Latest / Unbalanced with Cerys Davage / 63. Let's talk about Endometriosis (ft. Amy Jane)

Transcript

63. Let's talk about Endometriosis (ft. Amy Jane) · Unbalanced with Cerys Davage

0:09
Hi guys, welcome back to another episode of Unbalanced with me,
0:13
Keras David. Today I've got a guest back in
0:16
radio platform, someone that I'm meeting for the first time and
0:19
we've been chatting for a while. I'm excited to actually meet
0:22
face to face today another Welsh gal, Amy.
0:25
Hi, hello. How are you?
0:26
I'm doing so good, thank you. How are?
0:28
You. I'm good, Thank you.
0:30
I'm so excited to actually meet you in person, it's quite
0:33
surreal. Actually, I know we've been
0:34
talking on and off for months. Haven't we?
0:36
We have, yeah. Yeah, I obviously have seen a
0:39
lot of what you post online and I'm very excited to dive into
0:42
that. But first of all, give us a
0:44
little introduction. Who are you and where are you
0:46
from? OK, so I'm Amy Jane and I'm from
0:49
the Rhonda in South Wales and I am currently working as a
0:55
Building Merchant's assistant in the office.
0:59
And to be honest there's nothing really too special about me
1:03
right now other than me trying to push my content a little bit
1:05
more and spending a lot of time doing that.
1:07
What's your content? So I'm grow with Endo on social
1:11
media where I am trying to raise more awareness around
1:14
endometriosis. Amazing.
1:17
So tell us about your endometriosis journey.
1:20
And obviously that's how I found you, but I'd love to know the
1:24
full the full story, if you will.
1:26
Yeah, well, it's actually a bit crazy because prior to getting
1:29
diagnosed I didn't actually know what endometriosis was.
1:31
And so I find that my journey is a little bit different to many
1:35
others because like a lot of other women, they've had to
1:37
fight for years to get diagnosed, whereas mine actually
1:41
came by complete surprise. So it was back in 2018 I was
1:45
diagnosed accidentally. I was having really painful
1:49
periods as I always had but this time it just felt a little bit
1:53
different. It was day one of my periods and
1:56
I was in extreme pain. However my bleeding just
1:59
completely stopped. So my mum decided to rush me
2:02
into hospital and after an examination they thought my
2:05
appendix was about to blow so they rushed me in for an
2:08
emergency surgery and that's when they discovered that my
2:12
appendix was absolutely fine but decided to take it out anyway
2:15
and that's when they discovered I had endometriosis and ovarian
2:18
cysts. Wow, so it was.
2:21
Quite a quick process then, would you say?
2:23
Yeah, very quick. I like to tell people that I got
2:25
diagnosed in four hours, which is crazy, but that was how long
2:29
the surgery was from start to finish.
2:31
And like I said, they took my appendix out anyway.
2:33
But they did call a gynaecologist in at the time
2:36
just to do a little bit of investigation around the cysts
2:39
because they believed that the pain I was experienced, that it
2:42
was in fact a ruptured cyst. So when Sage came in, take a
2:46
look around, that's when they thought, yeah, this is a little
2:50
bit more complicated than we thought.
2:52
Wow. Yeah.
2:53
So. Quite a quite a short.
2:54
Story. Really.
2:55
Yeah. I mean, it's so lucky that they
2:57
knew to keep digging because I, you know, you hear of situations
3:02
where people get a surgery that, you know, actually haven't
3:05
helped them at all and they haven't bothered to look deeper.
3:07
Yeah, yeah. So basically when I they told me
3:10
I had endometriosis and ovarian cysts, they discharged me the
3:14
next day, told me what they had found and they basically just
3:18
said there's no cure. You'll see a gynaecologist in
3:21
the next few weeks. And I think it was around six to
3:23
seven months until I saw a gynaecologist.
3:26
So it was basically left up to me and my mum to do all the
3:29
investigating because I just had no idea what it was.
3:32
I'd never even heard of it. So it was a bit of a crazy
3:35
moment and it was a very stressful time in my life.
3:39
But I was very lucky to find out the way that I did because, like
3:43
I said, a lot of people just dig for years and like you said,
3:46
they chose to investigate that a little bit further whilst I was
3:49
in surgery, so I was very, very lucky.
3:52
Yeah, but it might must have been quite a shock for you to
3:55
hear this word that you hadn't even heard of before.
3:58
Obviously now it's quite common, but how did you feel at
4:02
beginning? To be honest, at first I felt
4:06
weirdly OK and I think it's because I wasn't prepared for
4:10
how much my life was about to change.
4:11
You know, I heard I had this, this condition and I didn't know
4:14
what it was. So for me, I wasn't terrified.
4:17
I wasn't scared. I just thought, Oh well, it's
4:19
something I've got, you know, we'll get over it.
4:21
But then obviously upon researching, speaking to a
4:24
gynaecologist, eventually I then realised actually this is a lot
4:29
worse than I thought. And when I first was told about
4:32
ovarian cysts, the first thing you heard of when you think of
4:35
cysts is, is it cancer? Is it something very, very
4:39
dangerous? So I was worried at that point,
4:42
but they did reassure me that it's nothing to be worried
4:44
about. But again, upon further
4:46
research, I have found out that they are something to be worried
4:50
about. Oh no.
4:52
So when they said that you had cysts, is that something that
4:55
needs to be operated on or can you live?
4:57
With that, so I had cysts removed in a surgery three years
5:01
ago and recently as of last year I had an MRI which showed that
5:06
the cysts have now grown back. So as of last year I've had two
5:11
cysts. So I got one that was 4
5:13
centimetres and one that was 10 centimetres.
5:16
So I'm currently now waiting for another surgery just to get them
5:20
drained because they're at a size that's causing concern.
5:23
So I will need a surgery to get them removed, but in the
5:27
meantime I'm just waiting for a surgery just to drain them down
5:30
a bit. Wow, is that a lot?
5:33
Yes, yeah, it's a lot to process because you think, you know,
5:36
you're doing surgery on me. Why not just take them out?
5:39
But they've explained that it's a little bit more complex due to
5:42
everything else going on in there.
5:44
So they've just said there's a sort of temporary measure until
5:47
I get the bigger surgery. Then they've offered to drain
5:49
them down instead. Well, yeah.
5:52
Well, I hope that goes well. All the best for you with.
5:55
That thank you so. Since your diagnosis, you
5:58
obviously went home educated yourself on endometriosis.
6:01
What did you find when you were looking?
6:04
Well, the first thing I learned was that it's not just a period
6:07
problem like many people say, and it is in fact a whole body
6:11
disease, which is heartbreaking. And I only registered that it
6:17
was a whole body disease when I started learning about the
6:20
symptoms. So there was a lot of symptoms
6:22
that I didn't think would endometriosis.
6:25
So for example, during my teenagers, I experienced what I
6:29
thought was cystitis a lot. So I'd also got like, you know,
6:32
a lot of burning when I go to the toilet, when I'm urinating.
6:36
I'd get urgency and more frequently needing to go.
6:41
But then I discovered that I actually have endometriosis on
6:44
my bladder. So all of that came to light
6:46
then. So when I did have the
6:48
endometriosis removed, I felt so much better.
6:51
So yeah, like I was told at the beginning that this is bad
6:55
periods, you know, it's all to do with your periods.
6:58
It's really, really not. It really is a whole body
7:00
disease. So wow.
7:03
I didn't realise that you could have endometriosis on your
7:05
bladder as well. Yeah.
7:07
Oh my goodness. So how do they, how do they
7:09
operate on that? Or do they?
7:11
Yeah, Yeah. So you have two ways of
7:15
operating with endometriosis. You have ablation or excision.
7:19
So basically one is lasering it off.
7:22
So if you think of it as like a plant, 1 is basically pulling
7:26
the plant from the grass, but then excision is where you're
7:30
digging it up from the root. So I have been lucky enough to
7:33
get excision during my last surgery, but some people do just
7:36
get ablation where they just sort of cut it off the surface
7:39
rather than from the root. So yeah, it's two different
7:42
ways. OK.
7:43
So does that mean that there's less chance of it like coming
7:46
back and. With the excision, I think they
7:49
do hope that it doesn't come back as quickly because it does
7:53
take it sort of from root. But it's everyone's just so
7:56
different and unfortunately it is one of those conditions where
8:01
it does grow rapidly. Wow, yeah.
8:03
Well thank you for explaining that because the word is like
8:07
being used a lot nowadays, but I don't think there's still enough
8:10
education on how big it actually can be.
8:13
And like you said, it's not just a period related thing.
8:17
No how? How far can endometriosis go?
8:21
It's actually quite shocking. It really is.
8:23
So I know women who have had it on their lungs, on their
8:27
diaphragm, and I don't personally know anyone, but I
8:31
have heard of cases where it's been found in someone's eye, is
8:35
being found on someone's brain. It's awful.
8:38
It's literally a whole body disease.
8:41
Yeah, it's crazy. It really is crazy.
8:44
And unfortunately, it was only a couple of months ago, I actually
8:46
heard of a story of a young woman who lost her twin sister
8:52
because she had it so extensively on her lungs that
8:55
her lungs kept collapsing every time she did come on her period.
8:59
It was awful. And I think it was like maybe
9:01
the 53rd time that it happened that unfortunately she lost her
9:05
life. It was so bad.
9:07
It was literally heartbreaking. It's awful, but people don't
9:10
realise the severity of it. People are still saying it's a
9:14
bad period, It's a period problem, It's a woman's problem,
9:17
but it's really not. It affects multiple organs in
9:21
our body. It affects our whole body.
9:23
Wow. So they say it's one in 10 that
9:25
they believe it is about one in seven.
9:27
And the reason they can't say it's one in seven is because
9:31
there's not enough people to diagnose people because of the
9:35
current waiting lists in the UK for gynaecology.
9:39
And unfortunately there's not enough doctors that are
9:41
specialised enough to look for endometriosis or qualified
9:46
enough to say, yes, this is endometriosis.
9:49
Wow. So it's very easily missed.
9:52
So as common as it is, do you think enough is being done to to
9:56
get it diagnosed? No Ania, no Ania.
9:59
And I'm hoping one day that will change and I think it is heading
10:03
that way, but I think we're still a while off unfortunately.
10:07
Myself and a few other ladies attended A endometriosis
10:10
fundraising event a few weeks ago and we had an endometriosis
10:13
specialist surgeon there and he was fantastic.
10:16
And we also had an endometriosis nurse there.
10:18
Again, she was absolutely wonderful.
10:21
But she explained how there's been 7 new endometriosis
10:24
specialist nurses in Wales for each health board, the last 7 to
10:30
cover the whole of Wales, just Wales.
10:32
That's just not enough. Like it really isn't enough.
10:35
So there definitely needs to be more funding, there needs to be
10:38
more staff, there needs to be more care for women with
10:40
endometriosis. Now 7 is a great first step, but
10:44
still way off what we need. Yeah, yeah.
10:47
Are you hoping for a better future?
10:50
I hope so, I really do. If not for our generation, maybe
10:53
the next. But I'm really glad that it is
10:56
becoming a bit more spoken of endometriosis, especially
10:59
recently in the news, it is becoming a lot more prominent.
11:02
But that's why people like myself, we want to try and do as
11:06
much as we can to raise awareness, to make sure that if
11:09
we're not being heard for ourselves in this generation,
11:11
then hopefully the next. It just makes you think, like,
11:14
this isn't a new thing. You know, generations of people
11:17
before us have suffered with it. And it just makes you wonder,
11:21
like, how is it taking this long?
11:23
Yeah. Is it something you think that
11:26
surrounds the lack of education? Around women's bodies, yes, I
11:30
think so. And I think I'm not 100% certain
11:33
on the details, but there was a point where the female body was
11:37
obviously being studied and they stopped because of how complex
11:41
it was compared to men. So a lot of medical studies are
11:44
done on men because they do find that women's bodies are just too
11:49
complex. If you think of all our
11:50
hormones, I, you know, I completely understand it, but
11:53
that doesn't mean you should give up and stop, you know?
11:55
Yeah, like if you want to get into that field, surely you want
11:58
to learn and. Yes, exactly.
12:01
Yeah, it doesn't make sense. One day we'll get there.
12:04
We will. We will.
12:05
I want to go back to, you know, when you were growing up and
12:09
when you first started having periods, were they always
12:12
painful? Were they always different from
12:14
other people in your life with it?
12:16
Yes, yeah. So I started my periods when I
12:18
was 11 years old and I remember the very first one, I went
12:22
downstairs to my mum and I was like, mum, I've got a really bad
12:25
stomach. And obviously I just started
12:27
comprehensive school and my mum actually worked in my
12:30
comprehensive. So I remember saying to him,
12:32
mum, I've got a really bad stomach, like something's really
12:35
wrong. And she just thought I was
12:36
trying to get the day out to school.
12:38
And she was saying, you know, if you don't go in, I'm going to
12:40
have to, you know, say I can't come in.
12:41
And I was like, no, mum, seriously.
12:43
Now, I think this is something really bad going on.
12:46
So luckily I was obviously able to have the day off and at the
12:50
time we actually had a mobile hairdresser around.
12:52
So she came around to cut our hair.
12:54
And I remember going upstairs, going to the toilet, looking in
12:58
my underwear and there was blood.
12:59
And I just remember freaking out and I was like, Oh my goodness,
13:02
what is going on? So I called my mum upstairs
13:05
because I was thinking, am I dying?
13:07
Like, I know it sounds dramatic, but I was just like, this is
13:10
bad. So my mum come upstairs and she
13:13
was like, Oh my goodness, you're a woman, you know, women.
13:15
And I was like, wait, what? And she's like, it's your
13:18
period. And I was like, oh, OK.
13:20
And, you know, sorted myself out, went back downstairs at a
13:23
round of applause off everyone. But I remember then from that
13:27
very first one, they were always agony all the time.
13:32
And it was so heavy as well all the time.
13:35
And I just so grateful that my school trousers were black
13:38
because it'd be multiple times where I would just leak through,
13:41
which is awful. And I remember thinking like,
13:43
none of my friends seem to be saying that they're going
13:46
through this. Like they all seem really
13:48
excited to be a woman. You know, they, I got my period,
13:52
I got my tampons. This is amazing and I was like
13:55
well why am I killed over in a ball in so much pain?
13:58
Like I dread mine every single month but they've always been
14:02
horrendous. So you didn't know anyone else
14:05
that had it as extreme as you did?
14:07
No, not at all. I was always told, you know,
14:11
some women just experience pain differently.
14:13
You know, we've all got different pain thresholds.
14:15
Yeah. I just felt like I was the only
14:17
one going through this. And I think that's why I just
14:20
wasn't aware of endometriosis. And, you know, I just thought
14:23
everything that I was going through was just part of being a
14:25
woman. But it's crazy now because I
14:27
know other people in my life who have endometriosis, and they say
14:31
that, you know, when their period comes around, they can
14:35
barely do anything, you know, so there is so much agony.
14:38
Would you say that that's like the most common symptom that
14:41
leads people to get in the diagnosis eventually?
14:44
Yeah, I think it is definitely the pain because like I said,
14:47
because there's a whole body disease.
14:49
It's not just the stomach cramps.
14:50
Like the stomach cramps, I think of a first point where you know
14:54
something is wrong, but it can just affect everything.
14:57
Like I experience a lot of pain radiating down my legs.
15:00
I get a lot of lower back pain as well.
15:03
And then I've also just found out that I suffer with hormonal
15:06
migraines, which are sort of linked into my endometriosis
15:09
flare ups. So I get a lot of neck pain.
15:12
So it's all sort of linked together, but I think the first
15:15
point of something is wrong is the stomach cramps.
15:19
OK, Yeah, yeah. People say, you know, it is a
15:23
chronic illness and I understand why because it is there, you
15:27
know, it doesn't just go away and it is more than just painful
15:30
periods. It it affects your whole body,
15:32
like you said. And how are you doing now?
15:35
You know, how you, how are you being affected kind of
15:37
day-to-day? So unfortunately recently I have
15:40
been getting worse. I had the Morena coil fitted 3
15:44
years ago and I can honestly say it changed my life.
15:47
My periods now are like ridiculously light.
15:50
I've never had such a normal period to me.
15:53
I don't experience much pain at all but I am struggling a lot
15:58
right now with fatigue with my endobelly.
16:01
I do get some pain but I wouldn't call it flare up.
16:03
Pain is more like very sharp pain due to my ovarian cysts.
16:09
But yeah I do struggle a lot with fatigue I would say is my
16:12
main. Thing that's so interesting that
16:15
even though you've kind of cut down your periods a bit that
16:18
you're still just still getting symptoms and that just does
16:22
prove that it's not just about periods.
16:24
It is. It is the cysts at.
16:26
Work. Yeah.
16:27
So. Sorry to hear that were you
16:30
recommended lots of different kind of?
16:33
Contraceptives, yes. Yeah.
16:35
So I think I've tried in total about four different birth
16:37
control pills. They were the main things.
16:40
Obviously you get recommended, like the implant, the injection,
16:44
but to be honest, I never wanted to try those.
16:47
I think it was just me being a little bit selfish because I was
16:49
like, I don't want to gain any weight, you know, and that's one
16:52
of the biggest side effects. But the main one that was pushed
16:55
on to me was the Marina coil. Every doctor I saw said, you
16:59
know, try the Marina coil, give it a go.
17:01
It works wonders for women. But I was really scared because
17:04
I had a lot of negativity around it.
17:06
And then when I had my last endometriosis surgery, which I
17:10
had done privately, I trusted that doctor so much because he
17:14
changed my life so, so much. And he said, look, I really
17:17
think it's worth you giving it a go.
17:19
And I thought, well, do you know where, if I trust anyone, it's
17:21
you. So I did, and I'm so glad that I
17:24
did, you know, because it was fantastic.
17:27
I just wish it could work this way for everyone because it
17:30
really has changed everything. But unfortunately, I haven't
17:33
stopped the endometriosis at all.
17:35
It's just made a living. But they're a little bit easier.
17:38
OK, interesting. Because yeah, I know that people
17:41
kind of get recommended different contraceptives and
17:45
different pills, and it kind of gets pushed on to them as if
17:47
that's like, the only answer. But it's nice that you had a
17:50
doctor that really understood you because every woman's
17:52
different. Yeah.
17:53
And, you know, the cold might work for some people that might
17:55
not. But what you see online is kind
17:57
of scary and just overwhelming, you know, all the different
18:00
options that are out there, even for women without endometriosis,
18:04
not knowing what to what to go on or, you know, whether they
18:08
should at all. Yeah.
18:09
And is, is scary. So I'm glad that you managed to
18:13
find one that went for you and. Me too.
18:15
Are you taking? Any medication as well like to
18:18
help your pain? Not at the moment, no.
18:20
I do take migraine tablets if I feel them coming on.
18:23
At the moment I am just trying to, you know, trust the coil.
18:26
I know it's doing as best as can and I've never really liked the
18:29
thought of using medication, which I know sounds really leave
18:32
that unless I'm absolutely desperate and you know, I've got
18:35
things to do. That's the only reason I'll take
18:38
them. They try to go without diff.
18:39
I can. Sorry, I sound like your GP
18:42
there. Like are you taking any
18:43
medication? You mentioned that one of your
18:47
symptoms is an endobelly. Obviously I know what that is
18:50
from seeing your social media page, but do you mind explaining
18:53
what that is? Yeah.
18:54
So basically endobelly is referred to with the
18:58
inflammation that we get because of endometriosis, and it
19:02
basically is a belly that mimics a pregnant belly.
19:05
It's very round. It can be quite hard, but it's
19:08
very noticeable, especially depending on what sort of
19:11
outfits you're wearing. You know, you just look inflamed
19:14
all around the abdomen area. And I'm sure people that have
19:19
underbelly's often get mistaken for as a as a pregnant woman.
19:23
Yes, yeah. And I think that's another
19:25
reason why I'm trying to sort of spread more awareness around
19:28
Endobelly, especially on social media.
19:30
I've been asked multiple times if I'm pregnant, and I know
19:33
other women struggle with this an awful lot.
19:37
And, you know, it can be disheartening, especially when,
19:40
you know, endometriosis can bring fertility issues.
19:44
So I understand why you can hurt a lot of women.
19:47
But unfortunately, it's just one of those things that we have to
19:50
deal with. It is part of having
19:52
endometriosis is one of the main symptoms due to the
19:55
inflammation. But yeah, it's it can be quite
19:58
tough to deal with. I'm sure, yeah.
20:01
I mean, you can't hide it, so you kind of got to accept it in
20:04
a way, yes. And I know this is completely
20:06
different, but I can kind of relate to that as someone with a
20:09
disability that's becoming obvious, You know, there is no
20:12
way of hiding it. And I think if I to be in denial
20:15
or to try and hide it, I would just kind of hideaway from the
20:18
world in a way. And there's no quality of life
20:20
in doing that. You know, I feel like you just
20:22
need to embrace and not even embrace, just just accept the
20:25
way that you look and the way that you are presented to other
20:28
people and just use that as a chance to educate.
20:31
People, I guess, do you? Yeah, like, definitely.
20:34
And I think especially now that social media is such a big
20:37
thing, you know, there's this constant need to need and to
20:41
look perfect. You know, people want to look
20:43
perfect all the time. You've got to have this social
20:45
media influencer body where you know, you're toned, you're tall,
20:50
you're slim, you're tanned. You know, you've got nothing
20:54
wrong with you. You know, there's philtres,
20:57
philtres that can make you skinny, philtres that can make
20:59
your skin glow, philtres that can just totally make you look
21:02
like a different person. But the reality is no one looks
21:05
like that. And, you know, if one in seven
21:08
women have endometriosis, that probably means that one in seven
21:11
women have an endobelly. Now, that's quite a lot.
21:14
You know, I think that's quite common.
21:16
Whereas that's probably more common than everyone having
21:19
glowing skin, you know, or women in over 60 years old not having
21:23
wrinkles. You know, it's just one of those
21:26
things where it's more normal to have a belly than not have a
21:29
belly. Yeah.
21:30
Definitely. And even if you don't have
21:33
endometriosis doesn't mean that you have a flat stomach.
21:36
You know, I struggled for years because I thought that, you
21:41
know, to be healthy, you had to have a flat stomach.
21:43
And I was like, why do I always look bloated?
21:45
Like why do why do I always feel like so disgusting?
21:48
Because like a bit of my belly sticks out and I can't wear like
21:51
low rise jeans because my belly will just be huge.
21:55
But actually I am seeing a lot more on social media now.
21:58
I think there are there are two sides to it now.
22:00
There's the so I'm picture perfect, but then I think people
22:04
have clocked on to that and I think people are quick to notice
22:07
philtres and and be like, this is unrealistic.
22:10
But then so yeah, you've got the other side then that promotes
22:13
like a healthy body and yeah, mid size or plus size bodies.
22:16
And yeah, I do. You feel like there's more room
22:19
for different types of bodies on Instagram and social media now.
22:23
Yes, definitely. But the only bad thing I think
22:26
about people sharing those type of accounts is the amount of
22:29
hate, you know, people are showing off their real bodies
22:32
with Cellulite, with stretch marks, you know, carrying a bit
22:35
of extra weight and they are met with so much hate and it's awful
22:38
because it's like it's, that's literally just someone's body,
22:40
you know. But I'm, I'm glad to see a bit
22:43
more variation, you know, it makes me feel a lot less alone
22:46
and it makes me feel more normal.
22:48
And I hope it does for everyone else as well.
22:51
Yeah, so tell me why you wanted to get into that part of social
22:55
media? To be honest, it's by again,
22:57
complete accident. So I started my social media
23:00
page as sort of like a fitness account, believe it or not.
23:03
And so since I have an endometriosis, fitness has sort
23:06
of been put on the back burner. But since getting the Marina
23:09
coil fitted, I thought, you know what, things are good, let's try
23:12
and get back into it. So I wanted to start this whole
23:15
fitness journey with endometriosis.
23:17
So that's when I started the account and then I posted one
23:21
video saying look at me, you wearing this bodycon skirt and
23:24
my belly's on show. Like, you know, where were you
23:26
want this just a belly. And then everyone went wild and
23:30
I thought, you know what? Like I think this is the type of
23:32
stuff I need to be posting, not for the likes, not for the
23:36
follows. Mainly because I had so many
23:38
comments and messages of women saying that's my body.
23:43
I am finally seeing someone with a belly like me.
23:46
I feel so good because I know now that I'm not alone.
23:49
And I thought, you know what that means?
23:50
The world to me, it's really not about, oh, let's get all these
23:54
followers, let's work with brands, let's do this.
23:56
If I can make a woman feel better about herself, then that
24:00
means everything to me. Wow, it clearly shows that
24:04
there's a need for content like yours because like you said,
24:07
it's such a common thing and women need to see themselves
24:12
reflected in social media, don't they?
24:13
Yes, yeah, definitely. Because social media is just
24:17
such a big part of everyone's lives, you know, it's it's
24:20
everywhere, everywhere you look. So if people can see more of
24:24
their normal online, then that's great.
24:28
If I can help do that, then that's even better, yeah.
24:31
Exactly. I know that you deal with a lot
24:34
of different comments as well. What are the most common
24:36
comments that you get and how do you deal with them?
24:39
So to be honest, there's two that stick out to me #1 when you
24:43
do, are you pregnant? And then number 2 is that I need
24:46
to try and eat healthier and that, you know, have I tried the
24:49
AIP diet? Have I tried cutting out gluten?
24:52
You know, have I tried not eating sugar?
24:55
They are the 2 main comments that I get.
24:57
That's crazy that that people connect that to you being
25:01
unhealthy. Yeah.
25:02
As if that's just like assuming so many things that just isn't
25:06
true. Yeah.
25:07
And like obviously with social media, we all know that what we
25:10
post isn't 100% our lives. So for someone to automatically
25:14
assume that I eat garbage all the time just because I have a
25:18
non flat tummy, it's insane. It's really insane.
25:22
But yeah, they are the most comments that I get, which is
25:26
not what I expected to be. I expected the pregnancy one,
25:28
but not so much the stop eating gluten and stop eating sugar.
25:32
Yeah, crazy. How do you respond to those kind
25:36
of comments? I try not to be sarcastic.
25:39
I'll be honest. There's a few times where I'm
25:41
like, you know what, I'm just going to give it back to him.
25:43
But I do just try and, you know, just be honest with them.
25:46
Like you don't know who I am, you don't know what I eat.
25:48
So, you know, let's not assume things and I'll see when people
25:51
ask, you know, am I pregnant? You can tell some people are
25:54
doing it to try and be funny, but if they're not and they're
25:56
just genuinely asking, you know, am I pregnant?
25:59
Then I just try and say, look, no, I just got an endobelly.
26:02
This is where an endobelly is. This is endometriosis and it's
26:05
just the way I am. But it must be quite rewarding
26:08
as well to kind of be vulnerable in that way.
26:11
But get so much love in your comments as well.
26:14
Yes, yeah, definitely. And to be honest, the good
26:17
comments always outweigh the bads, you know, and like I said
26:21
before, I could get 100 hate comments on a video, but if one
26:25
person comments saying you have made me feel so much better of
26:28
myself, it just makes it so worse there.
26:30
So yeah. That's amazing.
26:33
So how long have you been doing this online journey for?
26:37
A little over a year, I think about a year and a half.
26:39
Wow and you're how many followers in now?
26:41
Like over 10K. Yeah, I think it's kind of like
26:43
12 1/2 thousand, which is insane.
26:46
But the time this comes out, guys, it's going to be way more.
26:49
So make sure to follow Grow with Ando on Instagram because it's
26:53
going to be way more than it is right now.
26:54
Well, let's see, I hope. What are your hopes and dreams
26:59
for not only your account, but for you as a person?
27:03
So I'd like to obviously grow my accounts again, not for the
27:06
followers, but, you know, if I can help more women feel a
27:08
little bit more confident from day-to-day, then I'd love that.
27:12
Potentially, I'd like to work with maybe a couple of brands.
27:15
But you know, I do want to keep it real.
27:17
I want to keep it authentic. And I only want to work with
27:19
brands that I genuinely believe are great brands and that can
27:22
help us women with endometriosis.
27:25
But yeah, I'm just happy to sort of raise as much awareness as I
27:28
can. Amazing, I really hope that your
27:31
surgery goes well. Will you be documenting it on
27:34
your Instagram? I hope so.
27:36
Yeah, I hope so. We're going to see when it is,
27:40
but yeah, I hope so. You are very transparent on your
27:43
Instagram and I know sometimes that can be quite vulnerable and
27:46
quite a scary thing to do, but it just makes other women feel
27:49
less alone and also educates people like me who just don't
27:52
know enough about it. And this should be more
27:55
awareness, there should be more education.
27:57
Do you recommend for following other accounts that like educate
28:01
people about endometriosis? Definitely.
28:03
So there's probably one account that everyone with endometriosis
28:06
probably already follows, and that's Sophie Richards.
28:09
She's absolutely fantastic and I think she is one of the main
28:13
accounts that has helped me massively.
28:14
You know, again, she is very transparent with her
28:17
endometriosis journey. She's currently studying to be,
28:20
you know, a menstrual health coach.
28:22
Like she is very in the know. So she is someone I highly,
28:25
highly recommend, but there's just so many other great users
28:28
out there now. And I think the more users you
28:31
can connect with, the better. If they're not influences, if
28:34
they're just, you know, everyone else just trying to create and
28:37
spread more awareness, follow them all, you know, connect with
28:40
them all because have an endometriosis can feel very,
28:43
very lonely. And I think the more support we
28:45
have, especially from others with endometriosis than the
28:48
better. Definitely, I'd love to end this
28:52
episode by I wouldn't love to end the episode.
28:54
I'd love to carry on chatting to you, but I really would like to
28:59
know what your advice would be to your younger self who was
29:04
struggling or just anyone else that might be in that position.
29:08
Number one would be to stop worrying about your body because
29:11
I wasted so much time trying to make my body something.
29:15
But to be honest, I don't think it would ever be.
29:18
You know, I was trying to constantly make myself smaller.
29:21
You know, I wanted ABS, I wanted all of this.
29:23
But the reality is I have endometriosis and I have things
29:26
growing inside me. So unfortunately, that's not
29:28
going to happen #2 is to those who are actively looking for a
29:33
diagnosis. Don't give up, don't stop.
29:35
If it takes you five years, 10 years, 20 years is so important
29:40
that you get the answers that you need.
29:43
So important because going forward you will need the right
29:46
care, you'll need the right support because it's a very
29:49
tough thing to go through. Yeah, definitely.
29:51
That is such good advice. And do you think that having the
29:55
diagnosis or coming to terms with the ANDO has kind of
29:59
changed the way you see your future?
30:01
In a way, yeah. Yeah, There is some days where
30:04
it's really hard to accept. But now that I am on that sort
30:08
of path to acceptance, you know, I know my boundaries, I know my
30:12
limits, and I know what I can and can't do.
30:15
And sometimes the hardest part is saying, do you know what?
30:17
I can't do this. And holding your hands up.
30:19
I didn't bet in that. But then there's no shame in
30:22
doing that. You know, none of us chose to
30:24
have endometriosis. None of us chose to have these
30:26
conditions that we've got. And sometimes we just have to
30:30
sort of admit defeat, which is what I hate saying, but we do.
30:33
We have to give in and say, do you know what?
30:35
This is just something I can't do.
30:36
This is just not for me. And yeah, I would just say, you
30:40
know, just try your best. That is absolutely something I
30:42
can relate to. You know, my future looked
30:44
different to me 10 years ago than it does now.
30:47
And I know a lot of people who either have the same condition
30:51
as me or other conditions that will worsen over time that are
30:55
trying to like battle it or ignore it or fight it.
30:58
But again, admitting defeat is probably the best thing you can
31:02
do. And again, it's not the best
31:05
term, but just kind of accepting it just so that you can start
31:08
shaping your life the way it's supposed to be and not try to
31:12
force something that's just not going to happen.
31:14
Exactly. And like, you know, with
31:15
conditions like ours, unfortunately, they're not going
31:18
anywhere. You know, they are for life, as
31:20
much as I hate to admit it. So, you know, it's easier to
31:23
just not fight it. Like you said that we both said
31:26
now we hate saying admitting defeat, but it is just about
31:30
accepting it for what it is because that's a long time to
31:33
fight something that just isn't going anywhere.
31:35
Yeah, exactly. Is there anything else you want
31:38
to add? Just a massive thank you to you.
31:40
Really like you are one of my biggest inspirations.
31:43
You know, talking about what you go through and just creating a
31:46
podcast like this where you know, people like myself can
31:50
share our stories, you know, raise awareness on our
31:53
conditions is just fantastic. It really, really is.
31:57
So a massive, massive thank you to you.
31:59
Well. Thank you so much.
32:01
It's OK. Yeah, I, I love doing this, not
32:04
only to raise awareness, but also just to meet these
32:06
incredible people like yourself. I've learned so much, you know,
32:09
the past two years now, and I just hope that we continue to
32:14
raise awareness of our conditions and, yeah, other
32:16
people's stories as well, because it's so important, isn't
32:19
it? Absolutely, absolutely.
32:20
And you know, I speak a lot about like, you know, connecting
32:23
with others with the same condition as you.
32:24
It's not just about that. It's about connecting with
32:26
others who are chronically I'll because we all need as much
32:30
support as we can. Get exactly we're all kind of in
32:32
the same boat, really. Oh yeah, the disabled and
32:34
chronically I'll community are just like one of the best.
32:36
Places to be 0100 percent, 100%. Thank you guys so much for
32:41
listening to today's episode with Amy.
32:43
I hope you enjoyed. If you'd like to follow Amy's
32:46
journey, don't forget to follow here on Instagram at Grow with
32:49
Ando Anywhere. Else I'm on TikTok, same
32:51
username. And if you'd like to know the
32:53
next time and Balanced has an episode out, then don't forget
32:57
to follow the podcast on your favourite podcast platform and
33:00
press the bell button next to the follow button so that you're
33:02
notified. Thank you so much to cure LGMD 2
33:06
I for sponsoring this podcast. I'll be back with you guys very
33:09
soon with another episode, but until then, have a great couple
33:12
weeks. Bye.