[Summarising the efficiency of psychological interventions in the treatment of endometriosis]. / Az endometriózis pszichológiai ellátásában használatos beavatkozások hatékonyságának összegzése.

Endometriosis is a common gynecological disease affecting 5-10% of women resulting in several psychological impacts. Regarding the high prevalence as well as extensive somatic symptoms, this has become a growing issue of psychological research in recent years. Thanks to its rising importance the negative effect on quality of life, mood, and anxiety symptoms has been proven. Thus we aimed to organize psychological interventions affecting the mentioned constructs and also examine their efficiency and scientific standards. Our inclusion criteria referred to studies based on randomized controlled trials, systematic reviews, and meta-analyses. We selected seven types of interventions, such as psychoeducation, cognitive behavioural therapy, mindfulness-based methods, progressive muscle relaxation, yoga, physical activity, and complex programs. Regarding the quality of life, mood, and anxiety cognitive behavioural therapy and progressive muscle relaxation were the most effective methods, however, other interventions had promising results either. Besides, there is a growing demand for psychological and mind-body interventions, which should get a more important place in the primary care of endometriosis next to medical treatment. We find inevitable further high-quality examinations, and from the point of practice, we consider it crucial to implement current evidence-based methods in the psychological care of endometriosis. Keywords: , , , , , , , , , , , .

Supportive Care Needs of Young Adults With Endometriosis: An Open-Ended Online Survey and Exploration of Unmet Needs.

OBJECTIVE: The aim of this study is to identify and explore the unmet needs of adolescents and young adults living with endometriosis. DESIGN: An open-ended online survey was conducted, with questions derived from prior research looking at areas of unmet need in healthcare, career and work, financial, information, psychological, social and cultural domains. SETTING AND POPULATION: Self-selecting 18-25 year olds with surgically diagnosed endometriosis (self-reported) currently living in Australia were included as participants. METHODS: Invitation to participate in an open-ended online survey was shared through the social media of Australian endometriosis organisations and the Royal Women's Hospital, Melbourne. Surveys were analysed qualitatively through template analysis. MAIN OUTCOME MEASURES: Recording of the unmet supportive care needs of this population was carried out. RESULTS: One hundred and thirty-one respondents fit the eligibility criteria of being aged 18-25 years (median age 23 years). Most were born in Australia (94%), university-educated (54%) and lived in a metropolitan setting (69%). There was a range of unmet needs that were presented across education, work, healthcare and relationships. Group-specific challenges were identified: doctors either over- or underemphasising future fertility; disrupted sexual and romantic life due to painful sex; managing pain in the classroom and workplace where periods are taboo; and being gender-queer in gynaecological medical spaces. CONCLUSIONS: The increasingly young age at which patients are receiving an endometriosis diagnosis precipitates a shift in patient care. The treatment decisions that are being made must be reflective of the unique needs of the adolescents who carry the burden of the disease. Clinicians are advised to be aware of and discuss needs with their patients. PATIENT OR PUBLIC CONTRIBUTION: The nine open-ended questions in this survey were developed from data from a preliminary series of interviews with endometriosis patients in a tertiary women's healthcare centre. In asking these data-informed questions to the online endometriosis community, patients across broader sociocultural demographics and disease states (including less symptomatic endometriosis) have provided a broader understanding of their supportive care needs.

Health and socioeconomic well-being of women with endometriosis and provoked vestibulodynia: Longitudinal insights from Swedish registry data.

Endometriosis and provoked vestibulodynia (PVD) are prevalent pain conditions among women of reproductive age, significantly impacting their quality of life and psychological well-being. However, comprehensive evidence regarding the lifelong health and socioeconomic outcomes for these individuals remains scarce. Additionally, many prior studies rely on limited and sometimes unrepresentative samples. This study aims to inform on the long-term consequences of these disorders by examining health, fertility, and employment outcomes in a cohort of women diagnosed with endometriosis and/or PVD, tracing their experiences from childhood to their 40s. Leveraging nationwide administrative data from Sweden and employing a matched case-control design, we investigate both similarities and differences between women with these diagnoses and those without. Our findings indicate that women diagnosed with endometriosis and/or PVD demonstrate elevated healthcare utilization patterns, commencing in their early teenage years and progressively increasing over time. Notably, disparities in labor market outcomes emerge in their 20s, showcasing lower labor earnings and a rise in sickness benefit receipt. Moreover, our results show a higher likelihood among these women to experience mental health disorders and concurrent chronic pain diseases, as well as infertility. While the association between endometriosis and infertility is well-documented, this study offers novel insights into a potential similar link between PVD and infertility. Our study informs healthcare professionals and policymakers about the considerable burden of compromised health, adverse psychosocial well-being, and reduced productivity in the labor market faced by young women with these common pain conditions. These findings underscore the urgency of addressing the multifaceted challenges encountered by individuals diagnosed with endometriosis and PVD across their lifespan.

Can general exercise training and pelvic floor muscle training be used as an empowering tool among women with endometriosis? Experiences among women with endometriosis participating in the intervention group of a randomized controlled trial.

BACKGROUND: The potential benefit of exercise in alleviating symptoms of endometriosis is unclear. Still, exercise may be used to empower women and manage disease symptoms. The purpose of this study was to explore how regular supervised group- and individual exercise training, including pelvic floor muscle training (PFMT), is experienced among women with endometriosis after participating in a randomized controlled trial (RCT). METHODS: Among 41 women randomized to exercise training for four months, ten women were interviewed about their experiences with exercise training after participation in the trial. The weekly group training was led by women's health physiotherapists and included individualized and progressive muscular strength training of large muscle groups and the pelvic floor muscles, in addition to endurance-, flexibility, and relaxation training. An individual training program followed the same principles as the group training and was to be performed 3-5 times per week, depending on the level of intensity. PFMT was recommended daily. The women also received a group pain management course emphasizing exercise training as self-management. Using inductive reflexive thematic analysis, responses to the question "Did participation in the study change your view of exercise as part of the treatment for endometriosis?" were analyzed. RESULTS: The women brought forward the importance of knowledge about the benefits of exercise to make informed decisions in disease management. Further, the women described how exercise training was perceived as less frightening and manageable when exposed to various intensities, dosages, and types of exercises in a safe and supportive environment. PFMT was especially brought forward as something new and appreciated, and for some of the women, to be performed on days when their bodies could not handle the general exercise training. They also expressed that the supervised exercise brought an extra dimension of belonging through group participation. CONCLUSIONS: Individualization and regular supervision seem important to empower women with knowledge about exercise training as self-management and to experience exercise training as safe and non-threatening. Further, creating a sense of belonging through group training may improve social support and build active coping strategies that are essential for disease management of endometriosis. TRIAL REGISTRATION: NCT05091268 (registered 23.09.2021).

Causality between neuroticism personality clusters and female reproductive diseases in European population: a two-sample bidirectional mendelian randomization study.

BACKGROUND: The causality between neuroticism, a personality trait characterized by the tendency to experience negative emotions, and female reproductive diseases remains unclear. To provide evidence for the development of effective screening and prevention strategies, this study employed Mendelian randomization (MR) to investigate the causality between neuroticism clusters and female reproductive diseases. METHODS: Instrumental variables were obtained from large-scale genome-wide association studies of populations of European descent involving three neuroticism clusters (depressed affect, worry, sensitivity to environmental stress, and adversity [SESA]) in the Complex Trait Genetics database and six female reproductive diseases (infertility, polycystic ovary syndrome [PCOS], spontaneous abortion, recurrent spontaneous abortion, endometriosis, and uterine fibroids) in the FinnGen database. The bidirectional two-sample MR analysis was conducted using the inverse variance-weighted, weighted median, and MR-Egger methods, whereas the sensitivity analysis was conducted using the Cochran's Q-test, MR-Egger intercept, and leave-one-out analysis. RESULTS: In the forward analysis, genetically predicted depressed affect and worry components of neuroticism significantly increased the risk of infertility (depressed affect: odds ratio [OR] = 1.399, 95% confidence interval [CI]: 1.054-1.856, p = 0.020; worry: OR = 1.587, 95% CI: 1.229-2.049, p = 0.000) and endometriosis (depressed affect: OR = 1.611, 95% CI: 1.234-2.102, p = 0.000; worry: OR = 1.812, 95% CI: 1.405-2.338, p = 0.000). Genetically predicted SESA component of neuroticism increased only the risk of endometriosis (OR = 1.524, 95% CI: 1.104-2.103, p = 0.010). In the reverse analysis, genetically predicted PCOS was causally associated with an increased risk of the worry component of neuroticism (Beta = 0.009, 95% CI: 0.003-0.016, p = 0.003). CONCLUSIONS: The MR study showed that the three neuroticism personality clusters had definite causal effects on at least one specific female reproductive disease. Moreover, PCOS may increase the risk of the worry component of neuroticism. This finding suggests the need to screen for specific female reproductive diseases in populations with high neuroticism and assess the psychological status of patients with PCOS.

Understanding the impact of endometriosis on women's life: an integrative review of systematic reviews.

BACKGROUND: Endometriosis is a challenging chronic condition with a significant impact on women's well-being. This systematic review of systematic reviews aims to assess the evidence investigating the intricate interplay between endometriosis and quality of life (QoL). METHODS: A systematic review was performed for English-language studies up to January 2022 to identify systematic reviews with and without meta-analysis analyzing quantitative or qualitative data The following databases were searched: Scopus, PubMed, Embase, Web of Science and Cochrane Central Register of Controlled Trials. Participants/population were women with endometriosis, and the outcomes included were all reported outcomes evaluating the impact of endometriosis on women's QoL (PROSPERO 2021 CRD42021289347). RESULTS: 15 systematic reviews were identified. 8 included meta-analysis: 4 explored the prevalence of mental health problems, and 1 analyzed, respectively, the overall impact of endometriosis, headache migraine, and sexual function. 7 articles reported on the mental consequences, and three sexual functioning. One was a qualitative review. The impact of the relationships with the healthcare system was analyzed in 3 reviews. Pain is a hallmark of endometriosis. Infertility and sexual problems are also frequent. Depression, anxiety, and stress represent significant contributors to lessening women's QoL. Women have frustrating relationships with the healthcare system: the complex and long diagnostic process, lack of treatment effectiveness, and persistence of symptoms contribute to emotional challenges. Negative cognitive patterns developed by women with emotional distress, such as catastrophizing and fear-avoidance behaviors, amplify the experience of pain. CONCLUSION: The limitations of this review are the high degree of heterogeneity of papers that include many factors, including comorbidities, and use of medical care that may impact QoL, and that most of them were cross-sectional. Endometriosis is a chronic disease that significantly impacts all domains of women's lifes. Pain, infertility, and stress linked with depression, and anxiety significantly influence QoL. Women are dissatisfied with the care they receive.

Assessment of treatment expectations in people with suspected endometriosis: A psychometric analysis.

Background: Treatment expectations influence clinical outcomes in various physical and psychological conditions; however, no studies have explored their role in endometriosis treatment. It is necessary to understand how these expectations can be measured to study treatment expectations and their effects in clinical practice. This study aimed to psychometrically analyze and compare different treatment expectation measurements and describe treatment expectations in women with suspected endometriosis. Method: Analysis of cross-sectional baseline data of a mixed-method clinical observational study of N=699 patients undergoing laparoscopy in Germany. Descriptives, bivariate associations, convergent and discriminant validity of four expectation measurements (Treatment Expectation Questionnaire (TEX-Q); Generic rating scale for previous treatment experiences, treatment expectations, and treatment effects (GEEE); numerical rating scales (NRS) assessing improvement and worsening of endometriosis symptoms, expected Pain Disability Index (PDI); range: 0 to 10) were estimated. A cluster analysis was performed on the three GEEE items. Results: Most participants expected high improvement ( M=6.68 to 7.20, SD=1.90 to 2.09) and low worsening ( M=1.09 to 2.52, SD=1.80 to 2.25) of disability from laparoscopy. Participants who expected greater worsening expected more side effects ( r=.31 to .60, p<.001). Associations between the positive and negative expectation dimensions, including side effects, were small to non-significant ( r =|.24| to .00, p<.001 to.978). Four distinct clusters, described as'positive', 'no pain, no gain', 'diminished', and 'uniform' were found, with a total PVE of 62.2%. Conclusions: Women with suspected endometriosis reported positive expectations concerning laparoscopy, but wide ranges indicated interindividual differences. Treatment expectations seem to be a multidimensional construct in this patient group. The investigated measurements did not correlate to the extent that they measured exactly the same construct. The selection of measurements should be carefully considered and adapted for the study purposes. Clusters provide initial indications for individualized interventions that target expectation manipulation. Trial Registration Number: ID NCT05019612 ( ClinicalTrials.gov).

A randomized feasibility trial evaluating the "My Changed Body" writing activity for people with endometriosis.

OBJECTIVES: Body image disturbance is prevalent in people with endometriosis. This study aimed to explore the feasibility, acceptability and preliminary efficacy of the My Changed Body (MyCB) writing activity for body image in people with endometriosis. DESIGN: Two-arm randomized controlled pilot and feasibility study. METHODS: Australian adults living with endometriosis who identified as having had a negative endometriosis-related body image experience were recruited online through Endometriosis Australia. Participants completed a baseline survey capturing demographic and health data before being randomized into the MyCB or control writing conditions. Additional assessment was administered post-activity and at 1-week follow-up. RESULTS: A total of 82 participants were recruited and randomized (Mage = 32 years, SD = 7.8). MyCB participants were less likely to complete the writing tasks compared to the control group (51% vs. 83%); MyCB completers had lower self-compassion and quality of life, and higher psychological distress, compared to those who dropped out. The MyCB activity received good satisfaction rates (47%-87%). However, there was significant drop-out in the MyCB group (n = 4 vs. 13 at 1-week follow-up). Limited-efficacy testing showed an increase in the self-compassion self-identification for the MyCB group. CONCLUSIONS: The MyCB writing activity may be feasible for people with endometriosis. A future larger trial will benefit from several methodology changes to enhance recruitment and retention. TRIAL REGISTRATION: Australian and New Zealand Clinical Trial Registry ACTRN12622000496718; Date: 29/3/2022; retrospectively registered.

The impact of videolaparoscopic surgery in the treatment of endometriosis on depression levels.

OBJECTIVE: The aim of the study was to evaluate the impact of laparoscopic surgical treatment of endometriosis on the levels of health-related depression in patients using a validated questionnaire. METHODS: A prospective study was carried out between September 2020 and May 2022 in a private hospital (São Luís, Maranhão, Brazil), which analysed depression using the Beck Depression Inventory-II, on 103 patients undergoing surgical treatment for endometriosis, evaluated preoperatively and 3 and 6 months after the procedure. Patients with unsuccessful clinical treatment for endometriosis and pain level ≥7 on Visual Analog Scale and who agreed to participate in the study were included. Demographic data were acquired by consulting medical records. RESULTS: The average age of the participants was 36±6.3 years; the majority of patients were brown (68.6%), married (66.6%), overweight (55.8%), had had hormonal treatments with progestogens (50.9%), low fertility (50.9%), severe endometriosis (39.3%), endometriosis surgery+myomectomy (29.4%) and one (1%) patient withdrew from the study. There was a statistically significant reduction in mean Beck Depression Inventory between the preoperative period and 6 months after surgery (p<0.0001). CONCLUSION: Surgical treatment of endometriosis appears to have a positive impact on the symptoms of depression in the patients evaluated.

Levonorgestrel intrauterine system versus dienogest effect on quality of life of women with deep endometriosis: a randomized open-label clinical trial.

Women with deep infiltrating endometriosis (DIE) can benefit from the use of progestins. Our aim is to explore if levonorgestrel-releasing intrauterine system (LNG-IUS) non inferior to dienogest (DNG) in improving deep endometriosis women's quality of life (QoL). This randomized open-label clinical trial included forty women with DIE assessed using clinical history and physical examination, transvaginal ultrasonography and magnetic resonance of the pelvis without any previous surgical treatment, with two treatments arms. The two groups underwent a 3-month washout of hormonal treatments, and then received either DNG or LNG-IUS for 6 months. QoL was assessed prior to and 6 months after the intervention, using the SF36 and the EHP30. DNG and LNG-IUS showed an increase on all domains of the SF36 (p < .001). There was no difference between treatments on the improvement observed (p > .05 for all domains). DNG and LNG-IUS, also, showed improvement on all domains of EHP30 (p < .001), except "relationship with children" and "feelings about pregnancy." However, there was no statistical difference between treatments for all sections scores (p > .05). The treatment of deep endometriosis symptoms using either DNG or LNG-IUS in women with no prior surgical treatment is associated with improvement in QoL.Trial Registration Number: This trial is registered on "The Brazilian Registry of Clinical Trials (ReBECID: RBR-8fjx2jp)," that is part of Primary Registries in the WHO Registry Network, under the title: "Dienogest versus Levonorgestrel IUS on deep endometriosis patient´s QoL without surgery" on June 14, 2021; https://ensaiosclinicos.gov.br/rg/RBR-8fjx2jp.

Painful sexual intercourse, quality of life and sexual function in patients with endometriosis: not just deep dyspareunia.

PURPOSE: To evaluate the prevalence of deep and superficial dyspareunia in women with diagnosis of endometriosis. Secondly, to assess the temporal relation between deep and superficial dyspareunia in women reporting both symptoms (concomitant dyspareunia) and the impact on quality of life (QoL) and sexual function. METHODS: This is a cross-sectional cohort study that included fertile women with diagnosis of endometriosis. Enrolled subjects reported pain symptoms including dyspareunia and its temporal onset and completed two one-time validated questionnaires regarding sexual function (Female Sexual Function Index) and QoL (International QoL Assessment SF-36). RESULTS: Among the 334 enrolled patients, 75.7% (95%) reported dyspareunia. Women were divided into four groups according to the presence and type of dyspareunia: isolated superficial dyspareunia (6.3%), isolated deep dyspareunia (26.0%), concomitant dyspareunia (43.4%) and no dyspareunia (24.3%). Women with concomitant dyspareunia reported higher NRS scores than women with isolated dyspareunia or no dyspareunia (P ≤ 0.001). The majority of women with concomitant dyspareunia (56.6%) reported that deep dyspareunia developed before superficial dyspareunia. Women with concomitant dyspareunia reported worse QoL and worse sexual function than women with isolated dyspareunia or without dyspareunia (P ≤ 0.001). CONCLUSION: Dyspareunia is a common symptom in women with endometriosis, with many reporting concomitant deep and superficial dyspareunia. Concomitant dyspareunia can significantly impact sexual function and quality of life (QoL). Therefore, it is crucial to investigate dyspareunia thoroughly and differentiate between its types to tailor effective therapeutic strategies.

Experiences of patients with endometriosis with a digital health application: a qualitative analysis.

BACKGROUND: Endometriosis is a frequent disease in women of reproductive age in which the endometrium occurs outside the uterine cavity. Multimodal treatment approaches are necessary due to loss of quality of life and the chronic nature of the disease. Digital health applications (DiGa) are becoming increasingly important. This research project investigates how a healthcare app can influence the subjective experience of illness in patients with endometriosis. METHODS: Empiric data were collected through semi-structured interviews. Data analysis was carried out using qualitative focussed interview analysis. Reliability was ensured by joint interdisciplinary and interprofessional evaluation of the interviews by experts and those affected. RESULTS: Ten patients with endometriosis and the prescribed healthcare app Endo-App© were examined. Categories were defined from the superordinate categories "Factors influencing the experience of illness" and "Evaluation of the app". The app provided reliable information, promoted self-efficacy through exercises and strengthened the perception of the individuality of the illness. It helped to minimise nocebo effects from internet research and enabled a positive change of perspective. Patients criticised the time required for data input and had data protection concerns. The educational elements were often seen as redundant. Some patients only used the app briefly, or not at all. CONCLUSION: Once a DiGa has been prescribed, it may be useful to explain its use on an outpatient basis and validate regular use. Blind re-prescribing of DiGas should be avoided. Younger patients with a recent diagnosis or patients following rehabilitation may benefit more from prescribing.

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.

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.

Impact of relugolix combination therapy on functioning and quality of life in women with endometriosis-associated pain.

OBJECTIVE: To evaluate the effect of relugolix combination therapy (relugolix CT; 40 mg relugolix, 1 mg estradiol, and 0.5 mg norethisterone acetate) for up to 2 years in the SPIRIT long-term extension study on functioning and health-related quality of life (QoL), using the Endometriosis Health Profile (EHP)-30 questionnaire, and assess how changes in QoL domains correlated with improvements in dysmenorrhea as well as nonmenstrual pelvic pain (NMPP). DESIGN: Long-term extension study of the SPIRIT phase 3 trials. SETTING: Clinics and University Hospitals. PATIENT(S): Premenopausal women with moderate-to-severe endometriosis pain who previously completed the randomized SPIRIT trials were eligible to enroll in an 80-week long-term extension where all women received relugolix CT. INTERVENTION(S): Relugolix CT (relugolix 40 mg, estradiol 1 mg, and norethindrone acetate 0.5 mg). MAIN OUTCOME MEASURE(S): Least squares (LS) mean changes in the EHP-30 domain and total scores from baseline (pivotal) were analyzed using a mixed-effects model. Results up to 104 weeks are reported by a pivotal trial treatment group with a focus on the relugolix CT group (i.e., relugolix CT or placebo for 24 weeks, or delayed relugolix CT [relugolix 40 mg monotherapy for 12 weeks, followed by relugolix CT for 12 weeks]). In addition, the relationships between changes in dysmenorrhea and NMPP as well as changes in EHP-30 scores were assessed. RESULT(S): In the 277 women treated with relugolix CT, LS mean EHP-30 pain domain scores improved by 57.8% (LS mean change: -32.8; 95% CI: -35.5, -30.1), 66.4% (LS mean change: -37.7; 95% CI: -40.3, -35.0), and 72.2% (LS mean change: -41.3; 95% CI: -43.9, -38.7) at weeks 24, 52, and 104, respectively. The proportions of women with clinically meaningful improvement in the EHP-30 pain domain were 75.9%, 83.6%, and 88.6% at weeks 24, 52, and 104, respectively. Non-pain EHP-30 domain and total scores likewise improved. A positive correlation between changes in dysmenorrhea/NMPP and all EHP-30 domain scores was observed. Results were similar for the delayed relugolix CT and placebo → relugolix CT groups. CONCLUSION(S): Sustained reduction of endometriosis-associated pain with relugolix CT observed up to 104 weeks was accompanied by improvements in functioning and health-related QoL. These findings complement the results of the pivotal SPIRIT trials, which showed that relugolix combination therapy significantly reduced dysmenorrhea, NMPP, and dyspareunia vs. placebo in premenopausal women with endometriosis-associated pain. CLINICAL TRIAL REGISTRATION NUMBER: Registration/clinicaltrials.gov identifier: SPIRIT Extension Study (NCT03654274).

Observational pilot study on the influence of an app-based self-management program on the quality of life of women with endometriosis.

PURPOSE: Endometriosis can significantly impair the quality of life of those affected. Multimodal self-help measures are recommended but often difficult to access. Smartphone apps have been shown to improve the quality of life for other conditions with chronic pain. The aim of this study was to examine whether there is evidence of beneficial effects of the smartphone app "Endo-App®" and whether a multicenter randomized controlled trial should be planned to substantiate these effects. METHODS: In a sample of N = 106 women affected by endometriosis the present study determined the influence of the use of Endo-App® on their quality of life. Among others, the validated questionnaire Endometriosis Health Profile from Oxford University was used for this purpose. RESULTS: The use of Endo-App® lead to a highly significant improvement in quality of life already after 2 weeks. A statistically significant change was found for nine out of ten measured variables of quality of life. A series of further analyses validated that the measured positive effects were not due to other confounding factors. CONCLUSION: In summary, the results indicate that the quality of life of women with endometriosis improved by the digital self-management tool Endo-App®. More studies are needed to further explore the influence of the app on quality of life and as confirmatory evidence of beneficial effects. For this purpose, a randomized controlled trial should be conducted over a longer period of time. TRIAL REGISTRATION: This trial is registered at clinicaltrials.gov under the registration number NCT05528601 on August 18, 2022. It was retrospectively registered.

The "most bothersome symptom" construct: A qualitative study of Australians living with endometriosis.

INTRODUCTION: "Improvement in the most bothersome symptom" was recently selected as a core outcome for endometriosis intervention trials. This study aimed to explore the applicability of the construct of "symptom bother" in representing the lived experiences of people with endometriosis. MATERIAL AND METHODS: Semi-structured interviews were conducted to understand the meaning of "symptom bother" and related constructs. Eighteen interviews were conducted: 14 among people with a surgical diagnosis of endometriosis who were recruited from the community, and four with people who were recruited from a private gynecology clinic who had either a confirmed diagnosis or a high suspicion of the disease. All interviews were audio recorded, transcribed verbatim, and analyzed thematically. RESULTS: Three primary themes were identified: (1) endometriosis symptoms and priorities vary with time and context, (2) endometriosis symptoms impair normal daily functioning, (3) endometriosis symptoms are more than just a "bother." The concept of "bother" to describe endometriosis symptoms did not resonate with most participants. Whilst "bother" was familiar language, it did not encompass the broader implications of living with endometriosis. Participants felt "bother" implied emotional distress, lacking a full understanding of the consequences of the disease. Instead, "symptom impact" was endorsed, allowing participants to quantify and objectively assess their symptoms, free from negative connotations. CONCLUSIONS: This was the first qualitative study to explore "symptom bother" among people living with endometriosis. Instead of "bother," "impact" was widely endorsed as a suitable construct. This term more appropriately captured the broad ways in which endometriosis symptoms impair daily functioning.

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.

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.

Uncovering moderators of pain perception by women with endometriosis from Latin America and Spain: the roles of sociodemographics, racial self-identity, and pain catastrophizing.

ABSTRACT: A cross-sectional multinational collaborative study on women with endometriosis from Latin America and Spain uncovered high levels of painful symptomatology and high pain catastrophizing scores. Associations between pain perception/catastrophizing and race/ethnicity have been documented. This study was conducted to uncover factors moderating pelvic pain severity, including socioeconomic variables, self-identified race, and pain catastrophizing in women with endometriosis from Latin America and Spain, a population encompassing diverse racial and sociocultural contexts. Self-reported data on demographics, clinical history, Ob-Gyn history, pelvic pain intensity, and pain catastrophizing were collected with the Spanish World Endometriosis Research Foundation (WERF) Endometriosis Phenome Project (EPhect) Clinical Questionnaire (ECQ). Multiple logistic regression was conducted to analyze effects of self-identified race, demographic clusters (defined as countries with similar racial population distribution), socioeconomic factors, and pain catastrophizing on reporting severe vs moderate-mild levels of dysmenorrhea, dyspareunia, and pelvic pain. Self-identified race did not affect the likelihood of reporting severe pelvic pain; however, there were significant differences in reporting severe dysmenorrhea at worst among demographic clusters. Older age was associated with severe dyspareunia at worst and recent pelvic pain. Pain catastrophizing score was highly predictive of reporting most types of severe pelvic pain, regardless of race and demographic cluster. These results negate a role of racial categories as moderator of pain in women from Latin America and Spain and support integration of pain catastrophizing assessments and psychological interventions into the pain management plan to enhance therapeutic outcomes and QoL for patients with endometriosis.