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For personal trainer Vanessa de Oliveira Victório, what began as a symptom eventually dictated her entire life. At age 23, intense cramps and heavy menstrual bleeding forced her to stop all activities. Over time, recurrent abdominal pain, intestinal symptoms, fatigue, anemia, and vitamin B12 deficiency directly compromised her ability to work. “I had to stop everything because it hurt so much.”

The diagnosis, however, took 9 years. Victório navigated Brazil’s public and private healthcare systems, consulting different specialists who repeatedly told her nothing was wrong or that she just needed to stay on birth control. “You go to several doctors and they say: You don’t have anything.” In 2021, surgery revealed foci of endometriosis, adenomyosis, and pelvic adhesions. The doctors removed what they could. In 2022, a second procedure removed part of the right ovary. The pain, however, persisted.

Victório’s journey, and that of many other women, is beginning to be reevaluated in clinical practice. In March, the American College of Obstetricians and Gynecologists (ACOG) published new guidelines that replace previous documents from 2010 and 2018 and establish a new practice: Endometriosis can be clinically diagnosed based on symptoms and physical examination, without the need for surgical confirmation to begin treatment. By placing pain at the center of the decision, the document marks a paradigm shift.

Sergio Podgaec, MD, PhD, gynecologist at Hospital das Clínicas, University of São Paulo, São Paulo, Brazil, and president of the Brazilian Society of Endometriosis and Minimally Invasive Surgery, called the change “a fundamental advance.” For years, laparoscopy was considered the gold standard for diagnosis, contributing to significant treatment delays.

“Today, the diagnosis can and should be clinical, supported by a detailed history and, whenever possible, by high-quality imaging studies,” he said. In Brazil, however, this transition still faces barriers related to medical training and unequal access to specialized ultrasound with bowel preparation and MRI with an endometriosis-specific protocol.

Why Was the Pain Ignored for So Long?

The diagnostic delay in endometriosis is not coincidental. ACOG guidelines attribute this delay to multiple factors: variable symptoms, a broad differential diagnosis of abdominal-pelvic pain, the lack of a definitive noninvasive method, and the normalization of menstrual pain and dismissal of patients’ complaints by healthcare professionals.

This pattern begins early. “Girls learn that cramps are normal, that this is just how it is, and end up only seeking help when they can no longer bear it,” observed Omero Benedicto Poli-Netto, MD, PhD, gynecologist and associate professor at the Ribeirão Preto Medical School, University of São Paulo (FMRP-USP), and a clinical advisor in chronic pelvic pain at Hospital das Clínicas, FMRP-USP. In clinical practice, this process perpetuates itself. “Doctors are part of the same society. They often view it as an insignificant symptom, treat it with anti-inflammatory medication, and do not pursue further investigation,” he said.

The result is a silent cycle. Patients delay seeking help, and when they finally reach the healthcare system, they do not always find a qualified listener. Breaking this pattern requires a shift in the logic of care. “We should never accept this normalization. The patient does not deserve to suffer in silence.” But taking pain seriously, he warned, does not mean turning all pelvic pain into endometriosis. “There are women with severe cramps who do not have endometriosis, and they also need care. The mistake is to establish a care pathway that only accepts the patient when the lesion appears.”

When endometriosis is suspected: Consider the diagnosis when at least one of the following symptoms is present, whether cyclic or not:

• Chronic pelvic pain
• Dysmenorrhea
• Dyspareunia
• Dysuria
• Dyschezia
• Infertility associated with any of these symptoms
• Cyclic digestive symptoms: pain during bowel movements, constipation, bloating, and rectal bleeding

Note: A normal physical examination does not rule out the diagnosis.

A Heterogeneous Disease

Behind the diagnostic delay lies a deeper clinical challenge: Endometriosis is not a single entity. “The historical difficulty in adequately classifying the disease has contributed to the diagnostic delay because, for a long time, classifications were more useful for describing surgical findings than for guiding clinical reasoning, correlating symptoms, planning imaging, or defining therapeutic strategies,” said Maurício Simões Abrão, MD, PhD, associate professor of obstetrics and gynecology at the University of São Paulo Medical School and director of its Endometriosis Division.

The ACOG guidelines acknowledge this problem. The widely used system of the American Society for Reproductive Medicine does not consistently correlate with pain intensity or fertility outcomes, nor does it adequately account for deep disease. Other models exist, such as the Enzian classification and the Endometriosis Fertility Index, but none reliably integrates anatomical findings, symptoms, quality of life, and clinical outcomes.

This heterogeneity explains why so many patients remain undiagnosed for years. “The problem is not merely whether or not a lesion is visible but rather recognizing distinct phenotypes. When a physician expects a linear relationship between disease volume and symptom severity, they tend to dismiss patients with severe pain and unremarkable initial test results,” said Abrão.

The heterogeneity of endometriosis also appears when symptoms extend beyond the gynecological system. “For years, many women with digestive symptoms were treated as if they had irritable bowel syndrome, which contributed to delays in recognizing the disease,” said Marcelo Averbach, MD, PhD, gastrointestinal surgeon and researcher affiliated with Instituto Sírio-Libanês de Ensino e Pesquisa in São Paulo.

Symptoms such as painful bowel movements, constipation, abdominal distension, and rectal bleeding can have multiple causes, but the cyclical pattern should raise a red flag. “Cyclical pain is one of the main signs. That’s what sets it apart from other diseases,” he said. Intestinal endometriosis usually affects the rectum from the outside in and does not always reach the mucosa, which explains why bleeding is not the most common symptom.

Pain Beyond the Lesion

Endometriosis causes pain, but not all endometriosis pain comes from the lesions. This distinction is key to understanding why some patients continue to have pain even after lesion treatment and why a purely surgical approach may be insufficient.

The pain associated with endometriosis is not merely a peripheral signal originating in the pelvis. It involves inflammation around the lesions, the growth and sensitization of peripheral nerves, and remodeling of the central nervous system, which alters pain perception. “Many patients reach a diagnosis after years of symptoms, when sensitization mechanisms may already be established,” explained Poli-Netto. Chronic pain can become partially independent of the peripheral lesion: Physiological stimuli, such as bladder contraction or bleeding, can be perceived as intense pain by a sensitized nervous system.

Experimental data support this model. In studies from the international Translational Research in Pelvic Pain (TRiPP) project, more than 90% of women with chronic pelvic pain showed altered sensory processing, with increased sensitivity to pressure and touch. “This suggests a pattern consistent with central sensitization,” explained Lysia Demetriou, PhD, a postdoctoral research assistant in neuroimaging and pain data analysis at the Nuffield Department of Women’s and Reproductive Health, University of Oxford, Oxford, England. Some patients also show peripheral involvement, such as thermal hyperalgesia or sensory loss. “Pain does not follow a single pathway. Repeated stimulation of pelvic pain can ‘train’ the nervous system to amplify and sustain pain,” she said.

Neuroimaging studies identify changes in brain regions linked to pain processing, emotion, and neural modulation. Although there is still no validated imaging standard for individual diagnosis, these findings reinforce the biological plausibility of a symptom-centered model. Demetriou warned, however, of a risk: “We cannot create a new barrier where the patient needs expensive or inaccessible tests, such as neuroimaging, for her pain to be taken seriously. The pain reported by the patient is valid data.”

The impact extends to mental health. Shanika Chandra, PhD, clinical psychologist and senior research officer at eCentreClinic, Macquarie University, in Sydney, Australia, pointed out that the absence of a diagnosis has concrete psychological consequences. “When a patient has no explanation for her pain, she doubts her own body. This uncertainty, combined with invalidation by family, friends, or healthcare professionals, can lead to isolation, anxiety, low self-esteem, and worsening mental health.” For Chandra, validation has a therapeutic effect, allowing patients to understand their experience and make informed decisions about treatment.

How to Investigate and When to Refer

Valuing pain does not mean abandoning diagnostic technology. ACOG guidelines recommend transvaginal ultrasound as the initial imaging modality for evaluating clinically suspected endometriosis. When this exam is not appropriate, transabdominal ultrasound should be offered as an alternative. Pelvic MRI is suggested when deep disease needs better characterization for planning.

Poli-Netto warned of an important limitation: When ultrasound does not show lesions, especially in superficial disease, this should not rule out the diagnosis. Imaging better confirms ovarian and deep endometriosis, but superficial peritoneal endometriosis remains difficult to identify outside highly specialized centers.

As for laparoscopy, the procedure should no longer be the first diagnostic step for all patients. “It can confirm findings and allow treatment, but its ability to identify deep disease is limited without proper planning. Furthermore, endometriosis surgery requires specific skill. It must be aggressive enough to treat the disease, yet protective enough to avoid unnecessary damage,” said Poli-Netto.

Referral timing also changes. Patients with consistent clinical suspicion, refractory pain, associated infertility, or imaging signs of deep disease should be evaluated earlier by experienced teams. “The goal is not to operate on everyone early but to prevent them from reaching the specialist when there is already chronic localized pain, organ involvement, or significant loss of quality of life,” said Abrão.

When to refer to a specialist:

• Consistent clinical suspicion with pain refractory to initial treatment
• No improvement after 6 months of first-line hormone therapy
• Associated infertility
• Signs of deep disease on imaging
• Involvement of adjacent organs

How to Treat

There is no single standard treatment for endometriosis. The choice depends on clinical goals, the individual profile, and the patient’s preference, considering pain control, fertility preservation, and management of specific forms of the disease.

Medical treatment can be initiated empirically, without the need for prior surgical confirmation, in cases of progressive dysmenorrhea or dyspareunia unresponsive to common analgesics after 6 months. First-line hormonal treatment includes combined oral contraceptives, progestins such as desogestrel and medroxyprogesterone acetate, and the levonorgestrel-releasing intrauterine device.

In 2025, Brazil’s Ministry of Health expanded access to these treatments within the Unified Health System (SUS). “The recommendation is for close monitoring and continuous reassessment of the therapeutic response. When there is no improvement, the case should be reviewed, with imaging studies or referral to a specialist, to avoid both underdiagnosis and overdiagnosis,” said Podgaec.

When first-line treatment fails after 6 months of appropriate therapy, or when pain recurs, gonadotropin-releasing hormone analogs are the second-line option. Their use should be limited to 6 months due to the risk for bone loss. After this period, maintenance with oral contraceptives or progestins is recommended indefinitely or until pregnancy is desired.

Surgery remains important but should be reserved for specific situations: pain refractory to medical treatment, endometriomas larger than 4 cm or those that are growing, distortion of pelvic anatomy, signs of intestinal subocclusion, ureteral lesions with dilation, or infertility in specific contexts. Nevertheless, it should not be presented as a standalone solution for chronic pain. The recurrence rate of endometriosis reaches 20%-50% within 5 years, which justifies postoperative hormonal treatment to reduce this risk.

In some cases, pain persists even after lesion treatment, especially when nervous system processing is already altered. “This indicates that the pain may come to be maintained by the nervous system itself,” explained Demetriou. In these scenarios, care must expand beyond gynecology, incorporating pain management strategies, physical therapy, psychological support, and attention to sleep and fatigue.

Clinical Recommendation: A clinical diagnosis without surgery is sufficient to initiate treatment. Laparoscopy is not a requirement for starting first-line therapy. Reserve the procedure for cases with inconsistent findings, failure of empirical treatment, or surgical planning for deep disease.

The Hidden Cost

Endometriosis has a measurable impact on the healthcare system and on women’s productive lives. In Brazil, a study that analyzed hospitalizations in the SUS between 2015 and 2024 identified more than 110,000 endometriosis-related hospitalizations during that period, with the highest average cost per hospitalization in the 40-49 age group, at nearly R$ 940 per hospital episode. These figures capture only part of the problem. Before hospitalization, there are years of doctor visits, tests, hormonal treatments, and emergency room trips.

In private healthcare, a Brazilian real-world study showed that direct costs include doctor visits, diagnostic tests, and surgeries, and that surgery for deep endometriosis is 40% more expensive than surgery for the superficial form.

The workplace impact is significant. An international study showed that women with endometriosis may lose, on average, 10.8 hours of work per week, mainly due to reduced productivity during the workday. In Brazil, research indicates approximately 38% productivity decline among women with deep endometriosis, which is associated with pelvic pain and emotional distress. Other analyses, considering absenteeism and presenteeism together, point to losses that can exceed 60% in daily activities. While methodologies and populations differ, all point in the same direction: The disease significantly compromises work capacity.

For Victório, these numbers have a concrete impact. As a personal trainer, she depends directly on her body to work. “My quality of life started to get worse and worse, so I needed to turn this situation around because I needed to work.”

What Lies Ahead

Advances in understanding endometriosis are happening on multiple fronts. One of the clearest points in the ACOG guidelines is what is not yet ready for clinical practice: disease biomarkers. More than a thousand candidates have already been analyzed, including cytokines, metabolites, hormones, growth factors, and microRNAs, but none have shown sufficient association to replace or consistently add value to clinical evaluation and imaging tests.

Other fronts remain under development. AI is emerging as a promising area, with the potential to support diagnosis, test interpretation, and the development of predictive models based on symptoms, medical history, and imaging findings. Digital interventions in psychology are also being studied for pain management, especially in settings with limited care access.

More promising, according to Demetriou, is data integration. “The most useful approach is to combine symptoms, pain characteristics, quality of life, and sensory profiles, and in the future integrate digital biomarkers or neuroimaging.”

In the TRiPP project, patients with pelvic pain were divided into distinct subgroups based primarily on clinical data and patient reports. “This shows that labels like ‘endometriosis’ do not fully capture how pain works in each individual,” said Demetriou. The goal is stratified care, based on pathophysiological mechanisms, that identifies whether the pain is predominantly nociceptive, central, or mixed and adapts treatment to each profile.

In neuroscience, interest is growing in early changes in the central nervous system. Evidence suggests adolescents with menstrual cramps may already exhibit changes in how the brain processes pain.

At 36, Victório now has only half an ovary. Throughout this journey, she was told by doctors that she was too young for more radical procedures and that she was of reproductive age. A hysterectomy, they said, would be a last resort. This year, that resort has arrived: The surgery is scheduled for June 3, and with it, the onset of early menopause. “The possibility is scary, but it also represents a chance to get my life back.”

Victório’s journey shows what happens when pain endures years of disbelief, inconclusive tests, and inadequate treatments before being recognized. The updated guidelines do not rewrite Victório’s past, but they propose, for new patients, a different approach: The reported pain is sufficient to investigate, to treat, and to act.

This story was translated from Medscape’s Portuguese edition.