“Everything is wrong”: The harsh reality of living with endometriosis

Eirini, Andriani, and Kleio are three women in their mid-20s who, over the past three years, found themselves in different gynecologists’ offices receiving the same diagnosis: they had Endometriosis.

Until then, only one of the three had even heard the term, and none of them knew what it actually meant in practice. They would soon find out.

Endometriosis is a chronic inflammatory condition that primarily affects people with a uterus, in which tissue similar to the lining of the uterus (endometrium) grows outside the uterus, usually on other organs in the abdominal cavity.

It has been known for more than 150 years and affects around 190 million women (WHO, 2023)—and even “up to 30% of women to some extent,” according to Dr. Manolis Kalampokas, an obstetrician-gynecologist specializing in gynecological oncology.

And yet, it appears to have been studied less than male baldness.

What they did know for certain was that it involved symptoms that degraded their quality of life to a “frightening degree,” as described by Dr. Kalampokas. These included unbearable pain (during menstruation but also at other points in the cycle, as well as during sexual intercourse), complications affecting the bowel and bladder, fatigue, anxiety/depression, and infertility.

“From the first time I got my period, when I was 11, I had such extreme pain that I was terrified,” says Eirini Agourzenidou, 26, from Thessaloniki. “I would vomit, faint, I couldn’t go to school.”

As she grew older, the physical symptoms worsened: “I counted the days I felt okay, and it came out to just one week per month.” The psychological toll grew as well. “It limits you in so many ways that it eventually affects you mentally too. I couldn’t go to training, I couldn’t go out. It became standard for me to call my friends at the last minute and say: ‘I feel awful, I’m not coming.’”

People around her—at school, in her family, among friends, and later at work—understood that something serious was happening. However, as Kleio Tampaki, 28, from Athens, explains, the symptoms of Endometriosis are so intense that they leave no room for doubt. “If you saw me, you would understand I wasn’t exaggerating.”

Even so, she describes negative reactions from colleagues at work. “But I didn’t fully understand the extent of the problem myself, so I couldn’t explain it properly,” she says. “All I knew was that I was in extreme pain.”

“A woman may end up blaming herself, even punishing herself,” explains Dr. Kalampokas. “She may wonder, ‘Why am I in pain? I shouldn’t be in pain,’ without even knowing that a condition like this could exist.”

Despite the fact that up to 1 in 3 women may experience it to some degree, the diagnosis of Endometriosis is delayed by an average of 4–12 years, according to research, while the typical age of diagnosis is “around 25–35,” according to Dr. Kalampokas.

A key reason is the internalized minimization of pain, driven by the belief that “all women have pain during their period.” “I was downplaying what was happening to me because I thought it was within the bounds of ‘normal,’” says Andriani Papandreou, 29, who lives in Athens. “If I hadn’t done that, I might have gone to a doctor at least five months earlier.”

Andriani eventually sought medical help after an episode in the middle of her cycle that lasted nearly two hours. “Out of nowhere, I was hit with intense pain, like I was on my period,” she describes. “I was doubled over. I couldn’t even walk down the stairs to go to the bathroom. That’s when I realized it wasn’t normal.”

In all three cases, endometriosis was detected through imaging, via ultrasound. In Eirini and Andriani, an endometrioma—a cyst filled with old blood that forms when endometrial tissue grows inside the ovary—was identified.

In Kleio’s case, a lesion was found on the ovary, indicating that the disease was at an advanced stage, where endometrial tissue can cause adhesions, making organs “stick” to each other. “If I had delayed it any longer, I would have needed a total hysterectomy [removal of the reproductive organs and early menopause],” she says.

“The diagnosis of endometriosis can also be based on the clinical picture,” explains Dr. Kalampokas—that is, on symptoms such as severe menstrual pain, pain during intercourse, and infertility. “However, definitive confirmation requires a biopsy, meaning tissue removal via laparoscopy [a minimally invasive surgical procedure] and histological examination.”

Andriani, Kleio, and Eirini were referred for surgery, during which endometriosis lesions are “cleared” and sent for biopsy. In some cases, endometrial tissue had spread as far as the bladder and the bowel, while, as Dr. Kalampokas notes, “there are cases where endometriosis has been found in the lung or even in the nostril.”

They speak about the lengthy recovery period, which lasts around a month, as well as the heavy financial burden of undergoing the procedure in the private sector—although it can also be performed in public hospitals. At the same time, they describe the sense of relief after a long period of changing doctors until they finally found “their doctor,” a process that in itself weighs heavily on the quality of life of women with Endometriosis.

Kleio refers to inadequate and often confusing information, as well as the dismissal of the condition itself. “I went to a female doctor with my test results, expecting she would be more understanding, and she told me, ‘Come on now, suddenly all of you have endometriosis.’”

Another common issue is that, because the disease affects fertility, women feel that doctors prioritize their reproductive capacity—often through pressure to freeze their eggs—over their overall health.

“I reached a point where I told a doctor, ‘I’m not a cow,’” says Eirini. “Reproduction is not my primary function. I am a human being, and first and foremost I want to be healthy.”

Even so, thousands of women with endometriosis under the age of 30 are faced with the decision of whether to freeze their eggs—that is, whether they want to preserve the possibility of trying to have a child in the future. “Because no one guarantees you’ll succeed,” says Andriani. “It’s all so emotionally draining—it’s all wrong.”

However, surgery is not a cure, as there is still no definitive treatment for the disease. “There is a recurrence risk of around 30% if postoperative hormonal treatment with contraceptives is not given,” says Dr. Kalampokas, noting that these must be taken continuously, provided there are no contraindications.

Even when there are no absolute contraindications (e.g. a history of thrombosis), some women may still experience adverse effects. “My anxiety and depression episodes went through the roof, to the point where I went to my doctor in tears and said, ‘I can’t do this,’” says Andriani.

The question that remains unanswered throughout this entire report—among gynecologists, but above all in the minds of the millions of women who suffer daily from Endometriosis—is: what causes it?

Identifying the cause is essential for finding a cure—two processes that require resources and research that have historically not been allocated to women’s health. “This whole experience confirms the neglect of women’s health and the broader feeling that you are deeply disposable,” says Kleio.

Indicatively, in 2024, the U.S. National Institutes of Health—the world’s largest public biomedical research organization—allocated just $28 million to endometriosis research, approximately 0.067% of its total budget. This amounts to roughly $4.30 per patient annually.

At the same time, Crohn’s disease (a chronic inflammatory bowel disease), which affects around 690,000 people in the United States, received $90 million—about $130 per patient—highlighting the severe underfunding of endometriosis (not, of course, the overfunding of other diseases).

“While we still don’t understand the cause of endometriosis, studies are being funded on how a partner’s chronic illness affects men’s sexual activity,” Eirini points out.

And endometriosis is not an exception in research on diseases that affect women. In nearly 75% of cases where a disease primarily affects one sex, funding “favors” men, according to a 2021 study. This pattern is also reflected in cancer research: gynecological cancers—ovarian, cervical, and uterine—rank only 10th, 12th, and 14th in funding relative to their severity, while prostate cancer ranks first.

“If more cases of endometriosis appear in men—there have been a few dozen recorded since the 1970s—maybe then we’ll have some hope of learning what’s happening to us,” Kleio concludes.