Endometriosis awareness: screaming at the top of our voices

As much of our attention in the last weeks was drawn to the challenges of implementing successful Covid-19 vaccination strategies worldwide, it is worth pointing out that March has brought up another painful subject. Celebrated all around the world, The Endometriosis Awareness Month is a little different in 2021, due to the pandemics but still alive. Several virtual events, wellness challenges, conferences, and events have been planned to inform and raise awareness of women, their partners and families as well as healthcare professionals involved in their daily care.

We can never stress enough the importance of acknowledging this condition. It is estimated that 10% of women have endometriosis, and among those with infertility or pelvic pain, this proportion reaches as much as 50%. In fact, millions of women around the globe suffer with endometriosis, and often go undiagnosed for many years. Shockingly, delay of almost 10 years from the first complaints until the disease is identified is not rare. And as it is clinical suspicion that prompts the diagnosis workup and the establishment of timely efficacious treatment, it is of paramount importance that both women and healthcare professionals feel able to suspect and recognize endometriosis manifestations as early as possible.

Beyond causing pain and infertility, endometriosis compromises women’s quality of life to a much greater extent. As an estrogen related disease, it is mostly diagnosed in adolescence and adulthood, a time in life when important decisions are made. The symptoms of the disease may influence choices in a diversity of fields, provoking a lasting impac, that women are forced to live with, beyond the physical burden of symptomatic endometriosis. Recent approaches evaluating lifetime impacts of endometriosis revealed that women with this condition are more likely to experience negative effects in their educational course, being forced to miss classes and change some of their academic path choices because of pain. For the same reasons, their career is more likely to be jeopardized as women with endometriosis take more sick days, present decreased productivity and have slower career and salary growth (Missmer et al. 2021).

Pelvic pain can also have detrimental effect in social life as well as in mental health. Lack of support, sensation of not being in control of pain and continuos discomfort can lead to isolation, withdrawal from common activities and mood disorders. Almost half of the women with endometriosis may be depressed and anxious. Pain can also cause fatigue and sleep disturbances, that, in turn, affect even more one’s quality of life and the disposition to engage in ordinary social events and interpersonal relationships.

Sexual life impacts are obviously related to pelvic painful manifestations, whether they occur throughout the cycle, during menses or during intercourse. However, in the long run, infertility can add to these effects, as women may feel uncomfortable in their marital relationship and fear that their spouses may not understand or accept their condition. Thus, avoidance of intimal relations is routinely reported by patients with symptomatic endometriosis. Furthermore, the couple’s plans for constituting a family may be drastically changed, as individualized fertility counseling may anticipate or postpone pregnancy.

Even later in life, having endometriosis can affect women’s health and wellbeing, as choices of hormonal treatment for menopausal symptoms may differ or be denied, as physicians may fear it could stimulate remaining lesions and thus produce or exacerbate pain. In fact, recurrence of endometriosis and malignant transformation can occur in postmenopause, but the literature is rather assuring that these odds are quite slim. Even so, hormonal approach for menopausal symptoms may be a sensitive issue for women with endometriosis.

Being closely related to so many aspects of the feminine health throughout life, better information is key to improve women’s quality of life. A broad range of actions are needed to reach this goal, awareness being the first. It is also crucial to stimulate and maintain research, from basic biological aspects to clinical and surgical approach, to educate health professionals, to stimulate the creation of specialized multidisciplinary teams, to organize health services and patient support organizations, and to provide long-lasting optimized care.

Presently, countless women are left behind without a diagnosis, due to mythical beliefs that pain is normal in the menstrual cycle. Even among those who have been previously diagnosed, with lack of continuity and disarticulated health care, endometriosis may eventually go unnoticed and mistreated. It goes without saying that in addition to the adverse effects on women’s quality of life, endometriosis care costs millions of dollars in surgical procedures, medical treatments and work absenteeism. Thus it is urgent: women’s voices need to be heard! We must value and believe in what they say: endometriosis may be screaming out loud and we cannot go deaf!