"Endometriosis grows like cancer" says expert in the field

Even multiple surgeries offer no guarantee of improvement. The disease affects the entire body, influencing fertility, life planning, and participation in society.

Disclaimer: This article was first published in the Swiss newspaper Neue Zürcher Zeitung (NZZ). As a journalist, I pour my heart into every story I write, so it means a great deal to me to be able to share this one with you here on Substack as well.

Stories like this matter. (And I had to fight for this one, trust me). If sharing this article helps even one person recognize the symptoms sooner, or helps someone better understand what a loved one is going through, then it’s worth it.

Please keep reading. Chances are you know several women living with endometriosis, whether they have told you or not. It’s time we started talking about it.

When Miriam Birrer regains consciousness after surgery in October 2025, she is still groggy from the anesthesia. She lies there, staring at the ceiling, waiting for answers.

She is 44 years old.

“At that moment, I realized that something wasn’t right.”

Since the age of eleven, she had suffered from heavy menstrual bleeding and severe pain. At times she took the contraceptive pill, at other times she stopped. Night after night, despite taking painkillers, she curled up on the bathroom floor in agony. She had already undergone one operation, but the relief was only temporary.

The diagnosis: endometriosis.

For decades, research into the disease was neglected, and endometriosis received little political attention. It was not until early June 2026 that the Swiss Federal Council acknowledged in a report that the disease is often diagnosed too late and that both research and medical care require significant improvement.

Endometriosis is a chronic disease in which tissue similar to the lining of the uterus grows outside the uterus. It can cause scar tissue, nodules, and blood-filled cysts. A definitive diagnosis is usually made through surgery, during which the lesions,

the abnormal growths, are removed.

There is no cure for endometriosis. Symptoms may return even after several operations or persist permanently. At least one in ten women worldwide is affected, although the true number is likely much higher. For millions of women, the disease is lifelong.

For Miriam Birrer, the diagnosis came as a relief.

“At last, I had confirmation that my symptoms weren’t normal.”

---

When Pain Finally Has a Name

Miriam Birrer has deep infiltrating endometriosis, meaning the disease has spread into surrounding tissue and organs. She is also diagnosed with adenomyosis, a related condition in which similar tissue grows into the muscular wall of the uterus.

More surgeries follow, and eventually her uterus is removed. Miriam Birrer was never able to fulfill her wish of having children.

Today, she lives largely free of pain. Yet one question remains:

How might her life have turned out if she had received answers sooner?

“Maybe more could have been done if I had known ten years earlier.”

On average, patients wait around ten years before receiving a diagnosis, says Simone Kamm, head of the Endometriosis Center at Limmattal Hospital. The earlier the disease is detected, the greater the chances of controlling pain and preserving fertility.

For the past two years, a saliva test has been available for the early detection of endometriosis. However, Swiss health insurers do not cover the costs. Patients who pay privately face a bill of around 800 Swiss francs. According to Simone Kamm, a large validation study is currently underway, and the results so far are promising.

Endometriosis remains difficult to detect. Many lesions are so small that they are barely visible even on ultrasound scans. Cysts occur only in some patients, and adhesions are often difficult to identify through physical examination.

As a result, many women are told:

“We can’t see anything, so there can’t be anything wrong.”

---

More Than Just Menstrual Pain

“Endometriosis is a chameleon,” says expert Simone Kamm.

For some women, symptoms occur mainly during menstruation. Others experience pain continuously. The pain may radiate into the legs or lower back or occur during sexual intercourse, urination, or bowel movements. Fatigue and digestive problems are also common.

Dajana Mikulic also has endometriosis. Today, she works only 50 percent as a high school teacher. The 29-year-old has lived with severe pain since she was fifteen years old, yet she did not receive a diagnosis until last year.

“Until the very last moment, I hoped I was wrong—that I actually had a disease that could be cured,” she says.

Surgery brought only temporary relief. After just one month, her symptoms returned.

“The psychological consequences are immense. I practically no longer have a social life,” says Dajana Mikulic.

“Whether it’s a vacation or just an afternoon with friends, I constantly have to plan ahead: Where’s the nearest bathroom? How far is it home if the pain becomes unbearable? I’ve tried everything. Nothing has helped.”

---

When Pain Becomes Chronic

Often, even painkillers eventually stop working—especially once pain has become chronic.

“Pain is a warning signal generated by the brain,” Simone Kamm explains.

“If it persists over a long period, the nervous system changes the way it processes pain. The pain becomes amplified and chronic.”

For patients, this is the most difficult course the disease can take. Even after surgery has successfully removed the endometriosis lesions, the pain may remain.

For Simone Kamm, this demonstrates why endometriosis cannot be viewed in isolation.

“The disease affects every area of life—social relationships, work, education, sexuality, family planning, and mental health.”

The Endometriosis Center at Limmattal Hospital connects patients with specialists. Psychotherapy, physiotherapy, nutritional counseling, sex therapy, and specialized pain management are intended to ease the burden.

Yet Kamm emphasizes:

“What can be removed surgically is only a small part of the enormous spectrum that is endometriosis.”

Months after her most recent surgery, Miriam Birrer still experiences occasional pain. Three operations have significantly reduced her symptoms and, as she says, “given me back a huge part of my quality of life.” But the future course of her illness remains uncertain.

For Dajana Mikulic, the symptoms returned just one month after surgery.

---

The Goal: Only One Operation

Some women experience dramatic relief after surgery. Even in severe cases, the procedure can temporarily eliminate symptoms altogether.

That is the ideal outcome.

“The goal is one operation in a lifetime,” says Simone Kamm.

But reality is often different.

In cases of deep infiltrating endometriosis, additional surgeries become increasingly difficult. Scar tissue forms, making each subsequent operation more complex.

“You can’t keep removing lesions from the abdominal lining indefinitely,” says Kamm.

“It places a heavy burden on the body and offers little benefit.”

For this reason, hormone therapy has become the primary treatment strategy.

Endometriosis is driven by estrogen. Suppressing estrogen production can slow the progression of the disease. Hormonal medications aim to interrupt the menstrual cycle, prevent bleeding, and suppress the formation of new lesions as much as possible.

Such treatment reduces the risk of recurrence by around 60 percent. However, success is never guaranteed.

“Endometriosis isn’t cancer,” says Simone Kamm.

“But its pattern of growth is remarkably similar. It has no clear boundaries and can invade surrounding tissue.”

The likelihood of requiring another operation depends on many factors. After two years, the risk is approximately 15 to 20 percent. After seven years, about one in two patients will need another operation.

As long as the ovaries remain active, the disease can return.

Surgery is performed when symptoms become unbearable, infertility is an issue, or vital organs are threatened.

The Invisible Psychological Toll

The surgery performed for endometriosis is minimally invasive. Through a procedure known as laparoscopy, surgeons access the abdominal cavity through small incisions.

But even minimally invasive procedures leave scars—not only on the body, but also on the mind.

Dajana Mikulic says she needed time after the operation to come to terms with what had happened. Although the surgery itself was successful, recovering emotionally from the experience took much longer.

By then, many patients have already endured years of suffering.

Over the years, Dajana sought help from twelve different doctors. None diagnosed her condition. Again and again, her symptoms were dismissed or attributed to other causes, such as her body weight or a suspected case of polycystic ovary syndrome (PCOS).

She was never offered an MRI or more advanced diagnostic tests.

Only after insisting was she finally tested.

The result came back negative—a false negative, as later became clear.

On several occasions, doctors suggested that she seek psychological evaluation instead.

“At some point, I simply couldn’t bear being fobbed off with explanations anymore,” she says.

During the darkest periods, she lost her joy in life.

Today, she describes her journey with mixed emotions. She feels anger over the years of uncertainty and dismissal, yet she is also proud that she trusted herself.

“I diagnosed myself,” says Dajana Mikulic.

Miriam Birrer likewise describes the years before her diagnosis as deeply exhausting.

“No one voluntarily climbs onto an operating table,” she says. Yet she saw surgery as the final opportunity to break the endless cycle of pain and uncertainty.

---

What Remains Is Uncertainty

Endometriosis means pain.

It also means uncertainty.

Uncertainty about how the disease will progress, about fertility, and about whether it will return.

Its cause remains unknown. A cure is nowhere in sight.

When Dajana Mikulic first heard the diagnosis, she didn’t want to believe it. For too long she had hoped that her symptoms must be caused by something more easily treatable.

“I could accept the current unsatisfactory state of research if the disease were rare,” she says.

“But it isn’t.”

For far too long, menstrual pain has been trivialized, says Simone Kamm.

“Pain is never normal. Pain is not the body’s natural state.”

Research into endometriosis is currently expanding, but Kamm finds it frustrating that it still offers patients little hope for the future.

---

Still Misunderstood Politically

In 2023, the Swiss Federal Council was tasked with strengthening research into diseases affecting women.

Nevertheless, it recommended rejecting a parliamentary motion that specifically called for increased research into endometriosis. The proposal ultimately failed in the Council of States.

Instead, 11 million Swiss francs were allocated under the National Research Programme on Gender Medicine and Gender Research. The funding is intended for projects examining how sex- and gender-related factors can be better integrated into medical research. Endometriosis projects could potentially receive support through this programme.

Critics, however, consider this a well-intentioned misunderstanding.

They argue that endometriosis is not primarily a gender issue but a distinct disease that specifically affects women.

Former member of the Council of States Céline Vara voiced this criticism at the time.

While France has long recognized endometriosis as a national public health priority and Germany is discussing a structured national strategy, in Switzerland the disease remains, at best, a misunderstood issue on the margins of political debate.

Simone Kamm often accompanies patients for many years at Limmattal Hospital.

For that reason, she says, specialized endometriosis centers are essential—and more of them are needed.

She hopes society will begin to recognize endometriosis for what it is: a major public health issue.

“Listen, treat, and refer.”

Only in June 2026 did the Swiss Federal Council publish a report on the early detection of endometriosis. For the first time, it explicitly acknowledged the need for action, concluding that research, medical education, and the quality of care all need significant improvement.

However, the government stopped short of introducing new legislation. Instead, it referred to ongoing projects and issued recommendations to professional medical societies, research institutions, and health authorities.

Simone Kamm offers one final reflection:

“If endometriosis were a disease that primarily affected men, research would probably be much further ahead.”