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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.
Endometriosis: an underdiagnosed painful disease

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.
Endometriosis: an underdiagnosed painful disease
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.

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