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Madrid, March 8, 2023. Endometriosis is a disease that is difficult to diagnose, and the approach is key to the patient’s prognosis. Therefore, to receive effective treatment, a woman must go to a professional specialized in endometriosis who knows about and how to use all the available treatment alternatives, from drugs to surgical intervention.

As Dr. Javier de Santiago, head of Gynecologic Oncology at MD Anderson Cancer Center Madrid, explains, “most patients diagnosed with endometriosis usually take contraceptives or other medications, but they are not fully effective and the pain does not subside because, in many cases, a full diagnosis has not been made. Faced with the reality that medical treatment is not enough, patients must be referred to an endometriosis specialist who will also assess surgical intervention. Currently, the disease affects between 10% and 15% of the female population, which is more than 2 million affected in Spain.1,2

 The main risk of delaying diagnosis and adequate treatment is the chronicity of the symptoms. In some cases, the pain has gone on continuously for so many years that it persists despite receiving appropriate treatment because it is "centralized"; that is, in layman’s terms, the brain gets used to it. “It is the same as with the pain of a phantom limb: the patient continues to feel pain in a part of the body that is no longer there. We also see cases in which deep endometriosis has serious consequences in the digestive tract and in the nephro-urological system.” However, "the vast majority of patients notice improvement with the right treatment." An essential factor when talking about a chronic disease, generally progressive, disabling and, in at least 50% of affected women, recurrent.2

 The patients themselves speak about the importance of having specialized doctors. Paloma Aguilar, a patient at MD Anderson Madrid, recounts that "after visiting about ten different gynecologists throughout my life, everyone told me that it was inoperable, until I went to a specialized endometriosis unit where they operated on me and removed all the endometrial tissue that had adhered to many areas of the pelvis, including the rectum.”

Surgery allows the removal of almost all the endometrial tissue

So, although the initial treatment of endometriosis should always be medical, for those women who do not respond adequately, surgery must also be an option. “What we now know is that medical treatment is not 100% effective in all cases of endometriosis. However, in most cases where surgery is indicated, patients notice a substantial improvement, since practically all the endometrial tissue located outside the uterine cavity, which causes pain and the symptoms of endometriosis, can be removed”, explains the doctor. "The aim of surgical treatment must be to eliminate all the disease, otherwise the desired results are not achieved."

At the end of the day, the surgical option will depend on a good diagnosis. "On many occasions, the disease is not diagnosed as it is confused with menstrual cramps (dysmenorrhea) and tests like ultrasound or MRI are not performed to rule out deep endometriosis," says Dr. Javier de Santiago. As a result, he points out, "the majority of patients who come to the clinic are women who have been suffering from the condition for years and have normalized their period pain without going any further with the diagnosis." Although many women experience pain during menstruation, those with endometriosis often describe period pain that is much worse than what would be considered usual and gets worse over time.

Disabling, underestimated symptoms

At a psychological level, this disease has a significant impact on the quality of life of women. “It has an enormous impact. You not only feel pain during menstruation, but when you are not menstruating too, and it is continuous, which leads to psychological problems as well as problems at work, socially and in family relationships, since people who do not suffer from endometriosis cannot understand the extent of the pain and do not know how to live with the condition”, states the doctor.

Ms. Aguilar agrees, she says “endometriosis has always affected me in my day to day, ever since I can remember. I used to think they were just painful periods, but 20 years later I discovered that it was all because of this disease. My mother and grandmother had those kinds of painful and disabling periods too, so I always thought it was normal, because the gynecologists saw it as completely normal. But after one episode where I ended up in the hospital, the pain became chronic."

All these aspects of the patient's life are essential to give the best follow-up to her disease. As the doctor concludes, “it is the gynecologist who prescribes and explains the treatment, but the patient decides which option to choose. We must be transparent with them and have fluid communication to bring about positive change in their quality of life”.