Endometriosis: an underdiagnosed painful disease
Valeria was
10 years old the first time she felt that throbbing pain go through her from
her navel to her kidneys.
Little did
she knows that the horrible pain that came with her first menstruation, and that
it would soon normalize, would accompany her practically her entire existence,
preventing her from leading a normal life. Like Valeria, around 200 million
women (one in ten) suffer from endometriosis worldwide.
The vast
the majority are undiagnosed. Because of the false myth of painful menses masks their
diagnosis, and until secondary complications, such as infertility, occur, these
patients are not thoroughly studied.
Pain as intense as that of labor contractions
Let's start
by the beginning. The womb of women has several layers. The most internal, the
one that lines the uterus inside, must allow the embryo to the implant once it
reaches the uterus from the fallopian tubes, in addition to being responsible
for providing food until the placenta is formed. When there is no pregnancy,
this layer, called the endometrium, is expelled during menstruation.
But this
the process is not the case for all women. There are times when the remains of
menstruation are not properly expelled and are released either into the
fallopian tubes or into the pelvis. This causes the endometrium to start
growing on organs other than the uterus, forming a kind of patch of endometrial
tissue here and there. It is the nightmare of endometriosis.
Most
commonly, patches of endometrial tissue invade organs near the uterus, such as
the ovaries, fallopian tubes, in the tissues that hold the uterus in place, in
the bladder, or in the intestines. With all the secondary problems that its
growth can cause in the affected organs.
As we have explained,
in most women the endometrium is destroyed with each menstruation, causing
habitual bleeding from the period. However, in those affected by endometriosis,
all endometrial patches bleed during menstruation. That is why it is frequent
to be accompanied by painful menstrual cramps in all the organs covered by
patches.
In the end,
many affected women and many professionals mistakenly associate normal
menstrual pain with pelvic pain that can be as intense as continuing labor
contractions. Furthermore, as part of this blood and endometrial debris are not
expelled normally, an inflammatory reaction is triggered in the area where they
are released.
The diagnosis is usually seven years late
To determine
the degree of severity of the disease, it is necessary to evaluate both the
a number of lesions, endometrial patches, and their extension and location. This
is because the degree of endometriosis is not always associated with the
the intensity of the pain, which complicates its diagnosis.
Patients
with mild endometriosis may experience severe pain, while patients with deep
endometriosis may not.
This
explains why many affected women are dragged from consultation to consultation
without finding a diagnosis. On average, more than 6 consultations are
necessary for patients to obtain a referral to gynecology.
On the other
hand, the great skepticism on the part of the medical community and the lack of
professionals specialized in endometriosis delay the diagnosis by an average of
7 years, somewhat frustrating considering that pelvic and imaging examinations
performed by specialized gynecologists could be enough to diagnose the disease.
Although the
the only way to evaluate it with total certainty is to practice laparoscopic
surgery. That is, inserting a tiny camera through an incision in the patient's
abdomen to locate and study the lesions.
Endometriosis and infertility
As a
a consequence of pain normalization, most endometriosis patients are diagnosed
only when they suffer other complications associated with the disease, mainly
infertility.
Why?
Basically, because the growth of patches of endometrial tissue can affect the
proper functioning of the ovaries or obstruct the fallopian tubes, in addition
to the inflammation associated with endometriosis that can impair the quality
of the eggs or prevent implantation of the embryo in the uterus.
Almost half
of those affected by endometriosis have fertility problems and have to resort
to assisted reproductive techniques, not always successfully.
The most
the worrying thing is that, despite advances in the treatment of other diseases,
endometriosis is still lacking a specific approach today.
Unfortunately,
we are far from knowing what triggers the disease and, therefore, far from an
endometriosis treatment.
Treatments
for this disease are merely palliative and have the sole objective of making
symptoms more bearable. Analgesics to stop the pain, hormonal therapy that prevents
menstruation (birth control pill) or induction of menopause are the most
common.
In most
severe cases, when the other measures are insufficient, patients undergo
surgery to remove the endometrial patches from the most affected tissues.
Vaginal physical therapy and control of the pelvic floor can also help patients
manage pain.
Great forgotten
However,
those affected by endometriosis are the most neglected in the health system.
Most of the autonomous communities in Spain lack endometriosis units and
professionals trained in the management of the disease. Referral of patients to
referral centers with specific units is in most cases mission impossible.
This implies
that there are psychological and emotional consequences. Not only because
chronic pain impairs quality of life, but also because of the underuse of
underdiagnosis, the lack of specific treatment and the nightmare of infertility
for many of these women.
Valeria is
now 41 years old and continues to live with pain, although hormonal therapy and
anti-inflammatory drugs have helped her control it and turn it into
"dull" pain. In that, she is lucky, at least for now.
However, her
dream of being a mother is increasingly far away. She has undergone numerous
cycles of assisted reproduction without success, with the physical and
emotional wear and tears that this entails. But Valeria does not give up.
Valeria is an endoguerrera.
On world
endometriosis day, I want to give a voice to the millions of people affected,
like Valeria, who only ask for visibility for this disease, for health
authorities to update endometriosis management guidelines, for health
professionals to listen to them, to train in its management and, above all,
more research.
