Invisible struggle – Why does endometriosis remain hidden?

Imagine a disease that causes pain month after month, yet often remains invisible—even to doctors. A disease that makes daily life miserable for hundreds of thousands of women and about which few still speak openly. This is endometriosis.

In Hungary, more than 200,000 women live with it—meaning one in ten women of reproductive age is affected. Symptoms often mislead us for years. After all, if we hear over and over that "menstruation is painful, that's completely normal," or that "I must have a low pain threshold," then after a while, we start to believe it ourselves. In reality, the diagnosis takes an average of 7–9 years to be reached worldwide. Until then, there remains uncertainty, pain, and the doubt that seeps into everyday life. This is a chronic, quality-of-life-diminishing disease that can be associated with infertility in one-third of women.

It is no coincidence that when world-famous model Barbara Palvin shared publicly that she is also affected by endometriosis, it caused a massive echo. Barbara spoke about how she had struggled with painful periods all her life, long believing it was "normal," but it later turned out that endometriosis was the cause, which ultimately required surgery. Her confession is important precisely because it drew attention to the fact that millions of women worldwide live with similar struggles—an estimated 190 million people. And the more people speak about it openly, the less this disease remains invisible.

But what is behind it?

The story is much more complex than simply talking about "tissues growing in the wrong place." Endometriosis is now clearly considered an inflammatory condition, which is also closely related to hormonal imbalances. In particular, the differential activity of estrogen and progesterone receptors is what sustains inflammation, intensifies symptoms, and complicates treatment. Therefore, the body does not just "notice" that tissue similar to the uterine lining is in the wrong place, but actively reacts to it—and it is this reaction that leads to pain, adhesions, and symptoms that make everyday life impossible.

Biological processes are also significant. A portion of menstrual blood—as a completely natural phenomenon—can travel back into the abdominal cavity, where endometrial cells can take root and then slowly begin to grow. However, this is only one piece of the puzzle. Our genes also play a role: if a mother was affected, the chance of the disease developing in her daughter increases significantly.

And along with all this are environmental and lifestyle factors. Stress, irregular diet, a sedentary lifestyle, and chemicals that affect the endocrine system—such as hormone-disrupting ingredients found in certain plastics and cosmetics—can all exacerbate symptoms. While they do not cause endometriosis on their own, they can contribute to the body being more sensitive to inflammatory processes and the disease manifesting in a more active form.

Overall, therefore, a multi-actor, delicately intertwined process emerges. Disturbances in hormonal regulation, genetic involvement, the backflow of menstrual blood, environmental influences, and small elements of lifestyle together lead to the uterine lining tissue present outside the uterus not only taking root but also causing symptoms. And by the time all this comes together into a recognizable picture, many years often pass.

Endometriosis is an invisible struggle—the more we talk about it, the more women recognize the signs in time and dare to ask for help, the closer we get to ensuring this disease truly does not remain hidden.