Doctor palpating woman s abdomen, using hands and steady pressure. ER doctor palpating woman s abdomen, using hands and steady pressure. model released
Key figures:
- 24% of women with endometriosis are hospitalized for several days in 2022, compared to 4% of other women
- 25% of women with endometriosis were unable to work in 2022, compared to 13% of other women
The Mutualités Chrétiennes calculated how much the patients’ bill was, which had never been done in the past. This represents the cost on average 641 euros per year for a patient but this can go up to 4,700 euros for certain patients. Some patients can see more than 12 gynecologists as part of diagnostic and therapeutic journey. « We don’t realize what it’s like for a patient having to fight for a diagnosis or having to seek new medical advice when their symptoms are not heard. The problem of endometriosis is very expensive and very discriminatory. There is opioid consumption interpellante »pointe Elise Derroitte, vice-president of the Christian Mutuality.
Endometriosis affects approximately 10% of women of childbearing age, which represents approximately 200 million women worldwide. However, this disease profoundly affects the lives of women who suffer from it. Diagnostic times are often very long, which prolongs the suffering of patients. The disease can cause depression, anxiety, and other mental health disorders that impact these women’s education or professional lives. Endometriosis can lead to repeated surgeries, difficulty performing daily tasks, and even job loss. Patients bear significant healthcare costs, often not covered by financial protection mechanisms.
Between 4 and 12 years of suffering before diagnosis
Behind this picture hovers the belief that it is normal when you are a woman to suffer from your periods remains tenacious. As a result, the time between the onset of the disease, sometimes in adolescence, and its treatment remains several years. In Belgium, this period is 4 to 5 years on average. But it varies depending on the age of the patient: the symptoms appear in adolescence, the cause of her pain is detected later, on average 12 years after their appearance. Endometriosis is more often detected when it causes infertility problems given that pelvic pain is little taken into consideration both by patients, who have internalized this as being “normal”, and by the medical profession.
Endometriosis can indeed cause fertility problems, and many affected women resort to medically assisted procreation. The MC study shows that between 2017 and 2023, 19% of women with endometriosis in Belgium used PMA, compared to only 3% of women in the general population.Endometriosis is a complex disease whose exact causes are not fully understood. Some studies suggest that genetic factors may influence the development of endometriosis. Estrogen plays an important role in the development of endometriosis. Overall, although there are several theories on the origin of endometriosis, none has yet been definitively confirmed. In terms of treatment, there is currently no treatment that can permanently cure endometriosis. Treatments aim to reduce pain and improve fertility.
Inequalities of access socio-economic and racial
In the meantime, racialized women have more difficult access to care. Recognition of pain is particularly problematic for minority women “considered less reliable narrators than white women” (!) or because they have less easy access to health care. This reality has been highlighted in any case in the United States. Endometriosis is thus often perceived as a “disease of white, career-oriented women”, a historical construction assuming that the disease mainly affects women who have delayed having children. This is not the case.
“As for Belgium, we see in any case that socio-economically advantaged women ont more often access to care. We therefore have a problem of discrimination too,explains Elise Derroitte, vice-president of Mutualité Chrétienne. We realize to what extent women and men are not treated in the same way by medicine. We see this in the consumption of antidepressants, for example. If a man has complaints, we will give him painkillers, and a woman we will give her antidepressants. There is a projection of why there is a complaint. For endometriosis, as long as your stomach hurts, we don’t go deeper. And then, when you are in your thirties and you start to have fertility problems, we do more in-depth analyses. It’s true that that, for us, is really an issue. We see that this is a group that has more work incapacity, more use of other providers such as the psychologist, the dietitian, the gastroenterologist. »
Everything remains to be done, especially on the French-speaking side
The Belgian Federal Parliament adopted a resolution on endometriosis in April 2023, followed by similar proposals in the Flemish Parliament. But concretely, and even more so on the French-speaking side, almost everything remains to be done. The study by Mutualités Chrétiennes reveals that in our country there is no validated screening questionnaire commonly used by health professionals to ask women about their menstrual pain. The fact that health professionals are insufficiently trained on the subject also creates significant obstacles. Mutual societies plead for measures to be taken by creating specialized clinics which would allow multidisciplinary care and reimbursement of care which can be expensive and which falls on women. “It’s not a small problem. Raising everyone’s awareness would make it possible to better understand certain work incapacities in a suffering person, to offer better supervision and better coordination of the care that is necessary. Our study is the first to objectify patient journeyses, the cost of their illness and what they really consume as medicine”, concludes Elise Derroite.
