Since her first period, at the age of 10, Alisson Soum had pains. A suffering that increased throughout his adolescence until, at the age of 19, he was told that he was endometriosis. “I didn’t know what it was. They made me do ultrasounds and the next day they took out a 9 cm cyst”, recalls this Toulouse woman, who is now 29 years old. Since then, she has undergone nine operations, at the level of the ovaries, the rectum but also the tubes.
A long fight that she leads against this disease sometimes invisible to the eyes of others. “For some it is still a disease in the head. It generates a lot of absenteeism, I have lost several jobs because of it and in the life of a couple it is a disease that weighs heavily, ”testifies the young woman who dreams of waking up one day without this sword of Damocles. above her head For some time now she has been followed by a multidisciplinary team from the Toulouse University Hospital.
Compatible from A to Z
An innovative care pathway that enables patients to benefit from comprehensive care as part of a so-called “Fast-Track” pathway. “We are trying to make the patient journey more seamless. You will have easier access to treatment from a specialist gastroenterologist if you have digestive problems, an expert radiologist, a urologist, a psychologist and even thoracic surgery if necessary. C’est une prize en charge adapted et individualisée from A to Z. Tout passe par une infirmière que va coordonner et facilité l’accès aux rendez-vous», explains Elodie Chantalat, chirurgienne gynécologue specialisée dans cette pathologie qui touche 10% des femmes in France.
Among them, 75% have chronic pain that disables them until menopause, sometimes even beyond. Of these affected women, 40% will have difficulty having children.
From the first appointment at the CHU, examinations will be carried out that will guide the best possible care for the patient, whether surgical or medication. “Our goal is to preserve fertility at all costs because not all patients are infertile. We must explore everything before surgery and go beyond this single solution to eliminate the disease. Global support is the best way. The first appointment is an important listening time, sometimes it will guide us towards the location of the symptoms”, continues Yann Tanguy Le Gac, another obstetric surgeon who is part of this multidisciplinary team.
Consideration of the opinions of patients.
For more complex cases, a multidisciplinary consultation meeting is held every month. Its members study an average of sixty cases there, always with the same objective of improving the quality of life of patients and doing everything possible to shorten treatment times. Because it happens that the injuries are there, but the suffering is less. “We are not dealing with images but with symptoms over time,” insists Yann Tanguy Le Gac. This approach has made it possible to observe a reduction in postoperative complications, but also a well-being of the women followed up.
Patients who have a voice in decision making. Because a hormonal drug will have an impact on libido, mood or even weight. Alisson lived it all. “It is an unpredictable disease, there are treatments that provide relief even if there is no cure. When you have a crisis you have to accept the pain and work on it, I use my breathing, I do yoga and meditation”, explains the young woman who advises not to be alone in the face of the disease.
Create a network for better diagnosis
And who fights for better care from general practitioners. She took nine years to be diagnosed, until then her family doctor treated her with painkillers. In coordination with the other centers specialized in endometriosis, the actors of the “Fast Track” course of the University Hospital of Toulouse are working on the creation of a network to create a territorial network.
“When a woman says that her shoulder hurts during her period, we think she is crazy. There is usually a misdiagnosis due to ignorance of the disease. To shorten treatment times, we want to create a network, information brochures, so that general practitioners know who to contact”, suggests Dr. Elodie Chantalat, who hopes that this project will bear fruit soon, in collaboration with the medical profession but also very active patient associations. A project that could be one of the responses to the national strategy mentioned in January by Emmanuel Macron that made endometriosis a public health problem.