“I was ten thousand leagues from imagining that I had endometriosis”, recognizes Marie, a small brunette with blue eyes. Since her first period, the 30-year-old has never felt any pain. Neither during her period, nor during her sexual intercourse. Mary barely feels a slight stretch on the first day of her period. Like all women, she thought. So when a month ago, her gynecologist diagnosed her with an endometriotic ovarian cyst, she fell down. “For me, women with endometriosis have extremely painful periods, not being able to get out of bed. »
Among the 10% of women who suffer from endometriosis, a chronic inflammatory gynecological disease, Marie is one of the 1 to 7% who do not feel pain. But the seriousness of their pathology is not zero for all that. “The pain is absolutely not proportional to the severity of the lesions,” recalls Yasmine Candau, president of EndoFrance. Some women may writhe in pain every time they have their period and only have anatomically superficial endometriosis, while others will not feel any pain despite having more and deeper lesions which may invade other organs.
Poorly innervated affected areas
“The nerves are responsible for the pain of endometriosis”, explains Erick Petit, radiologist, founder of the endometriosis center of the Paris Saint-Joseph hospital group, president of the Résendo hospital city network. These nerves, caught in the inflammation, become irritated. “Even though there are a lot of nerves in the pelvis, the lower part of the belly, certain forms develop in areas little innervated”, adds Julien Niro, obstetrician-gynecologist at the Hartmann Ambroise Paré hospital group, in Neuilly-sur-Seine.
“We can have superficial lesions close to a nerve which will hurt much more than deep lesions”, develops Camille Tallet, midwife and osteopath. Especially since the notion of pain is very personal. “It depends on our socio-cultural and family environment,” adds the midwife. If we were told that it was normal to have pain during your period, we are not necessarily going to listen and report your pain. »
Consequence: the diagnosis of endometriosis of these asymptomatic women often falls “by chance”. “They can be diagnosed at the time of an intervention for anything else, such as appendicitis, for example, explains the president of EndoFrance. Or during a fertility check-up, after several years of trying to get a baby”.
Digestive disorders
But for Erick Petit, the women who do not feel pain necessarily have another symptom: functional intestinal disorders. The famous irritable bowel syndrome, with alternating diarrhea and constipation, numerous gases and abdominal swelling, called “endobelly” in the Anglo-Saxon world. “We can diagnose endometriosis thanks to these digestive symptoms, which appear especially during periods of menstruation”, specifies Camille Tallet.
In addition, some women have no pain or lesions, but only an endometriotic ovarian cyst, that is to say a hematoma of 3 to 4 centimeters in the ovary. A very rare case, around 1%, according to Erick Petit, also a member of the steering committee of the national strategy against endometriosis. This is the case of Mary. “As the ovary is not innervated, they have no pain. The diagnosis can then fall late, when the cyst grows, going beyond 10 centimeters, or even cracks by hyperpressure. “In this case, they will feel severe pain and often end up in the emergency room. »
A check-up ultrasound once a year
However, doctors do not advise carrying out massive screening for endometriosis, like what is done for breast cancer. “We are not going to look for a disease if nothing makes us think of it, judges Julien Niro, especially since serious asymptomatic forms remain rare. However, the professional advises regular gynecological follow-up. During this appointment, after an interrogation, a clinical examination and, often, an ultrasound, the diagnosis may fall. “An endovaginal ultrasound performed by expert radiologists”, specifies Erick Petit, because it makes it possible to “perceive subtle lesions”, not necessarily visible on MRI.
If endometriosis cannot be cured in the current state of research, it can be slowed down by the use of a progestogen pill. “Women with an asymptomatic superficial form can simply perform an annual follow-up ultrasound and possibly adjust their treatment,” advises Julien Niro. But in the case of an ovarian form, even asymptomatic, he recommends that patients have their eggs removed, because this form is more at risk of causing infertility. After long hesitation, Marie decided to take the pill for the first time in her life.