"SO FAR AWAY" How Doctors Can Contribute to Making Endometriosis Hell on Earth. A Call for Humanistic Medicine and Empathetic Practice for Genuine Person-Centered Care. A Narrative Review.

"SO FAR AWAY" * How Doctors Can Contribute to Making Endometriosis Hell on Earth [* by Knopfler M. In Dire Straits. Brothers in Arms. Vertigo Records, U.K., 1985]. Abstract: The distance physicians may create within the relationship with their patients by not having a humanistic approach to their practice may strongly influence clinical outcomes. The purpose of this paper is to convey the well-known narrative of patient dissatisfaction into pro-action by discussing the aspects of dehumanization, which may occur in the relationship between physicians and women with endometriosis. Eight dimensions of dehumanization are examined and related to everyday scenarios occurring in endometriosis care settings and the possible downstream consequences on patients' clinical outcomes are described. Objectification, which may come across as minimization of pain, may not only increase patients' perception of pain but also lead to undertreatment of unrecognized forms of endometriosis, especially among adolescents. Passivity, that is not favoring shared decision-making nor self-management, may compromise adherence to treatment, reducing patients' trust in physicians and quality of life. The same consequences may result from homogenization, that is giving for granted that all patients have the same access to care. Both isolation, ie not practicing therapeutic empathy, and loss of meaning, ie not supporting patients in the re-definition of their life plans, may affect women's psychological wellbeing and further increase pain perception. Ignoring women's personal journey by not providing clear information on the consequences endometriosis may have on their lives may favor women's self-silencing. Not promoting an un-biased communication and not setting aside scientific polarization are the main features of dislocation, which may jeopardize patient empowerment. Lastly, having a reductionist approach to the body may contribute to chronicization of pain, thus compromising quality of life. This considered, taking time to listen to women with endometriosis and tailoring decisions on the basis of their individual needs should be fostered as a moral duty. Physicians should always keep in mind that they are not only deliverers of treatment; they are a form of treatment themselves.

Quality of intimate relationships, dyadic coping, and psychological health in women with endometriosis: Results from an online survey.

OBJECTIVE: To explore the associations between intimate relationships, psychological health, and endometriosis-related variables such as pelvic pain and infertility. METHODS: In this cross-sectional study, data were collected with an online survey delivered through Qualtrics and posted on the Facebook page and website of a patient association (Associazione Progetto Endometriosi-APE) in August 2020. The survey was composed of a researcher-made questionnaire and four validated questionnaires assessing relational satisfaction (adapted Quality of Marriage Index), dyadic coping (Dyadic Coping Questionnaire), and psychological health (Hospital Anxiety and Depression Scale and Rosenberg Self-Esteem Scale). RESULTS: Participants were 316 women (age: 35.9 ± 6.7) with endometriosis, who reported being in an intimate relationship from at least one year. A greater perceived negative impact of the disease on past and current intimate relationships was associated with poorer psychological health, lower relational satisfaction and worse dyadic coping. Women who perceived their partner as more informed about endometriosis, more informed about and interested in their health conditions, and more likely to accompany them to the medical appointments, showed greater relational satisfaction and dyadic coping. Relational satisfaction and dyadic coping were associated with psychological health. A greater perceived negative impact of endometriosis on intimate relationships was associated with more severe pelvic pain (especially dyspareunia). CONCLUSION: Endometriosis has a negative impact on intimate relationships, which is associated with poorer psychological health. For the women with the disease, partner's support is important, and our findings suggest that effort should be made to involve both members of the couple in multidisciplinary treatment.

A stepped-care approach to symptomatic endometriosis management: a participatory research initiative.

OBJECTIVE: To assess the proportion of patients with symptomatic endometriosis satisfied with their medical treatment 12 months after enrollment in a stepped-care management protocol. DESIGN: Prospective, single-arm, self-controlled study. SETTING: Academic department. PATIENT(S): A cohort of 157 consecutive patients referred or self-referred to our center for symptomatic endometriosis. INTERVENTIONS(S): Systematic detailed information process on medical and surgical treatment followed by a shared decision to start a stepped-care protocol including three subsequent medical therapy steps (oral contraception [OC]; 2.5 mg/d norethindrone acetate [NETA]; 2 mg/d dienogest [DNG]) and a fourth surgical step. Stepping up was triggered by drug inefficacy/intolerance. MAIN OUTCOME MEASURE(S): Satisfaction with treatment was assessed according to a five-category scale (very satisfied, satisfied, neither satisfied nor dissatisfied, dissatisfied, very dissatisfied). Variations were measured in pain symptoms with the use of a 0-10-point numeric rating scale (NRS), in quality of life with the use of the Short Form 12 questionnaire (SF-12), and in sexual functioning with the use of the Female Sexual Function Index (FSFI). RESULT(S): At the end of the 12-month study period, 106 women were still using OC, 23 were using NETA, three were using DNG, and four had undergone surgery. Twenty-one participants (13%) dropped out from the study. In intention-to-treat analysis, excluding five drop-outs for pregnancy desire, the overall satisfaction rate with the stepped-care protocol was 62% (95/152; 95% CI 55%-70%). By 12-month follow-up, significant improvements were observed in all pain symptom scores and in SF-12 physical and mental component summary scores, whereas FSFI scores did not vary substantially. CONCLUSION(S): Most women with endometriosis-associated pelvic pain who chose a stepped-care approach were satisfied with OC and a low-cost progestin for the treatment of their symptoms. The need to step up to an expensive progestin or surgery was marginal.