March 14, World Endometriosis Day: an underestimated disease that is accentuated by menstruation

World Endometriosis Day is celebrated with the aim of giving visibility and raising awareness about an underestimated disease that only affects women and seriously diminishes the quality of life of patients who suffer from it.

Endometriosis is not only an invisible disease but also under-diagnosed, and this means that there is no precise percentage of women affected. Globally, it is estimated that 10% of women of childbearing age have endometriosis and, of these, a quarter have severe endometriosis. In Spain this means that about 2 million women have endometriosis and, of these, about half a million have severe endometriosis, particularly high figures.

From Top Doctors we want to join this objective and we count on the collaboration of Dr. Carmona Herrera, specialist in Gynecology and Obstetrics and Dr. Alonso Zafra, specialist in Assisted Reproduction. Dr. Carmona is head of the Gynecology Service at the Hospital Clínic in Barcelona and Medical Director of Women’s. He has pioneered the introduction of minimally invasive techniques in Spain. He has pioneered the introduction of minimally invasive techniques in Spain, as well as important surgical advances, the most recent being the performance of the first uterus transplant in Spain. Dr. Alonso is director of the Institute for the Study of Sterility, and has previously been head of the Reproduction Unit of the Gregorio Marañón University Hospital, as well as medical director of the Tambre Clinic.

What exactly is endometriosis?

Endometriosis is a chronic disease, which affects women. This pathology takes place in the endometrium, which is the innermost layer of the womb and which is prepared each month for a possible pregnancy and, if it does not occur, is expelled in the form of menstruation, as Dr. Carmona explains. When a patient suffers endometriosis, “endometrial tissue appears and grows in locations that are not normal, outside the endometrium,” adds Dr. Alonso. The endometrial tissue appears “generally in the pelvis, but it can also appear in the ovaries, in pelvic organs, such as the intestine or the bladder, but it can also appear in distant places, such as the liver or the lung, although this is less frequent,” Dr. Carmona assures us.

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It is not a deformity or a functional problem, as a general rule. Dr. Carmona confirms that the endometrium of patients with this pathology is completely normal: it responds, acts and functions in the same way as the endometrium inside the womb, and prepares itself in the same way for a possible pregnancy. The difference lies in the timing of menstruation. The woman with endometriosis will have a normal period but, in addition, she will have small hemorrhages, in the place where the foci are, and the endometrium will also bleed. These bleedings that occur in places where the endometrium is out of its normal location are very painful for the patient, in addition to other symptoms that appear over the years, worsening. This can cause the disease, if not treated correctly and in an early manner, to end up altering the quality of life of the patients in a very important way.

Intense pain, the reality of patients with endometriosis

The most frequent symptom is pain. “It causes pain during menstruation, with sexual intercourse (dyspareunia) and, sometimes, constant pain without being associated with any phase of the menstrual cycle. Sterility can also be a consequence of endometriosis and, in some women, it is discovered during an infertility study,” explains Dr. Alonso.

The endometrial foci that are out of place become larger and larger as the disease progresses, and the woman has more and more pain. “These are very focused symptoms in a certain sphere of the woman, which have to do with the fact of being a woman. It is pain with the period, with sexual relations, when going to the bathroom… All of this often generates incomprehension, loss of work days and loss of social relations,” adds Dr. Carmona.

However, the reality of endometriosis is that people do not think about it because the pain is not related to the disease. Dr. Carmona assumes that even doctors do not think about endometriosis, many times: “Society, in general, does not think that this pain is a reflection of a disease and is not a normal thing, and pain should never be considered normal, but we consider it normal if it occurs when a woman has her period, and that is a mistake”.

How does endometriosis affect women’s quality of life?

Endometriosis conditions patients’ lives in a very important way. Pain is part of their daily life, but society does not help. Many women with endometriosis organize their whole life around the fact of having or not having menstruation: “I will not be able to go on this trip because I will have my period and I will not be well; I cannot wear these clothes because if I bleed a lot they will stain; I cannot go to work and, as a result, I will be fired…”. These are some of the realities explained by Dr. Carmona in an interview we conducted with him on the subject, in which he stresses the importance of giving visibility to the disease.

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Dr. Carmona explains a real personal anecdote, as well as a sad one. As an endometriosis specialist, he wanted to launch an App for smartphones to help patients with the disease. The CEO of a company contacted him directly, very interested in the subject. When they met, he told him that he was very interested in the project, as when he was young he had had a girlfriend who suffered from the disease, who was always ill, and that “he had had to leave her”. Dr. Carmona reacts thus in the interview: “at that moment I said: this is as far as we have come”.

It is here where it would be convenient to make an exercise of empathy towards all those who suffer from the disease and who may think: “I am sick, they do not pay attention to me, I have a lot of pain, I cannot have good sexual relations, I am losing my partner, I am losing my job…”. In Spain, it is estimated that women lose, on average, 10-11 hours a week of work as a result of endometriosis.

Why is it considered an underestimated disease?

The cause of the invisibility of endometriosis in society lies in intimate patterns and perceptions that we have traditionally assumed. “Having pain during menstrual periods is considered normal, and this automatically makes the disease undervalued. And not only that, it is also stigmatized,” says Dr. Carmona.

This is compounded by misconceptions that we have taken for granted. Although Dr. Alonso explains that to date the exact cause of the disease is unknown and there are several theories about the origin, in some cases there is a genetic component. Some patients say that their mother, sister, aunt… suffered from endometriosis or “period pain”, so that the idea of “if we have been able to endure it, so can you” is implicit, or that a woman is considered weaker if she does not go to work as a result of the disease.

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All this contributes to endometriosis not being given the importance it deserves. Dr. Carmona explains: “In Spain, 7 out of 10 women with endometriosis are still not diagnosed, or are not diagnosed accurately. Moreover, once the diagnosis has been made, women have, on average, been more than 8 years since they first experienced symptoms, having consulted more than three gynecologists”.

The existence of compatible symptoms should be considered a diagnosis of suspicion. Dr. Alonso specifies: “In blood tests a marker, CA125, may be found to be elevated, although not in all cases. Cysts with a characteristic appearance can also be observed on ultrasound. On the other hand, hysterosalpingography may show indirect and non-specific signs of the presence of adhesions and inflammation in the pelvis. The diagnosis of certainty is made by observing the lesions with laparoscopy or laparotomy and histological analysis of these.”

Giving visibility to endometriosis and raising awareness

The doctors agree: in order to raise awareness about endometriosis, it is important to publicize the
disease. It is a disease that causes pain, that alters the quality of life of patients and that can even lead to infertility in some cases.

Dr. Carmona emphasizes the work in schools, teaching boys and girls that menstruation is a physiological phenomenon that should not cause intense pain. When any menstruation goes beyond mild discomfort, help should be sought from a specialist.

“Endometriosis is a lifelong journey,” as Dr. Carmona points out, so a positive message must be conveyed: women with endometriosis will be able to lead normal lives if they are properly diagnosed and treated, and they will be able to become pregnant. The treatment will vary depending on the needs and how the patient is feeling. With a proper diagnosis, with a mapping of where the disease is located and the organs affected, and appropriate medical support, patients will be able to lead a normal life and have children when they want to.