The month of March is Endometriosis Awareness Month. Attention is sought worldwide for the relatively unknown but common disease endometriosis. 200 million women worldwide suffer from it and the disease is also common in the Netherlands. The disease is in the taboo sphere, says doctor-researcher Esther van Barneveld, and she wants to break that. Six questions about endometriosis.
What is endometriosis?
"Endometriosis is a chronic disease. Tissue that resembles uterine mucosa comes with endometriosis outside the uterus. It is usually located on the peritoneum or the organs in the abdomen. Sometimes it also occurs in the vagina or in a scar of caesarean section . The tissue that grows there causes chronic inflammation and that causes various symptoms. "
What kind of complaints?
"That can range from no complaints at all to extreme abdominal pain, especially during menstruation. If endometriosis is on the intestinal wall, it can also cause intestinal problems. Or on the bladder, for example, bladder complaints. Some women have pain during intercourse. Women with endometriosis can reduced fertility. This may be due, among other things, to the growth and adhesion of fallopian tubes and ovaries. "
How often does it occur?
"Around one in ten women worldwide suffer from endometriosis. In the Netherlands it is estimated that there are 400,000 women. Endometriosis is just as common as diabetes and rheumatism. Yet you hardly ever hear anything about it. While the impact can be huge. The quality of life is often significantly lower for women with endometriosis than for women who do not have it. "
Why do we hear so little about it?
"Women often think that pain is part of their period. General practitioners and specialists also attribute the symptoms to 'normal' menstrual pain. Sometimes women are afraid of being perceived as an instigator and do not dare to express their symptoms. The diagnosis is therefore only on average after eight years, so it is important to break the taboo around endometriosis. "
Is there a treatment for it?
"The most effective treatment for endometriosis is hormonal therapy that suppresses menstruation, such as the contraceptive pill or a hormone coil. This means that women cannot get pregnant during this treatment. In addition, hormonal treatments often have side effects."
"Women who cannot or do not want to use hormones are often dependent on painkillers. A surgical operation in which endometriosis is removed is sometimes also possible, but the symptoms often do not disappear afterwards. Up to 75 percent of patients remain after a operation complaints. The reason for this is still unclear. Research is needed. "
What is happening in the field of research and awareness?
"All sorts of organizations, including the national Endometriosis Foundation, are committed to making endometriosis better known. Research is also being conducted; for example, we are working on the development of a patient app in the Endometriosis Expertise Center in Maastricht. later stage in disease monitoring and treatment evaluation. The app measures pain complaints in 'real time' and takes into account factors that may influence the pain complaints such as diet, sleep and stress. "
"We can apply the knowledge in the treatment. That leads to faster and better care that will also be more focused on the person and therefore becomes more personal. We can also use the app to test whether a new treatment is effective, whether yoga or other therapy for example, can offer a solution. "
Van Barneveld is a physician-researcher at the Endometriosis Expertise Center of the Maastricht UMC + and GROW School for Oncology and Developmental Biology.