Latest / The Dr Louise Newson Podcast / 49 – Endometriosis, dismissal and the fight to be heard

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49 – Endometriosis, dismissal and the fight to be heard · The Dr Louise Newson Podcast

0:00
This week's podcast is all about endometriosis.
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I've got with me Evelyn Scott, who's an author and Women's
0:06
Health advocate, and she has endometriosis.
0:09
She's been turned away. She's been gaslit.
0:12
She's been told wrong information.
0:14
She's suffered herself. But she's a great advocate for
0:17
others to listen and learn from. Endometriosis and adenomyosis
0:21
are often poorly understood and inadequately managed conditions.
0:26
There's loads we need to do, but we need to start by listening to
0:29
patients. So I hope you learn a lot from
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this episode. So endometriosis is still a word
0:38
that lots of people don't know what it is.
0:40
Patients, doctors, clinicians, researchers.
0:45
People really get confused but it's one in 10 women at least.
0:49
Yeah, one in 10. Yeah, 10% of all women, they
0:52
reckon, which I think it's about 176 billion women worldwide.
0:56
It's. Quite a lot of women, isn't it?
0:57
It's an incredible amount of women and it's just as common as
1:00
diabetes. So diabetes has quite a lot of
1:02
investment in it, doesn't it? So diabetes has proactive care
1:07
and it has a great pathway to diagnosis.
1:09
Very simple, not invasive, and people tend to take it a lot
1:13
more seriously than a condition like endometriosis, which is
1:17
unfortunately suffers from being a women's only condition.
1:21
It's a problem, isn't it, when it's only women?
1:23
Yeah, absolutely. And I think there's, you know,
1:25
you hear a lot in the communities that if
1:27
endometriosis affected both genders, we would have a cure by
1:31
now. And I do think that's an
1:32
accurate way of looking at it. I think people would rather
1:36
invest money into research into diseases that affect both
1:39
genders as opposed to just women, which creates this
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horrendous lack of knowledge, which means that a lot of women
1:46
don't know where to turn and a lot of medical professionals
1:49
don't know how to treat it. Well, I mean, we've known for
1:51
years that women haven't been used in medical research.
1:54
You know, I qualified as a doctor in 1994 and that was the
1:57
year that women had to start being used in Pinnacle trials.
2:01
It's quite. Scary isn't.
2:02
It's terrifying, but it does. It doesn't surprise.
2:05
Me. No, no.
2:06
Well, because we're complicated because of our hormones.
2:08
And absolutely, absolutely. And I don't think people want to
2:12
necessarily deal with women and hormones They.
2:15
It's scary. It's really scary.
2:17
As a doctor I used to get really scared if people came with
2:21
something that I didn't know, because I'd think I should know
2:24
everything. But actually I'm older and wiser
2:26
now, and I'm quite happy to admit to patients.
2:29
Sorry, I don't know much about it, but I'll find out and I help
2:32
and I listen to you. See, I think that's really
2:34
refreshing to hear because one of the.
2:36
Yeah, One of the things I talk about a lot is wanting that
2:39
transparency from medical professionals because for years
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I've been told that there are there's treatments that work for
2:46
endometriosis. And I've never once had somebody
2:49
say to me, actually, we don't know a lot about this disease,
2:52
but I'm willing to work with you to figure out the next steps
2:57
forward. And I think that it's sort of
2:59
that experience that you talk about would change, change the
3:02
landscape for patients. It's interesting, isn't it?
3:05
I mean, you've got endometriosis, Yeah.
3:09
And whether you know, terminology, I think it's really
3:12
important. So are you a patient with
3:14
endometriosis? Are you a sufferer of
3:16
endometriosis? Are you someone that just
3:19
happens to have endometriosis? You know, that already puts you
3:23
into three different boxes always.
3:26
But you are someone with endometriosis who wants to help
3:28
others as well, and that is really important.
3:31
But whenever I read anything about endometriosis in public
3:36
domain, it's always followed with but I've not been listened
3:40
to. Yeah, and that is probably a
3:42
universal experience that every woman with endometriosis, that
3:46
adenomyosis and conditions like polycystic ovaries as well as
3:50
fibroids, people leave their doctor's office feeling like
3:54
they've been gas lit, that they've been ignored, they've
3:57
not been seen, that they've been dismissed.
3:59
And this has an incredibly damaging effect on the patient
4:03
because you end up doubting yourself.
4:05
And if you can't talk to your doctor, who can you talk to?
4:09
You know, you'll go in there for advice and yet you're being told
4:12
something. There's nothing wrong with you,
4:14
which is is unacceptable in my opinion.
4:17
Totally. I totally agree.
4:18
And you know, doctors are not gods.
4:21
We don't know everything. And also I feel very strongly my
4:24
consultations are not unidirectional.
4:27
It's not me telling a patient, it's it's working out with a
4:30
patient what's the best optional options.
4:32
And I always leave people with the options, especially if they
4:36
have a condition that's really affecting them to say, well, if
4:39
that doesn't work, then come back in X number of days, weeks,
4:42
months and we can try XYZ treatment.
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So you're left knowing that there is something because
4:48
often, and I've seen it a lot, and I you might have experiences
4:51
where patients are being told you're just going to have this
4:54
blood test and if you know better, you could go and see
4:56
someone else. Yeah.
4:57
It's the passing the bus. Yeah, all the time.
5:00
And not feeling particularly part of the process either.
5:04
I mean, I'd love to meet a doctor like you who we have a
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conversation about it and we decide as a team what we're
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going to do going forwards as opposed to being, I don't know,
5:13
you know, you can go see so and so we're going to refer you to
5:16
so and so. And it is.
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It's incredibly lonely. Lonely approach.
5:20
So let's just unpick first, really, what is endometriosis
5:24
and what is adenomyosis, Because the two are linked together.
5:27
A lot of people have both. Some people just have one, but
5:32
just to explain what they are. So the medical definition of
5:35
endometriosis is endometrial tissue like.
5:38
So it's not the tissue, but it is very similar, growing outside
5:42
where it's supposed to be, and it can attach itself to multiple
5:45
organs. It can distort the pelvic
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anatomy quite substantially. Denomyosis is a form of of
5:50
endometriosis where that tissue grows through the pelvic wall.
5:54
It's incredibly painful, like endometriosis, and the two tend
5:59
to get treated hand in hand. They're very similar.
6:02
They often occur at the same time and they do tend to have
6:05
the first. This the same treatment, or lack
6:07
of treatment as it were. Because it can cause a lot of
6:11
symptoms, a lot of pain, like you say, can affect periods.
6:16
But I don't know what you think that a lot of times people are
6:21
focusing on the symptoms, so they're focusing on the
6:24
treatments, the guidelines. We'll talk about which
6:26
painkillers to use, which in my mind is sticking a plaster on
6:31
it. It's not helping the underlying
6:33
cause. And I don't know what you think
6:35
about as a patient. I think the guidelines are
6:38
incredibly outdated and they need a substantial review
6:43
because the first line of treatment for these conditions
6:45
is let's Chuck painkillers at you and see how you cope, then
6:49
let's Chuck the pill at you and see how you cope.
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And it tends to be this process of trial and error which doesn't
6:56
actually help anybody and the research doesn't support that.
6:59
It helps quality of life and it makes the patient feel any
7:02
better. So I find it quite confusing
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that that's the the approach. Yeah, So I'm a bit unusual for a
7:09
few reasons. I'm not a gynaecologist.
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I have had gynaecology training, but I'm a general physician.
7:15
But I've also got a pathology degree, so I'm very interested
7:17
in science. And pathology is the study of
7:20
disease, so you have to know how the body works properly to
7:23
understand how diseases occur. I'm very interested in
7:26
inflammation in the body because lots of inflammatory diseases
7:31
like diabetes, heart disease, osteoporosis are inflammatory
7:35
diseases. And we have more inflammation
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when we have low hormones. And obviously, as you know, I'm
7:40
interested in hormones as well. But in my mind, endometriosis is
7:45
an inflammatory condition, but it's also a multi system
7:49
condition because people can get endometriosis deposits on their
7:53
bowel commonly, but also on their diaphragm, their lungs.
7:57
They and they you were to think, get it anywhere in their body,
8:00
really can't. Yeah, and I think the most
8:03
recent research does prove that actually it isn't a
8:06
gynecological disease. It's an inflammation disease.
8:09
And it does affect every system of the body.
8:13
I myself have had, well, I do have endometriosis on my bowel
8:16
and I've had have a bowel resection and the bowel symptoms
8:20
were absolutely horrific and they weren't necessarily
8:24
occurring at the same time as my period.
8:27
It was constant. But it really, the endometriosis
8:30
really, really attacked my bowel, but it also caused things
8:33
like migraines and you know, and fatigue.
8:35
So it does affect every system in the body.
8:38
So we need to start looking at it as an inflammatory disease as
8:42
opposed to a gynecological disease.
8:44
Yeah, so I'm not a surgeon. I'm very cat candid and but when
8:48
I was doing gyne training, people would come in with
8:51
endometriosis and then the surgeons, the gynecologists
8:55
would say, oh, this lady has, we thought would have extensive
8:58
endometriosis, the amount of pain she's in, but there's
9:00
nothing really much there, maybe a little bit.
9:02
And other people, they would open and find really extensive
9:05
endometriosis with very little pain.
9:08
And it was the first time then that I'd experienced this sort
9:10
of dismissal of women like, Oh, my goodness, she can't be in
9:13
that much pain because there's nothing to see.
9:16
Or like, why isn't she complaining more?
9:18
Because there's lots. But it's quite incongruous that
9:22
what you see is not is not what you feel.
9:24
So then in my mind, it's like, well, what is going on in the
9:26
body? Yeah.
9:27
Do you see what I mean? And when they say, well, we cut
9:29
it out and it's all gone, is, is that the right treatment?
9:33
Like I'm. It's not as simple as that at
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all. And I think from my experience,
9:37
you're talking to a lot of women people.
9:39
I mean, there's a staging system which doesn't really reflect the
9:43
experience of the patient at all.
9:45
And I think you can have horrendous symptoms and yet have
9:48
very little endometriosis inside.
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There's this complete disparity of the experience of symptoms
9:54
and what stage you are, which is why I found the staging is is
9:57
quite inaccurate, I think. And it's quite misleading
10:00
because you're, I think your experience of the symptoms is
10:03
much more important. Yeah.
10:06
And and also like I've learned a lot over the years because I
10:08
learn all the time from patients and I've got a lot of clinical
10:11
experience. But there seems to be a big
10:13
overlap between people with endometriosis, polycystic
10:18
ovarian syndrome, fibroids, earnest and loss syndrome,
10:24
probably a bit more selling in activation and maybe
10:29
fibromyalgia, migraines. And they've almost like in for
10:35
some people, not me, but some people they put in the books.
10:38
They're the heart stink patients.
10:39
They're the ones we don't know what to do.
10:41
Whereas I think what is the common denominator?
10:44
Why is it that so many women have all these things?
10:47
And I'm very anti labeling women or or or men.
10:50
I think it's not helpful for the patient.
10:52
It might be helpful for the doctors.
10:54
It's absolutely. Unhelpful.
10:56
It doesn't like I don't you don't really care what any
10:58
conditions call. What you want to do is what's
11:00
what's causing it. Yeah.
11:01
So then thinking about inflammation, thinking about
11:04
what is the root cause of all of these.
11:06
A common theme that is always going through in my clinic is
11:09
women who have low testosterone and progesterone, actually less
11:14
so the estudiol, but the progesterone and testosterone
11:17
are very, very anti-inflammatory and a loss of women with
11:21
polycystic ovarian syndrome, for example, have been told, well,
11:23
you've got high testosterone, No one's looking at their low
11:26
progesterone and that's why they're not having periods.
11:30
They've got more inflammation in their bodies and, and the same
11:32
with endometriosis. One of the treatments as you say
11:36
in the guidelines is give people contraception.
11:38
So people think they're having hormones, but they're not.
11:41
They're having synthetic chemicals.
11:43
Really. And they don't know that.
11:44
They're not being told that at all.
11:46
And a lot of doctors don't know that.
11:47
And I'm, I'm sitting here squirming because, you know,
11:50
2025 years ago as a, as a doctor, I'm still a doctor now,
11:54
but as a GP, I would work out of those guidelines.
11:57
And I would say to women and girls say in their 1415 year
12:01
olds, we go on the pill as treatment and.
12:04
It's an umbrella treatment, and it's an umbrella treatment not
12:06
just for endometriosis. You know, it's if a woman
12:09
presents with even slightly, you know, symptoms which can't be
12:13
explained, they're like it's a period issue.
12:16
Put them on the pill. Yeah, and I, I'm very conscious
12:18
because I've got three daughters and my youngest daughter's 14.
12:22
So her, I don't think she'll mind me telling the world, but
12:25
her, her period started a couple of years ago, you know, lots of
12:27
people. I can't remember 1213.
12:30
And she has uncomfortable periods.
12:31
She feels a bit low. I sometimes see her crying in
12:34
the shower. And then we all go, you're
12:36
right, Lucy. And then her period comes and
12:37
she's fine, but it's not too bad.
12:39
But she has very, very heavy periods and very painful.
12:43
Now, 10 years ago, I would have recommended her to probably see
12:46
the doctor and go on the contraceptive pill.
12:48
I don't want her to go on a contraceptive pill because I
12:51
don't think it's the right thing for her.
12:54
You probably, if you took a really big history, you might
12:57
even think she might have endometriosis.
12:59
But it's very hard, as you know, to diagnose, especially young
13:01
people. So in the old days, if you like
13:05
she or even now for some people, she might be given the pill and
13:08
then in 10 years time probably would be diagnosed as
13:10
endometriosis. But I'm not convinced she has it
13:12
now. I think she has changing
13:15
hormones and she probably doesn't have enough progesterone
13:18
to support her her hormones properly and having some natural
13:23
hormones is probably the best thing just to supplement.
13:26
As well as looking at her diet. She's low in iron, so giving her
13:31
an iron supplement, giving her some vitamin C, you know,
13:34
looking at any other supplements is actually really important.
13:38
It is, yeah. But that's something that's
13:40
quite, I know I'm a bit out there, but it's it takes a bit
13:43
more effort. Yeah, but it's not out there.
13:45
I think that's the correct way to treat somebody in that
13:48
situation. But the problems I've
13:50
encountered is I didn't realize how important a blood test was
13:54
to measure your hormones until quite recently.
13:57
And I've had real battles with the NHS saying I want to find
14:01
out what my hormones are doing before you start doing anything.
14:04
And then always doesn't make a difference.
14:05
And it's, well, actually it does.
14:06
I'd like to have a full picture. And it's really hard to get that
14:09
information unless you go looking for it.
14:12
Like you see someone like yourself and you find a
14:14
specialist. It can be really difficult.
14:16
But I think there is, I mean, there is.
14:18
I think nutrition plays a big part in it as well.
14:21
I mean, I've stopped eating gluten and found that that
14:23
really helps me. I wish I could cut out dairy,
14:26
but I like cheese far too much. But every, every, there's a lot
14:30
of roles that these things can play in the in the management of
14:33
this condition. Absolutely.
14:35
And I think when you think about anything that increases
14:38
inflammation, it makes sense. It might make a condition such
14:41
as endometriosis or adenomyosis worse.
14:44
But what I often see and I, I don't, I absolutely understand
14:49
is that women go on the pill, contraceptive pill, the mood
14:53
flattens. They might go on
14:54
antidepressants, then they might put on some weight, then they
14:57
might feel rubbish. So then they comfort eat.
14:59
And if you comfort eat, you're not going to eat the best food
15:02
ever. So then you eat not you.
15:04
I'm not saying you, but one, Oh, I've done an inflammatory, you
15:08
know, diet might be drinking more alcohol.
15:12
So it's just layers and layers and layers, which I don't think
15:16
is very helpful. And then I speak to a lot of
15:18
women who get given Zolodex injections.
15:21
So which will basically just block alcohol, hormones, or a
15:24
lot of women have their ovaries removed because it's a hormonal
15:27
problem, but actually removing the hormones means there's more
15:31
inflammation in the body? Yeah, and that's where I'm at.
15:33
I had a hysterectomy in February, and I have one ovary
15:36
left, right. And actually, I'm back where I
15:39
started. I'm in pain again every day.
15:42
And I was told, wait, I knew better.
15:44
I know there's no cure for endometriosis, but I was led to
15:47
believe I would feel a lot of relief once that, you know,
15:50
everything was gone. And actually, it hasn't made a
15:52
lot of. Yeah.
15:53
And I actually really regret having such a substantial
15:56
operation with such a long recovery.
15:59
Yeah, because it's done. It's it feels like it's done
16:01
absolutely nothing. That's hard, isn't it?
16:04
It is really hard. And I think the problem is we're
16:07
told this information by our doctors and we trust, you know,
16:12
we, they have medicinal authority.
16:15
They know what they're talking about a lot of well, they, they
16:17
make you feel like they do. And then I know when my
16:20
endometriosis came back, although I don't think it ever
16:22
left, I began to think, my God, you know, maybe I'm the problem,
16:26
you know, what's going on. And, and when I've gone back and
16:29
I've said, could we look at other organs and see what's
16:31
going on? And people just sort of frown at
16:34
me and roll their eyes and it just creates this horrible sense
16:38
of loneliness and that you are part of the problem and what can
16:41
you do? It's very.
16:42
Hard, isn't it? Yeah.
16:43
Have you been made to feel like a time waster?
16:45
Absolutely. I actually on my third
16:48
laparoscopy ablation surgery, I was told by a female surgical
16:52
assistant that they were likely not to find any endometriosis on
16:57
me. They were just humouring me by
16:59
giving me this procedure. Yeah, humouring me and I'm
17:02
afraid I lost my temper. And I said, well, actually if
17:04
you looked at my medical, medical history, you would see
17:07
the endometriosis has been seen my last, my last procedures.
17:13
And I just, I really don't appreciate you talking to me
17:15
like that. And then she went very quiet
17:17
when the surgeon came back to me with the iPad with the images
17:19
showing me the endo. But I've been made to feel like
17:22
I'm completely wasting people's time.
17:25
I've gone to A and EI mean last year I spent a lot of time in
17:28
A&E because of having a lot of bowel problems and the
17:31
consultant would tat at me and say, you know, why are you back
17:34
here? We've told you this is what
17:36
you've got to do. And it's like what?
17:39
I'm struggling, you know, I've done what you've said and it's
17:42
not working and I'm in horrendous pains.
17:44
The point where I don't know if something really seriously bad
17:46
has happened. It happens a lot.
17:49
And in fact, when I was in my teens, I was told that
17:52
endometriosis is what you were told you have, if you've just
17:57
got you're, you're just complaining about your periods,
18:00
which is just irresponsible. And I don't know how anyone can
18:03
say that. Starting in April this year, I'm
18:08
going back on tour across the UK with a brand new show, Breaking
18:12
the Cycle, The Power of Hormones.
18:16
I'll be visiting 45 venues and my aim is to challenge what
18:20
we've been told about hormones, to unpick the science that's
18:24
often overlooked, and to explore why there's still so much
18:28
confusion and misinformation, particularly around hormone
18:32
health. Our hormones influence
18:34
everything, our mood, our sleep, our metabolism and our future
18:39
health. Every single cell in our bodies
18:42
is impacted by hormones, yet so many people are still left
18:46
without clear answers. So in this show, I'll be sharing
18:50
research, some history, the real stories, and some very
18:54
uncomfortable truths. There will be moments that
18:57
surprise and maybe shock you, and plenty of opportunities to
19:01
reflect and ask me questions. So if you want to learn, feel
19:04
empowered, and be part of a movement that's changing how we
19:08
think about hormones, I'd love to see you there.
19:11
You can buy tickets through the link in the show notes.
19:16
We find it really sad as a doctor to hear the way people
19:20
have spoken to because one of the first things I learned as a
19:25
as a medical student is listen to your patients and believe
19:28
your patients. I don't believe there might be a
19:31
very small handful of people, but I don't believe people come
19:34
and make up symptoms. I don't believe they want to be
19:37
ill. I don't believe they want to
19:39
waste anybody's time. Yet so many times I hear the
19:44
word heart sync patient and it's like, that's basically saying
19:49
the doctor doesn't know what's wrong and it doesn't fit into a
19:51
diagnostic model. And you know, and it's the same
19:55
with anyone with any hormonal issues.
19:57
If you can't work out what's wrong, you just go oh.
20:00
There must be something wrong with them.
20:01
And it happens all the time in Women's Health.
20:04
You know, women are more likely to be malingerers.
20:06
We're far more likely to be diagnosed with personality
20:09
disorders. Sensitive.
20:10
Yes, yet again, thinking about, you know, underlying pathology.
20:14
I'm very interested in pain modulation and the role of
20:17
hormones, how they affect our pain receptors.
20:21
So our estrogen, progesterone, antistosterone can affect our
20:24
opioid receptors, for example. So they work as natural
20:27
painkillers. So a lot of people have
20:30
worsening pain and their pain threshold changes before their
20:33
periods. So a lot of people will probably
20:37
have the same stimulus, but they would experience pain
20:40
differently. So a lot of people will just
20:43
have more pain regardless of the 'cause if they don't have
20:46
hormones. But actually I would much prefer
20:49
to have hormones than I would to have, you know, oxycodine or
20:53
codeine or morphine. But it's just never really
20:56
thought about. It's like women just complain of
20:58
pain. More and it's funny because you
21:00
can go to the hospital and they can say all your tests results
21:03
are normal, there's nothing wrong with you, and yet they
21:05
will still give you a bag full of codeine and send you home
21:08
with it. So they know that something
21:10
isn't right, but they're not going to do anything about it.
21:13
You just need to go home and take pain relief.
21:14
And it's not the answer. And I do think we get tolerant
21:18
to pain relief. She's doing this, there's
21:20
addiction and also morphine painkillers can actually induce
21:25
menopause. They can block the hormones
21:26
working. That's why a lot of people have
21:28
flushes when they're on morphine.
21:29
So they're not without risks. But one of my patients told me
21:33
yesterday that, so she's young, she's in her mid 20s and she's
21:37
got endometriosis and she also has PMS of premenstrual
21:42
syndrome. And she's responded amazingly
21:45
well with cyclogest, which is vaginal progesterone, as you
21:48
know, it's just been transformational for her.
21:51
And she's just come to the three month review and she'd gone to a
21:55
doctor to try and get it. And her doctor said, no, you
21:58
can't have it. It's not on the guidelines, but
21:59
I can give you cocodamol. So she's now on quite a high
22:03
dose of Cocodamol. She's feeling a bit Spacey.
22:05
And she said, I just don't know what to do.
22:08
Like I don't really get why medicine is failing women
22:11
because she's young and she can't afford to buy cyclogist
22:15
privately. I can't persuade a doctor on the
22:19
NHS to prescribe something that I know is going to help her.
22:23
And it just seems weird that it's not just she can't have
22:27
that medicine, she's actually been given something that has
22:29
risks and side effects with it. Absolutely.
22:31
And they'd much, I think a lot of doctors would much rather
22:34
give you something that does have horrendous side effects
22:36
than deal with things, you know, than prescribe things like
22:40
cyclogist. I mean, I was quite lucky in the
22:43
sense that my private doctor managed to convince my GP to
22:46
prescribe me Ute gesten cyclogest.
22:49
But she did say to me, you know, they're probably not going to
22:52
like this. But I was very lucky and I think
22:56
that's part of the problem. It's a bit of a post code
22:58
lottery. If you have a doctor that is
23:01
sympathetic, that understands endometriosis and understands
23:05
that there isn't much known about it and we need to think
23:07
outside the box with it, great. You're lucky.
23:09
But there are so many women out there who don't have doctors
23:13
that are empathetic and that understand.
23:15
And I think we as society prescribe painkillers so readily
23:20
because we want to, like you say, put a plaster over it
23:23
rather than fix it. And, you know, and it's sending
23:26
a message, you know, that we're a society that's in pain.
23:29
And nobody's ever thinking, well, why?
23:32
You know, what is the root cause?
23:33
How can we look at this differently and help these
23:36
women? Because pain, personally
23:39
speaking, being in pain effects my quality of life in a huge
23:42
way, as it does with everybody. And I think people forget that
23:45
it's about quality of life as well.
23:47
It's sort of, you know, you, you have this condition, you're
23:50
being really annoying, but you keep coming back.
23:52
And actually when it does affect your quality of life like that,
23:55
you're crying out for help and you're saying, you know, the
23:58
painkillers aren't working. What can we do differently?
24:01
And there isn't often an answer. No.
24:05
And I think because there's so much uncertainty because people
24:09
don't know, then it's they're often not addressing the problem
24:13
in the right way. But they're also, you know, that
24:16
we said at the beginning, it's just that listening to the
24:18
patient. But if something doesn't feel
24:20
right, it probably isn't. And like I've known that for
24:23
many years. If I sit in a consultation and
24:26
it feels a bit awkward, then it means it feels awkward for the
24:29
patient too. And they I I was really lucky
24:33
when I was training to be AGPI, had an amazing trainer and he'd
24:36
say, just say to the patient, this is feeling a bit awkward
24:39
and uncomfortable. How does it feel for you?
24:41
Yeah. And I was like, I can't ask
24:42
that. That was going to make me sound
24:43
like an inadequate Dr. it. Would be so nice to hear that
24:46
though. Yeah, because I'd be like, you
24:47
know what? They're human as well.
24:48
Well, I think, I think that's important and I do a lot to say
24:52
to patients. How does that sound to you?
24:54
Are you, are you comfortable with that decision?
24:57
And if people aren't, then that's fine.
24:59
Yeah. But we've got to work out.
25:00
Another way I think The thing is now doctors have a 10 minute
25:04
slot to see a patient where you can't really have those levels
25:08
of open communication you're it feels like a numbers game.
25:11
And I know I often feel like a number when I go to my GP
25:14
because I'm aware they've got only this certain amount of
25:16
time. We don't have time to discuss
25:18
what's been going on, what's working and to plan.
25:21
It's very much get in, prescribed something, get out
25:24
the door, whereas most women I speak to would love to have a
25:27
doctor that would have a conversation with them and you
25:29
know, so what's going on at the moment?
25:30
Yeah, I get that. But you know, I've worked as AGP
25:33
for many years and you can get a lot done in 10 minutes actually.
25:36
Maybe it's just my practice then I.
25:38
Think like if you invest time in patients, it reads a lot of
25:45
dividends going forwards. Yeah.
25:47
And I think also patients are more prepared than they used to
25:50
be. They're better advocates for
25:52
their health. Some people don't like it, and I
25:54
see that a lot. A lot of doctors find it really
25:57
uncomfortable when patients have got knowledge.
25:59
I've had that experience myself, and it sometimes does your
26:03
massive disservice, I think, because a lot of a lot of
26:06
doctors don't want to hear that you know what you're talking
26:09
about, which is horrible to say, yeah.
26:12
But you see, I love it and my my job partly as an educator that
26:16
I've worked in medical education and communication for many, many
26:19
years. And I feel that I shouldn't have
26:22
access to information that you don't.
26:24
We might be able to read it and understand it in different ways,
26:27
but I feel very strongly, it's so easy now to be able to go to
26:31
Pub Med, read Open Access articles.
26:34
Why should it just be me as a doctor being allowed to have
26:37
that information? And but a lot of doctors I know
26:40
are quite paternalistic and they don't like that and they like
26:44
this sort of control. I mean it don't get me wrong,
26:47
it's awkward when someone comes in and they say I want this
26:49
treatment. I've read it on the front page
26:50
of the Daily Mail and it's been tested on 2 mice and they want
26:53
it tomorrow. But again, you can talk through
26:56
it and talk about expectations, but I think if if patients are
27:00
empowered, then you have a lot better consultation because you
27:04
know where they're coming from. Absolutely.
27:06
And I think with diseases like this, you have to go out there
27:09
and speak to other women. I mean, I've educated myself by
27:13
talking to other patients. And I don't think it's, I mean,
27:16
it'd be very easy to blame the doctors and I think a lot of
27:19
people do, but it's not the doctors felt they don't have the
27:22
information either. They don't have the training.
27:24
And I was speaking to Professor Horne at University of Edinburgh
27:28
and he was saying that, you know, a lot of doctors really
27:31
panicky about seeing people with pelvic pain because they don't
27:34
have the answers and they don't know how to say that and
27:37
communicate that. So a lot of people think, you
27:39
know, that they're just being dismissive, they're being cold
27:41
to me, when actually they're kind of floundering the dark,
27:43
floundering the dark. Then they should say it.
27:45
I think I feel very strongly, you know, there are certain
27:49
things that I really don't know how to treat.
27:52
You know, my husband's a reconstructive surgeon.
27:54
I have no idea really about the insurance and outs of his
27:57
surgery. But when I reached to a level
27:59
where I'm not sure it's quite all right to admit, to say I
28:04
don't know. And actually I've done it
28:05
before. If, if I've got a 10 minute
28:08
appointment and in 3 minutes time, I know that I'm really out
28:11
of my comfort zone, I will say to that person, I'm really
28:14
sorry. I don't think I'm the right
28:15
person, but I think you should go and speak to this person,
28:17
that person come back and see me.
28:18
If that doesn't work because you don't want to waste your time, I
28:22
don't want. To really helpful approach I
28:24
think and I. Think as as patients we should
28:26
be allowed to say that as well. I had a pancreatitis about 20
28:31
years ago and I was really poorly.
28:32
And afterwards I still have pain in my Apigastrom, like to start
28:36
up here. And I didn't really know what
28:39
was going on. And I found it really difficult
28:41
just to bend down to pick up my children, to do the washing just
28:44
day-to-day. And I was really flummoxed and I
28:46
went to see a specialist and he referred me to another
28:49
specialist. And after about six months, I
28:52
kept going, I'm having more scans and I thought it was my
28:54
gallbladder. And he kept saying it wasn't and
28:56
it'd be too dangerous to have it taken out.
28:58
And like they're their little girl, what do you know?
29:00
And I was like, well, this is, I just don't know what else to do.
29:03
I'm really struggling. And the last time I went to see
29:05
him, I started crying and I don't often cry.
29:08
And doctors and I said I'm really quite uncomfortable and I
29:12
don't know what to do. And then he said, well, you've
29:13
got irritable bowel and you just need some antidepressants.
29:16
I think you're a bit depressed now.
29:18
Firstly, I don't have irritable bowel and I didn't have any
29:20
bowel issues and secondly I was really fed up but I wasn't
29:23
depressed and this was quite a few years ago and I just thought
29:27
actually this is awful. This is what patients must feel
29:29
like, I think. The minute you show emotion,
29:31
yeah, it's been turned against. You.
29:33
Yeah, Well, it was. Situations and I I then.
29:36
Went and said to my husband, I'm not going to go and see him
29:39
again because he didn't understand.
29:40
I'm just going to go and get my gallbladder taken out because I
29:42
feel that's problem. So I went to go and see quite an
29:44
aggressive surgeon who's got no bedside manner at all.
29:46
But I just want my gallbladder taking notes.
29:48
Yeah, that's fine, I'll do it. And he did it with no bedside
29:51
manner. But he was a great surgeon and I
29:53
woke up after the operation and I felt fine other than being in
29:55
a bit pain. And it was the best thing.
29:58
And I wrote to the doctor afterwards to say just to let
30:00
you know, I have my gallbladder taken out.
30:01
I feel well, you might want to know that for future patients.
30:03
But he didn't contact me again. But that made me realise how
30:06
isolating and hard it is for patients.
30:10
So to be an advocate, but to do the work that you're doing, to
30:13
advocate for others as well is really important.
30:15
So you've written a book? Yes.
30:17
So it's called a bloody scandal. It's a deep dive into
30:21
gynecological neglect worldwide. So it looks at the systems,
30:26
medical systems in different countries.
30:28
It also follows the life of a woman from her first period to
30:31
when she may experience symptoms to getting a diagnosis, the
30:35
treatment and how to navigate that process.
30:39
And it also a big call for change to call systems into
30:41
account and try and get research where it matters, trying to get
30:45
them governments to pay attention and yeah, just to how
30:48
to change things up a bit and get some get some change going
30:52
on. So powerful title and powerful
30:55
contents I bet. It's been great writing it and
30:57
I've spoken to so many women for it and they've been brilliantly
31:01
brave and sharing their stories. There's a lot of their stories
31:04
in there which I hope will make people feel less alone while
31:08
they're going through that themselves.
31:10
Great, Well done. Thank you.
31:13
So we've got a lot to do with endometriosis.
31:16
We're doing some research which I wanted to be involved with.
31:19
I think the conversation is turning and I I think the role
31:22
of hormones, especially progesterone, testosterone is
31:25
really going to change a lot of people's thoughts.
31:27
But before we finish, I just want to ask you 3 ticking tips,
31:33
but three things that if someone's listening and thinking
31:36
that's all very well, I've got endo or I think I've got endo
31:40
but I'm getting nowhere. What three things do you think
31:43
these people could do? In hindsight, I wish I'd known
31:47
how important it was to speak to an endometriosis specialist.
31:51
And they're very difficult to find and there aren't many of
31:53
them, but they are worth their weight in gold.
31:56
Trust your instincts, trust your body.
31:58
Don't feel that mind body disconnect that I often felt or
32:01
I was really thinking of. Is this all in my head?
32:03
Even if you were made to feel that way, trust how you feel and
32:07
you know, and write things down. I think it helps.
32:10
I mean, I have a bullet point list that I take to my whenever
32:13
I go to see any medical professional and I talk about
32:16
what's been happening, what you know, how I feel, you know,
32:20
everything that you can think of.
32:21
Get on that list so that you are equipped.
32:23
So if you do have a little wobble when you're with the
32:25
doctor, you've got it there and just trust your instincts and
32:29
don't be afraid to say, you know, actually that doesn't feel
32:33
right. I would like this.
32:35
Don't be afraid to speak your mind because at the end of the
32:38
day, you are the patient. You're there to be looked after,
32:40
and the doctor can't help you unless you voice those concerns
32:43
as well. So yeah, just trust your
32:45
instincts and and speak up. Very good, really sound advice,
32:50
so thank you so much for sharing your time and your experience.
32:53
Thank you for having me. It's been a pleasure.
32:54
Thank you. I've got something really
32:58
exciting to share with you. Every Thursday I'm going to be
33:01
releasing an extra episode for those of you that sign up.
33:05
It's an opportunity that I can have more guests share more
33:09
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33:13
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33:15
money is going to be used to help with research, much needed
33:19
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33:22
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So have a look and subscribe and enjoy.