“Pain is real”: endometriosis, an “invisible” disease that affects millions of Mexican women

Andrea Saab is an activist, actress and founder of the Endowarriors México support network, a proposal that was born in 2020 to highlight the obstacles that women and menstruating people have faced before and after being diagnosed with endometriosis. Using tools such as photography, video and illustration, Andrea created a community on Instagram with which she began her quest to share her experiences and spread information about a disease that has been invisible.

In an interview with Infobae México, Andrea spoke about the process of detecting her condition, about her daily life living with a chronic disease and the need to create a space in which information about endometriosis would be disseminated. According to data from the Ministry of Health (SSA), it is estimated that in Mexico it affects more than seven million girls, women and menstruating people. However, many of them have not been diagnosed and some will never know they have endometriosis.

The World Health Organization (WHO) defines endometriosis as a chronic and incurable disease characterized by the presence of a tissue similar to the endometrium (lining of the uterus) outside the uterus. This causes a chronic inflammatory reaction that can lead to the formation of endometrial adhesions within the pelvic area and other parts of the body. Some of its main symptoms are severe menstrual pain, chronic pelvic pain, during defecation and during sexual activity, as well as tiredness, fatigue and bloating or nausea.

For Andrea and Guadalupe Bustos Porcayo, president of the advisory council of the Endometriosis México association, one of the main challenges women face in being diagnosed with this disease is the normalization of pain, a situation that is also motivated by misinformation in the area of education menstrual and comprehensive sexual education in school, family and gynecological spaces, from which biases and negligence have been shown in the care and detection of this condition, since the definitive diagnosis for thousands of women comes between seven and 10 years after having developed symptoms.

“The thing is that if there was enough information, many would also understand that a certain mixture of symptoms implies that it could be endometriosis and that it could be treated as such, but since they don't see anything on the ultrasound they say: “No, there is nothing. You're exaggerating. You're crazy”, we go back to all those things that make us look like exaggerated women or it's always a psychological pain when in reality the pain is real,” said Andrea, who received her diagnosis until she was 17 years old after having undergone a medical procedure because a cyst twisted her right ovary.

However, she reported that she had symptoms of the disease since her first menstruation and that since she went to primary and secondary school, she has had severe pain, vomiting and fainting, a situation that also highlights another major problem of endometriosis: neglect of girls and adolescents who show symptoms compatible with said condition.

For her part, Andrea Martín del Campo, co-founder of Endowarriors Mexico, denounced precisely through her Instagram account the medical violence she suffered on the part of her gynecologist when she did not give her the necessary instructions to consume a drug that could cause bone damage, as well as for removing it without authorization and without anesthesia an endometrial tissue. “It was traumatic, I couldn't stop screaming. It was blood and blood and blood and I was traumatized, obviously vulnerable, with my legs open and not knowing what to do, I got dizzy, I don't know if I'm going to faint, I don't know if I'm going to vomit from pain,” he said.

Although international institutions such as WHO have pointed out that endometriosis affects approximately 190 million women and girls of reproductive age worldwide, in Mexico there is a lack of statistics on how many women and menstruating people live with this disease. According to figures from the Mexican Social Security Institute (IMSS), there have been 122,049 medical specialty consultations for endometriosis between 2010 and 2020.

In the absence of institutional information and public policies for treatment, the foundation chaired by engineer Elisa Rosales created a census in order to obtain “hard data” about people suffering from this disease. However, they did not receive the response they expected from the patients.

“We took on the task of making these statistics, but with the result of our statistics in front of our social networks where we have almost 33,000 followers, because only very few people have answered it: 1,500. What does that mean? There is no culture, pain is normalized, you put up with it,” said Guadalupe and stressed that menstrual pain should not be considered common in any context.

In addition to the census initiative, the foundation also provides support to patients with endometriosis and has a directory of doctors who have specialized, both in Mexico and abroad, in the field of endometriosis, and each of them has a multidisciplinary center for comprehensive care of the disease.

However, for Guadalupe Bustos, the most important work within Endometriosis Mexico is the conduct of awareness-raising campaigns to “found the foundations of a culture of disease” that have been joined by artists and influencers to, once again, spread a single and important message: “Pain is not normal”.

For his part, the gynecologist and obstetrician Armando Menocal Tavernier, who collaborates with the foundation, explained in an interview that one of the main challenges in making this disease visible is that there are not so many doctors trained to manage it, since it can mask many or resemble many other ailments and commented that health institutions may not give it the necessary importance because there are not enough trained and equipped centers for comprehensive medical care because disciplinary treatment is required.

“You must have a colorectal surgeon who specializes in the subject, a urologist, gynecologists familiar with the disease, you need a psychologist, a nutritionist, a pelvic floor rehabilitator, then when you start to see all these things in common they are things that hospitals do not regularly have, this way it is possible that there is not so much diagnosis,” said the specialist in endometriosis.

However, he stressed that this is not a problem unique to Mexico, although it may come to be thought that way because it is a developing country. In countries such as the United States, England, Brazil, Spain and France, among others, it has rewarded the lack of timely diagnoses and specialized centers to treat the disease.

Just last January, Emmanuel Macron announced that in France financial resources will be freed up to carry out more research on endometriosis, a disease that would affect more than two and a half million women and which is one of the main causes of infertility.

For its part, John Hopkins University has pointed out that the disease affects more than two to 10% of American women of reproductive age. In addition, the US Office of Women's Health points out that there are five million people with endometriosis in the neighboring country.

Although the best-known statistic suggests that 1 in 10 women have endometriosis worldwide, Dr. Menocal Tavernier pointed out that these figures are not up to date, since these records date back 15 years and, to the extent that the disease has become more visible, it has been concluded that the incidence of the disease “is much larger than we thought.”

In the Morelia Women's Hospital alone, Armando Menocal treats 25 to 30 women weekly and, there, of the five days they perform operations, one is dedicated exclusively to patients with this disease. “We operate 10 patients a week and two have endometriosis, so that speaks to the number as important in a population as ours, more or less that is what we estimate, approximately 20% of women in Mexico have endometriosis.

In Mexico, on December 15, 2021, Senator Gloria Elizabeth Núñez Sánchez of the National Action Party (PAN) presented an initiative to add a fraction to Article 132 of the Federal Labor Law to allow women with endometriosis to work at home and with pay provided that they request it during their menstrual or premenstrual period with prior accreditation with medical diagnosis, despite the fact that detection takes seven years on average.

After her last surgery for endometriosis, Andrea spent two days in a coma. She says that “being so close to death is a very big shock” and that the episodes of depression she has had as a result of the disease have made her question whether it is worth continuing to live in pain.

“It is a very strong, but very genuine question that I have asked myself many times and the fact is that I am very grateful that I had the opportunity to have that support because without it I probably would not be here, mental health is definitely 100% linked to physical health and yes... I think this accompaniment of all the areas”, he said

Just last March 14, as part of World Endometriosis Day, Andrea and psychologist Fernanda Morales opened a psychological support group to meet, talk and work with more women who have been diagnosed with this disease and who seek to share their experiences with others who have lived in the flesh own part of the obstacles mentioned above.

“As soon as I was diagnosed, I dreamed it... I needed that, I needed a group in which we could talk and restrain ourselves and say: What do we do now?” , said Andrea.

Zayda Ávila is dedicated to embroidery and participated in the support group promoted by Andrea. In an interview, she noted that when she was diagnosed in 2021, she had never heard what the condition was about before, so she began to search the internet and thus met the community of Endowarriors Mexico, in it, she began to identify with the testimonies that they began to share in March of the year past.

“I was super full of heart because it's meeting people who have the same condition and who we can feel identified. Each one telling her experience because you are looking for him elsewhere and with other doctors. It's a very useful and beautiful community because we all know what we can be living or feeling,” said the 31-year-old.

At first, Zayda's examinations revealed the presence of a cyst, with the likelihood that it was carcinogenic, until she was finally diagnosed with endometriosis. However, he said that his life has changed “for the better” despite having a chronic illness. “It was a moment to stand up and say: Let's see, Zay, have you been happy so far? Have you done what you like? From there my life has started to change.”

Justhine Machorro, a special education teacher, is also part of the virtual community created by Andrea Saab and Andrea Martín del Campo. While he acknowledges that it is not easy to have a chronic condition that has no cure, he has learned to look at the disease and diagnosis from other perspectives.

“I have learned a lot about respect, empathy, support, affection for people you don't even know but who you know you would put your hands in the fire for them because we shared something. Reading each of the stories, listening to each one of the girls, all that teaches you to love and care for yourself, put yourself first in the circumstances and get to know people who live the same way as you do makes you not feel so alone in this because sometimes the same family doesn't understand it,” said Justhine, who was received the result of endmetriosis 11 years after symptoms.

Finally, Justhine concluded that she will continue to work from her trench to promote knowledge of the disease from school contexts, explaining to her students about how the menstrual cycle works and stop normalizing pain. “I would have given my whole life so that a teacher could explain to me well about the menstrual cycle so that I could get to know my body better,” she said.

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