Why Getting a Diagnosis of Endometriosis Is Still So Difficult for Many Women
In Spain, up to two million women can suffer from endometriosis. The Care guide for women with endometriosis in the National Health System It was approved in 2013 in Spain, however, eight years later it is far from being fulfilled. The associations of those affected report that some of the guidelines set out in this guide are not being followed. According to data from Ministry of Health, the diagnosis takes between seven and eight years on average.
Endometriosis is a benign disease that affects women in their reproductive age, when the endometrium, which is the tissue that lines the uterus on the inside, grows even outside of it. Frequently, it is located in the fallopian tubes, ovaries, and peritoneal tissue that lines the abdominal cavity, although it can also be located in the bladder, intestine, or even the abdominal wall. Dr. Carmen Navas, gynecologist at Vithas Granada, explains that its cause is unknown, which makes its prevention difficult and sometimes also its proper diagnosis and treatment.
"We are considering it as a less important disease than it really is for a young woman," says Dr. Alicia Hernández, coordinator of the Endometriosis and Gynecology Oncology Unit of La Paz, a pioneer in Spain. "It is benign, but it affects both your fertility and your life, there is no other, it is unique. That is sadness. It is benign, but the pain totally erodes your life."
Associations of women with endometriosis estimate that the number of affected exceeds two million. "It is not the fault of the professionals," says Ana Ferrer, secretary of ADAEC (Association of People Affected by Endometriosis) and diagnosed with the disease more than 20 years ago. "In terms of personnel, the Malaga unit could not be better, but the quality of the media is totally deficient." This perception is shared by all women contacted by elDiario.es, for which getting the diagnosis and being referred to one of the three reference units in Spain, if they have been successful, has been a real battle.
Many women accept as normal that the period hurts, a socially extended idea, even if it does it a lot and in a disabling way, points out Francisco Carmona, head of Gynecology at the Hospital Clínico de Barcelona.
In addition, he warns that part of the responsibility falls on some family doctors who "make them understand that the pain is normal and that the fault in some way is theirs for being lazy." Although on other occasions the problem occurs when reaching the specialist, "who either does not indicate the appropriate actions or does not adequately interpret the examination that is well indicated in the protocol." Solving this problem is of vital importance, since with early detection, women usually do not exceed a degree two of the disease, compatible with the development of a normal life.
Endometriosis is commonly claimed to affect 10% of women. A report published by the Government in 2020 After carrying out a review of the scientific evidence collected so far, he estimated that those affected were between 2 and 8%. However, this report insisted that "the clinical complexity of endometriosis and the still current limitations to diagnose it may be associated with an underestimation of the incidence and prevalence diagnosed."
The Care guide for women with endometriosis in the National Health System It was approved in 2013. The associations of affected people denounce that some of the guidelines set out in this guide are not being followed. The care itinerary establishes that in the event of any suspicion of suffering from endometriosis, the woman who attends the primary consultation should be referred to specialized care, that is, to the gynecology consultation.
It is there where the exploration and diagnostic tests should be carried out to determine whether the suspicion is confirmed or not and to specify whether it is a minimal, mild or moderate case. In this case, the patient goes to a care plan coordinated by primary care.
If doubts arise or further tests are needed to establish the degree of the disease, refer to a specialized endometriosis consultation. "We have not just seen that the referral guidelines are being met," alleges Lorena Martínez, president of EndoCatalunya. The protocol leaves open the possibility that some Autonomous Communities have a Specialized Unit to attend to the most serious cases, although only Catalonia, Madrid and Andalusia have them officially.
This results in an added complication. On the one hand, because on many occasions referrals between communities are rejected, according to ADAEC, and on the other, because it involves long journeys for patients. This point is one of those that most worries the associations of people affected by endometriosis, who denounce that the care that each woman receives is conditioned by her place of residence.
The La Paz Unit in Madrid has a high percentage of referrals, according to Dr. Alicia Hernández in a telephone conversation to elDiario.es. This unit cares for more than a thousand women a month, but the doctor agrees that "greater ease and fluency is necessary to refer between communities to the centers of reference that are considered." However, the means are limited: "We are very short on staff, we work on Saturdays, we do workshops with patient associations."
Therefore, it expresses the need for units such as La Paz to be recognized as a Center, Service or Reference Unit (CSUR), in order to guarantee this specialized care. "Indirectly we function as such, but the means are not the same despite having the support of the hospital, the counseling and the ministry," he says. CSURs are usually intended for rare diseases and endometriosis has a high incidence, but due to its complexity, cases of severe endometriosis require reference units.
However, this is not the only shortcoming in the 2013 Guide. Both Dr. Francisco Carmona and Dr. Alicia Hernández from La Paz agree that the protocol is good as a basis, but there is still a wide margin for improvement. "The disease in ten years does not change that much," says Dr. Hernández, however, "surgical and medical treatments have done so to treat it, as well as fertility treatments."
Dr. Carmona confirms that they have worked on an update of the protocol that has not yet been published. However, it emphasizes the importance of alleviating the deficiencies of the system, such as "the lack of implementation, the need to create more reference units and also to disseminate this protocol among the doctors who must be in charge of putting it into practice. ".
In fact, Alicia Hernández considers that the problem lies in the fact that the 2013 Guide focused too much on multidisciplinary teams, necessary for the surgical interventions that severe endometriosis requires. But now it is necessary to incorporate the concept of multidisciplinary consultation, so that the care of the gynecology team is given in collaboration with the reproduction unit, the pain unit and the psychology unit.
A severe degree of the disease can completely condition the life of this woman, from spending several days in bed due to severe pain, which implies absenteeism from work and school, but also not being able to have sexual relations or having infertility problems. For this reason, the doctor emphasizes the importance that "these treatments so expensive both in terms of pain and fertility are available to any woman in public health, regardless of the city and whatever her personal situation." Something that seems to be not being fulfilled, since patient associations denounce that many are forced to pay for psychological care, pelvic floor physiotherapy or a nutritionist in a private capacity, if they can afford it.
In addition, there is an aspect in which health professionals and patients agree: the need to make their symptoms known so that both adolescents and women know how to identify the signs that there may be a problem. From the Peace Unit they insist that "awareness is needed that period pain and excessive bleeding do not necessarily indicate that one has the disease, but there is a risk of developing it and the symptoms that make us suspect the disease must be treat them in time. " Several associations grouped in EndoSpain argue that in order to achieve this it is essential that the regional governments, which are responsible for Health, work on promotional campaigns on the street and in the classroom.
In this sense, on November 10, the Senate Health and Consumer Commission reached a agreement so that, in collaboration with the Autonomous Communities and affected associations, "awareness, awareness and information campaigns" are promoted. The groups also pledged to promote the setting up of "specialized multidisciplinary units for the diagnosis and treatment of endometriosis" as well as a training and information plan for health professionals.
"The period does not hurt, annoying, it is uncomfortable, but it does not incapacitate," sighs Ana Ferrer, who although she wants to trust that this public commitment will mean an improvement in the care of the disease, insists that the reality they face day after day is , at the moment, very different.