“I have put in place solutions to help me live better on a daily basis with my pain”, explained Monday, February 14 on franceinfo Cindy, volunteer at EndoFrance and herself suffering from endometriosis. The first interministerial steering committee devoted to this disease met on Monday to define the action plan, the Minister of Health, Olivier Véran, indicated two days ago after Emmanuel Macron’s announcement of the launch of a national strategy to combat this disease.
Cindy, diagnosed after 17 years of medical wandering, says the symptoms started with “her first period at the age of 10-11”. “It was immediately great pain, discomfort, loss of consciousness, visits to the emergency room”, she says. Then begins a medical wandering where the gynecologists tell him that his pain is normal.
“It was in my head, I had to grit my teeth because all the women were in pain and weren’t complaining.”
Cindy, with endometriosisat franceinfo
Cindy has seen several gynecologists to try to put words to her pain, “from my 19 to my 27 years, I had to see five to six different gynecologists who all gave me the same speech”. His medical wanderings come to an end when a gynecologist tells him about endometriosis: “I had an MRI at 27 which diagnosed me.”
The origin of endometriosis remains unknown for the moment, although discovered in 1860, but a French company invented a saliva test to diagnose the disease more quickly. In France, you have to wait an average of seven years before being diagnosed.
For Cindy, if this test is “promising”it is also necessary to think about the care of patients: “Diagnosis is one thing, but after that we need competent and trained doctors, with signposted care pathways.”
“It is the care that is important, hence the need for trained health professionals.”
Cindy, with endometriosisat franceinfo
Among the national strategy projects, there is the establishment of regional health centers to better deal with endometriosis, better train doctors in diagnosis and patient care.
If the diagnosis “was a real relief” for Cindy who was finally able to put a word on her pain, she also turned to alternative medicine: “I have put in place solutions to help me live better on a daily basis with my pain”. Indeed, endometriosis is not yet recognized as a long-term disease, which would allow better management of the expenses related to this disease: “There is poor management of all that is alternative medicine, but also of treatments. I have already had to take a treatment which cost me 60 euros per month, not reimbursed, so it is certain that financially it is quite substantial.”