Tens of thousands of women in Belgium are believed to be suffering from endometriosis, but fragmented care and lack of data on the disease means many go for years without getting a diagnosis, often in pain.
Endometriosis is a disease in which tissue resembling endometrium grows outside the uterus. While some women have the condition without experiencing symptoms, for others it can severely impact their daily life. Many suffer from severe menstrual pain, pain in the pelvis, painful intercourse, pain during bowel movements and/or urination, fatigue and sometimes even depression and anxiety. It can also result in reduced fertility.
In a recent report, the Federal Expertise Centre for Health (KCE) said that, while the condition occurs mainly in women of childbearing age (because the oestrogen hormone is a major cause of the disease), it is unclear exactly how many women in Belgium suffer from it. However, at least one in ten women are thought to have the disease.
Years without diagnosis
The long period of uncertainty is due to the difficulty in diagnosing the disease. Patient testimonies show that it often takes six to ten years to get a correct diagnosis.
Currently, endometriosis cannot be cured, and steps can only be taken to reduce the pain. Surgery is possible to remove the lesions but for some, these treatments bring no relief, and they can involve various risks and side effects.
Moreover, endometriosis care in Belgium is very fragmented, and there are significant discrepancies between hospitals in approach and expertise, making patients' battle with endometriosis even more challenging. However, the country is now taking steps to turn the tide.
Specialise expertise centres
The KCE advocated the creation of recognised endometriosis clinics and specialised centres of expertise, where patients can receive multidisciplinary care tailored to the type, severity and impact of symptoms. Currently, 30 of the 77 hospitals that completed the questionnaire indicated that they have set up such a clinic, but there is no accreditation attached to this.
It also called for more attention to the condition when doctors are being trained, as many patients feel there is insufficient knowledge and empathy among many practitioners.
In response, Federal Health Minister Frank Vandenbroucke (Vooruit) confirmed on Thursday that a working group is being established to improve endometriosis care. "We must increase our expertise within the country to ensure quality care for patients with endometriosis," he said.
The steps include setting up multidisciplinary endometriosis clinics in each hospital network, which patients should be referred to by their GP or gynaecologist. Here, multidisciplinary consultation will be provided between a gynaecologist and a pain specialist, among others. Centres will have to meet certain criteria to be recognised.
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Specialised reference centres will pool care for deep endometriosis (the most serious cases). In these cases, work would be done in teams of gynaecologists, abdominal surgeons and urologists.
Finally, the working group will also examine measures that can be taken to measure the quality of care provided and the appropriate reimbursement for endometriosis surgeries will also be established, as this is currently lacking. Vandenbroucke has asked for a plan of action to be given by mid-May, followed by concrete improvement proposals by the end of this year.
