Endometriosis is a disease characterized by the presence of endometrial tissue, the mucous membrane that normally covers the uterine cavity and which allows the embryo to nest outside the uterus.
The endometrial tissue can grow in areas such as the ovaries, fallopian tubes and peritoneum, until you get to hit the bowel and pelvic ligaments. This tissue, defined as an endometriotic lesion, flakes off monthly exactly like the ovarian endometrium, causing bleeding and chronic inflammation in the affected area.
Endometriosis, if not properly treated, is a chronic and worsening disease. According to the r-AFS (revised American Fertility Society) it can have four stages of severity ranging from a minimal level in stage I to severe disease in stage IV.
Manifestation and symptoms of endometriosis
According to data from the Ministry of Health, about 10-15% of women of childbearing age are affected by this pathology. Being affected by hormone levels, endometriosis is a disease typically associated with reproductive age . In most cases, it occurs between the ages of 25 and 35 accompanying the woman until the menopause.
Women suffering from endometriosis report symptoms such as
- Very intense premenstrual and menstrual pain
- Irregularity of the menstrual cycle
- Dyspareunia (pain during sexual intercourse) and other sexual dysfunctions
- Diffuse pelvic pain
- Pain when urinating and / or defecating
These symptoms often do not respond, or respond poorly, to common anti-inflammatory drugs. In most cases the pain is persistent and chronic and often worsens during the menstrual period. In 30-50% of cases, endometriosis causes subfertility or infertility.
Diagnosis and treatment of endometriosis
Early diagnosis is essential to reduce the risks of infertility and contain the psychological, social and relational consequences associated with the manifestations of endometriosis. However, some studies (Nnoaham, Kelechi E., et al., 2011) show that the latency between the onset of symptoms and an actual diagnosis of the disease is about seven years.
During this time it is estimated that, before identifying the appropriate specialist, women turn to seven different doctors on average. It is therefore evident that the diagnostic process for this pathology is long, complex and often expensive, both economically and psychologically.
It is also important to consider that there are a large number of women who, despite suffering from endometriosis, never receive a diagnosis. Often, in fact, the diagnostic process is activated only when there is a suspicion of infertility.
This situation is further aggravated by the fact that, at the present time, there is no definitive therapy for this condition. The most common interventions consist of the use of pain relieving drugs that can help in pain management but which do not act directly on the disease.
Other interventions include the use of drugs capable of inducing a temporary pharmacological menopause which, however, does not allow the onset of pregnancy. Or, in some cases, in the use of surgical therapy which involves the removal of endometriotic tissue. However, this procedure has wide margins of fallout.
The social costs of endometriosis
Work performance and social relations
Endometriosis negatively affects the social and work spheres. The pains can be so intense as to reduce both qualitatively and quantitatively the work and social performance .
A study conducted in 2011 (Nnoaham, Kelechi E., et al., 2011), for example, showed how, within the workplace, women with endometriosis suffer a quantifiable decrease in production in an average of eleven hours per week. . Four hours longer than women who do not have this pathology.
As well as the work sphere, the social sphere is also frequently compromised (Giuliani et al., 2016). In fact, many women report that their participation in social life is significantly reduced due to the pain associated with endometriosis (Gilmour et al., 2008)
The relational costs of endometriosis
Relationship of couple and sexuality
From a sexual and relational point of view , the frequent pain associated with intimate relationships has a significant impact both on the satisfaction of the couple and on the possibility of freely exploring their sexuality, deriving pleasure and gratification from it.
From various studies it emerges that Dyspareunia (pain during sexual intercourse) is present in 60-70% of women undergoing surgical treatment and in 50-90% of those who resort to hormonal therapy (Ferrero et al., 2005) .
Some authors (Fritzer et al., 2013), interviewing a sample of women suffering from endometriosis and dyspareunia, also found that 78% of the interviewees manifested discomfort associated with sexual intercourse . Many of these women reported a noticeable decline in sexual desire and a limitation, and sometimes interruption, of their sexual activity. Practically limiting it exclusively to reproductive purposes and to the satisfaction of the partner.
Finally, the study shows that this choice is not only experienced as a serious personal limitation, but also with considerable feelings of guilt towards the partner.
The Personal Costs of Endometriosis
Anxiety, depression and body image
On a personal level, the costs, in terms of physical and, often, emotional pain are high. In the absence of a diagnosis, women suffering from endometriosis often struggle to understand the reasons for their discomfort and many situations are neglected and underestimated for a long time.
Even after the diagnosis, endometriosis often remains a “taboo” disease , which women often struggle to talk about, being alone in their pain.
To this it is necessary to add all those cases in which, due to endometriosis, whether diagnosed or not, there is difficulty in establishing a desired pregnancy. These factors have a significant impact on the relationship with one’s own femininity and with one’s body and on the perception of one’s value.
Confirming the reduced quality of life of patients with endometriosis, several studies have confirmed the presence of a correlation between this disease and anxious and depressive symptoms .
Studies about it
In a study conducted in 2009 (Sepulcri et al., 2009), for example, researchers administered questionnaires to investigate the presence of anxiety and depression to a group of women with endometriosis. They identified the presence of depressive symptoms in 86.5% and anxiety symptoms in 87.5% of the patients who participated in the study.
Research has also shown that depressive symptoms increase with age and anxiety symptoms undergo increases during the most acute pain phases.
Some research has also pointed out that anxious and depressive symptoms may, in turn, be responsible for the increase in pain and symptoms associated with endometriosis.
It is therefore possible to hypothesize the presence of a one-to-one relationship between illness and mental health. The consequences of endometriosis seem to predispose women to the onset of anxiety and depressive symptoms. These symptoms, in turn, seem to increase the symptoms of the disease and the perceived pelvic pain.
Studies on the effectiveness of interventions
With reference to the therapy of these conditions, it has been shown by various studies how, by means of integrated organic and psychological interventions, it is possible to intervene on anxiety and depressive symptoms. This can significantly improve the quality of life of women with endometriosis.
In this regard, some studies (Zhao, 2012) have shown how the use of the progressive muscle relaxation technique can significantly reduce both anxiety and depression. It improves the overall quality of life of patients already after 12 weeks of treatment.
An interesting study (Melis et al., 2015) has shown that women with endometriosis show a significantly lower appreciation for their body than women who do not suffer from this pathology. They also report a significantly lower level of familiarity with their body and a general state of dissatisfaction with their image.
Need for multidisciplinary treatment of endometriosis
From what has been said so far, it is clear that endometriosis is characterized by a very complex clinical and medical picture. The physical, mental, social and relational implications of this disease can have a very serious impact on the quality of life, well-being and mental health of the women who suffer from it.
In this perspective, it is of primary importance to reduce the time between the onset of symptoms and the diagnosis of endometriosis . This with the aim of limiting, as far as possible, the negative effects of this pathology.
Furthermore, in order to increase access to care, it is also essential to provide all women who experience disabling menstrual pain or dyspareunia the possibility of accessing correct information that can speed up their healthcare management.
In fact, some studies hypothesize that the delay in diagnosis may be dependent on three main factors (Goffman, 1963; Seear, 2009):
- Normalization and underestimation of pathological menstrual pain by many doctors
- Inability, on the part of many women, to distinguish a “normal” menstrual pain from a pathological one
- Reluctance on the part of the female population to open up and talk about problems related to the menstrual cycle and intimacy, considering these factors as elements that put them at risk of discrimination and social stigmatization
The proposed intervention
Given the close link that emerges between endometriosis, quality of life, well-being and mental health, it is necessary to offer a multidisciplinary intervention. This can give credit to the complexity of this condition, intervening not only at the medical level, but also at the psychological and social level .
From an integrated perspective, it is essential that women with endometriosis or pelvic pain receive adequate support. That they can understand that their condition depends on a disabling organic disease and not on their ability to bear pain. That they live this condition no longer as a taboo.
They need to have access to short and long term psychological support paths . These with the aim of promoting the acceptance of the disease, to provide useful strategies for pain management and to promote compliance with drug therapy. In case of need, also to promptly intervene on anxious and depressive symptoms .
Finally, it is necessary to provide for the possibility of activating couple paths or therapies that can encourage a more positive sexuality and more satisfying intimate relationships.
