“It started when I was eleven, at the same time as my period. The pain was so intense that it made me feel nauseous and sometimes faint. As a result, I was unable to go to school for about two days per month. Ultimately, I kept switching courses and ended up from ASO to BSO. The pill – a mild version – reduced the complaints for a while, but in college the pain became too much again. I didn’t get my diploma.”
It took sixteen years, including countless examinations by specialists and even conversations with a psychologist, before Dana De Decker (38) from Boom knew that the pain was not between the ears, but in her abdomen: endometriosis.
De Decker, who is a member of the non-profit organization Behind Endo (Stories), is not alone. Studies show that at least 1 to 10 percent of all women have endometriosis. The disease involves hormone-sensitive tissue, similar to the uterine lining, appearing in various places in the body. This can cause inflammation, adhesions, severe pain and damage to organs. The pain is usually, but not always, associated with the childbearing years. The cause or an ultimate cure for endometriosis has not yet been found. Pain relief, hormone therapy or ultimately surgery are mainly used as treatment.
Banalized
In recent years the disease has become more prominent on the agenda. It led to a request for the Knowledge Center for Healthcare (KCE) to investigate how healthcare in our country can be improved.
In their report presented today, the researchers conclude that women experience many obstacles and do not feel taken seriously. They recommend a two-stage rocket. Primary care providers should refer people with suspected endometriosis to government-recognized, multidisciplinary clinics. There the diagnosis can be made and simple operations can be performed. Every hospital network must have such an accredited clinic.
For patients with complex, so-called ‘deep-infiltrating’ endometriosis, there must be highly specialized reference centers where specialized operations can be performed and where doctors are trained. This approach should be evaluated after three to five years.
The researchers also note that every hospital in our country is currently allowed to perform endometriosis procedures, which means that in some places only a handful of procedures take place per year. The KCE draws a parallel with cancer surgery, where more patients per hospital results in better care, especially if a multidisciplinary team guides the patient. There must also be a reimbursement rate from the Riziv specifically for the disease. Even that is not there yet.
Minister of Health Frank Vandenbroucke (Vooruit) is interested in the recommendations. Next month he wants an action plan from a working group that must submit concrete proposals by the end of this year. Although the effective introduction of the system can only take place after the elections, if money is made available for it.
Self-proclaimed specialists
Kristine De Schamphelaere of patient platform Endobetter calls the report an important step. She does hope that the quality criteria of these centers will be sufficiently robust and that general practitioners and gynecologists will pay enough attention to the symptoms. “Now, in case of severe menstrual pain, the pill is quickly prescribed to reduce complaints, often without mentioning endometriosis. This may help some, but it has not been proven to stop the condition. In the meantime, the disease can progress and penetrate deeper into tissues, ultimately worsening symptoms and making treatment more difficult.”
Dana De Decker is also satisfied. “This is a good first step. I have also experienced how self-proclaimed endometriosis specialists do not perform the best operations. I will soon go under the knife again, after which the pain will hopefully decrease and I can think about my desire to have children again. I hope that the link between symptoms and the disease will now be made much faster. The waiting time for a first consultation with a specialist is now six months. While the sooner you tackle the disease, the better the results.”
