When pain stops being invisible

For years, endometriosis has existed within an uncomfortable space in society: between what is felt and what is not named. It is a recurring pain that rarely finds clear support. In that gap, many women have learned to inhabit their bodies through pain.

But the conversation has begun to expand, and spaces like Endometriosis México become points of connection. Founded in 2010 by patients who chose to transform their experience into action, the organization emerged from an urgent need: to make visible what had long been lived in silence. A community built from experience that, by naming what was once silenced, begins to make it visible.

• TTT: For years, endometriosis has been invisible. How significant is the problem globally today?

Endometriosis México (EM): It is far more widespread than most people think. It is estimated that 1 in 10 women of reproductive age lives with endometriosis. Yet it remains an invisible condition. Many women spend years with symptoms and misdiagnoses, while the pain continues to be normalized. Its impact is not only physical: it affects mental health, professional life, relationships and overall quality of life for millions of women.

• TTT: Why does endometriosis continue to be such an underdiagnosed condition?

EM: There are three main reasons. First, the historical normalization of menstrual pain, which has led many women to believe that suffering is simply part of being a woman. Second, the lack of specialized medical training, which results in misdiagnoses such as gastritis, colitis or anxiety. And third, the absence of clear diagnostic pathways in many healthcare systems, especially in the public sector.

• TTT: What impact does this condition have beyond the physical aspect of women’s lives?

EM: Its impact goes far beyond the body. Endometriosis affects mental health, work stability, interpersonal relationships and overall quality of life. Chronic pain, uncertainty and lack of validation create a deep emotional toll that is often experienced in silence.

Within the body, within the system

It is no secret: endometriosis has historically been misinterpreted by the medical system. The lack of clinical understanding not only limits diagnosis, it delays it, confuses it and, in many cases, invalidates it.

Understanding the condition requires looking in multiple directions. Yes, toward what happens within the body, but also toward how that process is interpreted from the outside. Because it is in that intersection where diagnosis is often lost, pain is normalized and time without answers is prolonged.

• TTT: What exactly is endometriosis and what happens inside the body?

Dr. Eduardo Luna Ramírez (Dr.): It is a chronic, systemic condition with a high recurrence rate, characterized by the presence of tissue similar to the endometrium outside the uterus. This tissue can be found in the ovaries, fallopian tubes and intestines, and in less common cases, in more distant organs. It responds to hormonal changes during the menstrual cycle, becomes inflamed and forms adhesions that cause organs to stick together, resulting in intense pain and dysfunction.

• TTT: Why is it often confused with other diagnoses?

Dr.: Due to a lack of awareness. The symptoms of endometriosis often overlap with gastrointestinal disorders such as irritable bowel syndrome, which can mislead initial diagnoses and delay proper treatment.

• TTT: What are the consequences of a delayed diagnosis?

Dr.: The average diagnostic delay ranges from 7 to 10 years. During that time, the condition can progress: adhesions become denser, pain can become chronic due to nervous system sensitization and there is an increased risk of damage to ovarian reserve or organs such as the intestines or ureters.

Listening to the body as the first diagnosis

For all women, the body always speaks. It is not intuition, it is evidence. The problem is that it is not always believed. Endometriosis pain has been so normalized that it becomes background noise, something endured in silence before being understood.

But paying attention requires more than recognizing pain: it means learning how to read it. Understanding when it is a signal, when it is no longer tolerable and, above all, when it is time to seek answers.

• TTT: If a woman suspects she might have endometriosis, where should she begin?

EM: The first step is to listen to her body and not normalize disabling pain. Symptoms such as severe cramps, pain during intercourse, gastrointestinal issues, constant fatigue or heavy periods should prompt consultation with a specialist in endometriosis. It is also important to seek reliable information, consider second opinions and remember something essential: pain that disrupts your life is not normal.

• TTT: How can someone distinguish between “normal” menstrual pain and a warning sign?

Dr.: Pain is considered pathological when it prevents daily activities, does not respond to common painkillers or worsens over time. Other warning signs include pain during intercourse, pain when urinating or having a bowel movement and chronic pelvic pain.

• TTT: What are the most common symptoms and those that are rarely mentioned?

Dr.: Common symptoms include severe pelvic pain, heavy periods, chronic fatigue and infertility. Less discussed symptoms include extreme abdominal bloating (endobelly), lower back or leg pain, urinary symptoms without infection, intestinal changes during menstruation and even more complex manifestations such as blood in urine or stool.

Fertility, mental health and what is left unsaid

Unfortunately, endometriosis does not end with diagnosis. It extends into quieter territories, where pain is no longer only physical and begins to affect other dimensions of life: fertility, mental health and the relationship with one’s own body.

Living with constant pain also means inhabiting uncertainty, questioning the future and holding emotions that do not always find space within the conversation.

• TTT: Does endometriosis always affect fertility?

Dr.: Not always. It is estimated that between 30% and 50% of women with endometriosis may experience difficulty conceiving. This means that at least half are able to achieve pregnancy, although the process may be more complex depending on the stage of the condition.

• TTT: Is it possible to conceive naturally?

Dr.: Yes, especially in early stages. However, factors such as cysts or adhesions can make it more difficult. In some cases, after appropriate surgery, the chances of natural pregnancy increase; in others, assisted reproductive techniques may be necessary.

• TTT: How does this condition impact mental health?

Dr.: The impact is significant. Patients show higher rates of anxiety and depression. Chronic pain, uncertainty around fertility and lack of understanding create isolation, affecting professional life, relationships and self-esteem.

Where change begins

Talking about endometriosis also means addressing what is still missing. Not only in terms of treatment, but in how female pain has been understood and addressed.

Because change does not only lie within the medical system, but in how we have learned to interpret pain. In stopping the normalization of it as part of the female experience. No, menstruation is not supposed to hurt. Pain that incapacitates is not part of the body, it is a signal. And speaking about it, more and more, is the starting point.

• TTT: What treatments are currently available?

Dr.: The approach is multidisciplinary. It includes hormonal treatments to slow disease progression, excision surgery as the gold standard in specific cases, and comprehensive care involving pelvic floor physiotherapy, nutrition, pain management and psychological support.

• TTT: What myths would you like to debunk?

Dr.: Several. One is that pregnancy cures endometriosis, which is false—it may pause symptoms but does not eliminate the condition. Another is that hysterectomy is a definitive solution, when lesions can persist outside the uterus. And finally, that surgery is always the best option, when in many cases comprehensive treatment is more appropriate.

• TTT: If you could change one thing about how society and medicine understand endometriosis, what would it be?

Dr.: The validation of pain. If the medical system stopped normalizing female suffering and implemented early detection protocols, years of delayed diagnosis and unnecessary interventions could be reduced.

EPILOGUE

For years, endometriosis was interpreted before it was understood. Pain was justified, normalized and became part of everyday life. But today, it can no longer go unnoticed: the body should not hurt.

Naming it without taboo is the beginning. Understanding it, the next step. Addressing it properly is, however, what matters most.

Let’s say it out loud: endometriosis is a condition that demands to be heard and, above all, taken seriously.