By Danielle Castro, Folha de S.PAulo (Brazil)
Intense cramps, leg and lower back pain, extreme fatigue, gastrointestinal discomfort and even fainting are some of the symptoms that have plagued teacher Maria Eugênia Costa, 32, since her adolescence. After 10 years of suffering and the removal of an ovary, the resident of Ribeirão Preto, in southeast Brazil, was finally diagnosed with endometriosis, an incurable inflammatory disease where tissue similar to the endometrium (the lining of the uterus) develops outside the uterus.
“It was very difficult to reach a diagnosis. I went to several gynecologists and the emergency rooms of many hospitals; they told me that I had intestinal infection or pelvic infection or stress or a cyst,” recalls Costa. In 2017, after reaching adulthood, she finally found a specialized professional and was able to receive treatment.
According to the World Health Organization, one in 10 women worldwide have endometriosis; that is equivalent to 190 million people of reproductive age. This chronic condition can lead to depression, anxiety and infertility.
Lawyer Paula Moraes, 42, discovered that she had endometriosis in 2012, when she was trying to get pregnant. “I had had severe cramps and very heavy menstrual flow since adolescence. During that time, I masked the symptoms with the continuous use of birth control pills. I didn’t know it was endometriosis. When I stopped taking the birth control pills, the crises came back in full force,” she says.
In 2014, Moraes had an appendicitis attack. “When the biopsy came back, they identified endometriosis lesions in the appendix. During that surgery, the doctor also removed lesions from other organs. Today, I continue to receive treatment and live with the fear of needing another surgery at any moment.”
In the United Kingdom, a 2023 survey of 2,000 respondents by Endometriosis UK showed that 75 percent of women with endometriosis symptoms do not seek professional help, and more than a fifth worry that they won’t be taken seriously by doctors—indications that topics related to menstruation and menstrual health are still taboo. In an article published last year in the journal Nature, researchers from the United States and the United Kingdom emphasized the need for global health policies focused on this inflammatory disease that is “little-known” and “underdiagnosed,” despite its common occurrence.
Paula Andrea Salles Navarro, a professor in the Department of Gynecology and Obstetrics of the Faculty of Medicine of Ribeirão Preto at the University of São Paulo, is an expert in infertility and assisted reproduction. She says that investment in education and raising awareness about the problem are necessary. “Endometriosis is a very enigmatic disease because there are patients who are asymptomatic, and the spectrum of clinical manifestations can be quite varied,” she says.
In a scientific article she co-wrote in 2020, Navarro points out that despite the high prevalence in the female population, “the underlying mechanisms of infertility related to endometriosis are still not fully understood.” The problem involves everything from “anatomical changes that can impair the transport of gametes and embryos” to reduced endometrial receptivity and the presence of fluids that alter sperm function.
The professor explains that undiagnosed and untreated endometriosis—in addition to cyclically painful symptoms with each menstruation and difficulty getting pregnant—can also cause damage ranging from pain during sexual penetration (dyspareunia) to blood in the urine and feces, and even appendix involvement in cases of intestinal obstruction.
“The symptoms that may be associated with endometriosis are menstrual cramps, especially when they are intense and progressive and persist beyond the reproductive years,” says Navarro, who works at the Hospital das Clínicas in Ribeirão Preto and is also president of the Brazilian Society of Human Reproduction. Patients who are treated by the public health system are told to consult a gynecologist or family doctor if any of these symptoms are present. “[The doctor will] perform a clinical evaluation and a physical examination and will request initial tests; if surgical intervention is indicated, the patient will be referred to a specialized unit or service that offers treatment.” In cases that involve difficulty getting pregnant, the chances of receiving public care are lower, although they do exist.
According to the European Society of Human Reproduction and Embryology Guidelines on Endometriosis (2022), which provides a comprehensive review of the literature and more than a hundred recommendations, healthcare professionals need to be prepared to make a diagnosis and to address the problem in relation to issues of adolescence, menopause, pregnancy and fertility. Commenting on delays in diagnosis such as those experienced by Costa, Navarro says that there are indeed cases where the symptoms may be underestimated by healthcare professionals, but there is also a lack of availability in the network of high-quality imaging exams, which are essential for confirmation.
Dr. Navarro attributes the worsening of Costa’s condition to a mix of medical negligence, lack of knowledge about the disease in medical offices, little attention to symptoms and restricted access to specialists and specific exams for the disease. “In general, I think women’s pain has always been very normalized, and this greatly hinders diagnosis. First, because women believe that it is normal to feel pain—‘it’s a female thing,’ ‘menstruation always hurts.’ Then, we end up masking a lot of symptoms with prescription medications without thinking about how the disease continues to progress,” she says.
After a lot of physiotherapy and researching her problem, Costa says that she has overcome some triggers, including those that affect sexual relations, but that the disease still diminishes her quality of life. “Women with endometriosis end up missing out on a lot, and the treatment is very expensive because access within the public health system is very restricted,” she says. “I often miss work and social events, and I feel sick during trips. It’s unpredictable. Endometriosis has affected my friendships as well as my romantic relationships.”
