Chronic disorders

Endometriosis, an invisible and neglected disease

Endometriosis affects one in ten women and can increase the risk of infertility and ovarian cancer, but remains hard to diagnose. Photo: Shutterstock

Endometriosis affects one in ten women and can increase the risk of infertility and ovarian cancer, but remains hard to diagnose. Photo: Shutterstock

International Endometriosis Awareness day takes places on 30 March, shedding a light on a disorder that, despite affecting roughly one in ten women, remains difficult to navigate.

According to the World Health Organisation (WHO), around 10% of women in the world suffer from endometriosis. A chronic disease that causes moderate to severe pain during periods, sexual intercourse or even normal life, the condition has so far been difficult to diagnose. As its symptoms vary from patient to patient--heavy periods, headaches, nausea, infertility, fatigue, etc.--it is called by the “chameleon of gynaecology” in the medical field.

In Luxembourg, as in other countries around the world, awareness around the disorder has increased in recent years. Yet a proper diagnosis can still take years. So far, a cure has not been found, meaning that any treatment consists of pain management. For some, the pain caused by endometriosis can be debilitating to the point of hindering a normal social and professional life.

Several petitions have made obvious the need for better care and understanding of the condition in the public space. While a petition asking for the recognition of endometriosis as a long-term disabling disease failed to attain the minimum number of signatures, a second one--asking for monthly days off work in case of painful periods--led to talks of a national strategy on better treatment of dysmenorrhea.

Creating a dialogue

For international endometriosis day, Luxembourg’s CID Fraen a Gender--a resource centre for feminist causes--has organised two events on the topic in collaboration with the Luxembourg, Bettembourg and Dudelange communes.

The first, on 30 March, mainly targets those who suffer from endometriosis. “Mostly women, but also trans men and agender persons” who have been diagnosed are invited to the event, though, according to the organisation’s Isabelle Schmoetten, who manages the meeting, “it is much rarer and more difficult for trans men and agender persons to get a clear diagnosis.”

This event would allow them to talk about their experiences and exchange pain management methods, Schmoetten explains. “But it’s also about bringing awareness to the external world, because it’s still a disorder that is not known enough, which can lead to misunderstandings in familial and professional contexts.” Another conference, on 10 May, will give experts a platform to discuss the subject and bring more visibility in the medical environment.

A painful and long fight

On average, it takes 7.5 years to get an endometriosis diagnosis. The connection often isn’t made by medical professionals, and gynaecological pain is often brushed off as normal, as Schmoetten explains. “It’s not normal to be in pain all the time,” she adds.

For Anne B., the diagnosis took thirteen years. “My periods started when I was 14 and would last two weeks. I was always in a lot of pain,” she tells Delano. Her doctor prescribed her a contraceptive pill, which quelled the bleeding. The pain, however, would last for three weeks out of her four-week long menstrual cycle. Thankfully, her doctor took her pains seriously, but due to other chronic conditions didn’t make the connection. For a long time, Anne managed her symptoms with painkillers and the pill.

In 2021, however, her condition took a drastic turn. Brought to the ER for severe abdominal pain, Anne underwent emergency surgery, during which surgeons found endometrial cysts. The diagnostic was a blow to Anne’s life: “My world felt like it had fallen apart,” she says. “It created a lot of disorder in my private life. You have to accept the diagnostic, and think about how you want to move on with treatments, with your desire to have children.”

For 40-60% of women who cannot conceive naturally, endometriosis is a cause.

Though her colleagues are aware of her problem, not everyone in her environment is: “It’s a daily pain for me. It’s difficult for people to recognise it. After all, you still go to work, do things with friends…” She hopes that the state and society will do more, not just to recognise endometriosis and other invisible disabling conditions, but also to consider them in their choices.

Though Anne talks about the subject with some of her friends, some don’t even know what the ailment is. “It shows that more awareness is needed.” In the meantime, as no definite cure exists, Anne manages her chronic condition with painkillers, describing it as an “eternal cycle” of pain and pills.

To find out more about the condition or to join the events co-organised by the CID Fraen a Gender, you can click here.