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Season 4 Joyce Harper is Professor of Reproductive Science at the Institute for Women’s Health, University College London, author, public speaker, scientist and host of the podcast Why Didn’t Anyone Tell Me This? Together with expert guests and people with lived experience, this podcast offers practical tools to help you build a life of good health and happiness. www.joyceharper.com Instagram, TikTok: @profjoyceharper Facebook: Global Women Connected
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Professor Ertan Saridogan – Understanding
endometriosis
Sat, Nov 16, 2024 10:26AM • 1:15:07
SUMMARY KEYWORDS
reproductive health, endometriosis stages, chronic condition, pain symptoms, fertility difficulties,
diagnosis delay, genetic factors, hormonal contraceptives, pain management, supplements
effectiveness, menopause impact, surgical complications, inflammation targets, preventive medicine,
teacher education
SPEAKERS
Ertan Saridogan, Joyce
Joyce 00:01
Welcome to my podcast. Why didn't anyone tell me this? With my guests, we are discussing
reproductive health issues, questions you may have about your health, and debunking some of the
many myths. And in this series on beyond the bleed periods, endometriosis, PCOS and more, it's a
pleasure to talk to a long time friend of mine, Professor er tan, Sarah Doan, I mean, trying to
pronounce, trying to learn how to say that, about understanding endometriosis. Now, urtan is a
professor at University College London and a consultant in reproductive medicine and mini minimal
access surgery at University College London hospitals. He is a past president of the British society of
gynecological endoscopy and current president of the European Society of gynecological endoscopy.
His clinical interests include laparoscopic and hysteroscopic surgery for benign gynecological
conditions, reproductive surgery, endometriosis, fibroids and outpatient hysteroscopy. His research
interests include non invasive diagnosis of endometriosis, clinical outcomes following endometriosis
surgery, outpatient hysteroscopy and the and the place of screening and risk reducing surgery in
women with a history of familial cancer. Ersat has been working on endometriosis since 1983 he is
considered one of the world leaders in endometriosis and has co authored the three versions of the
Estro, which is the European Society of Human Reproduction and embryology guidelines on
endometriosis, and he's invited to speak about endometriosis at many international conferences.
Welcome urtan.
Ertan Saridogan 01:55
Hello Joyce, nice to see you.
Joyce 01:58
Now. I'd love to start my podcast by asking my guests what led them to the career they are doing now.
So can you tell me why you wanted to be a doctor and what sparked your interest, specifically in
endometriosis?
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Ertan Saridogan 02:14
Okay, yes, interesting question. Well, from an earlier age during my secondary school, high school
years, I was interested in science, and I was very good at maths, biology, chemistry, and I wanted to
choose a subject that I could easily put into practice and help other people. And choosing medicine was
no brainer. It was the obvious option for me. So I went into medicine. So in terms of my history with
journey with endometrials, this obviously, it starts in 1983 I was a year for medical student. At that time,
I was doing my rotation in Obstetrics and Gynecology, and I attended a lecture by one of the associate
professors, Professor cutai bibero, so some of us who are in the field of endometriosis will be familiar
with vibero Berman scale, which is the father of the quality of life questionnaires that we use these
days. So Professor, vibero had just come back from Michigan, and I was studying medicine in Ankara.
So he had just returned from Michigan having completed a research project on medical treatment of
endometriosis using dinosaur. Dinosaur is a historical treatment, and I found that lecture fascinating,
and little did I know at that time that endometrisis was going to take up a lot of my time, rest of my life,
and there we are. I'm still in the field of endometrisis since then, so done. Us all is no longer used in
clinical practice, but endometriosis is very much relevant to millions of women around the world. Hence,
the subject is of significant relevance to many of us.
Joyce 04:40
Yes, and I bet you thought in 1983 that we'd be further along with the cure for endometriosis. But as
we'll discuss today, it's not that simple, is it to treat endometriosis?
Ertan Saridogan 04:54
Unfortunately, not. It's considered a chronic condition as. So when we talk about treating
endometriosis, managing endometriosis, we are not talking about curing it. We are talking about
improving the symptoms, improving quality of life. Even after surgery, surgical excision, the symptoms
may not go away altogether, and then there is a significant risk of recurrence after both medical and
surgical therapies.
Joyce 05:31
Yes, it's certainly complicated. So let's start by Can you explain? What is endometriosis, and there are
different stages. So what are the different stages?
Ertan Saridogan 05:41
So endometriosis is presence of tissue similar to the lining of the womb being present outside the
womb. So when it is found outside the womb, it's called endometrisis. Sometimes it can be found in the
muscle layer of the womb, and that is named as adenomyosis. So it is they are quite often found
together, but their location is different. Endometriosis can be found anywhere in the body, but most
commonly is found in the pelvic area in the ovaries or on the surface of the ovaries or around the
structures around uterus, ovaries, fallopian tubes. But it can affect the digestive system. It is one of the
most common additional non gynecological sites. It can affect bladder. It can affect the upper abdomen,
the diaphragm. You can actually whatever tissue you can think of, endometriosis can be found there,
apart from the spleen. It's not clear why it's not described in the spleen. It may be something to do with
its immune function, and, yes, stages. So obviously this is a kind of changing concept. Traditionally, we
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use minimal, mild, moderate, severe endometriosis, but this is now becoming a less popular this
approach, because there isn't a real correlation between symptoms and and these stages that we use.
For this reason, there are different approaches to describe the extent of endometriosis, depending on
the organs involved and also the nature of the lesion of endometriosis and size of the lesion. So there
endometriosis is quite often found in the pelvis, as I explained earlier, so that it may be like a superficial
spot, or superficial spots. We call it superficial or peritoneal endometriosis. It may be in the ovaries in
the form of cysts, fluid filled cysts, and we call them ovarian endometriosis. And then usually these
cysts contain old blood, and Old Blood takes like a brown color looking similar to melted chocolate.
That's why they are quite often referred to as chocolate cysts. And then there is the concept of deep
endometriosis, when there is a mixture of scar tissue with tissue from the lining of them, and then they
they generate these solid lumps called nodules. So in other words, we are talking about three main
types superficial endometriosis, ovarian Endometriotic cysts and deep Endometriotic nodules.
Joyce 08:57
And what sort of problems will these cause women? What are the symptoms that they get with
endometriosis.
Ertan Saridogan 09:04
So some women with endometriosis will have no symptoms. So it's not always symptomatic. It may be
completely incidental, and the woman may not have any symptoms, but when it does cause symptoms,
the two groups of symptoms are either pain or fertility difficulties. Pain is usually during periods, painful
periods that we call as dysmenorrhea, pain during sexual intercourse, pain during opening bowels. Are
three common types of pain that women with endometriosis may describe. Apart from this, especially in
women who have suffered from endometriosis for a long time, pain may start occurring outside periods
as well. So it may be constant pain, as we described, chronic pelvic pain, and depending on the
location, we might see other types of pain. For example, if it's affecting the bladder, it can cause painful
urination. If it's affecting the diaphragm, it can cause pain on the shoulder tip, usually during
menstruation. So sometimes we see women with endometritic nodules, lumps in the abdominal wall, or
cesarean scars, and they usually describe pain in those locations, usually worsening during periods. So
these are the common pain symptoms. And then the second group, as I mentioned, is difficulty in
getting pregnant. And
Joyce 10:50
so it seems to vary a lot between different women. Do we know why that is?
Ertan Saridogan 10:56
Obviously, there are different types, as I explained earlier. And secondly, location can make substantial
difference. You know, if it is located, for example, in the bladder, then then inevitably, the woman may
dominantly suffer from bladder related symptoms. If it's on the bowel, she is more likely to describe
bowel related symptoms. So that there is, there is a lot of variation in terms of location. The other the
issue is the extent of of the condition. Sometimes endometrisis may be relatively a minor minimal and
this may cause less symptoms, whereas with very extensive endometriosis, symptoms may be more
substantial, having said that there is no direct correlation with the extent of endometriosis and severity
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of symptoms. Some women with relatively minor endometriosis may have very severe symptoms, and
vice versa. Women with very extensive endometriosis may have no or very little symptoms,
Joyce 12:19
and that's how common is it? Well,
Ertan Saridogan 12:21
so it's estimated that about one in 10 women have endometriosis in reproductive years. So if we look at
women between ages 15 and 50, as we describe as reproductive years, therefore it's estimated, like
around the world, around 190 million women have endometriosis. Many of them may be asymptomatic,
without any symptoms, but this is the estimate. It's not always very easy to diagnose, because
sometimes diagnosis requires looking inside the abdomen with a camera or at open surgery, and
because of that, we may have some women in whom we don't have the obvious diagnosis. Therefore
we are talking about estimates based on published research from various sources.
Joyce 13:21
So I was going to ask you about diagnosis, because we hear so often that women have taken years to
be diagnosed. So if they have symptoms of pain, especially around their periods, and they go to their
doctor, why would it why would it take so long to get endometriosis diagnosed?
Ertan Saridogan 13:40
So the one one issue is obviously awareness, lack of awareness amongst young women or women in
general, lack of awareness amongst healthcare professionals, or the assumption that period pains are
normal, so that you know that they are common in teenagers. As they become older, they disappear.
Type concept can actually lead to ignoring these symptoms and not taking action in terms of exploring
it, investigating it further or trying to treat it. So these are probably common reasons why diagnosis may
be delayed lack of awareness. But the other reason is that quite often it is hidden in the pelvis, and
especially if it is like superficial spots or or no dues that are difficult to see on imaging, the diagnosis
may only be made when you look inside the abdomen with a camera with endoscopy. It's obviously, it's
an amazing. Investigation, and because of that, diagnosis can take some years to make. Therefore we
quite often hear complaints that women may have taken 10 years, more than 10 years, to have a
diagnosis, the average duration of delayed diagnosis these days seems to be calculated at about eight,
eight and a half years these days. Having said that there has been improvements in terms of our ability
to diagnose, we used to say that gold standard for diagnosing endometriosis was laparoscopy,
endoscopy, examination of the inside of the abdomen. But with advances in imaging technology, it high
definition ultrasound examinations, or MRI magnetic resonance imaging scans, now we are able to
diagnose endometriosis with quite high accuracy if there are endometritic cysts in the ovaries or or
there are no use of endometriosis, deep endometriosis that I mentioned earlier. So imaging is is quite
accurate in detecting these and as long as we make use of these technologies, we do not necessarily
need to do that diagnostic laparoscopies to detect endometriosis confirmed diagnosis. So because of
that, in the last estra guidelines that you referred to, we stated that laparoscopy is no longer the gold
standard. Laparoscopy is not essential to make diagnosis of endometriosis, because if you see typical
endometritic lesions on ultrasound scan or MRI, then you have your diagnosis and it's very accurate.
So that's really theory. This should shorten the delay in diagnosis in coming decades.
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Joyce 17:08
That's really great news, because having a laparoscopy is It's difficult. It's a difficult procedure, isn't it?
Ertan Saridogan 17:13
It's obvious. It's an intrusive procedure. It requires anesthetic, it requires a surgical intervention. Yes,
we're
Joyce 17:23
going to go into the treatments in a minute. But first, do we know anything about why this happens? Is it
is it genetic? Is it inherited? Is how does it happen?
Ertan Saridogan 17:35
Okay, so we don't actually have a definitive reason why and some women develop endometriosis. So
there are different theories as to how it develops. So the most commonly mentioned theory is that the
blood of menstruation period blood goes through the fallopian tubes into the abdominal cavity during
periods, as well as coming out through the vagina and the period blood contains cells from the lining of
the womb. So it is thought that these cells sometimes attach themselves to the surface of the organs in
the pelvis and sometimes in other areas in the abdomen, and that starts the process of endometriosis.
So finding period blood in the abdominal cavity during periods is very common. Almost 90% of women
will have some blood in the peritoneal cavity. So but only, as I mentioned earlier, about 10% of women
are estimated to have endometriosis. So it's not clear why endometritic cells attach in some women and
continue to survive there in the abdominal cavity, in these ectopic external locations, whereas in the
others, it's clear that endometriosis does not develop. So the theories are that there may be a genetic
tendency, genetic background. Because if there is a family history, if your mother had a head
endometriosis, or your sisters have endometriosis, your risk is like five to seven times higher. So it
suggests that there is a genetic background. There are probably some immune mechanisms,
immunologic but these immune mechanism may not be working properly, so that the immune system
may be failing to clear those Endometriotic cells in the period blood, during menstruation, and some of
these women may be more likely to develop endometriosis. So there are at risk women with for
endometriosis, for example, apart from family history, if a. Young girl starts periods relatively early.
Earlier than average, her risk of endometriosis is higher. So early first period, we call it menarche. Early
menarche is a risk factor, and if a woman has frequent periods and occasionally prolonged periods.
Again, they are thought to have a higher risk of miscarriage. And you can imagine that if it's related to
the period blood going into the abdomen. So then it makes sense that you whenever there is more
blood present in the abdomen, so that the risk would be expected to be higher. So so the
epidemiological studies actually do suggest that perhaps women who have frequent periods and
sometimes heavy pain, heavy and prolonged periods, may be at a high risk of developing
endometriosis. There is also some belief that women using tampons may be more likely to develop
endometriosis, and again, this may be related to period blood going back more into the peritoneal
cavity, although this is this research is not very clear or very convincing. So we need to be careful about
that, and perhaps suggest or avoid suggesting that we people should not use tampons as such,
because that research is not very convincing.
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Joyce 21:42
So there's nothing a woman could do to reduce the risk or prevent the risk of endometriosis.
Ertan Saridogan 21:49
Okay, well, so there may be approaches, but obviously these are general issues. So for example, if we
look at a century ago, we women used to have more children breastfeed, and during that time, they
didn't have periods. Hence, in the absence of that, development of endometrisis, perhaps was less
likely, whereas now women have fewer pregnancies, they usually delay pregnancy, and because of
that, they end up having many more periods in their lifetime, and then this potentially increases risk of
development of endometriosis. So in other words, pregnancy has some protective effect, and we know
this from epidemiological studies, being pregnant potentially breastfeeding, again for the same reason,
has some protective effect. Apart from that, they there is some evidence, although again, not robust,
evidence, that use of hormonal contraceptives may also reduce development of endometriosis. The
reasons for this are not very clear. It's possible that women who are on contraceptives are less likely to
have pain symptoms, so they may be less likely to be diagnosed with endometriosis. But it is also
possible there is a real benefit, because hormonal contraceptives either prevent periods, stop periods,
or they make them lighter. So again, going back to what we said, you know, frequent, prolonged,
heavier bleeding is a risk factor for endometriosis. Hence, it makes sense that using hormonal
contraceptives may really have some beneficial impact. And then the other thing is obviously now
awareness, if we identify people who are at risk of endometriosis, ie those who suffer from painful
periods from young ages, teenage years, then then treating them, even without diagnosis, on the
assumption that they may have endometriosis, can potentially help prevent although we don't actually
have scientific evidence that this is the case, but there is a possibility, a real possibility, this might be
the case. So there are things that they can do. There are also various lifestyle issues that perhaps
people can address. The the. Dietary or lifestyle issues and endometriosis connection is a bit
controversial. The evidence we have is very weak and not necessarily very convincing, but it is possible
that avoiding red meat or alcohol or omega six fatty acids. These are considered to contain more
inflammatory substances. They may potentially reduce the likelihood of endometriosis, but as I
mentioned, that the research related to these is very sub optimal quality. Hence, you know, we need to
be slightly cautious about strongly recommending them to everyone. I
Joyce 25:55
want to dig a little bit deeper into a couple of things you said. And the first is about the contraceptive.
Well, contraceptive, hormonal contraceptives, and having no period. So there are certainly a number of
women I've spoken to recently who feel that it's important to have a period and that it's sort of cleansing
the woman and sort of resetting the woman. But as you said, historically, women were pregnant more
so they had less periods. So do women need to have a period?
Ertan Saridogan 26:26
Well, I think the period issues is probably very much related to a number of factors, and culture is
probably one of them. In certain cultures, it is common belief that, yes, period is essential in a woman's
life. It results in cleansing of the body, but there is no scientific background basis for this. So, strictly
speaking, there is no need to have periods. And in fact, historically, as I mentioned earlier, women from
a young age onwards, were pregnant, they never they didn't have periods. They had very few periods
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during their reproductive years, they were either pregnant or were breastfeeding. So strictly speaking,
there is no need for periods as such and and also, there is no real need to, you know, have period to
cleanse your body as such, because there is no such effect. If anything, periods can be associated with
certain problems. One is pain, and then the other thing is that sometimes, if they are heavy, they can
cause anemia, iron deficiency and anemia, and can make a woman's life misery
Joyce 27:50
like they certainly can. Another thing you mentioned was women being pregnant. I'd heard, I'd heard
many times that endometriosis can reduce after you've had a pregnancy, but I've, I've got many friends
at the moment who have had a pregnancy, and the endometriosis actually got worse. So what's what's
happening there?
Ertan Saridogan 28:13
Yes, so the impact of pregnancy on endometriosis is variable. It is true that in the absence of periods,
some women, perhaps the majority would feel better, because when there is no period, there is no
period associated pain, and then the same impact may be seen during breastfeeding as well. And in
fact, these two conditions are the basis of traditional hormonal treatments that we use for endometrists.
Perhaps we'll come to that later on. So the hormonal status in pregnancy and during breastfeeding are
potentially beneficial for suppression of endometriosis. But as I said, this is this impact is variable.
Some women may experience the opposite. Some women with endometriosis may see worsening of
their pains during pregnancy. So we do not suggest that a woman should get pregnant to treat their
endometriosis. Pregnancy should be obviously decided for other reasons, when when you want to have
a child rather than treat your endometriosis. So pregnancy is not a treatment for endometriosis as such.
We should not see it that way at least.
Joyce 29:38
Let's dive a little bit more into what you said earlier about fertility. So you said endometriosis affects
facility fertility. So do we know what? What's happening? How does that happen?
Ertan Saridogan 29:51
So the we actually yes, the association with endometriosis and infertility is some metcom. Traversal.
But there is enough data, scientific data, to indicate that women with endometries are more likely to
experience difficulties in getting pregnant. So in 2016 actually, there was a very nice publication from
the USA. They looked at Nurses Health register. So identified women who were diagnosed with
endometriosis first, and followed them through their lives when they started trying for a pregnancy. So
they identified that if a woman had diagnosed of endometriosis before starting to try for a pregnancy,
their likelihood of experiencing difficulties in getting pregnant was twice as high compared to those who
did not have a diagnosis of endometriosis. So it doubles the risk of experiencing difficulties in getting
pregnant. So why might this happen in advanced endometriosis, it's obvious because endometriosis
causes irritation in the pelvic area. So when there is period, there is usually bleeding from those areas
of endometriosis in the pelvic area that causes irritation in the pelvis and the organs start sticking to
each other, so that the fallopian tubes, ovaries, utters, may stick to each other. Sometimes, bowel
becomes involved. So the pelvic anatomy becomes distorted. If there are cysts in the ovaries, again,
the ovaries become enlarged, they swell up, they stick to the surrounding structures so that the
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fallopian tubes may not be able to pick up the oocytes, eggs released from the ovaries and carry them
effectively to the site of fertilization. So there is a mechanical problem. Another issue might be that,
because of pain, women may be more more likely to avoid sexual intercourse regularly, or have less
frequent sexual intercourse, and this may also contribute to the difficulties in getting pregnant. So this is
when a woman has more advanced endometriosis, when there is mechanical distortion to the pelvic
anatomy. But there are situations when endometriosis is relatively minor. Pelvic anatomy is normal.
There are spots around the pelvis, but the tubes look normal. They are open. Ovaries look fine, and it's
not very clear why these women experience difficulties in getting pregnant. The theories are that
endometrisis creates an inflammatory environment within the pelvis, and this inflammatory environment
may be toxic or harmful to the process of reproduction. The the tubes may be less likely to pick up the
oocyte from the ovaries and carry them to the site of fertilization for various reasons, or the
inflammatory reaction results in certain cells in the body eating up sperm more so than than women
without endometriosis, so that sperm may be less likely to be functional. So these are possible
explanations when the pelvic anatomy is normal, so that the overall environment that endometriosis
generates is still harmful to chances of getting pregnant. And we know this as a fact, women who have
relatively minor early endometriosis are still more likely to experience fertility difficulties, even if their
pelvic anatomy is normal.
Joyce 33:46
I've heard some people talk about egg freezing as a way of protecting a woman's fertility if she's got
endometriosis. Is that useful? Or is that not useful?
Ertan Saridogan 34:00
Well, so there may be a place, but obviously its place is still not very well established. So if let's say that
fertility difficulties, or infertility is like 15% in general population, and then endometrial just doubles it so
30% with endometriosis. So what does that mean? It means that about 70% should, in theory, get
pregnant without actually any difficulties, without any help. So majority of women with endometriosis will
get pregnant naturally, without any help from us. Therefore, there is no justification of blanket policy that
if you have endometrisis, you should freeze your eggs. So that's one aspect. The other aspect is that
your egg freezing is helpful, particularly useful or effective. If you freeze your eggs at a young age, but
at the same time, young women are more likely to get pregnant naturally when as long as they start
trying for a pregnancy at a younger age, or even if they don't get pregnant naturally with appropriate
treatment, whether this is surgery or fertility treatments such as IVF, they have a very good chance of
getting pregnant anyway. So then one questions whether these women should be advised or
encouraged to freeze eggs, especially at a young age, because many of these frozen eggs will not be
needed, will not be used for fertility purposes, because these women would get pregnant. On the other
hand, obviously, for older women, chances of experiencing fertility difficulties are higher because of
age, as well as combination with endometriosis, but then the success of egg freezing at that age goes
down. It's not that effective. So in that sense, at the moment, there is some uncertainty as to who
should consider freezing eggs and at what stage. So perhaps we can say that if a woman has a
diagnosis of endometriosis and she has no in her early 30s, she has no plans to become pregnant in
the following four or five years, perhaps it may be a good idea to consider freezing eggs while they are
still young, but other than that, it is difficult to actually identify a group that we should advise freezing
eggs or preserve fertility At this stage. So we need more research. We need prospectively collected
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data so that we can actually identify who would benefit most, and also in whom it would be most
effective. Because if you freeze eggs at the age of 38 the chances of success might be relatively low
compared to freezing eggs at the age of 28 so we need to have some across the board data to to be
able to advise women in the long term. So the there are obviously attempts of collecting these data, but
it will take some time, some years, actually analyze this, build up the data and analyze this so that we
can actually advise women based on scientific evidence.
Joyce 37:51
Yeah, and it's not easy to freeze eggs and very, very expensive. So we've talked already now about all
the complications of endometriosis, but now we're going to get round to the treatments. I listened to
your great talk about endometriosis in Turkey recently, and you started by saying, In 1919, Thomas
Cullen was one of the first to describe endometriosis, and he said, in less than 10 years, I feel sure that
the surgeon will recognize and operate on these so we are more than 100 years later. Why is treatment
been so difficult utter
Ertan Saridogan 38:30
obviously, it's a complex condition I mentioned earlier that there is no direct correlation between the
severity of endometriosis and severity of symptoms. And in conditions where endometriosis is quite
severe, the treatment can be rather extensive, especially surgical treatment. Thomas Cullen actually
was describing the most difficult form of endometriosis, difficult to treat, form of endometriosis at that
time, endomet affecting the bowel, and was referring that surgeons should be able to identify and treat
them. Within the following 10 years, obviously, we are still debating how to diagnose and then best treat
this condition, endometries affecting the bowel. So the difficulties are, it is extensive surgery. It requires,
sometimes removal of part of the bowel, and it may, in the long term, change bowel functions. And
some women actually report that their bowel symptoms are worse following surgery, although we do
see improvement in the majority. It's not always the case for everyone, and then sometimes after
effects of this type of surgery can be quite troublesome, so it needs to be a. Carefully selected. And
then the other thing is that it's a chronic condition. So when we are talking about treating endometriosis,
we are not talking about curing endometriosis. So vast majority of women do still experience some
degree of symptoms, so the pain symptoms may improve, but do not necessarily disappear altogether,
even if you claim that you've excised, removed endometriosis completely, and then thirdly, there is a
high risk of recurrence. So the suggested publication publications suggest that the risk of recurrence is
about 20% after two years, 50% after five years. So in other words, we are talking about half of women
experiencing some degree of recurrence of their symptoms, or endometriosis after five within five years
following surgical treatment. So these are the complexities. So the other complexity, perhaps even the
most challenging complexity, comes from the fact that endometries and pain relationship is complex,
complicated. So the way that the body perceives the pain, especially if body is experiencing the pain for
prolonged periods, actually is difficult to understand and but when a person experiences pain for a long
time, the area where the pain originates from becomes sensitized, but the similar sensitization occurs in
the central nervous system as well. So the part of the brain starts changing in a way that it learns that
there is some irritation inflammation in a certain part of the body, and in the case of endometriosis, it's
usually the pelvic area. So even if you eliminate endometriosis by excising it, your brain continues to
think that there is still a problem there. So this is called centralized pain, and because of that,
treatments do not always eliminate the pain effectively. Therefore, when we are trying to help women
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with endometriosis, quite often, we need to get input from pain management teams to try to address
this concept of sensitization and then centralized pain. So this is another factor that complicates the
successful treatment of endometriosis.
Joyce 42:53
Complicated, really complicated. You talk a lot about surgery, and I know that there's a long,
complicated history around drug treatment of endometriosis, some that were effective, but had to re
side effects and all sorts of things. So where are we today, with drugs that will help with this?
Ertan Saridogan 43:12
Yes, so the you remember that I was referring to pregnancy and breastfeeding. So the traditional
treatments may be either some use of some hormones or use of painkillers. So for some women who
have relatively mild symptoms and who do not want to use hormones, we can just simply use
painkillers. And that may be sufficient, they may be happy with that. But for those who who are not able
to treat their symptoms sufficiently with painkillers only, then hormonal therapies are quite often
required. So the during pregnancy, they both the estrogen and progesterone hormone increased
dominantly, the progesterone hormone. And in the past, in my early years in my career, we used to call
it pseudo pregnancy treatment. So in other words, we give hormones, particularly the progesterone
hormone, sometimes in combination with estrogen, to create a similar situation to suppress
endometriosis. So the progesterone hormone is is a key component of treating endometriosis, either on
its own or with estrogen. The other option is to suppress estrogen. So breastfeeding does that because
the ovaries go to sleep during breastfeeding. And we also know that endometriosis regresses after
menopause, because the ovaries no longer secret estrogen. Endometriosis improves and regresses, so
we call it pseudo menopause. Treatment so that there are therapies, there are medications which
switch off the ovaries, create an artificial or medical menopause and reduces estrogen levels in the
body, and that tends to improve symptoms of endometriosis, as well as regressing endometriosis with
medical treatments. The principle is that it doesn't eliminate endometriosis, or they don't eliminate
endometriosis, but they tend to treat symptoms, and in general, they are successful in a significant
proportion, I would say, like in 60, 70% of women, depending on what therapy we are using. But the
issue is that quite often there are side effects, and this usually results in somewhat limited compliance.
Some women do not feel that the benefits outweigh the potential side effects, or the side effects they
are experiencing and and end up discontinuing treatment. And sometimes, you know, they switch from
one treatment to other until they find suitable treatment for themselves. But it's not that rare that they
actually decide against hormonal therapies altogether. And in that situation we need to, we end up
sitting down and thinking about what else we can do, how we can manage endometrisis, for example,
there is data about compliance with medical therapies. We actually recently completed a randomized
trial of medical therapies following surgery in the UK. We followed women for three years after
treatment. So we were giving them different forms of progesterone hormone, and we realized that after
three years, about only about 30% of them were still continuing with medical treatment. The rest had
discontinued treatment. So it is possible some of these decided to start trying for a pregnancy and may
have discontinued, but majority of them would have discontinued simply because they feel that they
either do not have enough benefit or or the side effects are more significant than The potential benefit
that they are experiencing. So the compliance is relatively low, and from general use of hormonal
contraceptives, we know that compliance after about one year is about 50% so half of women who start
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a hormonal contraceptive method they discontinued after one year. So this is a well known fact that we
know that hormones can cause side effects, and this can result in discontinuation of the method that
they are using. And this applies to hormonal therapies for endometriosis as well. Yeah,
Joyce 48:19
that's what I was going to ask, because surely, if they took the injection or implant contraceptive or the
Mirena coil, that would that not really help with, they wouldn't have period. So wouldn't that really help
their symptoms?
Ertan Saridogan 48:35
They do so that they obviously, we know that when there is compliance. If the woman continues with
treatment, pain levels improve substantially, especially if periods are suppressed, if you can avoid
periods with the method that they are using. And then this is like 60% with the Depo Provera injections.
You know, they stop having periods, about 60% of them, and they will stop ovulating, therefore their
endometriosis is likely to improve, or the symptoms of endometrial is likely to improve. But the problem
is that not everyone actually continues with that type of treatment because of the perceived side effect
that they have. So obviously, you know, as individuals, we look at the reasons why we are using it, and
then also the side effects we are getting in return. And then these side effects may be changes in
mental health, the changes in mood, feeling bloated, or weight gain. So these all affect the compliance
continuation of medical therapies, and inevitably, they make some kind of comparison that am I better
off? Are the. Gearing to the treatment because I feel a lot better in terms of pain, or I'm better off
actually stopping it because I feel worse than I was before starting treatment.
Joyce 50:12
Yeah, it's very individual. I realized when I was on the pill for about 20 years, and I realized when I
came off that I'd been probably a bit crazy. When I was actually on the pill, I felt a lot less crazy. My
partner might not have agreed for that, but I certainly felt less crazy. So yeah, definitely there are side
effects now. Now women that are trying to manage their pain. I've I've heard about women who are
using heat pads, and I was doing some focus groups with 15 year old girls, and one of the girls told the
girls, Tommy, she had burns on her stomach, and so does one of my friends, and you and I were
talking about this in Turkey. So tell us more about these heat pads and why they'd be causing burns.
Ertan Saridogan 50:56
Yes, so it's not uncommon that women resort to using hot water bottles or heat pads when they have
pains, particularly during periods. And sometimes pain is so bad that they actually use very hot hot
water bottles or heat pads pads. And there is a typical appearance because there is some mild degree
of burn in the lower part of the abdomen or lower back, wherever they are feeling the pain most
severely. And then this is repeated every month the woman has periods and over the years. So there is
a typical appearance with mild degree of color changes and mild degree of scarring of the repeated,
repetitive burns. So that I know that person actually is suffering a lot with pain in that area, in those
areas, and also I know that those people have been using those heat options, either heat pads or hot
water bottles, to the degree that it starts burning the skin, and that's an indication of severity of the pain
that they are suffering. Yeah, so it shows a very typical appearance, and you just need to just glance,
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and then you'll know that that there is a likelihood of severe pelvic pain, whether it's due to endometries
or other reasons.
Joyce 52:31
Yeah. And one of my friends uses a tense machine as well. Are they effective? Yes,
Ertan Saridogan 52:39
yes. Tense machines can be effective. So this is although the scientific evidence of benefit for
specifically for endometriosis, is relatively weak. Pain management teams recommend using 10s
machines for treatment of pain, whether it's due to endometrios or other reasons, and it is safer, safer
than actually burning yourself with hot water bottles and heat pads so they can they can be quite
helpful.
Joyce 53:14
And there's always a market for supplements. And as soon as I started talking to you about this
podcast on my social media feed, I started getting all these adverts for endometriosis, endometriosis
supplements and powders. So what about those? Is this a supplement that you can take that's going to
cure your endometriosis?
Ertan Saridogan 53:37
Okay, so obviously, when we cannot cure endometriosis, even with very extensive surgery, I think it is
probably far too optimistic to claim that these supplements would cure endometriosis. So the evidence
for of benefit for supplements comes from theoretical backgrounds. There is no real clinical evidence,
scientific evidence that they actually make any difference. So for example, I think I mentioned about red
meat, or, you know, fatty acids and various vitamins, vitamin D, E, C, these are antioxidants. You know,
some of them have anti inflammatory roles, and in that sense, considering endometriosis is an
inflammatory process, or at least there is some inflammation process during the course of
endometriosis, then you can expect benefit. So this is where the claims come from, that endometriosis
can be treated by using these supplements, because you know that this substance is known to have
antioxidant benefit, but when you look at real benefit. Fit for clinically confirmed endometriosis that is
rather poor and in the Asia guidelines in 2022 so not long ago, we looked at all published evidence, and
we didn't find any convincing evidence that these make any difference to treatment of endometriosis,
but some women find them useful, and in that sense, we don't necessarily discourage them. If they find
that they are helpful, they can use them, because many of them are unlikely to cause harm, although
there may be some items, substances promoted over the internet that can have real harm, so it's
difficult to control that. But going back to what I said earlier, the evidence is is lacking, so that their
support. So I mentioned to my patients that some women find avoiding certain types of food in at least
part of their symptoms, some of their symptoms, particularly bowel related symptoms, because some
people find avoiding their products helpful, and it's possible that they have some lactose sensitivity.
Some people benefit from avoiding gluten containing food, and then they may have some gluten
sensitivity. And if these are helpful, then yes, by all means, it's fine to continue with that kind of dietary
approach, but if actually they don't make any difference, they shouldn't feel bad that they are, you
know, eating their products or wheat containing products, because it's unlikely that they'll have a
substantial impact on their endometriosis, or progress of endometriosis.
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Joyce 57:06
Thank you for making that clear. And what about endometriosis and fasting? Okay,
Ertan Saridogan 57:11
again, I think it again, it is the same concept that it's the theory that fasting may reduce inflammation,
and as a result, you expect endometriosis symptoms to improve, or endometrials to improve. So it's the
concept, but not necessarily the evidence. We don't have any evidence fasting makes any difference.
So the one thing that maybe it's interesting to mention that we talked about various risk factors like, you
know, starting periods at an early age. The other risk factor, interesting risk factor that we have is
enemies is more common in Underweight women is, you know, it's difficult to know exactly why it is, but
it is more common if a woman is underweight, they you association with being overweight is not very
clear, although there may be a real impact, there are other risk factors. For example, if you're born with
low birth weight, injury, trying, growth retardation, the risk of endometris is higher. Having formula
feeding again is probably a factor that increases risk of endometriosis in future life. So maybe you know
in the in the next 1020, years that we will be perhaps targeting these kind of risk factors more often to
try to prevent enemy uses in their long term, rather than firefighting after it has developed. So perhaps
the preventive medicine approach is going to be an important component of fighting endometriosis in
the long term.
Joyce 59:06
Yeah, and let's go now a little bit into menopause. So when a woman goes through menopause, she's
going to stop her periods. So does endometriosis stop? And what about if women are taking HR so
Ertan Saridogan 59:18
in general, for the majority of human endometriosis regresses after menopause. It's an estrogen
dependent condition, so when after menopause always stop functioning estrogen, it is common to see
resolution of the symptoms or improvement of the symptoms. Having said that, it doesn't happen in
everyone, some women continue to experience pain symptoms even after menopause. So there is no
guarantee, but majority would improve. So you know that there are occasions that you rare occasion
you look forward to becoming menopausal and having a diagnosis of endometrial. Might be one of
them. So in terms of hijack, so, women with endometriosis in terms of menopause have a number of
important points. So one is that they are more likely to become menopausal at an early age. This is this
may be because they undergo repeated operations, particularly on their ovaries. Sometimes they
undergo hysterectomy together with their removal of ovaries because of pain of endometriosis. And in
these women, the risk of becoming menopausal at an early age is obviously significant. They are more
likely to suffer osteoporosis, brittle bone disease or cardiovascular disease. So it is important that we
provide these women with hormone replacement therapy at least until the age of natural menopause.
The other thing that we know that endometriosis, women with endometriosis are more likely to
experience the side effects of consequences of menopause, more so compared to women without
endometriosis, and again, this may be because of the number of operations, but also because of the
medical treatments that they use. For example, using progesterone hormone for prolonged periods or
the medical menopause therapies for prolonged years may make them more vulnerable to
consequences of hypo estrogenism, low estrogen levels. Therefore, even if they go through
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menopause at the natural age, there may be a need to use hormone replacement therapy after the age
of natural menopause. It is optional, but it can be used. So endometries, in itself, is not a
contraindication to using hormone replacement therapy, okay, what Then? Then? What happens? You
know, we kept saying endometris is estrogen dependent. So what happens when we give estrogen
back to them after menopause? Well, it appears that it is relatively safe. There is a risk of recurrent
symptoms or recurrent endometriosis, but that risk seems to be somewhere between three to 5% so
majority of women do not seem to experience significant benefit, sorry, significant recurrence of the
symptoms. This may be something to do with the fact that with hormone replacement therapy, we are
not giving the same level of hormones that the ovaries are producing, so we are giving enough to
suppress menopausal symptoms, protect bones and cardiovascular system, but not high enough to
support endometriosis or maintain endometriosis or cause its progression. So the current thinking is
that we should if a woman needs hormone replacement therapy after menopause, then it is acceptable
to use hormone replacement therapy. One thing is important, though, if a woman has a diagnosis of
endometriosis, even if she had a hysterectomy, it's important for them to use estrogen and
progesterone combination, because normally we wouldn't use progesterone if a woman had a
hysterectomy, whereas, if there is a diagnosis of endometriosis, the combination therapy, both with
estrogen and progesterone, should be used, because I didn't know there is a higher risk of high risk of
recurrence if you use estrogen on the hijat. And then there is also a theoretical possibility that
developing malignancy, cancer might be higher if you use estrogen only hormone replacement therapy
on the background of endometriosis.
Joyce 1:04:11
Wow. I didn't know that. It's been a bit depressing. Sorry. It's so complicated, and it's, you know, it's not
a it's not a happy story. But have we got anything in the future that's what's on the horizon? Have we
got anything that you think is going to really revolutionize endometriosis?
Ertan Saridogan 1:04:31
Perfect. Okay, well, in the horizon, obviously, as I mentioned that, as we now understand the risk
factors that we will probably start talking about taking public health interventions, you know, preventive
measures that that will target potential risk factors to reduce development of endometriosis. So that's
number one. And then that will probably. May grow substantially in coming decades. So the other issue
is that surgical therapies, they are being fine tuned so that we're hopefully developing better methods in
treating endometriosis surgically with minimizing or lowering the risk of complications, and also long
term side effects. And then, thirdly, that in the pipeline, there are a number of approaches which
potentially treat endometriosis without using hormones, and this may be targeting the process of
inflammation. You know, I kept saying that endometriosis has some inflammation process going, and
by targeting these inflammatory targets or items in the process of development of endometriosis, we
might actually be developing therapies without use of hormones, and what does what will that mean?
Currently, all hormonal therapies are not suitable for women who want to get pregnant, or they do not
necessarily improve chance of getting pregnant, whereas with non hormonal medications. This may be,
this may not be the case, that by using these non hormonal therapies, we might be able to improve
their fertility, or they may be able to continue trying for a pregnancy naturally, without the fear of, you
know, having to use these estrogen progesterone hormones, which are contraceptive stem cells. So
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these are the areas of potential development, preventive medicine, better surgery, fine tune surgery
and and new medical therapies which do not necessarily use hormonal medications.
Joyce 1:07:02
Well, Anya, I'd like to just thank you and everyone around the world who is working on endometriosis,
and you know, it's been it is a really complicated disease. And my last question specifically about
endometriosis, my podcast is called, Why didn't anyone tell me this is there things that women have
dealt with with endometriosis, and they said, I didn't know this. Why didn't I know this before? Have
they asked you that?
Ertan Saridogan 1:07:32
Well, they do, although this is becoming less common, I think now this is becoming part of teaching in
particularly in secondary schools. I think education incorporation of reproductive health in general, not
necessarily just endometriosis, but endometriosis, an important part of that is being teached in, is being
taught in at school, and so therefore awareness is becoming kind of more widespread that People are
usually better informed compared to older generations. But there are also things that we didn't know 20
years ago or 30 years ago either. So we are all learning, you know, the whole process is evolving, and
we are our understanding is also improving as well some of the things that we are talking now?
Perhaps you were not talking about five years ago or 10 years ago.
Joyce 1:08:48
Yeah. I It is. It is being taught in schools more. But the survey we did a few years ago of you English
schools, we asked, we had a list of reproductive health topics, and I I was very sad. It broke my heart
that for PCOS, which is our next podcast, and endometriosis, only 2% of kids that filled in our survey,
over 1000 children aged 16 to 18, said they'd learned about PCOS and endometriosis at school. So I
think it's slowly coming, and it is in the curriculum now, so we do have to do it, but we've got a bit of a
way to go. And I'm and I'm doing some work on helping teachers to make sure young people know
about this, because once they know that they shouldn't be having this pain, you know they're not taught
that in some schools, and they know that this pain is not a normal thing to experience, and I think they
might go to their doctor more.
Ertan Saridogan 1:09:48
Yeah. So I suppose one potential problem that we have at the moment is that, you know, we the
teachers or people who are going to actually teach. This, these subjects, they need to be armed
themselves to be able to teach it, and when they do not have the sufficient adequate background
knowledge to teach that, then the outcome may not be satisfactory. I know that Australians actually ran
a program some 1015, years ago, so that this was a targeted program, so schools had certain projects
teaching reproductive health, including endometriosis and and this obviously improved awareness
substantially. So perhaps it needs to be run as part of a program project. Perhaps people with the
relevant knowledge, sufficient knowledge, actually should actually teach these subjects, rather than
expecting all teachers to know this subject and teach them at schools?
Joyce 1:11:07
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Yeah, I our bit of good news is that we, we feel teachers can teach the basics for sure. So our
international reproductive health collaboration is they've we have produced an information leaflet on
PCOS, and one on endometriosis, and we're part of estra, so it's all coming from the same thing. And
we have also produced a PowerPoint research tool for teachers, and there are slides on endometriosis
and PCOS, just to get those conversations going. So we are arming the teachers. We've been working
on that. So we really hope that if we did our survey again, 100% of young people would say they've
learned about endometriosis and PCOS, which I think going back to the very beginning, this will really
help speed up women being diagnosed with this.
Ertan Saridogan 1:12:02
I hope so
Joyce 1:12:06
too. We need to finish on something happy, so I ask all of my guests happy questions. At the end U
turn, what makes you happy and where is your happy place? Oh,
Ertan Saridogan 1:12:19
well. What makes me happy actually, is to get an email or letter from my patient that I treated to tell me
that you know, if they were experiencing difficulties in getting pregnant, that they are now pregnant.
Sometimes they actually write to me after three pregnancies, after three children, saying that, Oh, well,
you might not remember me, but you actually operated on me 10 years ago, and I now have three
children. I need contraception type news, or they say that you know that their pain improved
substantially so that they can get on their life. So this kind of positive news keep keeps me going, keeps
me very happy. And where I am happiest is his home, really with the family. I love being at home in the
family environment.
Joyce 1:13:27
Fantastic, fantastic. And the very final question, again, I ask everybody, because now we're all a bit
wiser, and Hindsight is a great thing. But u what advice would you give your younger self?
Ertan Saridogan 1:13:42
I Yeah, well, I think I would do it all over again the process that I followed, I wouldn't want to change
anything substantially. Obviously, we all make mistakes, and I'm sure we will continue to make
mistakes. The important thing is to learn from our mistakes and and try to reduce that likelihood so that
we can better ourselves as well as continuing to help other people. So in that sense, you know, I don't
have major regrets in life. I would do it all over again the way that I did.
Joyce 1:14:26
That's a fantastic and very, very positive way to end what's what's been. I think that's been the toughest
podcast to record and listen to, because it's, it's really problematic. I think endometriosis is such a
difficult disorder for anyone to deal with so and you are really one of the world experts. So urtan, thank
you so much for giving up your time and recording this podcast with me.
Ertan Saridogan 1:14:56
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Well, pleasure. Thanks for asking me to do this podcast with you. Joy.
Joyce 1:15:01
Thank you. Bye, bye, bye, bye.