Around one in ten women is thought to suffer from endometriosis, a debilitating disease. The pathway to getting the necessary diagnosis and care adds salt to the wound, a recent study has found.
Endometriosis is a chronic condition characterised by hormone-sensitive tissue growing outside the uterus. The tissue causes a painful inflammatory reaction, and when endometriosis grows deeper, it can cause damage to tissues and organs. Some patients experience no symptoms, while others suffer from severe menstrual pain, including during intercourse and bowel movements. It can also make women infertile.
Around one in ten women aged 15 to 49 is thought to suffer from endometriosis in Belgium, however, this figure is likely an underestimate due to the difficulty in diagnosing the disease. A large-scale study by CM Health Fund for the first time examined what endometriosis care looks like from the patient's perspective, and the conclusions are not positive.
"We find that endometriosis patients have to search for a long time for the right healthcare providers and consult different types of healthcare providers," CM President Luc Van Gorp said.
'Normalised pain'
Patients with endometriosis on average only receive a diagnosis four or five years after their first symptoms. To get there, some (5%) see more than 12 different gynaecologists over three years. Patients also tend to visit multiple specialists, from anaesthetists and surgeons to gastroenterologists, physiotherapists and psychologists.
"Three-quarters of women with endometriosis visited one or more gynaecologists in 2022, for an average of four consultations," Van Gorp said. "This leads us to suspect that the diagnosis is not made quickly enough and that patients’ symptoms are taken seriously only after an exhausting wandering from one doctor to another."
Women are more easily diagnosed with the disease when they have fertility problems, while the symptom ‘pain’ is much less likely to lead to a diagnosis of endometriosis. "Fertility issues are seen socially as a 'problem' that needs to be addressed. Menstrual pain in women is not, as it has become normalised."
Addictive remedies
Meanwhile, patients' health condition deteriorates, they have to rely more on care and bear significant costs themselves. The cost covered by the patients themselves averages €641 a year – compared to €267 per year for other women – and in the worst case (for the 5% who are hospitalised or unable to work), the cost even reaches €4,700. Financial protection mechanisms are lacking, meaning women in precarious socio-economic situations have less access to endometriosis care.
This group is underrepresented in the CM sample: women with endometriosis who seek care tend to be slightly older, belong to the active population and have a stable partner. "But this is not because endometriosis is more common among these women. It does show that those with social and financial difficulties experience more barriers to receiving care."
Because there is currently no treatment to permanently cure the disease, higher drug use is recorded among women with endometriosis. One in three (34%) used opioids, an addictive form of pain medication, a figure almost 2.5 times more than the use among other women, spurring concerns among health professionals.
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To improve the care pathway, the CM recommends better training for healthcare providers (doctors, nurses, midwives) to recognise endometriosis symptoms, as well as better collaboration with psychologists to treat the mental impact. Finally, it also advocates multi-disciplinary endometriosis clinics to reduce women's long search for solutions.
"Endometriosis is not a disease that can be cured by one type of doctor but requires cooperation between a large group of healthcare professionals," Van Gorp concluded. Earlier this year, outgoing Federal Health Minister Frank Vandenbroucke (Vooruit) confirmed that a working group is being established to improve endometriosis care.
