“I felt like I was dying.” This is how Emilia Andonova describes the pain that plagued her abdomen. “It felt like a train was running over me.” What outsiders dismissed as “severe period pain” was actually endometriosis. However, it took a good ten years until Andonova received this diagnosis and thus certainty. Certainty that the pain wasn’t just “in the head” and that a lot of research and education still needs to be done.
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In fact, it takes an average of seven to twelve years for endometriosis to be diagnosed, as specialist Elisabeth Janschek, who heads the endometriosis center at the LKH Villach, explains. According to the state of Carinthia, the department of gynecology and obstetrics was recognized as a clinical-scientific endometriosis center 15 years ago. Since then there have been numerous awards and recertifications. But what is behind the disease?
Endometriosis is a chronic disease in which a mucous membrane, which is very similar to the mucous membrane of the uterine cavity, develops in various places in the body. Due to regular build-up and breakdown processes, as well as bleeding, adhesions occur again and again in the body. In some patients they go unnoticed for a long time, in others they cause severe pain. Endometriosis can also be the reason for an unfulfilled desire to have children. “The disease is often referred to as a chameleon because it has different appearances, characteristics and symptoms,” explains Janschek. That’s exactly why she isn’t always recognized.
Endometriosis: Regional support
It was Janschek who inspired Andonova to set up a self-help group in Carinthia. “It is incredibly important that people also receive appropriate regional support,” says the specialist. “To share experiences, but also because it is important to see that you are not the only one with this disease.”
As the founder of the “Endometriosis Association of Carinthia”, Andonova also knows many stories of suffering. She had a cyst discovered at the age of 27 and had to undergo surgery for the first time. “That was an absolute shock diagnosis. I was always sporty, ate healthy and never thought I would find myself in a situation like this,” says Andonova. Everything went well for a while, until suddenly three years ago the pain described above occurred and the growths had to be removed again. Andonova regularly exchanges ideas with around twenty other affected people in the Carinthia area – the youngest is 18, the oldest is in her late 40s. “The ‘frontrunner’ in our group has already been operated on twelve times.” Another affected person had to endure an eight-hour operation.
More than “severe period pain”
There are also dozens of calls from all over Austria, Germany and Switzerland. “Affected people contact us to look for advice or to share their story,” says Andonova, now 43 years old. Sometimes those affected just cry. From despair. They regularly hear sentences like “that’s just severe period pain” or “that’s because of stress” before the diagnosis.
Endometriosis cannot currently be cured, but it can be treated. In this context, there are different options depending on the severity of the disease; an operation is not always necessary, explains Janschek. Hormone therapy – for example in the form of the pill – is one option. “But of course the choice depends on whether the patient wants to have children or not.” Janschek is aware that the pill is controversial. When using it, you have to look closely: “On the one hand, the pill means a gain in quality of life for many endometriosis patients, but on the other hand, regular checks are required so that further development of the endometriosis is not overlooked.”
Endometriosis patients: No rehabilitation options
There are options for living a good life with endometriosis. However, there is still a lot of need for research. And: According to Janschek, there is currently no right to rehabilitation for endometriosis patients in Austria. “I’m glad that a lot has changed for the better since the 2000s. However, we are still far from where we should be,” says the office of State Health Councilor Beate Prettner. “Incidentally, this applies to many areas of gender medicine.” As a model region for this field, this is exactly what we want to change.
When asked about the lack of rehabilitation options, it was said: “As health officers, we can ‘only’ convey the urgency and necessity of such a facility to the PVA and the responsible Ministry of Health.” In Carinthia, endometriosis, like other women’s diseases, is increasingly being discussed in the focus on “women’s health“. about health promotion and prevention: “It is very important and essential to sensitize women, to encourage them to turn to experts with their problems and pain and not to make endometriosis taboo! Unfortunately, this is exactly what still happens often… those affected must not be left alone with their symptoms and their illness.”