About a hundred fellow sufferers came to ‘t Vossenhol by Bazoeka in Tiegem, about forty of whom had their portraits portrayed as part of the campaign that puts the spotlight on Endometriosis. This free photo shoot was organized by Vaidi Plovie. Her partner Vichtenaar Bram Defoirdt is the manager of ‘t Vossenhol. “It is a meeting day for endometriosis patients on which photographer Stijn Huyghe takes photos for an online campaign and a photo exhibition,” says Vaidi Plovie (34). “I myself have been fighting a challenging battle for twenty years and I want to make this chronic condition a subject of discussion with ‘Project Endo.Insideout’.”
Endometriosis affects one in ten women in Belgium. Although experts say that even that figure is still an underestimate. “I see two reasons why this disease is so unknown,” explains Vaidi Plovie. “First of all, talking about menstruation is still a taboo. Women all too often hear from other women that ‘pain is just part of the job’ and, on the other hand, the knowledge of primary care is often substandard. That, combined with a very diverse clinical picture, means that the diagnosis is often missed for years, which causes unnecessary suffering for the patient.”
Endometriosis awareness month
This year, patient Vaidi Plovie decided to effectively give the disease a face. Together with, among others, National Representative Nathalie Muylle, director and fellow sufferer Ellen Andries and the non-profit organization Behind Endo (stories), she wants extra attention for this often life-changing disease. “It is time, so many women are missing the right diagnosis and help. It’s simply appalling. I myself had to wait fifteen years for a correct diagnosis,” says Vaidi. “It is high time to sound the alarm. I am happy that I can do something for these people on this meeting day. They are grateful to me and I think it’s great that they dare to show their face and their story to the outside world. Together we are strong!”
Endometriosis is a chronic condition in which abnormal tissue somewhat similar to the lining of the uterus is found outside the uterus where it doesn’t belong. The glands secrete substances that irritate the surrounding tissues, sometimes causing the surrounding tissue to bleed. The immune system responds to the release of these substances by releasing inflammatory proteins that rush to the site of the disease, causing swelling and inflammation. This process creates very severe pain, adhesions and scar tissue. The endometriosis tissue can be hormone sensitive, so that the symptoms vary during the menstrual cycle. And this is where the taboo comes in, because it is about bleeding in women… In many cases, organs (uterus, bladder, intestines, ovaries) can be affected, with an important impact on urinary, intestinal and sexual functions. However, endometriosis tissue can also occur in places in the body outside the pelvis; such as on the diaphragm, in the lungs and very exceptionally even on the heart.
Testimonials
Several patients share their stories during a circle discussion with Federal Member of Parliament Nathalie Muylle (CD&V), who sits on the Public Health Committee, where a resolution is currently being worked out to offer these patients decent and affordable care through a care plan. From the testimonials time and again the seriousness of endometriosis is discussed and the impact of this condition. Both the enormous physical and mental impact, which can influence both private life (social and intimate relationships, the desire to have children, …) and the professional career, are discussed. All this with major consequences for the quality of life and labor productivity. “The severity of the medical suffering is very apparent, the interventions, the pain and what this does to the body and people in general,” said MP Muylle. “Extensive scientific research is needed and standards need to be drawn up. This will also include an inventory of what knowledge has already been collected in ‘guide countries’ such as France and a number of Scandinavian countries. Raising awareness is a second major aspect. People don’t know it as a concept and society doesn’t know it. Physicians and CLBs should pick up the first signals in order to arrive at an early diagnosis. This must also be implemented in training courses for healthcare providers such as physiotherapists, general practitioners, gynaecologists, paediatricians, urologists, abdominal surgery, intestinal complaints and abdominal complaints. A third important component is to reach a repayment agreement.”
Second meeting day
Due to the great success of the first meeting day, in which people from all sides of Flanders came to Tiegem, a second day will follow on Sunday 26 March 2023. You can register via [email protected] or via the link to the Facebookevent. Follow on Instagram and Facebook @Endo.Insideout.
