Endometriosis is not easy to diagnose and sometimes requires the expertise of several specialists such as a gynecologist, a sexologist, a general practitioner, a urologist or even an osteopath or physiotherapist. Indeed, the pain felt can be located in different places in the body, making this pathology the basis of a long series of impacts on quality of life and mental health. Very painful periods, chronic fatigue, digestive disorders, pain during sexual intercourse, abnormal bleeding, urinary disorders… Pierre Panel, gynecological surgeon at the Versailles Endometriosis Expert Center, details the impact of this disease on daily life patients.
Endometriosis: pain and treatment
Very painful periods, chronic fatigue, digestive problems, pain during sexual intercourse, abnormal bleeding, urinary problems: these are all “first symptoms” listed by a 2020 EndoFrance survey conducted with 1550 patients, their relatives and 1000 people outside the disease. Before being treated with the correct diagnosis, it is estimated that women see an average of 3.5 health professionals, and wait a year before consulting. Then it takes them 6 more years to receive the diagnosis. And this, while they suffer (again on average) 7.8 out of 10 on the pain scale.
The psychosocial and psycho-affective impact of endometriosis
Doctor Pierre Panel begins by discussing the psychosocial impact of this disease. The latter is deployed under different axes around the non-recognition of the disease. Whether by loved ones, by the doctors themselves, or even at work. The EndoFrance survey reveals that 4.3 women out of 10 believe that their professional life is affected. Getting up early in the morning, combining your intellectual and physical abilities to work, being motivated, managing your stress and your concentration… Endometriosis penetrates all the tissues of the professional field and greatly complicates it. Without always being understood by those around her, who minimizes pain to the simple fact of “having a stomach ache during your period”. The gynecologist emphasizes that “this comes with its corollary: patients end up thinking that they are “crazy”, having a feeling of guilt, and withdrawing into themselves”.
It also specifies that in the case where a woman reports symptoms very early, during adolescence, the impact on emotional development can be significant. “Adolescence is the time when we acquire a form of emotional and relational maturity. I notice with patients who have experienced withdrawal at this key moment in their lives that they arrive at adulthood with stunted psycho-emotional development, often very surrounded by their mothers.”
Endometriosis: what is the impact on mobility?
Endometriosis pain is not limited to painful periods, it is sometimes so powerful that it affects the ability to move. “Many women report pain that radiates into the back and legs. And this leads to a phenomenon of muscle contracture, with a back that locks up, legs that freeze, or in some legs that “give out”. Not being able to move around and live normally is one of the impacts of endometriosis. specifies the gynecologist.
The impact of this complex pathology on the intimate lives of women
Endometriosis changes the relationship to sexuality and can cause pain during sexual intercourse. 5.5 women out of 10 testify to this in the EndoFrance survey, which concludes that this impact is “strong” especially among women who suffer from profound damage. Pierre Panel specifies that in certain cases where the pain appears from the beginning of sexuality, “the brain then connects sexuality with pain rather than pleasure. Our primitive brain is very powerful in the pleasure/displeasure sense. If we experience sexuality with displeasure, we either don’t return to it, or the body protects us via a reflex phenomenon by contracting the muscles of the perineum the release of which is essential for sexual intercourse. The vagina does not lubricate, does not open, and micro tears can result, it’s a hellish cycle that is very complicated to unravel. he remarks.
On the other hand, if the patient experienced initially fulfilled sexuality, and then suffered pain due to her endometriosis, “it is easier to get back on the path to sexual pleasure when treatments are in place.”
Besides sexuality, the doctor notes thatwe often forget the digestive impact linked to endometriosis. “Women report very significant problems, such as anal urge, nausea, bloating,…” In the EndoFrance report, it is also patients with deep and digestive damage who are the most likely to have difficulty getting pregnant: 62%, and 46% of them used PMA. Besides, “more than one in two women affected by endometriosis say they have already had difficulty becoming pregnant”. Endometriosis even affects the life of a couple and parents.
The different treatments to improve the quality of life of patients
“We are moving towards more comprehensive management of these impacts. THE two essential points of this disease are fertility and quality of lifewe all agree on that,” notes the gynecologist who began his work on this subject in 2007.
“With my patients, we discuss the impact on their quality of life, the symptoms, their possible desire to become pregnant. This is what we base our therapeutic proposals on. I never say “we have to”, we do it based on the patient’s experience. Additional examinations are then carried out to determine the extent of endometriosis and the state of the ovarian reserve. And we are discussing a program that could extend over several years, with drug treatment combined with non-drug treatment initially. In Versailles, we developed day hospitalization for patients who suffer from it, with adapted programs. They can consult a psychologist, a sophrologist, a physiotherapist, practice yoga classes, receive advice on diet, see a specialist nurse, a pain doctor, an osteopath… As a second option, we offer also hormonal treatments, and as a third line it is possible to resort to surgery.”