Latest / The Dr Louise Newson Podcast / 283 - Hormonal changes and endometriosis: busting myths and seeking help

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283 - Hormonal changes and endometriosis: busting myths and seeking help · The Dr Louise Newson Podcast

1:02
So I'm very excited on my podcast today because we're
1:04
going to be talking about endometriosis, which is
1:07
incredibly common and something I learned nothing about at
1:11
medical school, and I learned nothing about menopause,
1:14
perimenopause, or endometriosis. And it's shocking because it's
1:19
very common. A lot of people say 10% of the
1:22
population. I think it's actually more than
1:23
that. A lot of women are suffering
1:26
symptoms and aren't being diagnosed.
1:28
So I've got with me Jen, who has got the most amazing social
1:33
media account. Her Instagram is definitely
1:35
worth following. She's got quite a harrowing
1:37
story as well, which has LED her to have more fire in her belly
1:40
to help more people. And I met her at an event in
1:44
Cambridge where I'm a visiting belly at Murray Edwards College
1:48
in Cambridge. And she was started talking to
1:51
me about her own condition. And of course I then started to
1:54
quiz her about hormones and the rest is history as you say.
1:57
So welcome to today. Hi, thank you for having me.
2:01
So let's just start with basics. What is?
2:04
Endometriosis. So endometriosis is a full body
2:09
condition where you have cells that are similar but not the
2:12
same as the lining of the womb, and they are found in extra
2:16
uterine sites and they can be anywhere in the body.
2:19
It has actually been found on every single organ of the human
2:22
body, even things like the eye, the bone, the belly button.
2:26
You know it can be absolutely anywhere.
2:28
It's really interesting because I've been doing a lot of
2:30
research and reading a lot about hysteria.
2:34
And obviously the Greek word for womb is hist.
2:36
And everything seems to be blaming women.
2:40
But also because of our wandering womb and thinking that
2:45
if our womb could be kept in one place, the right place, we
2:50
wouldn't have all these symptoms.
2:53
And a lot of hysteria is hormonal changes we know now.
2:58
But also I wonder whether they were trying to describe a bit of
3:01
endometriosis as well. And, you know, when I was
3:05
learned a bit when I was a junior doctor by a
3:07
gynaecologist, he said, oh, some of the lining of the womb spills
3:11
out through the floating tubes into the ovaries, and then it
3:16
sort of whooshes around the bud. Yeah.
3:19
And there is this sort of perception that it is bits of
3:22
the lining of the womb that's getting caught in the wrong
3:24
place. Yeah.
3:26
And so it's very interesting when you say it's like the
3:28
lining of the, you know, there's.
3:29
Yeah. So even just the definition
3:32
shows we don't know much about it because it's very.
3:35
Vague. Definition isn't it really?
3:37
Yeah, we don't have a cure. We don't know what causes it
3:40
still. So it was first sort of
3:42
discovered in 18601861. But you are right, if you look
3:47
back into kind of ancient Greek, even ancient Egyptian texts,
3:50
there are symptoms that are very, very similar sounding to
3:53
what we now know as endometriosis.
3:55
But it wasn't until 1860 that it kind of became a thing.
3:59
And it was thought to be the lining of the womb that had to
4:04
use that gynaecologist's beautiful description spilled
4:07
out. And for a long time, the, I
4:09
think it was in the 1920s, this theory of retrograde
4:13
menstruation, which is what that gynaecologist was describing,
4:16
where period blood flows back up through the fallopian tubes and
4:19
into the body. And it was then thought that
4:21
these little bits of the lining of the womb stuck themselves
4:24
where they weren't meant to be and acted like little mini
4:26
periods each month. We now know that that is not
4:30
true. We don't know what causes it,
4:32
but we've kind of ruled out certain theories.
4:34
And the theory of retrograde menstruation, despite being
4:38
debunked, is one of the most stubborn and persistent myths
4:43
about endometriosis. There is this idea that it is
4:46
just a uterine condition that has stuck with us and is
4:49
affecting care today. But it's, I think it's 90%.
4:53
I think it's the figure of women experience retrograde
4:55
menstruation, but only 10% is this sort of established figure.
5:00
But we think it's much higher really have endometriosis.
5:03
So there's, you know, retrograde administration never really
5:06
answered why endometriosis happened, why it happened in
5:11
parts where it is physically impossible for that blood to
5:13
flow to the brain, for example. You know, it's quite hard to do
5:17
that. But it is a real stubborn myth
5:19
and it just won't go away. And even today, it still is
5:22
hanging on in there, unfortunately.
5:24
And it's very. Interesting.
5:25
I mean, as you know, I'm not a gynecologist and but when you
5:28
read various texts and guidelines, they'll talk about
5:31
how to diagnose it. But actually there's all these
5:35
gold standards, which we could do in an ideal world if we had
5:39
unlimited resources, unlimited access to investigations.
5:44
But actually in medicine, we need to start with what are the
5:46
symptoms before we even think about diagnosis.
5:49
And a lot of the symptoms of endometriosis can be confused
5:53
with other symptoms. But also, women have also been,
5:57
we've always been told, yeah, your periods will be heavy, Your
6:00
periods will be painful. It's just, you know, one of
6:02
those things. So then how do you know if
6:05
you've got endometriosis or not? Like what are the most common
6:08
symptoms? So this is where it does get
6:12
confusing because a lot of the symptoms are period related and
6:15
that's because endometriosis is responding to hormonal changes
6:18
in the body. It is not because it is acting
6:21
like a mini period itself. So the most kind of common
6:25
symptoms are things like very heavy painful periods.
6:29
Maybe they last longer than seven days.
6:31
Maybe they're very irregular. Maybe you're in so much pain
6:35
you're having to miss school or work or social activities.
6:38
You know, Paris over the counter medication is helping all these
6:42
things, but that doesn't mean if you have a textbook period that
6:46
you don't have endometriosis because I think it's up to 30%
6:49
of endometriosis patients are actually completely
6:51
asymptomatic. And then you have all of the
6:53
other symptoms that aren't related to your period at all.
6:56
It could be back pain, hip pain, flank pain, you could have chest
7:00
pain. If you've got diaphragmatic
7:02
endometriosis, for example, you'd have symptoms like that
7:04
with to do with breathing. You could have urinary issues,
7:07
bowel issues. There are so many symptoms and I
7:11
think that's where the kind of misdiagnosis does happen.
7:15
It's partly because the symptoms can happen anywhere in the body,
7:18
but it's largely the misdiagnosis is happening
7:21
because a, this myth of that it's a period condition is
7:25
persisting so much. So it's fobbed off as a just the
7:28
either, you know, painful periods are normal, that's what
7:31
you should deal with. Or if your symptoms aren't
7:34
experienced around your period, so maybe they're around
7:36
ovulation or just in your luteal phase, for example, then it
7:41
can't possibly be endometriosis because it's not to do with your
7:43
period. So that's where misdiagnosis
7:46
also happens. And then also, we're just not
7:48
believing women. So when we come in and we say we
7:51
have these symptoms, oh, no, you can't possibly.
7:53
You can't have that. It doesn't make sense.
7:55
Or that's not what I was taught, or you're too young, or you're
7:59
too old, or, you know, you're pregnant.
8:01
So you can't. Or we're just not believing
8:03
women. We're not being seen as reliable
8:06
narrators of our own experience. And then so we're getting
8:09
misdiagnosed with, oh, it must be IBS, it must be stress.
8:12
It must just be dysmenoria. Yeah, I mean, we'll talk about
8:17
that a bit because that's a huge problem with so much in
8:19
medicine. I strongly think that if we
8:22
think about endometriosis, of course our hormones, we see
8:26
these nice graphs of how our hormones go up in ovulation,
8:29
come down and then go up in the luteal phase, the second-half of
8:32
the cycle. Progesterone especially gets
8:35
very high, estudi increases and then drops off.
8:39
But most women, or many women have quite irregular periods.
8:42
We don't always ovulate every month.
8:45
We don't always have a 28 day cycle and our hormones can
8:49
change depending on whether we're stressed, what time zone
8:53
we're in, what we're eating, whether we're exercising.
8:56
No one has really done proper studies on hormone levels in
8:59
women. So with these are just like
9:01
textbooks that, you know, we learned in the 70s at school,
9:04
like we don't really have to progress.
9:07
So we don't really know which hormone is more related to
9:12
endometriosis. Is it because it's raised
9:14
estrogen or is it because it's low progesterone?
9:17
Like who knows, because no one's done the study.
9:20
So if we think as doctors, someone might have
9:22
endometriosis, what investigations?
9:26
Because I'm, I'm talking to you about your, and I know you're
9:28
not a medical person, but you have probably more knowledge
9:31
than most people. So just so that listeners know
9:35
that you aren't adopted, no, it doesn't matter.
9:37
You have more lived experience being a patient who has or a
9:40
woman that has endometriosis. So investigations, there are so
9:45
many different investigations and some are easier to access
9:47
than others. So in your experience, what
9:50
investigations do people have? So.
9:53
Ideally, the first one would be to listen, to listen to ask
9:58
questions and to believe the answers that they're being told.
10:02
Secondly, it would be to say, if you're not sure as a physician
10:08
to actually say that, to say, do you know what I'm not sure?
10:11
Let me find out or let me find someone who will know and I can
10:15
refer you to them. But in terms of what happened
10:18
with me, which mirrors an awful lot of others experience as
10:21
well, is I was first sent for an ultrasound scan, both an
10:25
internal and an external one and that came back clear.
10:28
So I was told no endometriosis, no further action needed.
10:32
And unfortunately endometriosis does not always show on scans.
10:36
You can have a completely clear scan and still have stage 4 very
10:41
severe endometriosis which is what happened with me.
10:44
And also, we just are not, so there's not enough education on
10:47
what to look for. If you don't know what to look
10:49
for, you're not going to find it if you don't know what you're
10:51
looking for. So then the next step is
10:53
normally an MRI scan. And that does tend to show,
10:58
especially if there's any more deep infiltrating endometriosis
11:01
as opposed to the superficial. It also often shows up if
11:04
there's an endometrioma, which is a type of endometriosis that
11:07
forms in the ovaries like a cyst.
11:09
So an MRI can show it, but again, it doesn't always show
11:13
the full extent or at all. So currently, which I think is
11:17
absolutely ridiculous, the official gold standard like you
11:22
said earlier way to diagnose endometriosis is surgery.
11:26
And I think that that is crazy that we are expecting potential
11:32
endometriosis patients to have to go through surgery to find
11:36
answers, but that is currently the sort of definitive way to
11:40
diagnose. But sadly, again, going back to
11:43
education, there aren't enough endometriosis specialists.
11:46
So not all people performing these surgeries actually know
11:50
what to look for. Endometriosis can have numerous
11:53
different presentations, it can be different colours, it can be
11:56
transparent, it can be anywhere in the body.
11:59
And if you're thinking, oh, I need to look for a red lesion in
12:03
or around the womb because that's what you were taught at
12:06
medical school, then you're going to potentially miss a huge
12:10
amount of disease. And then that poor patient is
12:13
still going to be in a huge, potentially a huge amount of
12:16
pain, having infertility issues, huge ramifications.
12:20
So we're in a position where surgery is sort of promoted as
12:25
the way to diagnose, but if it's not being done by a true
12:30
specialist, but it's not actually helpful for the
12:34
patient. But I would say the people that
12:37
are kind of most likely to see that patient first, it's going
12:39
to be primary care, it's going to be GPS.
12:41
So the first thing would be to absolutely listen and believe
12:45
what you're being told, even if it doesn't quite fit with what
12:48
you were taught at school, because endometriosis education
12:51
at clinical school level is not the best currently, if it exists
12:57
at all. So yeah, it would be to believe
12:59
what you're hearing and then either find out or refer to
13:04
somebody who will know. And I, I think it's absolutely
13:07
OK sometimes to say, do you know what?
13:09
I'm not an expert in this. I don't know for.
13:12
Sure. And I think it's very important
13:15
and it was one of the first things I learned when I trained
13:18
to be AGP as opposed to being a hospital physician because I've
13:21
done a lot of hospital work before.
13:24
My trainer said, Louise, you're going to be in terrible GP
13:26
because you won't be able to listen to patients and you won't
13:29
be able to deal with uncertainty because in hospital you want
13:31
things vary black and white so you can label that patient with
13:35
a diagnosis. And so he taught me really the
13:38
art of uncertainty, which sounds a bit weird for a doctor, but
13:41
it's really important in your limitations.
13:43
But the other thing is, I think not everything has to have like
13:47
a scan diagnosis or a surgery diagnosis or a biochemical
13:51
diagnosis. Often in medicine.
13:54
We were talking offline earlier about my daughter's chronic
13:56
migraine. She did have a brain scan at one
13:59
stage to make sure she didn't have something else going on.
14:02
But a lot of like migraine is in the history.
14:05
It's the talking, it's the understanding, pattern
14:07
recognition. And so with endometriosis, often
14:11
it's the same. You don't have to see it.
14:13
You can take a really good history and work out what's
14:17
going on. And sometimes you might not
14:20
know, but if I have someone sitting there in front of me
14:23
who's young, who is having some dreadful period pains, some
14:27
heavy periods, some abdominal bloating, some back pain, it
14:32
might be just in inverted commas, her hormones.
14:35
It might be just in inverted commas endometriosis.
14:39
It might be that she's a bit stressed at school.
14:41
Or more likely it will be all three.
14:44
But what I would do in the first instance to think about, well,
14:47
are there hormonal changes? Is there anything that I can do
14:50
that will help? Because if she responds to first
14:53
line treatment, we don't need to rush and subject her to surgery
14:56
to make a diagnosis, you know, and it's doing it in a stepwise
15:01
progression. Because if I say to every
15:03
patient you need to have surgery for an investigation and I can't
15:07
give you any treatment till we've got the diagnosis, well
15:09
there'd be women left, right and centre in pain and discomfort.
15:13
So it's prioritizing the right test for the right person and
15:19
looking at which treatment is right.
15:20
And it's often a combination of treatments as well.
15:23
And it's. Splitting it as well into
15:25
symptom management versus, you know, treating the disease
15:29
because endometriosis has no cure.
15:31
The best we have is the excision surgery with a skilled
15:34
specialist, but that's not accessible to everybody.
15:36
And so then we do rely on symptom management to live and
15:40
to, you know, get through the day.
15:43
But unfortunately, a lot of what we know is symptom management is
15:46
being portrayed as a cure, as a magic treatment that's going to,
15:51
you know, get rid of the disease.
15:53
And it's just, sadly, it's not true.
15:55
It can help with symptom management, of course, and
15:57
that's super important. But I think it's that thing of
16:01
informed consent, isn't it? And like knowing what you're
16:05
being prescribed or what you're being told and being allowed to
16:08
make that choice together, I think it's really important.
16:11
Totally, totally agree. So just tell me briefly about
16:16
your story because you've had, I say briefly because there's been
16:21
a lot, I know that. But tell me where you're up to
16:24
with your endometriosis, if you don't mind.
16:25
Jen, No, of course. So my first symptom was when I
16:28
was 11 and it kind of kick started with my first period
16:32
with those hormonal changes in my body and I didn't know what
16:35
to expect. It was my first period but I was
16:37
screaming on the floor of my parents bedroom.
16:40
I couldn't stand up straight. It was horrific.
16:43
And for 22 years I was back on 4 doctors trying to say how much
16:48
pain I was in and I was pretty much just put on the pill.
16:51
Straight away I was told oh she's just an unlucky one, she's
16:54
got painful periods. You know put her on the pill it
16:57
will sort it all out and it will settle down.
16:59
And for 22 years I would go back and say, look, I still, I'm
17:03
struggling. My periods are horrific.
17:04
I can't work during them. They're getting worse each time
17:07
as well, as well as all of the other symptoms.
17:10
And for 22 years I was told, Nope, that's normal, painful
17:14
periods apart. Being a woman, what makes you
17:16
more special than half of this planet?
17:19
And I, I got to a point where I started to believe that myself.
17:25
I started to think, why can't I deal with this the way all of
17:29
the other people with periods are dealing with it, What's
17:32
wrong with me? And effectively started to guess
17:34
like myself. Until it was during lockdown in
17:38
2021 and I was reading a book and it was about hormones and I
17:43
was like, oh, I have never actually experienced a natural,
17:46
whatever natural means cycle. So I stopped the pill.
17:51
I didn't ask anyone. I just did it.
17:52
I thought, I swear, it was a bit of lockdown boredom.
17:55
I just thought, oh, let's see what happens.
17:57
And I'd say within two to three cycles, the symptoms that I was
18:01
experiencing during my period for 22 years was every single
18:05
day of the month. I was pretty much bedridden.
18:08
My legs would collapse from underneath me from hip pain.
18:11
I was crawling from the bedroom to the bathroom, vomiting in
18:15
pain, passing out from blood loss.
18:17
It was absolutely horrific. And that's what it took for AGP
18:23
to finally say, OK, I think you need a scan.
18:27
And to cut a very Long story short, I had one surgery in May
18:34
2022, but that was not with an endometriosis specialist.
18:37
But I, I thought, great, you know, somebody's diagnosed me
18:40
and believes me and he's going to fix all of this.
18:43
But unfortunately, the surgery was not ideal there.
18:46
A lot of disease was missed, including some that was putting
18:50
both of my kidneys at risk. So less than a year after that
18:53
surgery, I had another one where endometriosis was removed from
18:58
multiple organs all around my sort of pelvic and abdomen
19:02
cavities. And I also had a hysterectomy
19:04
for adenomyosis and fibroids at the same time as well.
19:08
And that was just over a year ago now.
19:10
And it's been a long recovery, a very long recovery.
19:16
And unfortunately I had an MRI six weeks ago which is showing
19:19
signs of endometriosis again. So it's, yeah, it's a lifelong
19:24
journey, unfortunately. But what happens now?
19:28
I'm not sure. I'm not sure I need to, to
19:31
figure that one out. But it's, I think during that
19:34
time, I realised that this was so much bigger than me and
19:40
endometriosis and adenomerosis as well.
19:41
They're very, very clever. They make you feel like you're
19:44
alone and that you're the only one going through this and
19:46
nobody else could possibly understand because you've faced
19:49
those barriers time and time again, sometimes for decades of
19:51
being told no. It's basically in your head.
19:54
You do start to become very inward and think that you're
19:57
alone. And so I set up an Instagram
19:59
account during one of my surgical recoveries and I
20:02
realized that this is. This is so much bigger than me
20:06
and my experience. This is global and it's millions
20:10
of us that are all obviously we have our own variations on the
20:15
story, but we all have the same threads weaving through our
20:18
experience. And it shocked me to I I just
20:23
could not believe that this was a pattern.
20:27
And I couldn't understand why. Like, why are we still in this
20:30
place? And we've not progressed with
20:32
this disease since it was discovered.
20:35
It it just, yeah, it just blows my mind.
20:38
And one of the things that comes through time and time again from
20:41
talking to you, but talking to many, many other women is, like
20:45
you said at the beginning, not being listened to, not being
20:47
believed. And it's really sad whether
20:51
you've got endometriosis or any other condition that because it
20:56
doesn't fit into a diagnostic box, therefore you must be
20:59
making it up. And there are a lot of,
21:01
especially, I don't know, more women than men that it's because
21:05
of trauma. And I hear the word trauma more
21:08
and more than I've ever heard before.
21:10
And a lot of us have had traumatic backgrounds, but not
21:14
all of us have endometriosis, not all of us have clinical
21:18
depression, not all of us have PTSD, not all of us have
21:22
fibromyalgia or all these conditions.
21:25
So I find it really difficult when we label people because it
21:29
fits into our narrative of doctors, because it makes us
21:33
feel easier, because it makes it justifiable that this person
21:37
sitting in front of us has got this condition.
21:40
So there's so much that we don't know.
21:42
And you know, I've learnt so much over the last eight years
21:46
of running a menopause clinic. And that's partly, and I hate to
21:49
say this, it's partly because I've had a lot more time with
21:51
people now. I have longer appointments so I
21:54
can ask more questions. Because when you're running late
21:57
as AGP and you've only got 10 minutes and you've got someone
22:00
who's complicated with a myriad of symptoms, it's really
22:03
difficult. It's really hard to tease out
22:06
what's the most relevant. And actually what's the most
22:09
relevant to them is not the same as what's the most important for
22:12
me to make the diagnosis. Yeah.
22:15
And then that makes it really difficult because if you aren't
22:18
listened to, you do then think it's in your head.
22:21
Do you do think you're making it up?
22:23
And I've only had, I've been fortunate, it's relative word
22:28
that it was only once that I was really gas lit after I'd had
22:32
pancreatitis. I was ill for about four months
22:35
and I really, I couldn't a lot of pain, a lot of discomfort, a
22:39
lot of heartburn, a lot of epigastric pain at the top of my
22:43
abdomen. And I was seeing a specialist at
22:45
pancreatitis Dr. in a teaching hospital.
22:49
And I went and I started crying and I said, I can't carry on
22:52
like this. I can't do yoga because I can't
22:54
do a headstand. I can't even empty the
22:56
dishwasher because bending down makes me feel awful.
22:58
I'm really, well, something's going on.
23:00
And he examined me and he said I think you need some
23:01
antidepressant. And I didn't know whether to cry
23:05
or to hit him. And I, I was really shocked.
23:08
And then I went and saw a surgeon who I know who's got no
23:11
bedside manner. He's actually quite a bit rude.
23:13
It doesn't matter. He's a really good surgeon.
23:15
And he said, Louise, just I'm going to take your gallbladder
23:17
out. I think it's your gallbladder
23:18
that's playing up. He took it out the day after I
23:20
skipped literally out of hospital and I haven't looked
23:23
back. But you know, I know who to see.
23:26
I'm quite forthright with my but I, I lay there and I'd obviously
23:30
stripped off because he could examine me.
23:32
I was very vulnerable and to be told but maybe I'm depressed or
23:38
maybe I've got irritable bowel. I knew I didn't and that sounds
23:43
quite trivial compared to the pain of endometriosis, but not
23:46
at all. I just lay there thinking I
23:47
haven't been listened to. And that's what your hearings
23:50
for your social media and anyone that follows.
23:53
It's not just you, it's not just a few people, it's not just in
23:56
the UK. And I think this lack of being
24:01
listened to means that we're not advancing in science, we're not
24:05
doing the right studies, we're not asking the right questions,
24:08
we're not getting the right answers.
24:10
And more and more when I speak to people who've got
24:13
endometriosis, they have layers of treatment.
24:15
So they've often had multiple surgeries like you, which may or
24:19
may not have helped. But then they're also given
24:22
painkillers, which may or may not help.
24:25
But then they're turning to other sort of stronger and like
24:28
nerve type painkiller drugs like pregabalin and gabapentin.
24:33
And you know, you've got some experience of taking some of
24:35
those, haven't you? Yeah, it was after my first
24:39
surgery, the surgeon, I went back to him and I said I'm still
24:43
in a lot of pain. I'm still having the same type
24:47
of pain as well. And he instantly dismissed it.
24:50
And he genuinely said to me, look, Jen, I'm the surgeon.
24:53
I went to medical school. I think what you're experiencing
24:56
now is a little bit psychosomatic.
24:59
So he said let's get you some therapy and let's be aggressive
25:02
with your pain medication. And he doubled my pain
25:05
medication overnight on pregabalin and codeine and it
25:10
just, I became a zombie. I was a complete zombie of a
25:13
person. I was just as bed bound as I was
25:17
from the pain, just from being numbed.
25:19
And it's just hysteria with another name.
25:23
You know, you can trace hysteria throughout history and all it's
25:27
doing, I think it was removed only in the last sort of 50
25:31
years from the kind of diagnostic manuals.
25:34
But it's. Still there.
25:36
Like, yeah, there you go, 40 years, but it's still there.
25:40
It's shadow. We are still living in this
25:42
shadow, but it is so vast we don't even realise it's there
25:45
sometimes and it's everywhere. It's not just endometriosis.
25:49
It's not just, and it's our whole lives.
25:52
It's when a girl goes because she's having stomach pain and
25:55
she's told, oh, it's just your periods or it's right up at the
25:59
other end of life. When you know you've gone
26:01
through menopause and you're still experiencing endometriosis
26:04
symptoms and you're told it can't possibly be endometriosis
26:07
because you've gone through the menopause.
26:08
That cures it, which we know it doesn't.
26:11
And it it's just infuriating. Absolutely.
26:14
And I totally agree. And, you know, I started being
26:19
more of a menopause specialist, but now I feel like I'm more of
26:21
a hormone specialist. And thinking about our hormones
26:24
are being biologically active throughout our own body.
26:27
So it's not just our ovaries that produce them.
26:29
Obviously, our brain produces them, our adrenal glands, even
26:32
our heart produces estradiol. Like they're really important
26:36
hormones that the balance can really change.
26:38
And increasingly, I see and speak to women who have
26:41
endometriosis. They also have fibroids.
26:43
They might have been diagnosed with polycystic covariance
26:45
syndrome and there's this big overlap.
26:48
But what's going on is there's a lot of inflammation in the body
26:51
and inflammation can occur for lots of reasons.
26:55
And so people can have inflammatory diets as you know,
26:58
but if you're feeling rubbish, you're more likely to have,
27:00
well, not you, but one is more likely to have, you know,
27:03
rubbish food because it can make you feel better.
27:05
But then that can increase inflammation in the body.
27:08
But our hormones, if we don't have them, are very there's a
27:11
lot more inflammation in our body because our hormones are
27:13
very anti-inflammatory. But because people are so scared
27:17
of estrogen, because estrogen can stimulate the lining of the
27:20
wound, it can often stimulate endometriosis.
27:23
People are forgetting about the anti-inflammatory effects of
27:27
testosterone, progesterone. We've got other hormones in our
27:30
body that no one who seems to be researching at all, like DHEA or
27:34
progabilone, they're just sort of forgotten hormones.
27:37
But how much of those are relevant with endometriosis, we
27:41
don't know. And the truth is, we don't know,
27:43
no. Absolutely.
27:44
And we're all different. But you have a hysterectomy to
27:47
me so and if your ovaries were they removed as.
27:50
Well, so they kept my ovaries. Obviously they have huge
27:55
benefits for not just ovulation. So they were preserved.
28:00
Thankfully not many people get the option, but I was warned
28:03
that they had obviously been through quite a trauma because I
28:07
did have these ovarian endometriomers as well that had
28:10
to be removed. So whilst we tried to preserve
28:13
them, I was warned that, you know, they could slow down
28:16
quicker than usual, potentially within the next couple of years,
28:19
they, they could just decide to give up.
28:22
And I was given this sort of list of things to look out for
28:25
and to go to the GP if I was experiencing them for some help.
28:29
And I kind of looked at this list.
28:31
I dug it out of my medical notes one day and I was like, oh God,
28:34
that you, I'm experiencing all of these.
28:36
So I went to the GP and I was basically laughed at the room.
28:39
I was told it's impossible, absolutely impossible for you to
28:43
be feeling like this if you've got your ovaries still.
28:46
And I said my surgeon told me that there's because of the
28:50
trauma of the endometriosis and then the surgery itself, there's
28:53
a really good chance that they're going to be a bit grumpy
28:57
and either not perform as well or completely give up.
29:00
And they said it's really frustrating when surgeons give
29:04
people these kind of information sheets because then people start
29:07
looking for things that aren't there.
29:09
And I was sent home and those symptoms persisted and got
29:15
arguably worse until I met you and understood about hormones a
29:21
little bit more. But again, you were the first
29:24
one that believed that there could even be a correlation.
29:27
Up until then, it was just, no, don't be ridiculous.
29:29
You'll just you're being dramatic basically again,
29:32
hysteria with another name. It's so sad and you've given me
29:37
permission to say that, you know, you're using testosterone
29:39
and some progesterone and I've been quite open with you.
29:43
I don't know if it's going to make difference to your
29:45
endometriosis. It might reduce some of the
29:48
activity and the inflammation that's occurring, but it might
29:52
help other symptoms. And you've said already, haven't
29:55
you, that you have noticed your energy levels have improved?
29:57
Yeah, I actually feel human. Not every day and not all day,
30:01
every day, because, you know, there's still a lot going on in
30:03
there. But the difference.
30:06
And I think testosterone was the biggest eye opener for me
30:09
because I've always heard of testosterone in the realms of
30:13
either steroids in the gym, like muscular, like masculine energy,
30:17
aggression or sex drive. And those weren't things that
30:22
were really on my radar. But when you started explaining
30:25
that, actually, it's so much more than that.
30:27
And as women, we produce it ourselves anyway.
30:30
And it's a vital hormone. It's the energy, the clarity in
30:35
my brain suddenly changed. It was it was night and day with
30:40
certain symptoms, not all of them.
30:42
I'll be you know, I obviously don't want to mislead anything.
30:46
But yeah, it was the definitely energy, my excite.
30:50
I don't know what the word for this is.
30:52
I can think of it in French like that joie de vive that, you
30:55
know, that appetite for life. I started to be exciting about
31:00
my life again. Whereas before I just, I was in
31:04
this fog. And I don't know whether it was
31:06
the ridiculous amount of pain medication I was on.
31:08
I don't know whether it was just mental health effects of
31:11
everything that was happening. I don't know whether it was the
31:13
lack of hormones that were in my body.
31:16
I don't know what it was, but before it was just in this black
31:19
cloud and I could not see a life beyond pain.
31:22
Whereas once I started with the testosterone and the
31:25
progesterone, like I say, I got excited to live my life again in
31:29
a different way. Obviously this has changed my
31:31
life and it's altered so many things for me, but I could start
31:35
to see a future again that I wanted to be a part of.
31:39
And that to me is the biggest bonus that I could possibly even
31:46
ask for because I thought that was it.
31:48
I thought that was my life. I thought it was just going to
31:49
be pain and bed and that was it. And that's so important.
31:55
It's very hard to quantify people's happiness or joy, to be
31:59
in a study, in a trial. But actually, day-to-day, we
32:02
hear it all the time. And it's so important.
32:05
You know, I can't wave a magic wand and change people's past
32:09
lives. I can't change their future
32:11
lives. I can't change, you know, any
32:13
diseases necessarily, but actually enabling the brain and
32:19
body to work better with having natural hormones, fat is not a
32:21
bad thing and we need to remember that.
32:24
The other thing just before we finish is that one of the
32:28
treatments that's often given to women who've got endometriosis
32:31
is injections to suppress hormones.
32:33
There's something like Zolodex which will switch us off one of
32:37
the hormones in the brain, which means that the ovarian hormones,
32:40
estrogen, but also progesterone of testosterone, flat 9.
32:44
So it's basically making someone menopausal.
32:46
And people do that because of the fluctuations of hormones
32:49
could trigger endometriosis, like we've said, but it can
32:54
really affect people mentally and physically, though
32:57
increasingly we do give back hormones, but we give them back
33:01
at the right dose and type to them and give them back
33:04
individually. So some people are given a
33:06
combination synthetic hormone replacement, which in my vast
33:10
clinical experience isn't going to help, might cause more
33:13
inflammation because synthetic hormones are very inflammatory.
33:17
Giving the contraceptive pill can be very inflammatory as well
33:20
for people with endometriosis. So the most natural thing is to
33:24
just replace natural hormones in a lowish dose.
33:27
And some people don't need estrogen, they might only need
33:30
testosterone and progesterone, or they might just need
33:33
progesterone. We're all different, but anyone
33:36
who's listening who has had any of the injections, you should
33:39
certainly be talking about having some add back hormones as
33:42
well, yeah. And unfortunately a lot of the
33:45
kind of treatments, again, it's separating symptom management
33:48
and disease treatment. You know, treating pain and
33:50
treating symptoms is not actually treating disease.
33:53
And unfortunately, again, that lingering myth that this is a
33:55
period condition, therefore it then follows through that, oh,
34:00
the way to do that is to shut off the menstrual cycle, shut
34:02
down those hormones and that will cure it.
34:05
And we just know again, it's it's just not the case.
34:07
And things like the solid, they can work for symptom management
34:10
for some people. Some people, it has been a life
34:12
changer for them, but for others there have been some, you know,
34:17
side effects that they just were not expecting.
34:20
And it's the disease has still progressed underneath.
34:22
So yeah, it's again, getting the definition.
34:25
Until we get the definition right, nothing else that follows
34:28
will be right. Absolutely.
34:30
So I think the take home is with that we are all different and
34:34
even if we have 100 people in room with endometriosis, they
34:37
will all have different levels, different types, different
34:42
inflammation, different symptoms and they're different
34:44
individuals as well. So they need to be treated as
34:47
such. So I'm very grateful for your
34:49
time and I'm really impaired by your work because I know it's
34:52
helping so many people just so that they know they have a voice
34:55
too. So keep going is what you're
34:57
doing. But before I end, I just would
35:01
like 3 take home tips. I know there'll be people
35:04
listening to this who have endometriosis.
35:06
I know there'll be people who've got friends, family members with
35:09
Endem endometriosis. What are the three things that
35:12
they can do to make a difference for their future health when
35:16
they've got endo? Find a specialist.
35:19
I wish I knew the importance of a true specialist in this
35:23
condition right at the start. So really, you know, find
35:28
somebody, ask them as many questions as you want, because
35:31
if they are genuinely a specialist, they will not be
35:34
afraid of answering questions. So, yeah, find a specialist is
35:37
#1 #2 is don't feel like you have to do it alone.
35:42
You have your medical team, which is super important, but
35:45
you also need a team outside of the doctors, outside of the
35:48
hospital. And it doesn't matter who it is,
35:51
but just find somebody so that you're not doing this alone.
35:54
And there are so many of us, even if it's somebody online,
35:56
like just reach out because we know what you're going through.
36:00
And there's so many of us that are just happy to help, even if
36:03
it's just to talk through stuff, you know?
36:05
And my third one would be, that's a hard one to just pick
36:10
3, but I think my third one would be keep going.
36:13
So a lot of us think when you get your diagnosis, there's some
36:17
magic wand that suddenly is going to change everything.
36:20
And it, that's just the start of it.
36:22
The average diagnosis time is 9 years now in the UK.
36:25
And you kind of get your diagnosis and you're like, yes,
36:28
everything's going to change. Oh, awesome.
36:31
And then you realise actually you've got this monumental wait
36:33
list to get treatment and to try, You know, it's a long, long
36:37
slog, but keep going and keep using your voice and don't let
36:43
anybody tell you that it's not as bad as you think it is,
36:45
because you're the one living with it and you're the expert in
36:48
your own body. And yeah, just just keep going.
36:52
It's exhausting, but it's important that we did.
36:55
We do. So important.
36:56
And the fact of you being an expert in your own bodies is
37:00
important with everything. Yes, all of us are experts.
37:03
We know how we live, we know what we're feeling.
37:06
So thank you so much, Dan, and we look forward to seeing where
37:09
your work takes you as well. But it's brilliant.
37:12
Thank you. Thank you.
37:17
You can find out more about Newson Health Group by visiting
37:20
www.newsonhealth.co.uk and you can download the free Balance
37:27
app on the App Store. Or Google Play.