This is a
blogpost I’ve been meaning to do for a while now. In this blog I mostly write
about specific research with a pretty narrow focus, but what about the general
information about endometriosis that people might want to know? There are of
course many good resources out there in the vast expanse that is the internet,
but at the same time there is misinformation and bad advice out there as well. With
that in mind I’m going to try and put together a list of, what I think, is useful
information for anyone starting their journey into endo, or those who simply
want to know more about it. As the title says it is very much the basics so I’ve
provided some links throughout this post to longer articles that cover certain
topics in more detail. If I’ve missed out anything glaringly obvious, or there
is something you’d like to know and want me to add to this list, add a comment
to the bottom of this post, or tweet me @endoupdateblog
To begin
with then, let’s start with the most obvious and basic question
What is Endometriosis?
Endometriosis,
those six unwieldy syllables, means different things to different people. To
the suffer it is a malign, invisible tormentor. To the doctors/surgeons it is a
minefield of trial and error. To the
researcher it is an enigmatic mystery to be solved. But I doubt you came here
to read about the philosophical descriptions of endometriosis (and if you did,
sorry, maybe I’ll cover that in a different blog post). I’m guessing you want
to know what endometriosis physically is. Before I do that however, some
prerequisite knowledge is needed about the female reproductive system.
If you’re
reading this you either possess, or at the very least know about, the uterus
(womb).
 |
| Image Courtesy of By OpenStax College [CC BY 3.0 (http://creativecommons.org/licenses/by/3.0)], via Wikimedia Commons |
Inside the
uterus is a thick muscular layer called the myometrium,
this is responsible for contractions during labour and those wonderful
menstrual cramps I know women are so fond of [sarcasm]. The inner lining layer
of the uterus is called endometrium,
which is the ‘functional’ part. The endometrium is the part of the uterus that
grows and sheds with each menstrual cycle and is responsible for the bleeding
that I know women are so fond of [more sarcasm]. I’ve written before
about how the endometrium and the menstrual cycle work so I won’t cover that
here. The point to take away is that the endometrium is inside the uterus and
during the menstrual cycle it grows and then breaks down and sheds off during
menstruation.
Endometriosis
is defined as patches of endometrium-like tissue (called endometriotic lesions)
outside the uterus. Now I use the term ‘endometrium-like’
purposefully here. You see the patches of tissue that comprise endometriosis resemble
the endometrium when looked at under a microscope. However several studies,
which have analysed endometriosis and the endometrium at the molecular level,
have shown there are numerous differences between the two tissue types. In any
case endometriosis is often referred to as ectopic
endometrium (literally meaning ‘out of place endometrium), or endometriotic
tissue, whereas the normal endometrium is often referred to as the eutopic endometrium. Endometriosis is
still responsive to hormones in a similar manner to the normal endometrium, so
the theory goes that, throughout the menstrual cycle, endometriosis grows and
bleeds, but unlike the normal endometrium, the blood has nowhere to go because
its inside the pelvic cavity. Whether or not endometriosis does actually
‘bleed’ is somewhat contentious, but the presence of endometriotic lesions does
certainly lead to inflammation, pain, subfertility and a myriad of other
horrible symptoms depending on the extent and location of endometriosis.
Almost as
important as what endometriosis is, is what endometriosis is not. Endometriosis
is not an infection of any kind, it’s not communicable, it’s not a cancer and
is not fatal, however just because something is not fatal, doesn’t mean it can’t
take your life away.
Also you
cannot define endometriosis purely by its symptoms, endometriosis is not just
painful periods. Sure, some women with endometriosis have painful periods, some
don’t, some women have pain so severe it is literally disabling, but
endometriosis is a complex condition that requires holistic and often
personalised approach. For example, one woman with endo may have severe pelvic pain,
depression, anxiety and bowel pain, whereas another woman may have no pain or
psychological symptoms, but is infertile, these two cases would require very
specific and different approaches.
Which brings me to my next point: the types
of endometriosis.
Endometriosis
is subject to a grading system depending on the extent and type of the disease,
which you can read about in more detail here. Endometriosis is
usually categorised into four stages (minimal, mild, moderate and severe),
which depend on the type, extent and location of the disease. Although the stages sound fairly descriptive
of the disease, that is not necessarily the case. The stage of disease doesn’t always
correlate with the symptoms experienced, so a woman with severe disease can
have no symptoms and a women with minimal disease can have debilitating
symptoms and vice versa.
In the
broadest terms there are three types of endometriosis. Superficial
endometriosis are lesions that can be found anywhere around the pelvic area. However,
they are most frequently found on the surface of organs/ligaments/structures of
the pelvis and can be as small as to be almost invisible to the naked eye, or
about as large as a pea and any size in between. This type of endo comes in a
variety of different colours: red lesions are considered to be ‘active’ in that
they produce inflammatory factors and can have a dense network of blood vessels
supplying them, blue/black lesions are similar to red but are seen as an older
form of the disease, white lesions are thought to represent even older and
inactive endometriosis, but often have a lot of scar tissue associated with
them which can pull or restrict the surrounding tissue leading to pain. There
is some evidence
to suggest that superficial endometriosis undergoes a transition from red >
blue > white, but how and at what speed this transition occurs isn’t known.
The next
type is endometriotic cysts. These are most commonly found on the ovaries and
are cysts filled with old blood that takes on a brown colour, giving them the
undeservedly pleasant name ‘chocolate cysts’. These cysts can grow to be quite
large, ranging from a few centimetres on average, to massive cysts in very rare
cases. Because they affect the ovaries, endometriotic cysts tend to be
associated with decreases in fertility, fortunately there are treatment options
available to restore fertility to women with endometriosis associated subfertility,
but I’ll be discussing that later on.
The third
type is deeply infiltrating endometriosis (DIE). As the name suggests these are
lesions that are actually dug into the tissue of the pelvis. Because DIE can
penetrate into tissues it can be quite challenging for surgeons to remove
completely and has been known to cause some of the more severe symptoms
associated with endometriosis.
Although
endometriosis is mostly found in the pelvis, there are other, rarer forms of
the disease that can be found elsewhere, this is termed ‘extra-pelvic’ or
‘extra-genital’ endometriosis. I’ve tried to list
all the places endometriosis can be found in the human body (that we know
of) and it would seem it can be found almost anywhere. However, it is
definitely worth remembering that endometriosis outside the pelvis is extremely
rare, some cases of endometriosis in places you wouldn’t expect to find it have
only been reported once.
What are the symptoms of endometriosis?
To put it
one way; everything, nothing and all things in between. In less simplistic
terms endometriosis can present with no symptoms at all. Some women are only
diagnosed when they are having an operation for another condition, or when
there is an investigation for something linked to endo, like fertility issues. However,
for those who do get symptoms, the most common one is pain, pain pain pain and
more pain, plus other things as well because apparently all that pain isn’t
enough. The most common pain symptom of endometriosis is dysmenorrhoea
(pronounced DIS-MEN-OH-RE-AH), which is defined as excessively painful periods
that cause interference to the daily life of the sufferer and is experienced by
half to two-thirds of women with endometriosis at some point in their life.
Now even I
know that ‘normal’ periods (if there is such a thing) aren’t like the tampon
commercials make them out to be; it’s not all blue liquid and laughing while
playing beach volleyball. However, if your periods are causing you to regularly
miss school/work or social occasions because they are so painful, this is not
ok and could very well be a sign of an underlying medical condition, like
endometriosis. I can’t emphasise this point enough because there is a massive
delay in diagnosis experienced by women with endometriosis. On average this
delay is 7-9 years, depending on where you live and what healthcare you have
access to, so there can be shorter or longer diagnosis times. Either way such a
long diagnostic delay is utterly unacceptable. Can you imagine going to a
doctor, in excruciating pain, and being told “sure, I’ll tell you what’s wrong
with you, in seven years”? Chances are you wouldn’t be happy about that. Unfortunately
that is the reality many women with endo have to face.
A factor
that doesn’t help the diagnostic delay is that the most accurate way to
diagnose endometriosis is with a surgical operation called laparoscopy, where
cameras are inserted into the pelvic cavity and the surgeon has a good
examination of the pelvic organs. If the surgeon finds something suspicious
they can take a biopsy and send it away to be analysed to confirm the presence
of endometriosis. Finding endometriosis, of course, is dependent on the skill
and experience of the surgeon.
There are non-invasive
imaging techniques that can aid in the diagnosis of endometriosis. Ultrasound,
for example, can be useful in finding ovarian endometriotic cysts, whilst MRI
can identify cysts, distortion of the pelvic organs caused by endometriosis and
can look inside organs without the need for surgery. However, these techniques
have nowhere near the accuracy of actually looking into the pelvis with a
camera. Unfortunately there is no accurate blood test for endometriosis,
however many research groups are working hard on this, not as a replacement for
laparoscopy, but as a means of identifying women at high risk of endometriosis
and reducing diagnostic delay.
From the
studies I’ve read and the women I’ve spoken to, the most significant
contributor to this diagnostic delay is invalidation of the sufferer’s
symptoms. Some women with endometriosis, particularly young girls with symptoms
of the disease, are told by medical professionals that painful periods are
‘normal’. Women are often prescribed painkillers or contraceptive pills to
manage their symptoms. Whilst these treatments can offer some relief, they can
be ineffective in some women. These women can often face further struggle to
get their symptoms taken seriously and can end up being labelled as hysterical (hysteria
literally translates as ‘suffering of the womb’) and can have their symptoms
ascribed to psychological rather than physical conditions.
It is true
that women with endometriosis are at an increased risk of being diagnosed with
mood disorders, depression and anxiety. However, studies have also shown that after
successful surgery to remove endometriosis, depressive symptoms regress and
overall emotional wellbeing increases. This is extremely important to note as
it shows that the physical symptoms of endometriosis can be causative of the
psychological symptoms, not the other way around. Of course it is possible that
psychological disturbances could lead to alteration in pain perception, meaning
that a vicious cycle can be established where pain leads to depression, which
leads to increased pain sensitivity, which leads to more depression and so on
and so on, but at the head of it all is the disease itself.
Another of
the common pain symptoms associated with endometriosis is chronic pelvic pain,
which affects around a third of women with endo. This differs from
dysmenorrhoea in that it doesn’t necessarily refer to pelvic pain during
menstruation and can be caused by numerous other diseases or conditions. Chronic
pelvic pain can be continuous or intermittent and can be associated with a variety
of factors, for example exercise, specific foods or certain activities, or it
may just come on randomly.
Painful sex (also
known as dyspareunia – pronounced DIS-PAR-YOO-NEE-AH) is one of the symptoms of
endometriosis that doesn’t get much attention despite the fact it affects a
third to two-thirds of women with endometriosis. Part of the reason dyspareunia gets little
acknowledgement is that it is a very personal and private matter, which can
understandably be difficult to talk about openly. Studies have
indicated that women who have endometriosis (particularly DIE) behind the
vagina, in an area known as the rectovaginal
septum, are more likely to suffer from dyspareunia. One of the most
challenging aspects of this symptom is the effect it can have on relationships.
I myself know how important it is to have an open dialogue with partners to
ensure they understand the physical limitations endometriosis can place on the
sufferer, but I’ll be discussing more on that later.
There are
whole host of others symptoms that can be associated with endometriosis that
vary from person to person in terms of frequency and severity. Some of these
include: leg pain, bloating, painful urination, painful bowel movements, heavy
menstrual bleeding, spotting in between periods and fatigue.
Endometriosis
is also the proverbial misery that loves company. Rarely does a woman have
endometriosis and nothing else. I wrote a whole blog post on the subject,
which you can read here, that gives details on some of the most informative
studies looking at which other conditions are, and are not, found more
frequently in women with endo.
As you can
probably tell from reading this far, there are an awful lot of potential
presentations and symptoms of endometriosis, some women may present with nearly
all of them, some women may present with none. Each person’s journey with endometriosis
will have elements that are shared with many other sufferers, but at the same
time will have elements that are very specific to their own personal experience
of the disease. This unfortunately, also makes endometriosis all the more difficult
to diagnose and treat effectively.
Who gets endometriosis?
That’s a
good question. Unfortunately there is very little good quality information
available that could give us an answer. We do know that endometriosis affects
around 1 in 10 women of reproductive age, but it would seem that endometriosis
can affect anyone, of any age (I’ve read case reports of endometriosis in infants
and women in their seventies, although I should point out these cases are very,
very rare) and of any race/socioeconomic background.
Studies have
shown that women with a family history of endometriosis are more likely to have
the disease. This implies there is a strong genetic component to endometriosis
and that the risk can be passed from parent to child. This doesn’t mean that a
woman with endometriosis is guaranteed to pass the disease to her daughter;
rather the chance of her daughter having endometriosis is increased. Endometriosis
can also appear in women with no family history, the causes for this
‘spontaneous’ form of the disease are still hotly debated, in fact no-one truly
knows why endometriosis occurs at all, but there are plenty of ideas, some of
which I’ll be discussing later.
We do see
that women aged 21-35 are more likely to be diagnosed than women of other age brackets.
This has led to the misconception that endometriosis is a ‘career woman’s
disease’, which afflicts those women who delay childbearing to further their
career. This notion is not only insulting to women, it is also factually
incorrect.
In my view
there are two main reasons that endometriosis appears to be more common in in
women in their mid-twenties to early thirties. Firstly, the symptoms of
endometriosis tend to appear in adolescence, if you factor in the
aforementioned diagnostic delay of 7-9 years then it becomes apparent diagnosed
occurs in your mid-twenties. Secondly,
the notion that delaying childbirth is somehow responsible for causing
endometriosis is simply wrong. There is some evidence to suggest that, during
pregnancy, the symptoms of endometriosis can subside. However, symptoms can
rapidly return after giving birth. Having children is in no way a cure for
endometriosis. It is also incredibly insensitive to suggest to a woman, who has
a condition characterised by high rates of fertility problems, that delaying
childbearing is the cause for said condition, or that having children is the
solution to it. That is like telling a person in a wheelchair that not walking
is the cause for their paralysis and it can be cured by going for a jog.
From what I
have learnt over the years it would seem that the reason endometriosis is so
commonly diagnosed in women of a particular age range, is not because of the
choices or lifestyle of the women in question, but because of lack of awareness
and education about endometriosis. This is endemic, not only amongst the
public, but also in the medical community. There are a great deal of myths and
misinformation about endometriosis (several of which I have wrote
about previously) and women with endo often have to become experts on the
subject themselves in order to justify their illness to others.
I have
encountered this ignorance personally, mostly in the form of bizarre theories
about what causes endometriosis and how it should be treated (my favourite one
to date was the doctor, yes a doctor, that said endometriosis can be caused by
wearing your trousers too tight!). The most important weapon any woman with
endometriosis can have is knowledge. Resources and information are plentiful,
but the best piece of advice I could give is always ask for evidence. If someone suggests a treatment, ask what
studies support their assertion. Where does the evidence come from? Are there
studies that show how effective it is? Asking just a few simple questions like
this can quickly reveal which claims have no basis in evidence.
Fortunately
there are many great organisations out there that are fighting for better
awareness and education for endometriosis and they are doing a great job of it.
I myself have noticed a distinct improvement in endometriosis awareness in the
last 10 years, so the future looks bright.
What are the treatments?
There are
many treatments for endometriosis, but no cure. That itself is a contentious statement
and lies in the tricky semantics of the word ‘cure’. Some would argue that
surgery which removes all endometriosis and gets rid of its symptoms is a cure,
but with endometriosis there is always a chance the disease could recur, maybe
not for years or decades, but there is still a chance and if a person’s disease
relapses, then they were never truly cured. We could get bogged down in this
argument about meaning all day, so let’s not do that. Instead let’s discuss
what the treatments for endometriosis are and their effectiveness.
Endometriosis
is not a ‘one disease, one treatment’ affair, there are many treatment options
open for women with endometriosis and it is often quite a minefield of trial
and error to find the right one. Something that definitely needs to be
considered is that endometriosis is rarely a disease of just one symptom.
Endometriosis requires a holistic approach to therapy that considers all
aspects and impact the disease has on a person’s life.
Most women
when they are first diagnosed, or when they are suspected to have
endometriosis, are prescribed painkillers. These vary in effectiveness with
some women finding minor relief and some women finding no relief at all. In
others the pain can be so severe as to require very strong painkillers like
codeine or morphine. Painkillers though do nothing to treat the disease itself,
merely to reduce the symptoms, if pain symptoms are severe then further
treatment needs to be sought.
There are
several types of hormonal medication that women with endometriosis may be
offered, the most common ones are:
·
Birth control pills (BCPs) contain a form of
estrogen and a progestin (which acts like progesterone). These are also known
as ‘combined’ pills as they combine two hormone types in one pill. The rationale
for using this treatment is that endometriosis needs estrogen to remain active,
the pill reduces the amount of estrogen in the body to a constant low level.
You may wonder why, if endometriosis needs estrogen, does the pill have
estrogen in it? Estrogen is added to prevent some side effects like
breakthrough bleeding and actually works to make the pill a more effective as a
contraceptive. It is thought that endometriosis requires a certain threshold of
estrogen to remain active. The combination pill contains such a low dose of
estrogen that it is below this threshold and therefore safe for treating
endometriosis.
There are many different brands and formulations of
birth control pills so it’s always worth asking your doctor what the exact
composition of your medication is (although this should also be provided on the
instruction insert that comes with your medications). The way in which the
formulation of the pill varies determines whether it is monophasic or multiphasic.
Monophasic pills contain the same levels of each hormone in each pill,
multiphasic drugs on the other hand, deliver different levels of hormones over
the course of a month. The multiphasic drugs were developed in order to reduce
some of the unwanted side effects of monophasic drugs.
·
Progestin only pills (POPs), or mini-pills, only
contain a progestin; these tend to be used if a patient finds the side effects
of the combination pill intolerable. At present there is no evidence to suggest
whether POPs or BCPs are better for the treatment of endometriosis, but because
of how differently each woman may react to each drugs, it is difficult to say
which is best. Medical guidelines suggest BCPs and POPs are used as a first
line treatment for endometriosis and can be safely taken for long periods of
time, provided the side effects are tolerable. Progestins can also be given as
an injection (the most well-known being depo-provera), and via an intrauterine
device (commonly known as the coil), which provides more local delivery of the
drug, in theory reducing the side effects. Injections and the coil have the
advantage of providing long term therapy without having to take pills every
day, but the disadvantage that, if side effects become problematic, the drug
cannot be stopped as easily as pills can. It is always a good idea to discuss
with your doctor which form of treatment is right for you, particularly as
medications designed to prevent conception aren’t ideal of you want to conceive
anytime soon.
·
Gonadotrophin releasing hormone analogues (GnRHa)
are, as the name suggests, drugs that mimic the effect of GnRH
in the body. These drugs work by dramatically reducing the production of
estrogen by the ovaries, essentially putting the body into a false menopause
and are generally used as a second line treatment for endometriosis. Although
GnRHa’s have been shown
to have some beneficial effects in reducing the symptoms of endometriosis (however
evidence shows their benefit is comparable to that of other treatments like the
coil and BCPs) and improving conception if given for 3 months prior to trying
to conceive, they often come with a hefty amount of side effects and cannot be
taken for longer than 6 months without increasing the risk of causing permanent
health problems. The menopause-like state they induce can result in side
effects like mood swings, weight changes, hot flashes, vaginal dryness and loss
of bone density to name but a few, which means this is where careful
consideration needs to be made in terms of downsides weighed up against
benefits. A popular option offered to
women to reduce the side effects of this treatment is ‘add back’ therapy. This is
essentially hormone replacement therapy (HRT), where a small dose of estrogen
is given to alleviate the side effects of estrogen withdrawal. You may wonder
why or how estrogen can be given to women when estrogen is implicated in the
growth of endo. It is believed there is a threshold level of estrogen needed to
stimulate the endo, any dose of estrogen given below that level shouldn’t cause
the growth of endometriosis. Nevertheless any women on HRT who experiences a
relapse of endometriosis symptoms needs to consult her doctor as soon as
possible.
·
Aromatase inhibitors haven’t been used to treat
endometriosis for a very long time so there isn’t as much evidence about their
effectiveness as other drugs. Sometimes endometriosis doesn’t respond to other
forms of treatment mentioned above. This can be due to the endometriotic lesion
having an enzyme called ‘aromatase’ active in it. Endometriosis relies on
estrogen to stay active, therefore most treatments either limit or reduce the
amount of estrogen the ovaries produce. However if endometriosis has the
aromatase enzyme, it can synthesise its own estrogen, essentially becoming
independent of the hormones produced by the ovaries and becoming a disease that
does not respond to first and second line treatments (this is known as refractory endometriosis). For this kind
of endometriosis aromatase inhibitors may be offered. This treatment is
especially useful for older women with endometriosis, who are nearing (or past)
the menopause, or who may be ineligible for surgery. These drugs do drastically
reduce estrogen production in the body though, so can have similar side effects
to GnRH analogues, therefore monitoring side effects, particularly in older
patients, needs to be undertaken carefully.
Something important to take into consideration though is
that, if the symptoms of endometriosis don’t respond well to initial treatment,
other conditions must be accounted for too. Endometriosis and adenomyosis are
found very frequently together as are adhesions in women with endometriosis,
therefore it is important that doctors conduct a thorough investigation to
determine exactly what conditions they are dealing with and how best to treat
them.
·
Alternative or complimentary therapies are often
sought by women suffering the symptoms of endometriosis to try in conjunction
with other treatments. Again I would reiterate that doing your research is the
most important thing to do, especially where alternative therapies are
concerned, mainly because they are not regulated or subject to the same
standards of quality control and testing as conventional medicine. One approach
that many women benefit from is dietary changes. This doesn’t work for
everyone, but if there is the possibility of some relief from the symptoms of
endo, it’s always worth giving a try. There are lots of different resources out
there that can advise with endo diets and specific recipes and programs to
follow, which at the core suggest: eliminating red meat, gluten, diary,
processed foods and refined sugars, whilst increasing intake of green
vegetables, fruit and omega-3 fatty acid containing foods, so have a look
around and see what you can find. One extra bit of advice though, remember
there is no such thing as a miracle cure and always be wary of those with an
agenda to push or a product to sell, anyone who truly has your best interests
at heart will offer advice freely.
·
One of
the main concerns of many women with endometriosis is the effect the disease
can have on fertility. The true effect of endometriosis on fertility is not one
of clear distinction. The proportion of infertile women with endometriosis is
reported to be anywhere between 9-50%. Although, before going any further, we
need to define infertility and subfertility. Infertility is defined as
not being able to conceive at all, however many women with endometriosis are in
fact subfertile, meaning that they are able to conceive, but it is much more
difficult. It is reported that monthly chances of conception drop from around 25% to 2-10% in
women with endo, making becoming pregnant problematic. There are also problems
that can occur during pregnancy to consider, some evidence suggests complications
like preterm birth, preeclampsia and placenta previa are more common in women
with endo, but as long as these risks are recognised by doctors and midwives
then any risk to the mother and child should be minimised. One of the most
obvious causes of reduced fertility is endometriosis affecting the ovaries
(although endo can also have effects on hormonal balance and the structure of
the fallopian tubes which affects fertility as well). The presence of
endometriosis does not only affect the ovaries; even if an egg is fertilised it
must implant in the endometrium to develop. The endometrium has a very narrow
timeframe when implantation of the developing embryo can occur, called the
‘window of implantation’. There have
been many studies that have concluded there are several differences in the
endometrium of women with and without endometriosis. The big question is
though, what clinical implications do those differences have? Studies have shown that
several genes are altered during the window of implantation in the endometrium
of women with endometriosis and this may contribute to the reduced fertility
some women with endo experience. There is a much more in depth article on the
effect of endometriosis on pregnancy outcomes you can read, for free, here.
Women suffering from fertility issues may decide to undergo
assisted reproduction technology (ART) to aid in achieving pregnancy. ART can
refer to therapies such as fertility medication and in vitro fertilisation
(IVF), which are the more common forms of ART. The studies that
have been conducted on the use of ART in women with endometriosis have found
that having endo doesn’t appear to alter the success of these treatments.
Medical therapy
does, and always will, have its uses in managing endometriosis, and hopefully
will only improve as the years go by and our understanding of the disease and
the progression of technology marches ever onward. However, at present medical
therapies don’t get rid of the disease itself, rather they aim to alleviate the
symptoms. The best long term results from the symptoms of endo come from
surgery to physically remove the disease. In order to diagnose and surgically
treat endometriosis a laparoscopy is the
most common type of surgery performed. This involves inserting several ‘arms’
(which are like metal tubes) into the pelvis that have various attachments like
a camera and manipulators or surgical scissors or a laser etc. Depending on how
complex the surgery is and what needs to be done depends on how many tools the
surgeon will have to use. Usually with laparoscopy you will end up with several
small (about 1-1.5cm long) incisions around the pelvic area.
The advantage
of laparoscopy is that endometriosis can be diagnosed and treated during the
same operation, if time permits, though some women will have to have a
diagnostic laparoscopy separate from a therapeutic one. The different surgical procedures can be
classified in two ways depending on the extent of the surgery that needs to be
done.
·
Conservative surgery is a term given to surgical
procedures that generally spare the removal of whole organs, instead focussing
on removal of the disease itself. This can be done using two methods; ablation
of the lesions and excision of the lesions. Ablation involves using heat to
burn away and destroy the lesions (often using a laser), whereas excision
actually cuts out and removes the lesions (which can also be done using a
laser). Both excision and ablation have their place in endometriosis surgery,
ablation can be more useful if cutting out an area of endometriosis could prove
dangerous. For example, when it comes to operating on the ovaries, cutting out
a cyst (cystectomy) may lead to damage of the underlying tissues of the ovary,
leading to reduced fertility. For example, due to the nature of endometriotic
ovarian cysts, when surgically removing them 54-69% of ovarian
tissue can be removed too compared to only 6% when dealing with other ovarian
cyst types. Some studies
have suggested that ablating ovarian endometriotic cysts may increase the rate
future pregnancy, especially when using IVF.
There are
few studies that actually examine the difference between the effectiveness of
ablation and excision for endometriosis. Those that have been done suggest that
both techniques are roughly equally effective for the treatment of minimal endometriosis,
but excision is the preferable option for deep lesions and ovarian endometriotic
cysts, as it leads to better symptom improvement and less likelihood of the
disease recurring, but as mentioned above careful consideration needs to be
made when weighing up the outcomes desired by the patient.
·
Radical surgery involves the whole or partial removal
of organs for the treatment of endometriosis. This can be as a result of deep endometriosis
infiltrating the bowel (which can occur in 6-35% of deep endo cases) or the
urinary tract (which can occur in 1-5% of deep endo cases). Other forms of
radical surgery include hysterectomy, salpingectomy (removal of the fallopian
tubes) and oophorectomy (removal of one or both ovaries). You may wonder why a
hysterectomy would be beneficial for endometriosis, after all the lesions are
the cause of the symptoms and they are most frequently found around the uterus,
not on it. As mentioned before, adenomyosis and endometriosis are two
conditions found very frequently together and unfortunately hysterectomy is the
most effective treatment for adenomyosis. Hysterectomy though is not a viable
treatment option for endometriosis alone and, although some insist on grasping
to the idea that hysterectomy is somehow a cure for endometriosis, this is
simply not the case.
Careful consideration needs to be made when deciding the
optimal surgical approach for different types of endometriosis and the
conditions associated with it. For example, although the risk is still low,
radical surgery does carry an increased risk in operative and post-operative
complications, some of which can be severe, which is why it is always important
to discuss the surgical procedure you are going to undergo with your surgeon.
What causes endometriosis?
And the
award for the most contentious question in endometriosis goes to…this one! The
absolute truth of the matter is that no-one knows for certain what causes
endometriosis. There are a few theories though, which at best explain certain
aspects of the disease, but as yet there isn’t a unified theory of
endometriosis. I’ll give a brief overview of some of the most popular theories
here, if however you would like to read an in depth article on the history of
endometriosis you can do, here.
Perhaps the
most widely known theory is that of retrograde menstruation. This theory was
developed in the 1920’s by a U.S physician by the name of John Sampson. He
postulated that, during regular menstruation, most of the blood and lining of
the uterus (the endometrium) would exit the body in the usual manner, but some
would travel up through the fallopian tubes and out into the peritoneal space
(which is where the reproductive organs sit). Once there the endometrial
fragments implant on and around the surface of the reproductive organs and form
growths that are fed by the hormone produced by the body and result in what we
call endometriosis.
At the time
this theory made an awful lot of sense. Observing endometriosis down the
microscope, there are obvious visual similarities between endometriosis and the
normal endometrium. Additionally the process of endometrial fragments
travelling up and out from the uterus (retrograde menstruation) is known to
occur in 90% of women. Furthermore endometriotic lesions seemed to react to
hormones in a similar manner to the normal endometrium (i.e. growing when
exposed to estrogen). Not only this but over the years using animal models of
endometriosis, fragments of the endometrium were injected into the peritoneal
space of monkeys, mice and rats to mimic retrograde menstruation and, lo and
behold, endometriotic lesions formed. So it’s easy to understand why this
theory gained so much traction and popularity. However, as the march of progress
continued and research methods became more advanced, some holes in this theory
became apparent.
Perhaps the
most obvious question to ask would be – if retrograde menstruation is the cause
of endometriosis, and retrograde menstruation happens in 90% of women, why
don’t 90% of women have endometriosis? It is known that women with endo show
alterations in their immune system that could allow endometriosis to form. In
particular, women with endo show alterations in the immune cells that would
normally clear away the refluxed endometrial fragments, making it easier for the
cells to implant around the reproductive organs.
Detailed
analysis of endometriotic lesions however, has shown that there are distinct
differences in the genetic, protein and gene regulation profiles and
sensitivity to hormones between endometriosis and the normal endometrium
indicating they are quite different tissue types. Certain types of
endometriosis are difficult to explain with the retrograde menstruation theory,
in particular endometriosis outside the pelvic area. Endometriosis has been
found in almost every organ in the body (as I’ve written about previously),
although it should be noted that some cases of extra-pelvic endo are extremely
rare, sometimes only one case exists. Perhaps some of the most damning evidence
against retrograde menstruation comes from case reports of endometriosis in
unborn foetuses, women who cannot menstruate, animals that don’t
menstruate and in men
(although there have only been a handful of male endometriosis cases reported
worldwide).
The evidence
of endometriosis like patches in unborn foetuses certainly suggests
endometriosis, or at the least the propensity to develop it, is something you
are born with. Familial and genetic studies support this as it has been found
that there are genetic alterations more
common in women with endo and women with a first degree relative with
endometriosis, are much more likely to develop the disease too.
So what could the answer be? Several other
theories have been proposed about how endometriosis could arise. One suggested
that, under the influence of hormones like estrogen, normal tissue in the
pelvis could transform into endometrial-like tissue. This has led to
researchers pointing the finger at environmental pollutants that mimic the
effect of estrogen in the body. Although some research has been done into this area,
the results are far from conclusive. Experiments done in the
Other
theories have taken this further by suggesting that, during the very early
development of the reproductive organs in the foetus, some of the tissue that
would go on to become the uterus gets ‘misplaced’. When a girl reaches puberty
and hormone levels rise, these patches of tissue mature into endometriotic
lesions. This explanation would certainly account for the cases of
endometriosis in men as all of them have been men undergoing hormone therapy
for prostate cancer. You can find a much more detailed analysis of explanations
regarding the origin of endometriosis here.
Of course,
it could be there is no single cause for endometriosis and there are multiple
mechanisms by which the disease can arise. What we do know about the origin of
endometriosis can be summarised as
-
Most women with endometriosis report the
symptoms appearing in adolescence, particularly near puberty, suggesting
hormones play a role in the onset of disease symptoms
-
Endometriosis appears to be a condition you are
born with, or you are born with an increased risk of developing the disease.
There is nothing you do in life to ‘get’ or ‘catch’ endometriosis, that is down
to fate alone.
-
Endometriosis displays a strong genetic
component and seems to run in families, this can obviously be a concern for
mothers with daughters. However, there is nothing one can do to prevent someone
having endometriosis, women with endometriosis need an effective support
network and that should start at home. So I’ve always said, the best thing a
young girl with endometriosis can have is a mother who understands.
-
Although endometriosis can run in families, it
can also occur spontaneously in women with no family history. These cases are
more of a mystery and no one really knows how or why they occur. Of course
there are plenty of other immune conditions, neurological conditions and
cancers, which have a genetic component and can just arise seeming out of
nowhere, so it could very well be that endometriosis is no different.
-
Endometriosis doesn’t appear to affect any race,
or ethnic group disproportionally like other disease such as fibroids or
diabetes. However no large studies have been conducted to investigate whether
this is true or not.
-
Other medical conditions such as immune
conditions seem to be more frequent in women in endo, suggesting whatever
influences the development of endometriosis also influences the risk of other
conditions as well
Information for Partners and Family Members
I’ve been
the partner of a woman with endometriosis for 17 years at the time I’m writing this
and also I’ve been the son of a woman with endometriosis all my life; it has
been the inspiration for me to study endometriosis professionally and why I
write this blog.
Over the
years there are few lessons that I’ve learnt that I hope others will find
useful in supporting someone with endometriosis. I should point out that I can
only talk from the male partners perspective, because that is what I am, I hope
this advice is applicable to everyone, but if there are specific issues or
experiences you know of that apply to same sex couples, or if you are a trans person
with endo, I’d love to hear about your experiences either in the comments or
message me @endoupdateblog on twitter.
Perhaps the
most important thing I’ve learnt is that many women with endo have to face
continual invalidation of their symptoms from people in general and medical
professionals sometimes. Endometriosis is not a visible disability, many women
with endo look fine (don’t ever say to
someone with endo “but you look fine”) which makes it difficult to know
exactly what the condition can do unless you’ve had a great deal of personal experience
with it. So simply believing someone
with endo when they describe what’s wrong, or how they are feeling is very
important. Another point is understanding the limitations that endometriosis can
put on someone. Endo can result in pain during certain times and ‘flare ups’
that mean the person cannot do everyday activities and this is especially
frustrating for them, so it is essential to not make them feel blamed or at
fault; it is the disease’s fault, not there’s. I found that an individual’s endometriosis
is like a separate entity that has its own moods and character, if you come to
know that character you know how best to respond to it, so you don’t feel
helpless and actually feel helpful.
Feelings of
guilt at not being able to go out and socialise or do everyday things, are
common in women with endo and other chronic conditions, therefore be mindful of
how you respond to someone’s limitations so as not to cause or worsen feelings
of guilt. That is not to say you need to be treading on eggshells or offering
pity to people with endo, just that a bit of patience, understanding and
consideration will go a long way.
Of course as
with many chronic illnesses intimacy between partners can become an issue. This
can be especially the case with endometriosis as the condition can lead to
symptoms that make sex too painful and the treatments can decrease libido. A
partner of someone who experiences these symptoms needs to understand that sex isn’t
the be all and end all of a relationship, most of you probably know that
already, but women with endo can sometimes feel pressured or like they have to satisfy their partner. If this
is the case it’s up to you to reassure her that intimacy isn’t just about sex
and remind her of all the other wonderful things about her that are the real
reason you’re together. And sometimes it might be that you both do want sex,
but don’t forget that sex isn’t just one thing, there are lots and lots of things
to try that can be good for both you; different positions, taking it slow, lots
of foreplay, use your imagination! Be patient.
One of the
most difficult aspects of being a partner or family member of someone with endo
is seeing someone you love in pain but being unable to do anything about it. I’ve
experienced this feeling of helplessness a lot myself, but educating yourself
about the disease and how it affects the person you care about will give you
real insights into things you can do to help. No, you will not be able to cure
them, but learning about treatments and how that person’s endo works will allow
you to have an open dialogue with them about their condition and what the
little things are you can do that make a big difference. Sometimes it can as
simple as knowing when to make a hot water bottle to knowing not to plan an
event or activity during certain times of the month, it all helps lower the burden
of endometriosis.
I can’t
emphasise enough the importance of education about endometriosis, being able to
talk to someone openly and frankly about their condition improves a
relationship between two people by creating ways for them to talk and interact
which would otherwise be shut off because of the illness. An illness like
endometriosis doesn’t have to be a barrier between people, it can be the exact opposite,
you’ve got to put the time and effort, but the helping someone you care about
is worth it.
Further information
There are
loads of other good endometriosis information sites out there, notable ones include:
http://aendometrioseeeu.blogspot.co.uk/
(Portuguese)
If I’ve
missed any sites out that you think should be on this list, add them to the
comments below, links to personal blogs are also welcome, however a strict
policy I have on this blog is that no adverts
or links to sites containing adverts for products or services that have not
been tested with an adequate level of scientific rigor will be allowed.
