Surgical and/ or conservative treatment improves quality of life (EHP-30) in patients with endometriosis.

AIM: To investigate the quality of life of women with endometriosis before treatment and 3 months after the start of surgical and/or conservative treatment. SAMPLE AND METHODOLOGY: The sample comprised of 38 patients, of whom 26 underwent surgical treatment, 6 had pharmacological treatment, and 6 had both surgical and pharmacological treatment. The Endometriosis Health Profile (EHP-30) questionnaire in the Czech version and the Numeric Rating Scale (NRS) were used to assess quality of life. The questionnaires were completed before treatment and 3 months into the treatment. RESULTS AND DISCUSSION: When comparing quality of life with the EHP-30 questionnaire, 3 months after the start of treatment, significantly better quality of life scores were found in all domains except the domain "Infertility." Statistically significant improvement was observed in the domains of "Control and powerlessness," "Emotional well-being," and "Pain" (P < 0.0001). Pain assessment using NRS showed subjective improvement in pain during menstruation, outside menstruation, during intercourse, micturition, and defecation. Statistically significant improvement was reported in pain during menstruation and outside menstruation (P < 0.0001). CONCLUSION: Treatment of endometriosis improves the quality of life and also leads to a subjective reduction of pain intensity as one of the main symptoms of the disease.

The impact of surgical treatment for deep endometriosis: metabolic profile, quality of life and psychological aspects.

Objective: To evaluate the effects of surgical treatment of deep endometriosis on the metabolic profile, quality of life and psychological aspects. Methods: Prospective observational study, carried out with women of reproductive age diagnosed with deep endometriosis, treated in a specialized outpatient clinic, from October/2020 to September/2022, at a University Hospital in Fortaleza - Brazil. Standardized questionnaires were applied to collect data on quality of life and mental health, in addition to laboratory tests to evaluate dyslipidemia and dysglycemia, at two moments, preoperatively and six months after surgery. The results were presented using tables, averages and percentages. Results: Thirty women with an average age of 38.5 years were evaluated. Seven quality of life domains showed improved scores: pain, control and impotence, well-being, social support, self-image, work life and sexual relations after surgery (ES ≥ 0.80). There was an improvement in mental health status with a significant reduction in anxiety and depression postoperatively. With the metabolic profile, all average levels were lower after surgery: total cholesterol 8.2% lower, LDL 12.8% lower, triglycerides 10.9% lower, and fasting blood glucose 7.3% lower (p < 0.001). Conclusion: Surgical treatment of deep endometriosis improved the quality of life and psychological aspects of patients. The lipid profile of patients after laparoscopy was favorable when compared to the preoperative lipid profile.

Mindfulness in Facilitating Pelvic Floor Botulinum Toxin Injection in Women with Chronic Pelvic Pain.

Botulinum toxin (BoNT) injection can safely be done as an office-based procedure, but can be painful itself, especially when injecting pelvic floor muscles to treat chronic pelvic pain (CPP). Mindfulness interventions may reduce procedure-associated acute anxiety and pain. We applied mindfulness techniques to increase the tolerability of office-based pelvic floor BoNT injections in women with CPP. Women enrolled in a clinical trial of BoNT for endometriosis-associated CPP were offered a brief, guided mindfulness session before and/or after transvaginal injection. Anxiety, pain, and dysphoria were rated on a 0-10 numerical rating scale (NRS) before and after each mindfulness session. Eight women underwent mindfulness sessions. Five participants had a session before and two after the transvaginal injection. One participant had two sessions: one before and one after separate injections. All six women completing a session prior to injection had at least moderate anxiety, which lessened after the mindfulness session (median NRS change: -3.3/10). All three women reporting injection-associated pain experienced less intense pain following the post-injection session (median NRS change: -3/10). Three women experiencing dysphoria improved after the session (median NRS change: -3/10). A brief, guided mindfulness session may lessen acute pain, anxiety, and dysphoria associated with office-based transvaginal BoNT injection.

An evaluation of sexual function and health-related quality of life following laparoscopic surgery in individuals living with endometriosis.

STUDY QUESTION: What is the relationship between sexual function, health-related quality of life (HRQoL), and laparoscopic surgery in individuals living with endometriosis? SUMMARY ANSWER: A higher number of laparoscopic surgeries is significantly associated with poorer HRQoL and greater levels of sexual dysfunction in individuals with endometriosis. WHAT IS KNOWN ALREADY: Prior research indicates that endometriosis is associated with lowered HRQoL and sexual function and that these outcomes are influenced by endometriosis-related symptom profiles, medical, and surgical management. A limited number of studies have examined changes in sexual function in individuals with endometriosis following laparoscopic surgery or following repeated surgeries. STUDY DESIGN, SIZE, DURATION: A cross-sectional community-based online survey was used to examine the relationships between sexual function, HRQoL, and laparoscopic surgery (n = 210). PARTICIPANTS/MATERIALS, SETTING, METHODS: Individuals with a self-reported diagnosis of endometriosis were recruited via online advertising through social media and gynaecology clinics. Endometriosis-specific data (e.g. diagnostic delay, symptom experience) was collected in addition to engagement with laparoscopic surgery, level of HRQoL (EuroQol-5 Dimension: EQ-5D-5L), and sexual function (Female Sexual Function Index: FSFI). Bivariate correlational analyses and hierarchical multiple regression were used to determine the associations between the variables of interest. MAIN RESULTS AND THE ROLE OF CHANCE: Individuals with endometriosis have substantially poorer HRQoL in comparison to Australian normative samples, with greater levels of endometriosis-related symptom burden, distress, and pain significantly associated with lower levels of HRQoL. The mean FSFI score was suggestive of clinically significant female sexual dysfunction, with the lowest level of function noted in the domain of sexual pain and the highest level of function noted in the sexual satisfaction domain. A greater number of laparoscopic surgeries was significantly associated with poorer overall HRQoL and greater levels of sexual dysfunction. LIMITATIONS, REASONS FOR CAUTION: The cross-sectional nature of the data precludes direct findings of causality and further longitudinal research is recommended. The information pertaining to engagement in laparoscopic surgery was self-report in nature and was not medically verified. WIDER IMPLICATIONS OF THE FINDINGS: The study's findings highlight the pervasive impact of endometriosis on all domains of living, emphasizing the need to extend treatment planning beyond that of physical pain management alone. Early referral for assessment and management of sexual wellbeing is recommended prior to, and post-surgical intervention, with a focus on maintaining post-surgical changes, potentially reducing the need for multiple surgeries. STUDY FUNDING, COMPETING INTEREST(S): The study was not associated with research funding. Author CN reports grant funding from the Australian Government and Medical Research Future Fund (MRFF) and was a previous employee of CSL Vifor (formerly Vifor Pharma Pty Ltd). TRIAL REGISTRATION NUMBER: N/A.

Endometriosis in infertile women: an observational and comparative study of quality of life, anxiety, and depression.

BACKGROUND: A women's chances of getting pregnant decreases in cases of infertility, which may have several clinical etiologies. The prevalence of infertility is estimated as 10-15% worldwide. One of the causes of infertility is endometriosis, defined as the presence of an endometrial gland and/or stroma outside the uterus, inducing a chronic inflammatory reaction. Thus, infertility and endometriosis are diagnoses that significantly affect women's mental health. This study accessed and compared the levels of depression, anxiety, and quality of life in infertile women with and without endometriosis. METHODS: was an observational and cross-sectional study which included 201 infertile women, 81 of whom were also diagnosed with endometriosis. The STROBE Guidelines was used. The data were collected using validated scales: Hamilton D Questionnaire, Beck Depression Inventory, and Fertility Quality of Life Questionnaire; The data were collected at the Ideia Fertil Institute (Santo Andre, Brazil), between February 28 and June 8, 2019. RESULTS: the infertile women with endometriosis reported higher presence of depressive symptoms and a lower quality of life compared to women with infertility only. Similar presence of anxiety symptoms was observed regardless of being diagnosed with endometriosis. Women with infertility and endometriosis presented lower levels in quality-of-life domains when compared to women with infertility only - Mind and Body (58.33 × 79.17, p < 0.001), Relational (75 × 81.25, p = 0.009), Social (66.67 × 77.08, p = 0.001), Emotional (50.62 × 67.43, p < 0.001). CONCLUSION: the findings indicate the need for increased psychosocial support care for women suffering from infertility and endometriosis to assist them in maintaining and managing their own mental health and achieving their reproductive goals.

Assessment of quality of life, psychological aspects, and sexual function of women with endometriosis according to pain and infertility: a cross sectional study.

PURPOSE: To evaluate the quality of life, sexual function, anxiety, and depression of women with endometriosis according to pain symptoms and infertility. METHODS: This cross-sectional multicenter study included 229 women with endometriosis followed up at a tertiary hospital in Campinas, a tertiary hospital in São Paulo, and a reproductive medicine clinic in Campinas from 2018 to 2021. The women were divided into four groups according to the presence of pain symptoms and infertility. The Endometriosis Health Profile Questionnaire, Female Sexual Function Index, Beck Depression Inventory, and Beck Anxiety Index were applied to assess quality of life, sexual function, depression, and anxiety of women with endometriosis. RESULTS: The women were grouped as follows: group 1 (45 women without infertility and without pain), group 2 (73 women without infertility and with pain), group 3 (49 women with infertility and without pain), and group 4 (62 women with infertility and pain). Of the women with infertility, the majority had primary infertility. Most women had deep endometriosis (p = 0.608). Women with pain had higher anxiety and depression scores and worse quality of life than women without pain (p < 0.001). Regarding sexual function, all the groups were at risk for sexual dysfunction (p = 0.671). The group of women with pain and infertility have worse anxiety scores (25.31 ± 15.96) and depression (18.81 ± 11.16) than the other groups. CONCLUSION: Pain symptoms worsen anxiety, depression, and quality of life of women with endometriosis and when associated with infertility, greater impairment of psychological aspects may occur.

A Systematic Review of the Psychosocial Impact of Endometriosis before and after Treatment.

While endometriosis is a common gynecologic disease associated with infertility, the psychosocial impact of endometriosis has not been evaluated against various quality of life (QoL) instruments and compared with other chronic illnesses. We rigorously analyzed the psychosocial burden of endometriosis in adult women and compared standardized and validated QoL scores of women with and without endometriosis, before and following treatment, and against other chronic illnesses. We searched PubMed, PsychINFO Embase, and Cochrane Reviews and ClinicalTrials.gov from January 1990 to December 2022 for publications using a detailed list of search terms related to QoL, endometriosis, and questionnaires. Only English-language publications that evaluated the association between Endometriosis and QoL using standardized and validated questionnaires measured at baseline and following treatment were considered. Four reviewers first performed a title and abstract screening followed by full text-review to finalize included articles. QoL scores of women with endometriosis were measured at baseline and analyzed against women without endometriosis and women with endometriosis who had undergone treatment. Additionally, baseline endometriosis scores were assessed against the published QoL scores of populations with other chronic conditions. Assessment of risk of bias was performed in accordance with Cochrane and Newcastle-Ottawa Scale guidelines. A total of 30 articles were included in this review: 4 randomized trials and 26 observational studies. The diagnosis and experience of women with symptomatic endometriosis had an equal or worse QoL score than that of other chronic conditions including heart disease, diabetes, and breast cancer when compared using the 36-Item Short Form Survey and World Health Organization Quality of Life questionnaires. Evidence showed association between low QoL and infertility, sexual dysfunction, mental health struggles, physical pain, poor sleep and fatigue. QoL scores were lower at baseline compared to following treatment in the majority of these domains. Endometriosis is associated with significant psychosocial burden and impaired QoL scores across baseline measurements in comparison to controls and other chronic illnesses. Medical and surgical interventions significantly decreased experienced burdens and improved QoL of women with endometriosis.

Endometriosis and mental health: a population-based cohort study.

BACKGROUND: Endometriosis is a chronic gynecologic disorder that leads to considerable pain and a reduced quality of life. Although its physiological manifestations have been explored, its impact on mental health is less well defined. Existing studies of endometriosis and mental health were conducted within diverse healthcare landscapes with varying access to care and with a primary focus on surgically diagnosed endometriosis. A single-payer healthcare system offers a unique environment to investigate this association with fewer barriers to access care while considering the mode of endometriosis diagnosis. OBJECTIVE: Our objective was to assess the association between endometriosis and the risk for mental health conditions and to evaluate differences between patients diagnosed medically and those diagnosed surgically. STUDY DESIGN: A matched, population-based retrospective cohort study was conducted in Ontario and included patients aged 18 to 50 years with a first-time endometriosis diagnosis between January 1, 2010, and July 1, 2020. Endometriosis exposure was determined through either medical or surgical diagnostic criteria. A medical diagnosis was defined by the use of the corresponding International Classification of Disease diagnostic codes from outpatient and in-hospital visits, whereas a surgical diagnosis was identified through inpatient or same-day surgeries. Individuals with endometriosis were matched 1:2 on age, sex, and geography to unexposed individuals without a history of endometriosis. The primary outcome was the first occurrence of any mental health condition after an endometriosis diagnosis. Individuals with a mental health diagnosis in the 2 years before study entry were excluded. Cox regression models were used to generate hazard ratios with adjustment for hysterectomy, salpingo-oophorectomy, infertility, pregnancy history, qualifying surgery for study inclusion, immigration status, history of asthma, abnormal uterine bleeding, diabetes, fibroids, hypertension, irritable bowel disorder, migraines, and nulliparity. RESULTS: A total of 107,832 individuals were included, 35,944 with a diagnosis of endometriosis (29.5% medically diagnosed, 60.5% surgically diagnosed, and 10.0% medically diagnosed with surgical confirmation) and 71,888 unexposed individuals. Over the study period, the incidence rate was 105.3 mental health events per 1000 person-years in the endometriosis group and 66.5 mental health events per 1000 person-year among unexposed individuals. Relative to the unexposed individuals, the adjusted hazard ratio for a mental health diagnosis was 1.28 (95% confidence interval, 1.24-1.33) among patients with medically diagnosed endometriosis, 1.33 (95% confidence interval, 1.16-1.52) among surgically diagnosed patients, and 1.36 (95% confidence interval, 1.2-1.6) among those diagnosed medically with subsequent surgical confirmation. The risk for receiving a mental health diagnosis was highest in the first year after an endometriosis diagnosis and declined in subsequent years. The cumulative incidence of a severe mental health condition requiring hospital visits was 7.0% among patients with endometriosis and 4.6% among unexposed individuals (hazard ratio, 1.56; 95% confidence interval, 1.53-1.59). CONCLUSION: Endometriosis, regardless of mode of diagnosis, is associated with a marginally increased risk for mental health conditions. The elevated risk, particularly evident in the years immediately following the diagnosis, underscores the need for proactive mental health screening among those newly diagnosed with endometriosis. Future research should investigate the potential benefits of mental health interventions for people with endometriosis with the aim of enhancing their overall quality of life.

Emotions of endometriosis in clinical encounters: An analysis of women's experiences of health care.

BACKGROUND: A large number of illnesses that lack physical visibility are characterised by troubled clinical encounters. Endometriosis is one such condition with very real and often debilitating symptoms that remain invisible to the clinician's eye, but are experienced and lived by the patient. METHOD: This paper probes into two first person accounts of endometriosis to find out how endometriosis patients experience health care. The Tiger and the Cage: A Memoir of a Body in Crisis (2022) by Emma Bolden and Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics (2020) by Lara Parker are both memoirs that details on the trivialisation and delegitimization of the women's accounts of their own lived reality by a health care system that often privileges medical evidence over lived experiences of the patients. After giving a brief introduction on the condition, the paper goes on to detail on the method and conceptual frameworks chosen for analysis. This is followed by an in-depth analysis into the two texts using thematic analysis proposed by Virginia Braun and Victoria Clarke to identify shared patterns of meanings in the texts. DISCUSSION: The identified themes take the form of emotions repeatedly narrated by the women. The findings indicate instances of disrespect, epistemic invalidation and compromised autonomy, due to which six shared categories of negative emotions are experienced by the patients: self-doubt, shame, fear, powerlessness, self-blame and anger. CONCLUSION: The paper concludes by indicating the urgency of improved medical training, that better educates and facilitates health care professionals in dealing with conditions with complicated aetiology, difficult diagnosis and no cure.

Menstrual Blood Donation for Endometriosis Research: A Cross-Sectional Survey on Women's Willingness and Potential Barriers.

An anonymous online survey in French was used to assess if endometriosis patients would be as ready as unaffected women to donate their menstrual blood for biological research on endometriosis and evaluate potential barriers to such donation. It was distributed in September 2022 by social media and two mailing lists, including a French patient organization. The questionnaire assessed participant age and brief medical history (hormonal contraception, endometriosis diagnosis, type of endometriosis), menstrual experience (menstrual blood abundance, dysmenorrhea), and whether participants would donate menstrual blood. Women who self-declared with an established endometriosis diagnosis versus no endometriosis were compared. Seven hundred seventy-eight women answered the survey. Among women with menstruation (n = 568), 78% are willing to donate menstrual blood for research. Importantly, this proportion was higher in women who declared having an established endometriosis diagnosis (83%, n = 299) compared to self-declared unaffected women (68%, n = 134, p < 0.001). The previous use of a menstrual cup and dysmenorrhea were significantly associated with the willingness to donate menstrual blood, while the use of hormonal contraception was significantly associated with an unwillingness to donate. Only the previous use of the menstrual cup had a predictive value for menstrual blood donation. No significant relationship was observed between menstrual blood donation and age, heavy menstrual bleeding and in endometriosis patients, endometriosis subtypes. In conclusion, women affected or not by endometriosis are largely willing to donate their menstrual blood for research on endometriosis, dysmenorrhea is not a barrier for donation, and women who use a menstrual cup are the more likely to donate.

The impact of endometriosis on the quality of women's life.

OBJECTIVES: Endometriosis is a disease that involves the ectopic growth of the endometrial tissue outside the uterine cavity. Its average occurrence is about 10% of women of reproductive age. Making a diagnosis of the disease is commonly long-lasting and ambiguous due to the wide variety and intensity of symptoms. The aim of the study is to determine factors affecting the quality of life of women struggling with endometriosis. MATERIAL AND METHODS: A cross-sectional study was conducted using a diagnostic survey method with the use of the author's questionnaire and the WHOQOL-BREF questionnaire. The study population included 650 people (group with endometriosis - 361 women and group without endometriosis - 289 women). RESULTS: In the group of women with endometriosis, the mean age was significantly higher (31.87 vs 24.99). Difficulties with conception were significantly more common (51.67%) in the endometriosis group compared to 5.52% in the non-endometriosis group. In each area, the quality of life of women with endometriosis was significantly lower (p = 0.000). Women with the history of the disease of over 3 years significantly more often complained of dyspareunia (p = 0.048), bladder pain (p = 0.01) and lower back pain (p = 0.029). CONCLUSIONS: Endometriosis significantly reduces women's quality of life. Factors that deteriorate the quality of life of women with endometriosis include severe pain, infertility, dyspareunia and reduced satisfaction in various spheres of life (somatic, mental, social). More research is necessary to improve the quality of life of women with endometriosis.

Factors influencing health-related quality of life in women with endometriosis: A cross-sectional study.

This study aimed to assess the health-related quality of life and identify its associated factors in women with endometriosis. A cross-sectional correlation study design and convenience sampling were conducted in the gynecological outpatient clinic of a teaching hospital in northern Taiwan. A total of 216 women with endometriosis were recruited. The data were collected using structured questionnaires and analyzed using descriptive and inferential statistics. Participants reported a moderate level of health-related quality of life. The most significant impact of endometriosis on health-related quality of life was emotional well-being, followed by feeling of control or powerless, pain, social support, and self-image. Educational attainment, menstrual cycle, period length, perceived menstrual flow, symptom distress, and self-management strategies explained 66% of the variance in health-related quality of life. Factors influencing health-related quality of life in women with endometriosis play a key role in promoting women's well-being. Interventions based on these related factors should be developed and taken into practice to effectively manage the disease-related symptoms for women with endometriosis and thereby improve their overall health-related quality of life.

An Investigation of Associations between Pain Catastrophizing and Pain Disability in a Diverse Sample of Persons with Endometriosis.

OBJECTIVE: This study sought to investigate associations between components of pain catastrophizing (using the Pain Catastrophizing Scale; rumination, magnification, and helplessness) and components of pain disability (using the Pain Disability Index; family/home responsibilities, recreation, social activity, occupation, sexual behaviour, self-care, life-support activity) in a diverse sample of persons with endometriosis. METHODS: A total of 686 persons with a self-reported clinician-identified diagnosis of endometriosis participated in this study. Two-tailed independent samples t tests were used to examine between-group differences in pain disability and pain catastrophizing among those below and above clinically relevant moderate pain intensity levels. Between-group differences in pain disability among those below and above the clinically relevant pain catastrophizing level, and between-group differences in pain catastrophizing among those below and above the clinically relevant moderate pain disability level, were also analyzed. RESULTS: Experiencing moderate or greater levels of pain intensity was associated with increased levels of pain disability and pain catastrophizing (P < 0.001). Strong associations between clinically relevant levels of pain catastrophizing and increased levels of pain disability (P < 0.001), in addition to between clinically relevant levels of moderate pain disability and increased levels of pain catastrophizing (P < 0.001), were found at both the total and subdomain levels. CONCLUSION: Pain catastrophizing significantly affects pain disability and vice versa. Future research should examine the temporal relationship between catastrophizing and disability to inform intervention practices. Health care providers are strongly encouraged to evaluate the effects of endometriosis in patients using a biopsychosocial framework.

Fear of progression, depression, and sleep difficulties in people experiencing endometriosis-pain: A cross-sectional study.

OBJECTIVE: Endometriosis is a chronic condition generally characterised by severe pain. Recent findings demonstrate disproportionately elevated rates of insomnia and fatigue among people with endometriosis, particularly among those with associated pain. Yet there is little understanding of the psychological factors that might contribute to these sleep and fatigue related difficulties. We investigated whether fear of progression and depression interacted with pain to influence fatigue and insomnia among people with endometriosis-related pain. METHODS: A total of 206 individuals with endometriosis were included in this cross-sectional, online survey in January 2022. Participants provided relevant demographics and endometriosis characteristics. The BPI-SF, FoP-Q-SF, DASS-21, CFS and ISI were used to assess pain intensity, fear of progression, depression, fatigue, and insomnia symptoms, respectively. Associations between key variables were assessed with correlations. A path analysis determined whether the relationships between pain and fatigue, and pain and insomnia, depended on levels of fear of progression and depression. RESULTS: Controlling for age, fear of progression was uniquely associated with worse fatigue (ß = 0.348, p < .001) and insomnia (ß = 0.389, p < .001), and moderated the relationship between pain and fatigue (ß = 0.155, p = .009). Specifically, with increasing pain severity, the effects of fear of progression on fatigue were exacerbated. Depression was uniquely associated with fatigue (ß = 0.360, p < .001), but did not elicit any moderation effects. CONCLUSION: These results highlight the role of fear of progression and depression in endometriosis-related fatigue and insomnia, paving the way for future interventions targeting these constructs to be tested.

Mental Health Outcomes of Endometriosis Patients during the COVID-19 Pandemic: Impact of Pre-pandemic Central Nervous System Sensitization.

To correlate pain-related phenotyping for central nervous system sensitization in endometriosis-associated pain with mental health outcomes during the COVID-19 pandemic, the prospective Endometriosis and Pelvic Pain Interdisciplinary Cohort (ClinicalTrials.gov #NCT02911090) was linked to the COVID-19 Rapid Evidence Study of a Provincial Population-Based Cohort for Gender and Sex (RESPPONSE) dataset. The primary outcomes were depression (PHQ-9) and anxiety (GAD-7) scores during the pandemic. The explanatory variables of interest were the Central Sensitization Inventory (CSI) score (0-100) and endometriosis-associated chronic pain comorbidities/psychological variables before the pandemic. The explanatory and response variables were assessed for correlation, followed by multivariable regression analyses adjusting for PHQ-9 and GAD-7 scores pre-pandemic as well as age, body mass index, and parity. A higher CSI score and a greater number of chronic pain comorbidities before the pandemic were both positively correlated with PHQ-9 and GAD-7 scores during the pandemic. These associations remained significant in adjusted analyses. Increasing the CSI score by 10 was associated with an increase in pandemic PHQ-9 by .74 points (P < .0001) and GAD-7 by .73 points (P < .0001) on average. Each additional chronic pain comorbidity/psychological variable was associated with an increase in pandemic PHQ-9 by an average of .63 points (P = .0004) and GAD-7 by .53 points (P = .0002). Endometriosis patients with a history of central sensitization before the pandemic had worse mental health outcomes during the COVID-19 pandemic. As a risk factor for mental health symptoms in the face of major stressors, clinical proxies for central sensitization can be used to identify endometriosis patients who may need additional support. PERSPECTIVE: This article adds to the growing literature of the clinical importance of central sensitization in endometriosis patients, who had more symptoms of depression and anxiety during the COVID-19 pandemic. Clinical features of central sensitization may help clinicians identify endometriosis patients needing additional support when facing major stressors.

Investigating the medical journey of endometriosis-affected women: Results from a cross-sectional web-based survey (EndoVie) on 1,557 French women.

OBJECTIVE: To investigate the medical journey and the quality of life of French endometriosis-affected women, from the onset of the symptoms to the therapeutic management. STUDY DESIGN: Between January 15th 2020 and February 3rd 2020, a prospective cross-sectional web-based survey was conducted among women diagnosed with endometriosis. The questionnaire included 52 questions distributed in five sections (screening, sociodemographic characteristics, impacts on quality of life, SF36 questionnaire, management of endometriosis and proposals for care improvement). RESULTS: One thousand five hundred fifty-seven endometriosis-affected women aged of 42±12.8 years answered the questionnaire. On average, 7 years elapsed between the first symptoms (at 23.8 ± 10.2 years) and the diagnosis (31.0 ± 8.9 years). The mean number of symptoms was 4.6 ± 2.3, with 82 % of women experiencing pain scores between 7 and 10/10. Following diagnosis, 66 % women received a medical treatment, mostly hormonal treatments (45 %), with a significant decrease in pain intensity (VAS scores after treatment = 4.9 ± 2.7, p < 0.001). Most women (62 %) had already been operated, among whom 22 % by laparotomy. Finally, patients reported numerous impacts on their daily lives, particularly on the sexual, psychological, and physical fields. The overall mean score of quality of life was 4.3 ± 2.6 /10. CONCLUSION: This large prospective web-based survey underlines that the journey of women with endometriosis is long and difficult until diagnosis and efficient treatment. It emphasizes the urgent need to reduce the diagnostic delay and thereby the burden of endometriosis on women's lives. Moreover, the creation of referral multidisciplinary centers appears to be crucial to improve the management of the disease.

Experiences of communication in women with endometriosis: perceived validation and invalidation in different contexts, and associations with health-related quality of life.

Endometriosis, a chronic gynecological disease affecting approximately 10% of women of reproductive age, has a significant impact on physical and mental health. This cross-sectional study aimed to explore experiences of validating and invalidating communication in three contexts (with healthcare providers, employers, and family/friends), and whether this may predict health-related quality of life (HRQoL) in women with endometriosis. Data was collected through a digital survey distributed to women with self-reported endometriosis in Sweden. The survey included measures of validating and invalidating communication, depressive symptoms, anxiety, and HRQoL. A total of 427 women participated. The results indicated that women experienced varying levels of validating and invalidating communication in different contexts, with close family/friends providing the highest level of validation, and healthcare providers the lowest. Furthermore, a combined construct of high levels of validation and low levels of invalidation from healthcare providers and from close family and friends were significant predictors of HRQoL. These findings highlight the importance of supportive communication and understanding from healthcare providers and close social networks in promoting the well-being of women with endometriosis. Future research should further explore the impact of validating communication within healthcare settings and develop interventions to improve communication and support for women with endometriosis.

'It just stops me from living': A qualitative study of losses experienced by women with self-reported endometriosis.

AIMS: To understand the experience of loss in Australian women with endometriosis. DESIGN: A total of 532 participants completed an online survey containing three open-ended questions relating to pelvic pain and activity loss due to endometriosis. Participants were Australian women aged between 18 and 50 years (M = 30.8, SD = 7.1) with a self-reported diagnosis of endometriosis. An inductive, qualitative approach, with template analysis was used to identify and organize themes. A pragmatic feminist perspective was used to interpret the findings. RESULTS: Three main themes were identified: the loss of liberty: 'I'm trapped in the house'; the loss of bodily autonomy: 'I can barely move/breathe/talk' and loss of connection: 'It stops me from being social'. Pain emerged as the greatest concern for participants, preventing them from the physical functioning required to participate in many of life's activities. CONCLUSIONS: The losses women with endometriosis experience are wide-reaching, restricting control and choice across multiple life domains. Losses were often unacknowledged by loved ones and healthcare providers, further impacting the physical, emotional and mental health of participants. PATIENT OR PUBLIC CONTRIBUTION: People with endometriosis were involved in the design of the study, including identifying topics of interest.

Impact of endometriosis on women's health-related quality of life: A national prospective cohort study.

OBJECTIVE: To examine the association between endometriosis and women's health-related quality of life (HRQoL). STUDY DESIGN: This study included 3728 women born in 1973-78 using data from the Australian Longitudinal Study on Women's Health. Women with endometriosis were identified using self-reported longitudinal surveys linked to administrative health records. A mixed effect model with only random intercept and generalised estimating equations with binary logistic regressions were used to examine the association between endometriosis and health-related quality of life over eight time points. Each HRQoL scale was analysed in terms of binary outcomes by comparing women who had a lower HRQoL (scoring below the 25th percentile) with those who had a higher HRQoL (scoring above the 25th percentile). MAIN OUTCOME MEASURES: Women's HRQoL was assessed using the 36-item Short Form Survey every 3 years from 1996 to 2018. RESULTS: Endometriosis was associated with significantly worse reports of HRQoL over time. In the comparison against women without endometriosis, the following adjusted odds ratios (95 % confidence intervals) were calculated for women with endometriosis having worse scores on the eight domains of the Short Form Survey: physical functioning 1.33 (1.19, 1.50), role physical 1.57 (1.41, 1.74), bodily pain 1.65 (1.48, 1.82), general health 1.61 (1.42, 1.81), vitality 1.38 (1.23, 1.55), social functioning 1.38 (1.25, 1.53), role emotion 1.19 (1.06, 1.33), mental health 1.32 (1.18, 1.48). Women with endometriosis also had significantly lower physical health 1.68 (1.51, 1.88) and mental health components scores 1.28 (1.14, 1.44). CONCLUSIONS: Endometriosis is associated with worse physical, mental, and social functioning and well-being. Bodily pain was the most affected HRQoL domain.

In the thicket of fears, doubts, and murky facts: some reflections on treatment modalities for endometriosis-associated pain.

Endometriosis-associated pain can be managed by either surgery or hormonal therapy. The final decision as to which treatment modality to take is based on efficacy and possible complications of different treatment modalities, risk of recurrence, and the patient's wishes and preferences. But in the thicket of fears, doubts, and murky facts, the choice may ultimately be the trade-off between irrational fears and ignorance versus scientific evidence. We elaborate some pros and cons of the two treatment modalities and highlight some notable downsides of hormonal therapy, in particular the possible yet unquantified risk of long-term hormonal therapy for malignant transformation, perhaps with the only exception of combined oral contraceptives. Thus, when discussing with patients, we advocate the approach of discussing the advantages and disadvantages of all treatment options in detail, accounting for the known pros and cons with a full understanding of the predictive irrationality of human beings. For endometriosis-associated pain, surgery is definitely not a failure of medicine but, rather, a viable option, especially given the recently surfaced undercurrent of wariness and dissatisfaction with the current hormonal drugs among patients with endometriosis. Above all, there is a pressing need to fill the knowledge gap of perioperative interventions intended to reduce the risk of recurrence and to fulfill the demand for the development of safe and efficacious non-hormonal therapeutics.