Endometriosis: Pain is not normal

The time gap between early symptoms (pain) and the correct diagnosis is seven to twelve years, on average. Then comes infertility, or even cancer. At this Symposium find out more about state of the art treatment of this disease.

António Setubal, director of the symposium 17th Course in Gynecological Endoscopy, gynaecologist and obstetrician at Hospital da Luz, endometriosis is a disease that most specialists are not very familiar with and is approached incorrectly, both at national and international level. “Countries like Belgium, the Netherlands and Finland do not have dedicated centres for the management of endometriosis. In the USA, only some states have them; in Germany demand is referred to Austria, while Italy has two centres”, the doctor underscores.

Endometriosis is a disease that can be treated only through surgery, and in surgery laparoscopy and robotic surgery are the two best choices. “Even considering 'only' laparoscopic and robotic surgery, it is the intervention that poses the highest level of difficulties to the surgeon”, says António Setúbal, and he explains:

“Endometriosis poses a very big challenge for the surgeon, as he must treat a woman patient, often young, while trying to avoid the colostomy bag. Which is why only a few surgeons are trained to perform this kind of surgery that may involve other organs like the bowel, bladder, ovaries, diaphragm, rectum, lung”.

To feel pain is not normal

Pain is the symptom of endometriosis, which is regarded culturally as something ‘normal’ in a woman, caused by the menstrual cycles and is, therefore, widely disregarded, says António Setúbal. “To feel pain during the menstrual cycle is not normal, as this means loss of quality of life”, he adds. Menstrual pain, pain during intercourse, evacuation, or, less frequently, urination may be symptoms of endometriosis.

As time passes, and by wrongly assuming that the pain is 'normal', the disease extends to the other organs and finally causes fertility problems in women. Often, it is at this stage that patients meet the doctor who diagnoses them with endometriosis or, if previously diagnosed, they have already undergone several surgeries. “Obviously, at this stage, it is hard to find someone willing to treat the disease”, says the doctor.

According to António Setúbal, in Portugal, over 10% of women in the reproductive age suffer from endometriosis, a very high figure. “Increasingly young women, 18 to 20 years, come to us with severe forms of endometriosis, and sometimes, also complex and severe relapse”.

António Setúbal highlights further the studies that concluded that the average time between the first symptoms and diagnosis of endometriosis ranges from seven to twelve years, depending on the country; what is significant is the number of gynaecologists that these women had seen on average during that period in search for a response: seven! In the USA, the number of hospitalised women with endometriosis is higher than the number of women hospitalised for breast cancer.

Pregnancy does not prevent endometriosis

At Hospital da Luz, this gynaecologist highlights, diagnostic laparoscopies are not performed. “The hospital has a very diversified national team. Note that at Hospital da Luz, when we decide to do laparoscopy it is surgery. Patients are first observed and we have developed complementary MRI protocols, which will provide us with a very clear idea of what we will be discussing with the patient about what she may expect from surgery”.

António Setúbal also mentions the correlations between endometriosis and cancer, highlighting that this disease can be deadly, as when endometriosis punctures the intestine and causes peritonitis, emergency surgery may be necessary. In other words it is life-threatening.

Another cliché about endometriosis – that pregnancy protects women from the disease – is refuted by this physician, as he will demonstrate in a scientific paper which he will be publishing in an international publication, based on his experience at Hospital da Luz.

As for the causes of endometriosis, several of the existing theories will be discussed during the symposium beginning today at the Leaping Forward congress. In Auditorium 2, some of the top theorists of endometriosis in the World, professors Jacques Donnez and Philippe Koninckx, will be addressing on the one hand a theory based on cancer - similar to that of genetic disorder-, which at a certain point in life is ‘triggered’, focusing on the factor or factors which trigger the disorder. The other theory is that of a coelomic metaplasia, according to which there is predisposition to the disease during embryonic development. Plenty to look forward to!


Special Report, Leaping Forward - Lisbon International Clinical Congress, Hospital da Luz, Lisbon, February 13-19.