Endometriosis is a condition in which cell tissue grows outside the uterus, affecting other organs such as the bladder or intestines, and in rare cases even the lungs. Its symptoms are varied and unpredictable. Most commonly it manifests as severe pain linked to menstruation, though it can also occur at other times. General practitioner Dr Claire Krause, who wrote her doctoral thesis on endometriosis in general medicine, emphasises that the family doctor should remain the first point of contact for patients, even with a condition as complex as this one.
Krause explains that treatment is varied and highly individual. According to her, hormonal therapy is typically the first option suggested, though it does not work for every patient. Anti-inflammatory pain relief may also be recommended, and in some cases surgery is necessary depending on which organs are affected and how far the condition has progressed. Even then, she continues, outcomes differ widely: some patients require only one procedure and remain symptom-free for years, while others see the condition return almost immediately.
Isabelle Schmoetten, director of CID Women and Gender, was diagnosed with endometriosis in 2018 at the age of 26, but her difficulties had begun much earlier. At 14, she was hospitalised after experiencing menstrual bleeding that lasted two weeks. Despite significant pain throughout her teenage years, she assumed it was normal, until a seven-centimetre cyst was discovered on her left ovary years later. Even then, the diagnosis was not immediate. She recalls being told it could be endometriosis, marking the first time she had ever heard of the condition.
The diagnosis prompted her to research the condition more deeply, with her findings startling her. When the cyst showed no signs of disappearing, surgery followed, during which her entire ovary had to be removed alongside treatment for endometriosis found elsewhere in her abdomen.
She was not warned beforehand about the hormonal consequences of the procedure, and experienced mood swings and depression in the aftermath as her hormone balance was thrown into disarray. She also found herself unsure of where to turn within the hospital system, at one point asking nurses whether the pain she was experiencing was truly as severe as it felt.
Prejudice surrounding the disease remains a real issue, she notes. While she has not personally encountered it, she knows women who have been questioned at work about whether their pain is genuine.
Recognising that far more needs to be done, the Ministry of Health has planned a Women’s Health Week for the first week of June, with one day dedicated specifically to endometriosis. Health Minister Martine Deprez explained that the week will feature testimonies from those affected, as well as podcasts and wide-ranging informational content. The Scientific Council has also been commissioned to draw up recommendations on care pathways, so that both patients and practitioners have a clear framework for identifying and managing the condition.
Beyond awareness-raising, the Ministry is also looking to strengthen diagnosis and treatment within Luxembourg itself, as many women currently have to seek care abroad. Deprez acknowledged that while gynaecologists are generally expected to have encountered endometriosis during their training, feedback from the field suggests this is not always the case. The response, she said, will be to build a multidisciplinary network bringing together not only doctors but also psychologists, therapists and pain specialists, complementing existing pain management structures to ensure patients receive the care they need.
