70. Bladder Endometriosis with Megan Elliot

Welcome to Chronically The Sickest - the sickest podcast you know.

On today’s episode I’m joined by environmental scientist, Megan.

We get into cysts with hair (dermoid), faulty doctors and having to self catheterize.

Follow Megan @megwithendo

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Get extended episodes, bonus interviews + more for only $1 a month on ⁠⁠⁠Chronically the Sickest Patreon⁠⁠⁠

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Feel free to shoot me a DM if you have any questions or if you just want to chat. I’m wishing you a low pain day. ‘Catch you next week!

Episode Transcript

(00:04):
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Hello, Megan, and welcome to

(00:33):
Chronically the Sickest Podcast.Thank.
You so much for having me. I'm really, really excited.
I am so like pumped that you're here.
We've already had like a good chat before the podcast started,
so I am kind of excited to introduce you to the listeners.
I yeah, as I said, I'm really excited.
My first podcast experience. So yeah, I hope I explain it

(00:55):
well. Yeah, let's go with that.
Heck yeah. I have no doubt this is going to
be a great episode. So to start us off, can you tell
me and the listeners a little bit about yourself?
Yeah, so I'm actually based in the Uki don't know if you can
tell. I've had to put quite a lot of
lights on because it is dark outside.

(01:16):
I didn't want to sit in darkness.
Yeah, based in the Uki am 26 years old.
I went to university to do environmental science and I am
actually an air quality consultant, which sounds really,
really cool. But most of the time I work from
home and I'm on Excel or coding.I live my life on a computer.
That sounds you're right. Very freaking cool.

(01:38):
Yeah, it is. I I really enjoy it.
I finish university with not a clue of what I wanted to do and
I went into one job. I didn't feel it at all.
Went into this job and absolutely love it.
Another great thing is I work from home, so I, yeah, I love

(02:00):
it. Some people hate it.
I love it. I'm in my pyjamas most of the
time. Other than that, I I live on
Dartmoor. So in the UK we have kind of
like national parks. It's National Park, so yeah, I
live in the middle of the countryside.
It's beautiful. I love being outdoors, mostly on
my own or with my dog. And yeah, that's that's a bit

(02:23):
about me. Wow, I feel like that was a
great answer. I got to get to know like you as
a person. I know you have a dog, you look
outdoors. I know that you have a job that
sounds really cool but is in fact just spreadsheets, and I
actually kind of love that. Yeah, I, I my personality is
mostly Excel and that's about it.
You got to teach me some stuff because I swear I like learned

(02:45):
what an X look up was and it changed my life.
Yeah, just wait to hear about V look UPS then.
See, I like, OK, wow, surprise listeners.
It's actually an Excel podcast. OK, well now that we know a
little bit about you as a person, I want to ask the
question, what do you think makes you chronically the

(03:08):
sickest person you know? Probably my raging endometriosis
and it was probably quite hard to explain kind of the introduce
myself, you know, in that that first segment telling bits about
myself without mentioning my health because it's such a
massive part of my life. So yeah, that's that's a

(03:28):
challenge. But yeah, my endometriosis.
Yeah, Oh my goodness. First of all, calling it your
raging endometriosis feels so like accurate.
Yeah. Just as a fellow endo warrior,
it's like everyone's like, oh, how are you doing?
Like tell me a little bit about yourself.
And I'm like, well, this is my friend, my raging endometriosis.
Nice to meet you. Yeah, I do.

(03:50):
I do feel like it's a massive part of me.
It's just me, like, and I alwayssay like, I don't let it define
me and it doesn't define me, butit is a massive part of my life
and it makes me me now. So yeah.
Yes, what a good way to put that.
Well, now that we kind of know the topic we're going to be

(04:13):
talking about today, your endometriosis, tell me about
that journey because I mean we both know it is one of the the
longer diagnosis processes normally.
Yeah. So I want to say my diagnosis
took 15 years. I only actually got a concrete

(04:33):
diagnosis in December, just gone.
So yeah, it was a long road, butactually it was my third guy
knee surgery. So it kind of starts with, I was
11 and I had already started my periods, which looking back,
it's probably quite early because I was in kind of, well,

(04:53):
in the UK it's year 7, which is like your first year at
secondary school. Yeah, 11, quite young.
And I remember going to the doctors because I had really bad
skin and my periods were really heavy to the point that I kind
of would go to school and I'd already have bled through by the
times I got to school. And kind of when you're, I don't
know, when you're that age a child, you just expect that

(05:17):
that's normal. You just think that's what
period is. You know, every woman has it.
And you see the adverts on TV ofpeople like running and swimming
on their period, you know, like,oh, I can't do that, But you
know, yeah. So I went to the GP when I was
about 11 and I was actually put on the contraceptive pill, which

(05:39):
looking back is just insane. I was a child, I was 11 years
old. And it wasn't even like the mini
put. It was the combined pill.
So I was on that. And I have to say, like it did,
I don't think it helped. I think it masked a lot of
things. It helped my skin and the
regularity of my periods, but itdidn't help the heaviness or,

(06:02):
you know, the pain. So I just kind of like, sucked
it up and was like, yeah, let's let's just roll with it.
This is normal. And I, I want to say like when I
was about 15 or 16 years old, I remember like every day taking
painkillers at school, like paracetamol, ibuprofen.

(06:22):
And I just thought it was normalthat everyone was kind of like
in pain every day. And I didn't really associate it
with my periods at all. It was kind of like I had daily
achy pain, but then I also had kind of the bad periods as well.
So that's where that was and thought it was normal, didn't
question it. Also side note to all of this is

(06:42):
my dad brought me up. So when you kind of don't have a
mum figure, I couldn't really ask my dad.
And if I did ask my dad, he didn't know.
He didn't know what was kind of normal and what would bless him.
Yeah, You'll hear later in the story went about my art.
He's an Angel. But yeah, So kind of going
through school. Yeah.
I remember being in PE once, andI was just in the toilet crying

(07:04):
because I was so heavy. And I was just like, why is no
one else, no one else having this issue?
And I just thought I was really pathetic.
So that was school. And I was still on the combined
pill at this point. I then went to university, still
on the pill. And I started to notice some
other symptoms, more hormonal like excess hair and things like

(07:24):
that. And that's normally associated
with like PCOS and, but I didn't, I didn't have much
knowledge of, of any of this. But looking back, there was
definitely kind of like signs there that something wasn't
quite right. But also being on the pill that
I didn't know whether it was that or.
And then, yes, the end of my first year of university, I got

(07:46):
a UTI. I didn't know the best way to
say it. Urine infection.
I say being sensitive about things, but I mean, we're
talking about periods. Say whatever you want.
For them, yeah. So I got a urine infection, and
I'd never had one before. I went to the gym and I just
felt a bit like fluid. I felt, I don't feel right.
And I got home and I remember texting my sister like, I don't

(08:08):
feel right. I'm going to go to bed.
And then I woke up and I was weighing just pure blood.
And I was like, I don't think this is right.
I don't I don't know if this is a weed infection, like what is
going on? So I went to like the out of
hours emergency doctor and they were like, oh, it's just a
really bad weed infection. Here's some antibiotics.

(08:31):
Off you go. I had university exams the next
day. So I was like, I'm taking these
and just bashing out this exam. The sensation when you get a
weed infection, you know, that burning, I want to say from that
point onwards that kind of neverstopped, like that burning

(08:52):
sensation. And I just thought it was a bad
infection. So for a couple of weeks I was
just thinking this is just the infection, you know, they've
told me it will hurt, it will goand that was it.
I finished my exams at uni and Imoved home.
I lived about 3 hours away, so Imoved back home for summer and

(09:13):
that that burning sensation was that all the time.
And it was almost like I needed to go to the toilet, but I just
couldn't go. I couldn't like empty my badder
properly. And I'd never had that before.
And a caveat to all of this is I'd also been to the doctors and
I think there was definitely anxiety going on because of

(09:34):
stress and university and all ofthat, but I'd actually been put
on antidepressants. So yeah, that was, that was the
whole journey. So I went home and I went back
to the doctors and I was like, I, I feel like I need to go to
the toilet, but I can't go. I'm, I'm still getting pain when
I am going. Like there's an infection.
They took a sample and sent it off and it came back with, I

(09:56):
think it was high protein, but no infection, which reading back
means that there's damage, you know, to the bladder or the
urethras, never know the which way round they go.
But they never flagged it as anything.
So it was just on my record and no one ever brought it back up
during this. Obviously they they could tell I

(10:17):
was very anxious about I remember on my notes reading her
new development in her health. And I was like, OK, so they
changed my antidepressants because these ones weren't
working. Looking back, they weren't
working because I was really ill.
Not not anxious at all. Oh.
My gosh, crazy. It's almost like your anxiety
was a byproduct of your situation.

(10:38):
Yeah, my body being under immense stress.
So then free back and forth withthe GP, nothing really got done.
They would test my Wii every time.
No infection, but there's protein, you know, just come
back if it gets worse. I saw quite a few out of hours
doctors as well. I was put on laxatives.

(10:59):
They thought I was constipated because when they were pressing
my tummy, it's quite hard, but also not, not going.
I I went to the gym about five times a week and I had a six
pack. So I was a bit like don't have
that anymore. It's long gone.
But yeah, like it was a bit likeyou're pressing my tummy and
saying it's hard, but, you know,I'm feeling that there's
actually muscle there, you know,not that I need to go for a poo,

(11:21):
but anyway. And I didn't actually, yes, went
back and forth to the doctors. I finally went and I saw a
different GP and he was like, I'm quite concerned that you
can't empty your bladder properly.
And then he did a test, a weed test and it showed blood.
So he said, look, you've been inloads, we're just going to send
you to hospital. And I was like, great.
I was actually flying to India the week after, so I was praying

(11:45):
that nothing was wrong because I'd planned this trip for so, so
long. Went to hospital, they did a
bladder scan. So it kind of just picks up how
much liquid is in your bladder, doesn't pick up anything else.
It just kind of, the diagram is quite weird.
It has like a bucket and it justfills the bucket with water on
this little screen of how much is in your bladder.
Never seen it before, blah. So that's pretty cool.

(12:07):
She did the bladder scan and it came back that I had a litre in
my bladder, but I just couldn't,I couldn't go.
Yeah, You could visibly see it as well, like my tummy was
distended. And when they were like pushing
on it, it really hurt, like really, really hurt.
So I was, I wasn't even admitted.
I was pretty much put in a corridor and had a catheter put

(12:28):
in because they were two full typical had the catheter put in,
trying to remember the which wayaround it went, but they
couldn't get it in, like they were trying to push it in.
Yeah, and the pain, obviously you have to stop.
I can't, I can't do this. So.
But also at the same time there was blood so I knew like
something wasn't right. So they said we're going to stop

(12:51):
trying because obviously there'sblood and you're in pain and can
you just try and go to the toilet?
If you can try and go to the toilet, we can send you home.
And I was like, but surely there's something going on that.
So anyway, I did manage to go tothe toilet, but I only passed
about 150 mil. But they got a urologist
urologist to come and see me. They put it down to a side

(13:14):
effect of the antidepressants that I was on causing urinary,
urinary retention. So they said you have to stop
them cold Turkey. And then, yeah, and I was on
quite a high dose at this rate. So I was, you know, like I knew
there was something wrong with my body physically.

(13:34):
I knew it wasn't, you know, tablets or something.
So then I had to stop these antidepressants called Turkey.
I think it was quite a good thing that I was going on
holiday. The week after that, I kind of
went to India on my own. And yeah.
But never, never again. Stop them cold Turkey anyone,
please. Yeah.
So they pretty much sent me homefrom hospital with a catheter

(13:55):
and said if it happens again, you have to self castorize.
And I, I remember leaving hospital with this, like, tube
and they gave me a little thing of Lube.
And I was like, you can even do it in hospital.
How am I meant to do it at home?Yeah.
And you've not found the reason why I'm in retention.
Really. You just said it's a side effect
of tablets. Yeah.

(14:15):
And they another thing they alsosaid it could have been a side
effect of anxiety that you're like holding.
And I was like, I'm I promise you I'm not holding it because I
go on a trampoline and I weigh. So I promise you I am not
holding it. And my poor, poor sister, I'm.
I'm really close with my sistersand she, she was about a week

(14:37):
away from giving birth and we were having a heat wave and she
took me to hospital and she, I remember her waddling around the
hospital sweating. And yeah, bless her, she was,
she was a trooper that day. She saw everything.
Yeah. So I was also told I would get a
referral to urology. The healthcare in the UK is

(14:58):
NHSI. Don't know how much you know
about the NHS but. I know little.
Yeah, it's it's basically free. No one pays.
But the caveat to that is you don't really choose who you see.
You just get put on like a list of where you live and.
Yeah, the wait's kind of long, too.
Yeah, very long. So that was kind of pre COVID.

(15:18):
So the waits weren't as bad as they are now.
So kind of you would expect to kind of have a letter within
about two weeks to say what you're expected wait would be.
And that was normal. So I obviously went to India and
I came back after six weeks fully expecting there to be a
letter. Like my dad was on standby to
look for all the letters. Like when is she getting this

(15:38):
appointment? And I got back and I had
nothing. So I rang back to the GP and
then I had to make an appointment like a week later
and then go in and see them and explain everything that
happened. And they were like, yeah,
there's no referral for you. They've not made a referral.
And I was like, this is insane that this is now like what, 8
weeks later and we still don't have a referral.

(16:00):
So I then, yeah, they then made the referral and I got a phone
call about a week later to make an appointment.
And I see it as like a sign, a weird, weird sign, these things
happen. But I had that phone call while
I was at work and I answered it and I said, yeah, I'll have
whatever appointment you have next.
And this was in the August and they said the next one we've got
is in November. And I was like, Oh my God, I

(16:21):
don't, I don't think I can wait that long in this much pain.
And like other symptoms have started to happen, like bowel
symptoms and I started to be really sick.
They also put that down to anxiety.
But anyway, so I said yes to that appointment because I was
like, I, I've got to say yes, you know, I don't have another
choice. And then I put down the phone
and my boss said to me, this is at my old job, ring them back up

(16:44):
because you're not well. Like I know you're not well.
So I rang them back up and I explained I was like, no, I
don't think I can wait that long.
Is there any chance? Any hospital, I don't mind
driving and they got me seen thenext week.
So this was the first week of September in a private hospital
that was taking NHS patients. So it was a very small hospital,
but it was private. It was lovely.

(17:04):
They had a coffee machine and everything for free coffee.
I was like, you don't get this at the NHS.
And I was like, yeah, I'll take it.
Wow. A week later, like that's
amazing. So we go to that appointment and
I see a urologist and I want to say this is one of the worst
appointments I've ever had in mylife.
And this is like the first kind of, I don't know, like

(17:24):
specialist I've ever seen because I've never even really
been poorly before. I've I've always seen GPS or
been to A&E and that's about it.But I walk in and he's got his
legs up on the desk and like hisarms crossed and he doesn't even
look at me. And I started explaining what's
going on and he can see that I was admitted to hospital to have
the catheter and stuff. And he basically says that I've

(17:46):
had a bad infection as girls my age tend to tend to get and your
bladder goes into spasm And you know, that's what happens.
It will settle down over time. And I was like, but I'm still,
I'm still in quite a bit of painwhen I'm weighing like it's not,
it's, it's like the infection's not gone.
And he said, OK, well, I'll giveyou 3 months of antibiotics.

(18:07):
And I was like, right, OK. Who?
Yeah, well, we get in somewhere.I'll take it.
You know, a doctor's telling me to take three months of
antibiotics. And then I remember my sister
saying to me ask about ovarian cysts because my aunties have
had them. And she actually works in IVF,
which is a crazy coincidence of,of our lives.

(18:29):
And so she's she's a lot in gyne.
So she was like, please ask about ovarian cysts.
I'm sure you're fine, but, you know, just ask.
And I remember asking and he said a variant cyst don't run in
families. And I was like, it's a bit
strange that my aunties have allhad them.
And he wrote in the letter, which I will never forget, girls
your age tend to overthink thesethings.

(18:51):
And he wrote that in a letter that went back to my GP and back
to me. And then he put the end.
But I'll give you a scan for Peace of Mind.
And I was like, you've not looked at my stomach, You know,
you could visibly see something was going on because I, I'd
start to lose weight at that point as well.
He'd not even looked at my stomach.
He'd not even attempted to listen to me at all.

(19:15):
And I just walked down and cried.
I was like, I can't believe I'vejust been dismissed like that.
At least I got a scan out of it,but I was a bit like, wow, like
brilliant. So it's kind of my first
encounter with a, you know, medical professional that was
meant to help me. So yeah, the next stage is I

(19:37):
have the ultrasound scan. I've never had one before.
I know now that they kind of do an external one, then they do an
internal one. Went for this ultrasound scan.
I actually brought my sister with me this time, like my
little psychic, as always, went for the ultrasound scan.
And I remember within about 30 seconds of him putting it on my

(19:58):
tummy that he literally just turned the screen away.
And he's like, I'm just going togo get a doctor.
And I was like, OK, never had one before, but I think that
means that there's something there.
Yeah. And about 3 doctors came in and
started looking at. Yeah.
And I was like, oh, my God, I I'm terrified.
I'm glad that that happened on my first scan because I think if
that happened like on my 10th ultrasound, I would have been a

(20:20):
bit more panicked. But it was that point.
He said, you know, you've got noa cyst.
We don't know where it's coming from, but we think it's your
ovary. We're trying to measure it, but
it's looking at least about 10 centimeters.
And I was like, OK, I didn't. I had no idea what any of that
meant. Yeah.
And he said, look, if you look down at your stomach, you can,
you know, you can see it becauseyou've lost so much weight.

(20:41):
And as I let down, my stomach was literally like that.
You could see the whole cyst andyou couldn't.
It was really great. But you could like move up
around. The weird thing is though, like
the pain wise, I had less pain when I had my cyst then I had
like on my periods and stuff which is so annoying.

(21:02):
Like it's so so annoying. I came up with a scan and my
sister who you know works in IVF, she's like what?
And I was like completely glazed.
I was like oh I've got a cyst. Like, you know, everyone gets
what we talking about. And then I remember her
literally like batting me away and going to find the doctor.

(21:24):
She's I'm going to speak to him,like move out the way.
I need to go. Good job, sister.
I need to know. She was like, well, where is it?
What's it coming off like? You know, we need to know these
things. So yeah, that happened and they
it was pretty much a whirlwind. Then they were like, you are
seeing a gynecologist next week,we're going to get you in.
You'll see need surgery. And I was, I remember just
sitting there and like not, you know, movies when like you get a

(21:46):
diagnosis and you're just not taking anything in.
It was like that. And it was like a really out of
body experience that really strange.
And I think that whole period from the September to the
December when I had it out, it was like that, that every kind
of hospital appointment I went to every, I had an MRI as well.
It was like, it wasn't me. It was the weirdest experience.

(22:06):
So, yeah. And I think the thing that they
kind of played down a lot, and Ionly really realized once I got
all of my notes back is that I was put on the cancer pathway.
And because the cyst was a dermoid cyst with a blood
supply, yeah, they they weren't happy with what it looked like
on the scan. So I was put down the cancer

(22:27):
pathway. And none of that was really
communicated to me at all until I had the surgery.
And then they were like, you know, we've sent off to
pathology. It's got no malignancy and all
of that. And I was like, hang on.
Like, I didn't even know that that was going down that route.
Like it was a it was a big shock.
And I think a lot of the processing and therapy
afterwards was like processing that and realizing that I was

(22:51):
actually a lot more poorly than they were letting on.
I think they doctors have a tendency to downplay things a
little bit when they're like, oh, you're fine.
Like, what's a 15 centimeter cyst?
Absolutely fine. So yeah, by the times I had
surgery, I my incision had open surgery is 15 centimeters, but
he had to drain half a liter before he could get out of the

(23:14):
incision. So he he thinks it was bigger
than 15 centimeters. OK.
Can I for the listeners for reference, like I've had a 5
centimeter cyst that is the sizeof a lime.
So yours was at minimum a size of three limes, probably more.
Honestly, you're probably it wasprobably like 25 or so.

(23:37):
It's it's mental to think like it was pretty much like a baby,
like the weight of it, because it had hair and, and stuff in it
as well. If people don't know what
Dermoy's sister is, yeah, they're gross.
They're yeah, not pretty. So.
And I had a lot of pregnancy symptoms.
Like, I think that was another like a weird thing that was kind

(24:00):
of hard to deal with is, you know, you lose your over and you
lose your tube. But I felt pregnant the whole
time. Like I was really sick.
The indigestion I had low iron. The dizziness.
Yeah. And it's really ironic, like,
you know, this thing is going totake you over in YouTube, make
you feel really pregnant. So yeah.
Yeah. I mean like you said it had a

(24:21):
whole blood supply like your body literally was trying to
grow this. I know.
So I feel like I need to share it.
We named it in my family. So the day we had the
ultrasound, it literally sounds like a pregnancy, doesn't it?
The day we had the ultrasound, we went for coffee afterwards,
me and my sister, and we were just looking around the shop and

(24:41):
she was like, what about Cyril? I was like, yeah, let's name it
Cyril. So Cyril, the cyst, that's what
it was called and my surgeon even wrote in my notes it was a
serilectomy and it just, it mademe.
Laugh so much. So yeah, that's like the first
part of my story, like the the cyst, the removal kind of like
that was my first surgery. It was open surgery.

(25:03):
The recovery was tough as your first surgery goes to have a big
old open one. And and that was in 2019.
I then had that surgery. I was recovering and I pretty
much didn't stop having a period.
I had a period for about 3 months and they said it can
happen as a side effect of losing your ovary and I was like

(25:25):
brilliant. But I was on the combined pill
at the time so they were a little bit confused that the
pill wasn't doing anything. And I'd been on this pill for 10
years. So I was like it's really
strange because I've never had an issue with this pill at all
and then suddenly I'm bleeding alot.
So that IA lot of back and forthwith the doctors.
I was put on like another mini pill on top, a few different

(25:46):
options and eventually they werelike, like try the coil, which I
had the coil inserted and Oh my God, they don't, they don't numb
you. They don't prep you for what
it's going to be. If that was any male, you know,
procedure, they would be put to sleep also like in IVF and all

(26:09):
of that side of things. You're numbed for that.
You're put to sleep. You don't have any of that
without anaesthetic. And yeah, a coil.
They just go broad argument. Yeah, it is brutal.
And it was COVID at the time, soI had to go on my own.
And my experience for hospitals wasn't great.
Let's let's face it. And then I was on my own and I

(26:31):
fainted when they had it done. Yeah, I just remember screaming
and then pass out and this nursejust holding me.
And I was like, thank you, thanks for holding me.
See, I had the coil fitted. It didn't really stop anything.
It it made the periods lighter, like I will say that it made

(26:52):
them lighter, but it didn't stopthe pain.
I then also started to get ovulation pain and since the
first OP, my ovulation pain was more painful than my period.
Yeah. So I had my coil fitted a lot of
back and forth. Pretty much every couple of

(27:13):
months I would go back to the doctor like I'm not right.
I'm not well, I had ultrasounds done.
A couple of them showed cysts onmy other ovary, but they they
were kind of simple cysts. The Max was like 5 centimeters.
So I'm like, we're not bothered.It will just pop.
Which is still wild because cystpain like when it bursts is
probably the worst thing I've experienced.

(27:33):
I've had a literal hysterectomy,so.
Yeah, this is what I said. Like, I can feel it when it
pops. And they looked at me like I was
insane. They were like Nikon.
I was like, yeah, I can it. It feels like someone is
stabbing you and yeah, it's raiding down your legs and like,
sick, yeah. Oh, I threw up and passed out
when mine popped. So like I you got, oh, it was

(27:56):
where did these doctors go to school?
They didn't study women. That's what it is.
Right. They were like, well, men, Men
don't have any pain when they'reovary and cysts pop and you go,
right. No, no, no.
Say it again. Look at me.
Say that again. What?
Actually, it just always makes me laugh though, when you like,
go to hospital, whatever, and the first thing they check is
your appendix. And every time I'm like, guys,

(28:17):
it's not my appendix, it's my ovary.
But they got to check it becausethat's what men have and you
know. No, the amount of times I went
into the ER and was like, I am in the worst paid of my life.
And then they just, you know, they do a scan and they go,
that's just your ovarian cyst. And then they send me home and I
go. So that was it.
Like they're nothing else. We're just going to be like

(28:40):
sucks to suck enjoy, enjoy. Sorry continue.
OK so you you have somovarian cysts but it's OK hear me out.
I know y'all have food allergies.
This is a chronic illness pod. I am aware of my audience.

(29:02):
You're gluten free or dairy freeor something free or who knows,
maybe you just got diagnosed with gastroparesis.
What I do know is that belly baking mixes are yummy and all
the bad things free. Plus they were made with
collagen and other vitamins, meaning they're not only not bad

(29:22):
for you, they're good for you. Click the link in the
description to try them out and get 20% off with code sickest on
me. The brownies are bomb by the
way. Y'all.
Literally my favorite now that Ithink about it.
I may go make some right now anyway.

(29:44):
Yeah, they're just normal. They're like simple sis,
functional sis. And they're like, they'll come
and go. They're common with the coil.
There you go. And I was like, brilliant.
I was like also to the fact thatI actually only have one ovary
now, like are we not going to try and stop something happening
on the other one? You know, that would be great.
This back and forth went for a long time.
I remember seeing a gynecologist.

(30:06):
Pretty much the way it works here is that you see your GP,
they refer you to a specialist and I've pretty much got like a
like monopoly. What's that get out of jail free
card. Now that I just get referred to
a gynecologist because the GP looks at my nails and they're
like, I ain't dealing with her and they pass me on.
So I've pretty much seen every gynecologist, you know, in our

(30:29):
area. I saw one and he ironically now
is working at the endometriosis center.
And I've already said I ain't seeing him.
But I walked in and very much like the urologist didn't look
at me, was too busy looking at his nose.
He was like, we've got the coil.So, you know, and I was like,
but but what I'm saying is theseissues aren't stopping.

(30:52):
If anything, they're getting worse.
So can you help me? I showed him a photo of like my
endo bloke. So I know everyone gets it a bit
differently, but like mine, it'slike a rock hard ball, right?
Like my tummy literally goes like that.
Like I'm flat, flat, flat. And then right in my pelvis it's
like a hard ball and it looks like a bee.
So I showed him a photo and he said I think you swallow too

(31:15):
much air when you eat. Yeah.
And I was like, but surely if itwas like gastro it would be like
either my upper tummy or like mywhole tummy, it wouldn't be a
rock hard lump in my pelvis. So he passed off his IBS and
wrote all my notes, thinks it's IBS, which I'd already gone

(31:36):
through with my GP and tried every medication under the sun.
And ironically, at the same time, he actually prescribed me
progesterone, which I was a bit like, if you don't think it's
gynee, why you prescribing me progesterone, Huh.
So I didn't really know at the time.
I didn't endometrasis haven't come into the picture at all.
No one had ever mentioned it to me.
I hadn't really thought about itbecause I've purely thought it

(31:57):
was cysts that were causing likeall these issues.
Anyway, discharged, nothing changes.
So pretty much six months later I'm back with another
gynecologist. And this was a lady and she
seemed really promising at the start.
She was so thorough, really listening to me.
She ordered like bladder testingand like the flow dynamic stuff.

(32:17):
I don't know if there's a propername for it, there probably is,
but you have kind of a camera put into your bladder and stuff
and just make sure that it it's all fine.
That was brutal. But I knew that like something
didn't feel right still from that reinfection, like it just
didn't feel right. And I have a lot of
incontinence, like a lot of likestuff like that just wasn't
adding up. So she did that and it came back

(32:38):
fine. And I was like, great, another
test, that's clear and you don'thave an answer.
So then she said about the possibility of endo and offered
me a lap, which I was like, yes,finally, like please go ahead,
do it now, right now. So she was really positive and
fine and I hadn't done a lot of research on it and she was a

(33:01):
normal gynecologist, which looking back, I probably should
have gone to an endo specialist.But yeah, when someone offers
you something and and is believing you, I jumped at that
chance. I was like, yeah, do the like,
please. So I only had to wait about four
months for this operation, whichis in NHS terms is insane.
But you never get an operation that quick.

(33:22):
And again, this was at this private hospital that I'd had my
first operation at. So I was like, it's a sign, like
I'm back at this really tiny hospital that I had my first op
at and they're going to find what's wrong with me and going
to fix me. So comes around to the operation
and obviously in the morning, like before the op, you speak to
the surgeon and the anaesthetistand, and all that.
And she came in and like, again,barely looked at me.

(33:45):
It was just looking at her nose.And she was like, like, you're
nervous. I was like, yeah, you know, I
am, I'm just about to have an operation.
And then she goes, you know, I don't think we're going to find
anything, but I'll do it anyway.And I was like, sat there, like,
why are you doing the operation then?
If you don't think you're going to find anything, then why are
you doing it? And secondly, why are you going
in with that attitude that you're not going to find

(34:07):
anything? Because if you go in with the
attitude, you're probably not because you're thinking that.
So yeah, I have the art. And the first thing I ask as
soon as I wake up is what did they find?
And the nurse said to me she waslike, oh, they found some scar
tissue and adhesions, but nothing else.
And I was like, OK, like a bit disappointing.

(34:28):
I thought, you know, they would have found something.
I was like, I just knew deep down that there was something
wrong. So yeah, she comes and speaks me
and she says, yeah, just scar tissue and adhesions.
There's quite a lot of like bands of adhesions of, of things
stuck together. And I was like, oh, OK, yeah.
And she was like, it's probably as a result of your first
surgery. And I was thinking my first

(34:48):
surgery, they opened me up, tookmy cyst out and closed me up
again. They didn't look around, they
didn't do anything inside. And that's like exactly what my
first surgeon was saying to me is we're literally going to take
everything out. The reason why he drained it and
didn't do keyhole or anything isrisk of adhesions.
He wanted to do an open surgery,take everything out and do it.

(35:11):
So anyway, that kind of passed and I knew within six months
also actually sorry, in that surgery she said that she had
burnt some of the scar tissue away that she thinks was causing
me pain. So I was like, OK.
No. I know I'm looking back now.
I'm like, why did I have that surgery?

(35:32):
Why? Yeah.
So she said that she burnt it away.
Adhesions and off I go. Six months later, I was back,
probably even worse than when I was before.
And I was like, this hasn't worked.
This hasn't given me any relief.So I'm back at the same hospital
and I, I saw a different surgeon.

(35:55):
I don't know how many surgeons there are in Devon where I am,
but I've seen them all. So I saw him and the first thing
he says to me as soon as I come in, like I think as well, we're
also used to rushing in to a hospital appointment with all of
our notes and we want to say everything because no one ever
believes us. And I was so ready to do all of
that. And the first thing he starts
asking me is what do I do as a job?

(36:18):
You know, what are my hobbies? What dog do I have?
Where did I go to university? And he actually was just having
a normal conversation with me. And I was like, wow, who knew
the doctors could actually speakto you?
So yeah. And then I start to explain to
him, like, the ovulation pain, the irregular periods I was
having really irregular periods at this point, all the other
symptoms, fatigue is one of my worst symptom.

(36:42):
Really struggle with that the the constant simple cysts.
There's so many symptoms I can'teven like remember them all
headaches like that sort of thing.
I get a lot of back pain as welllike in my flanks and obviously
the bladder symptoms, the pain down my legs and he was like I
want to go back in. Side note to all of this is I

(37:03):
actually ended up in A&E about two weeks prior to this
appointment because I was in thegym doing a hip thrust and I
literally felt something part and I was horrendous.
And then I literally just bled so much.
I managed to drive home and I got in the bath and I just
remember seeing so much. I was like, I think I need, you

(37:27):
know, when you get those points where you're like, I think I
need to go to hospital now. Like there's certain points
where you know, you can manage it.
And then this was something completely new that I hadn't had
before. And I was like, I need to go to
hospital. So when they scanned me, oh, we
think it's a pop cyst. And I was like, ah, funny that I
could have told you that, but had quite a lot of fluid, like

(37:49):
around everything. And on my left side where I
don't have an ovary or anything,they could see like bands of
adhesions. So you could actually see that
on the ultrasound and there was fluid sat in these bands.
And I really think that if I hadan ovary, I don't think they
would have seen it. So because the ovary wasn't
there, I think they could see itmuch clearer.

(38:11):
So anyway, I go to this appointment with this surgeon
and he sees that scan and he's like, I need to go back in.
Like something is going on. And I was like, yes, you believe
me? Thank you so much.
So I then that was in last summer.
I had pretty much the same symptoms where they, I would say

(38:31):
they were getting worse, but they like you just kind of crack
on, don't you? There's not a lot you can do.
So you just kind of like battle through it.
But I, I knew that I had surgerylike coming up.
So that's what I was pushing for.
So I had surgery in December andI remember talking to him before
I went in and I was like, look, I'm so scared because of what

(38:53):
happened last time that I'm going to wake up, I'm going to
have another surgery and I'm notgoing to get an answer.
And he assured me that he was like, you know, we've got an
ultrasound now. At least there's adhesions,
which if we don't even find Endo, I'm going in there to sort
those adhesions out properly because he was going to do
excision he wasn't going to do. Ablation.
Ablation. And I knew at that point, like

(39:15):
this guy knows what he's talkingabout.
He's the real deal. Yeah, because he also explained
to me, because obviously I was on the coil and progesterone at
the same time, and it appears differently.
It can appear clear, it can appear white.
It can be so hard to spot, especially since I've been on
hormone since I was 11. Like it's not going to appear
the same as someone that's not, you know, on birth control and

(39:36):
also not on as much birth control as me because I was on a
lot. So he went in and I woke up and
I know the tricks of the trade, that if you have more incisions
than planned, then you know, they've probably found
something. Hmm.
So I woke up and I the fact I didn't want to ask the nurse
because I didn't want to be disappointed.
So I was just there just chilling.

(39:58):
And then about half an hour later I was like, how many
incisions do I have? And then she's like, oh, you,
yeah, you have 4. And I was like.
OK. And I knew at that point that
they found something because sheonly did two last time, so I
knew. So yeah, he came and spoke to me
and he was like, yeah, there wasthere was Endo.

(40:19):
They actually did an incision upunder my rib which I've never
seen before. Yeah.
He said because she went in my belly button last time and like
burn all of that scar tissue, hedidn't want to go back in there
because he was like, it's going to be more scar tissue, more
adhesions and it's not worth it because he went up under my rib,

(40:39):
which I'm glad he did. Yeah, I know a good surgeon
because apparently I had endo upfrom my like kidneys down to my
bladder, those tubes which is onthis side.
Yeah. So yeah, I had endo there and
then my pouch, Douglas. Yeah.
Pretty much all around. Like I don't know the medical

(41:01):
terms at all but like between myleft side, my right side pouchy
Douglas and and my ureters whichwould explain all the bladder
symptoms. Yeah.
Yeah, that's pretty much where we're at.
Then I got kind of a diagnosis. Yeah.
I mean, in the UK you get diagnosis and then I was

(41:24):
immediately discharged because they see it as you've had an
operation, you're fixed. They see it as excision surgery
gets rid of endo. It's so behind in the fact that
I already know that the endo's not gone.
Like some symptoms are better, but it's not disappeared.
Yeah, if you. Actually talk to someone with
endometriosis. It's like, oh, have you?

(41:46):
Like how many excision surgerieshave you had?
It's never just like, oh I had one and I'm fixed.
Yeah, like I'm magically better.So I went back to my GP pretty
much four weeks after my ARP andI was like, I'm not better.
She was like, you've just had major surgery, like can you
chill out? And I was like, but I'm like, I

(42:06):
just know I'm not better. Like I know my body and I know
what's recovering from surgery and what's like endo.
So yeah, I like, I really wish you go into surgery thinking, my
God, I might get relief like from something.
And yeah, it's been AI think thebiggest part of the post surgery
process is like the mental processing of you don't really

(42:27):
get better. It's just a different stage,
like you have a diagnosis, you have an answer and it's now
about managing that. But yeah, I've been really lucky
that my GP is amazing. I saw her, yeah, end of December
and then in January, well, I've pretty much seen her every
month. She wants me to see her every
month. And I was like, OK, she came and
gave me a hug and she literally said to me, it's really shit,

(42:49):
isn't it? And I was like, it is.
So, yeah, she's so lovely. She's referred me now to an
endometriosis centre. Unfortunately, the waits are
very long. But she said, I just want you to
be under their care. That like, there's no point
seeing a normal gyne, you know, we don't want that to happen.
We don't want any more ablation surgeries.
So yeah, that's a good summary of my story.

(43:10):
There so much more. But I'm hope I didn't take up
too much time. My goodness, that is my
goodness. Sorry, my brain is just.
It's mental because when you like see doctors and and stuff
or even talk to other people with that kind of chronic
illness, they're like, that's somuch, like you've been through

(43:31):
so much. And I don't feel like it is.
I feel like, I think when you know what, like this is my life
now. Like, I know that I'm probably
going to have to have more surgery or there's going to be
more medical procedures that I'ma bit like, yeah, you know, it's
taken a lot of therapy to get here, but, you know, you've got

(43:52):
to process it in the right way, so.
Right. Yeah.
I mean, that makes sense. And I think that's a really
healthy outlook on it is to be like both positive and realistic
of like, yes, like we got my diagnosis, this is great.
And I can acknowledge what I've been through and also

(44:12):
acknowledge that I'll probably go there more.
Yeah, but it also is really rubbish.
Like sometimes, you know, I remember when I got the letter
to say that my cyst wasn't cancerous and everything and it
was such a relief obviously, because I didn't have cancer
and, you know, it was all gone. And I remember someone saying to

(44:33):
me, oh, but you should be so happy that it's not cancer.
And I'm like, but it, I've stillhad the same treatment.
I've still gone through the sameprocess.
I am still allowed to be sad. I've lost my ovary.
You know, I wasn't expecting to lose my ovary either.
And it was kind of, I woke up from surgery and it was a bit
like, oh, we had to take your ovary.
It was a mess. And I like things like that is
I'm still very open that like, you're allowed to be sad.

(44:55):
You're allowed to find it hard. Like it is really, really hard.
But I think that positive outlook has changed me so much,
definitely. Yeah.
Also, I don't know why, but hearing you say that it's
rubbish in a British accent feels accurate.
More accurate than me being like, it's shitty, you're like,
it's rubbish and I'm like, yeah,yeah, correct.

(45:16):
Yeah, yeah, it is rubbish. There you go.
Oh, this is great. I'm gonna like, I want that to
be my ringtone. Thank you so much for sharing
your story because I mean, even just hearing it, I'm like, holy
guacamole that is so long, like 15 years from the start, being

(45:38):
on birth control at such a youngage and then literally just
going through all of these surgeries just to at the end be
like, hey, we figured it out. I mean, it took us years and
multiple surgeries, but we figured it out.
And yet you're still, like you said, in this place of like,
yeah, I guess we figured it out.But now I know that I have to do

(46:02):
this again. Yeah, and I think as well,
especially in our kind of process of how we do things is
they gave you a diagnosis, great, you discharged, you know
if it, you know, if you get symptoms, you have to start back
at the beginning, you have to start back at your GP, you have
to go back to Gyne like all of these processes.
And I emailed the endometriosis clinic to gauge, you know, their

(46:26):
wait times because I'm also curious that I'm not feeling
better. And it would be great to speak
to someone post surgery, you know, is this normal post
surgery recovery? You know, what should I be
doing? And the e-mail I got was quite,
I don't know. I knew it was coming, but it was

(46:46):
a bit of a shock reading it. And it was the wait times are
quite extensive. We only have one surgeon in the
whole of the Southwest. And yeah.
And I look on my, we use an app and it says minimum 22 weeks,
which is like 6 months. And that's just the wait list to
get on to like the appointment list.

(47:06):
So you're just like, yeah. It's just endless bureaucracy
when you're sitting here in pain.
Yeah, yeah. And it's just a daily pain as
well. I'm so used to it, as most are,
that kind of when you go to appointments, I forget to
mention those things because you're so used to those sort of
pains and niggles that you just don't mention it and you just

(47:30):
brush it off like, yeah, that's normal, it's fine.
Yeah, yeah. OK, first of all, that sucks and
I don't know how else to expresshow I feel, but I am like
righteously mad for you. I mean, obviously for other
people too. But Speaking of that daily pain

(47:53):
and like where you are at now post surgery, tell me a little
bit about like what tools you'reusing to manage your symptoms or
like any tips and tricks. You know, I know you mentioned
that you're in therapy to kind of like process through this
kind of stuff. I always think that's a great
tool. But like what else can you share

(48:13):
for maybe some other endo warriors?
Yeah, so probably touch on therapy first.
I know I've mentioned it, but ithas been life changing.
I think people see therapy as something that they should do as
a last resort, at breaking point, at, you know, when you're
at your worst, which is what I did.
You know, I was, I couldn't copebeing I was diagnosed with

(48:36):
anxiety and depression as well. But with the mix of everything
else going on, it was very understandable.
And I, I found therapy and I tried other things as well, like
CBT and kind of group therapy sessions.
And but counselling was, was thebest thing that worked for me.
I had counselling for five yearsand I recently stopped.

(48:59):
I missed my therapist because she was, she's bestie.
We still speak regularly and it's very much of I'm at a place
now where I'm so much happier and more comfortable with it.
But if I needed to go back, I could.
But I think therapy, it's not what people expect.
It's learning about yourself andhow to manage things.
And I think that's why I have such a positive outlook on it.

(49:21):
And that can massively help chronic pain.
But it's also very well sitting here and saying go to therapy,
it helps with chronic pain when you are in pain every day and it
is so hard and it's not easy. And sometimes getting to therapy
in itself when you're in pain and bleeding, it's not easy.
So I completely appreciate that.And I don't want to sit here and

(49:42):
say it's amazing and everyone should do it when it's not that
easy and accessible. So yeah, definitely caveat that.
But the other tools, a massive 1for me is, and I know there's a
lot of like controversy around it, but a diet.
So I don't have any dairy. I was intolerant as a child and
then weirdly when I had my cyst,it came back and I don't know,

(50:05):
yeah, it was really strange. I had a lot of gastro symptoms
with my cyst and I assume it like everything pushing around
and and whatnot. But the dairy intolerance came
back and then it never, it neverleft me again.
Darn. So I'm dairy free, which I do
think a lot of people do anyway because like inflammation and
things like that. Same with gluten and and

(50:26):
whatnot. Other things I do with diet are
really trying to eat a lot of fiber.
It sounds so simple, but just with bowel movements and things
like that. I drink a lot of like green teas
and I love coffee. I love it.
But I do limit myself to two a day also I do.
So that's kind of the food side of it and food and drink.

(50:47):
I also don't have alcohol. It was a massive thing for me
mentally, kind of. I found out through therapy.
It just alcohol with anxiety andhow it makes me feel and it
massively, massively flares my bladder.
It will actually hurt my bladderfor days and days.
The day after is the worst. Even if I have a couple of

(51:07):
drinks. It's like, it's, I don't know,
like really tense and it just hurts and it's yeah, it's really
strange. So I don't have alcohol.
Occasionally have one or two, but it's very, very rare.
I'm a really fun 26 year old that doesn't have dairy, alcohol
or drinks. Green tea.

(51:29):
Yeah. So moving on to other things.
I'm quite lucky that my GP advocates for me very much with
pain relief. They have pretty much said what
I'm comfortable with, I can try,so I don't.
I'm one of those. I don't like to take tablets
very often, but there are certain cases where you need to,

(51:51):
you know, so, yeah, pain relief.Some people don't like it, you
know, it's one of my top ones. If you need it, you need it.
What can? You do?
Yeah. Other than that 10s machine,
yeah. So I got a 10s machine last year
and I really like it. It's weird because I feel like

(52:13):
when you have different types ofpain, like period cramps versus
kind of the stabbing ovulation pain versus the achy pain, the
pulling pain, it will only work for me on cramps.
If I've got other pain it won't work.
So that's a bit annoying. My favorite I've actually got on
now is my heat pack. Same.

(52:36):
I've got a rechargeable heat pack which is just great.
I'm going to get another so I can have one on the front and
one on the. Back Yeah, that's that's a good
tip. I think it's all like working
from home, Like I pretty much have it on all the time.
Yeah. It's so much easier than a hot
water bottle. It gets so much hotter and it
stays hotter for longer. And it's safer because water

(52:58):
boiling, you know. OK.
Can I ask you something? Yeah, have you?
I like what I'm asking with that.
Like this isn't a interview podcast.
Have you ever tried the like hotrice sock thing where you fill a
a sock full of rice and then heat it up?
It stays hotter than like a hot water bottle I found, but it
it's technically portable as I take it to work with me and heat

(53:20):
it up in the microwave. That's really interesting.
A fun fact is I don't actually own a microwave.
What a life to live. I know we we moved three years
ago me and my partner bought a house and it's just something we
never bought. And now I feel like I'm too far
in. I can't now buy a microwave.
I've I've committed to the no microwave.

(53:41):
Life, of course, and you have your rechargeable heating pad,
so who cares? Exactly.
Yeah. But that that's interesting
though 'cause I know that they do like wheat packs and there's
like a pea one as well, I think.Right.
I've heard of that. Yeah, those ones.
Yeah, I've heard of ones where it's.
Yeah, I don't really know exactly what's in it, but yeah,
it's like little beads. And then some of them are like

(54:01):
scenteds. That's like lavender.
And it'll relax you as you cry because of your cramps.
Yeah, while you're in a bowl on the.
Floor. Yeah, right.
You're like, but I smell really good.
Yeah, I remember so sweet. People like sent me soft post
surgery and someone sent me likea lavender pillow spray and I
was like, that's really sweet but beautiful.

(54:22):
That's not going to help when I'm in pain.
I'm not going to take any notice.
It's a nice thought. My partner will smell it and be
like it's lovely. Anyway we digress.
What else helps me? Potsies, listen up, we both know

(54:44):
that precinct could be sucks fainting to passing out when
you're alone though, that is 2 thumbs down.
It's so nerve wracking like whatif I pass out and hit my head or
I start getting dizzy while I'm driving?
Am I gonna be safe or just in general am I gonna be safe as a

(55:04):
disabled woman? That anxiety, that is what gets
you. But I don't have that anymore.
Well I do have anxiety. I am an OCD girlie but not about
passing out or my safety becauseI just click my Invisi Wear
necklace and both my family and emergency personnel are alerted.

(55:26):
The dizzies are scary no matter how many times it happens, but
knowing that I have a backup plan is what makes me feel a
little bit better, so maybe that'll help you too.
Using code SICKEST for 10% off on your Invisi Wear purchase at
the link in your description is an option.
Sending you salty vibes. Okie dokie.

(55:47):
Anyway. Honestly, I think it's he, I
think he I've changed throughoutthe years though.
It's it's like last year was probably my 10s machine because
I got more cramps and kind of the stabbing pain.
Whereas this year I'm more on the heat.

(56:08):
It's more of the dull ache everyday.
Yeah, I would say that I would be interested to know that kind
of what else everyone else, you know, loves because I feel like
I don't have many options. 10s machine heat pain killers.
There we go. Well listeners out there fellow

(56:30):
pelvic pain people, feel free toreach out to me or or Megan with
your tips and tricks. Definitely I do, I feel like
this is so stereotypical Britishbut every anyone that is British
will know a cup of tea. I knew you were going to say
that. A cup of tea.
And I had to say it, I had to because every time I woke up

(56:52):
from like my OP or anything, thefirst thing I had was a cup of
tea. And really, yeah, it's like you
wake up in hospital and there's just a cup of tea.
So that's that's what happens. I had Chick-fil-A after my
surgery. We're different people.
Yeah, so if you're British, it'sa cup of tea.
Fixes everything. I will say actually, OK, I use

(57:17):
Willow bark tea so it OK 'cause I don't, I'm not a huge tea
person. I, I will drink like a tea latte
every once in a while, but Willow bark tea has the same
property as aspirin. So it has acetacilic acid in it.
And so you can literally make a pain relieving tea.

(57:39):
So I don't know if that would help you because I feel like,
like you said, you love your little cup of tea and obviously
it's pain relieving. So I feel like that could be two
birds, one stone. Yeah, I've got to try that.
That's that's mind blowing. Yeah, that.
Sorry, you were just saying you.I was like, you're right. 10s
machine heat. I was like I don't really know
what else I use besides like just crying but.

(57:59):
Yeah, bath. Actually, I do sit in the bath.
I had a bath earlier. I was like, it's midday on a
Saturday. You know what I'm going to do?
I'm going to sit in the bath. That sounds delightful.
Do you do like the little you ever do like one of those
self-care baths? You know, you do a little like
bath bomb or like some some candles and you're like.

(58:20):
Yeah, like I do kind of like salts, bath bombs, that sort of
thing. I try and to be fair, every bath
ends up having everything. Sprinkle that in there.
Please take some pain away. I know I would be interested to
hear. I know some people use like
Epsom salts and things like that, but I think that there's

(58:42):
certain ones that help more withpain relief, so I'd be
interested to hear about that. Yeah, I think some people use
like essential oils and stuff, which I would definitely been
interested to know. Yeah, I always get scared
sometimes when people are like my sent to oils like healed me
and I'm like, I don't know that I believe you.
I know my partner sent me this screenshot and it was like my

(59:04):
eating a raw carrot a day cured my endometriosis and he sent it
to me and I literally applied. I was like please he was joking.
He knows that. That's not going to kill my end
though, don't worry. And I think you can shove your
carrot, you know? I don't want that.
Yeah, that's an accurate response.

(59:25):
Yeah, I do find though that since kind of starting my insta
and everything, and I also kind of sound really bad because I
don't know the name, but I read a book about Endo, she's called
Bridget, I think the author. And it's very prevalent that
people try to sell you a lot of things that will cure you or

(59:47):
make you feel better. And it it just does highlight
the fact that people do prey, you know, on people that are
seeking an answer or some reliefin any form.
So I think that's why I'm quite conscious, you know, in relief
methods. I pretty much just stick to what
I know works. And I wish there are probably
more things out there actually that will work.

(01:00:10):
But when people prey on it and want to make money out of it,
I'm a bit like hesitant to. Go for it.
I, I completely agree. I Oh my gosh.
OK, we when we hop off the call,you'll have to send me what book
that is because I have a whole, a whole bookshelf behind me of
just all chronic illness and like mental health books.

(01:00:30):
So I would love to add that to the collection.
So good because I stupidly booked a holiday before my OP
dates because I did. Doing that.
I didn't know when my operation was going to be, and we had
planned to go to New York for Christmas and it had fallen
three weeks after my op and I thought, I can't cancel because

(01:00:52):
this is a dream. I asked the surgeon and he was
like, yeah, you're just not going to be as lively.
But on the plane, I listened to that book and I think it was so
prevalent as finally being diagnosed and actually having an
answer. Because I think before getting a
diagnosis, I was really hesitantto kind of read any books or,
you know, follow any Instagram pages or even start my own

(01:01:12):
Instagram page when I hadn't hada diagnosis, even though I knew
there was something wrong. It's so hard without that answer
that you're not like cheating yourself or jumping the gun or
anything. So I think that was kind of the
first thing that I I read and listened to when I had a
diagnosis and it just hit so much differently.

(01:01:34):
Yeah. Oh my gosh, that's such a
relatable experience. I'm sure the listeners are going
to get that because you're right.
It's hard to be like, I'm a partof this community when you're
like, I'm not really sure I am. Yeah, especially after having
one surgery and them saying no you're fine.
What are you talking about? Yeah, it's all in your head.
It's just anxiety but also get off of your medication but also

(01:01:57):
you're depressed but also none of it's real.
Yeah. OK, Speaking of your Instagram,
I kind of said it before we started recording, but I am in
love with your page. Like I love the color scheme.
It is so informational, but it'salso like a lot of your personal
experience. And like I said, the colors are

(01:02:19):
cute. So for the listeners who would
maybe like to go check it out, where, where can they find you
or can they chat with? You.
So it is actually Meg with Endo.OK, love that.
And if you would like to hear the fun little story behind
that, listeners, you can go to the Patreon where you get the
uncut version of this episode. Yeah, enjoy that little little

(01:02:43):
plug. If you wanna, if you wanna pay a
dollar, you can hear all the stupid things that I cut from
this episode. OK.
Oh my gosh, Megan, this was likethe best episode.
I feel like a lot of people are gonna relate to it because it
was such a journey to get to where you are.
And also like a dermoid cyst is like so freaking interesting to
hear about. Horrible for you, but very

(01:03:04):
interesting. Honestly, I, I I did get photos
of it, but I I wish I could haveseen the pathology like I wish I
could have seen inside it. So gross.
I asked to get my uterus in a jar after my hysterectomy and
they wouldn't let me. I have pictures behind me but
like I wasn't allowed to take ithome.
I'd be gutted. I'd be see.

(01:03:26):
But like, that'd be so cool to be like, this thing.
Yeah, has ruined my life. Look at it.
It sits on a, you know, it's like a trophy, like those weird
guys who hunt things and put them on their wall.
Yeah, I I really want it, to be honest.
I really want it my cyst, but had to go to pathology.
It could be cancer transact. It could be, but the cancer
isn't going to touch me if I touch like I'm not going to
touch. It yeah, it can live in a jar,

(01:03:47):
yeah. A girl in my own heart.
I did keep my wisdom teeth, so yeah.
Oh see, I don't my dentist. I don't like the dentist, but I
don't think he liked me either so I don't think I would have
been able to keep my teeth. He's probably got them at home.
You know what? I like that.

(01:04:07):
OK, well, Megan, thank you so much for being on the podcast.
I really enjoyed chatting with you listeners.
That is all we have for you. Please go follow Meg on
Instagram and see her cute little page.
But otherwise I'm Clark. This is Megan and this has been
Chronically the Sickest podcast you know.

(01:04:33):
That's all folks. Thank you so much for listening.
If you liked this episode, clickthat follow up button on your
podcast app of choice to get notified.
Every other week. You can find the podcast on
Instagram and TikTok at Chronically the Sickest Podcast.
Let me know if you have any questions or just want to chat.
I love hearing from y'all. Until next time, I'm Clark, and

(01:04:54):
this has been Chronically the Sickest podcast you know.
Disclaimer, this is a conversational podcast and while
we make sure our diagnosis journey, symptoms and treatment
plan, this is not medical advice.
If you have any questions regarding your health, please
reach out to your doctor and have a great day.