community.
It was my very first onlinecommunity.
Women with endometriosis andhysterectomies I think they
(26:26):
reassured me at 22 that I wasn'tlosing my mind.
Yeah, ask the questions.
I think finding that communityonline because, even if you
can't take them with you to yourdoctors, you can have them in
your pocket.
With their list of questions.
They're going to say, hey, askthem this, ask them that, write
(26:50):
this down.
Take that notepad with you.
Speaker 2 (26:52):
Yes, that right there is it.
Speaker 3 (26:54):
I mean right with you .
Speaker 2 (26:54):
Yeah.
Speaker 1 (26:56):
Now I'm curious Linnea was yours, the same one I
went to.
I joined Hister Sisters.
It is, oh my God.
That would have been funny ifwe were might have talked on
there.
There's so many more optionsnow and I know Tiffany is super
savvy.
I picture Tiffany going over toInstagram or TikTok or all the
things and searching hashtags.
(27:17):
But we didn't have that option.
You had to join other thingsthey held a hand when I have a
newborn.
Speaker 3 (27:24):
I just got done with all the pads and everything from
after having a baby and nowyou're taking all my innards out
and it's still not stopping.
But there were ladies on therethat had been there right where
I had walked, I actually untilshe mentioned about
endometriosis I forgot I had itLike I don't talk about it
(27:44):
anymore.
Most people don't know I'veever had it because I don't have
it anymore.
Speaker 1 (27:51):
Well, we talk more about our RA right, Exactly,
Exactly.
Speaker 3 (27:56):
But I got rid of that endometriosis.
I was one of the lucky few thatI got my babies and was able to
get rid of that pain.
I'm very I would share mygrandbaby with you.
I'd let you cuddle with her,Tiffany.
Speaker 2 (28:09):
Oh, I would love that so much.
I would love that so much, I'mjust going to let you, what
would be your tip for after ahysterectomy?
Yeah, definitely seek out acommunity to really support you,
lift you up and maybe you caneven offer your tips and your
(28:29):
wisdom for someone who might begoing through their journey and
just starting off on theirjourney.
Speaker 3 (28:35):
You need those people because those people are going
to understand the pain you're in.
But after your hysterectomy Ithink you need those people.
Even those people are going tounderstand the pain you're in,
but after your hysterectomy Ithink you need those people even
a little more because of youremotions and your roller coaster
of the hormones.
I think it's so important.
But I think my biggest tipabout the hysterectomy is get
(28:57):
your butt up.
As soon as they give youpermission to walk, you get up
and you start walking.
That's right.
It will help your recovery time.
I learned that from myC-sections.
I am so glad I did it becauseit did get me moving better and
I felt more like myself when.
Speaker 2 (29:14):
I could move.
That's true.
I was encouraged to do that.
Speaker 3 (29:19):
Yeah, yeah it's really important and talk.
Talk to your spouse, talk to afriend, talk to somebody.
Do not keep it inside.
Speaker 1 (29:27):
No, no, not at all.
My next question tiffany.
For someone that is wanting tonavigate and join this, the
space of advocating online, youand I are both patient leaders.
It's been really fun.
What would be your tip tosomeone starting out and wanting
to join in and doing these kindof things?
Speaker 2 (29:49):
that's a great question.
I would definitely just connectwith the community, you know,
just really get to know thecommunity, get to know what they
need and really what you need,and just talk, start talking,
raising awareness, sharingcontent, all kinds of different
things, and even talk about yourstory, tell your story, I agree
(30:12):
.
Speaker 1 (30:12):
I think a lot of times we get stuck in thinking
we don't have all the knowledge,we don't have all the tools and
you don't always need to be inCongress.
Oh, if you're advocating, youcan advocate from anywhere.
Yes, your voice Right?
Speaker 2 (30:30):
Yeah, just soak up the knowledge.
Soak up the knowledge fromreputable resources and just
talk about it with family,friends, online communities,
just everyone that you familyfriends online communities, just
everyone that you know iswilling to listen.
Speaker 1 (30:45):
This has been a fantastic conversation.
Speaker 3 (30:48):
I think it was a conversation that needed to be
had.
Looking back, endometriosisdoes not get a big enough voice
out there.
No, no, I'm glad you did this,jen.
Speaker 1 (30:57):
I'm going to close this out with one more fun
question, oh no, I'm going toclose this out with one more fun
question.
Oh no, I know, I know, bring it.
If you could eat only one foodfor the rest of your life, what
would it be?
Speaker 3 (31:13):
Chipotle.
I think we're on the sameMexican.
Just give me a plain taco orquesadilla.
I could live on that for therest of my life.
Speaker 2 (31:21):
Yes.
Speaker 3 (31:23):
Just think about it.
You can do different variationIf you ask for a taco and you
get all the toppings for a taco.
You see where I'm going.
Speaker 1 (31:30):
I was about to say zucchini or squash, but that
leaves out all the other thingsI need.
But that leaves out all theother important things I need.
So if I say, like a taco or ataco salad, that opens up way
more healthy options to keep mealive.
Speaker 3 (31:47):
I think it's funny that she went like zucchini and
we went a whole big group, likea whole ethnic group.
Speaker 1 (31:54):
Yes, we did, we did yes we did my first thought was
salmon, and I was, but my bodyneeds more than salmon.
And I was like, ooh, I reallylike zucchini.
I just can't you see how mybrain was going.
I was thinking tacos and shesaid chipotle and I'm like yes,
oh yes, I was over here being aping-pong, going back and forth,
trying to decide okay, this,this, this or this you know
(32:18):
where Tiffany and Ice Heads are?
Oh, yes, I need a taco tonight.
Well, thank you all for givingyour time today.
I think this was fabulous and Ihope it's helpful to someone
out there.
And besides all the usualplaces that we look for things,
if you're needing it, check outHistory Sisters 2.
I bet it's still around.
Yes, if you ever have questionsor just want someone to chat
(32:44):
with, our dms are always opentiffany and linea.
They're great people.
Don't be afraid, don't be shy,go say hello.
All right, until next time.
Don't forget your spoon.
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