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

The reviewed evidence suggests that endometriosis has a significant psychosocial impact on women, impacting QoL in all domains. Endometriosis symptoms include, but are not limited to, physical pain, fatigue, poor mental health, infertility, and impaired sexual function. Analysis of the available data shows a clear association between endometriosis and disability scores similar to or exceeding that of other serious and well-known chronic conditions, including heart disease, diabetes mellitus, and breast cancer. Additionally, endometriosis symptoms place a psychological burden on patients, causing increased levels of anxiety, depression, obsessive beliefs and concerns, and self-inflicted violence. As a result, the severe impact of endometriosis on QoL must be recognized and addressed. Models of endometriosis pathogenesis are not yet completely understood. While the most commonly agreed upon theory is retrograde menstruation, another current model suggests that endometriosis arises due to circulating epithelial cells becoming overreactive and getting trapped outside the uterus, true pathogenesis remains unclear [ 74 , 75 ]. Even though its cause has not been clearly determined, recent genetic studies have shown that endometriosis appears to cluster in families with an increased frequency of prevalence. Researchers have suggested that endometriosis likely has a polygenic or multifactorial form of inheritance which still needs to be further explored [ 76 ]. The symptoms of endometriosis exhibit considerable variability, encompassing diverse experiences in terms of symptom presentation, severity, age at presentation, disease progression, response to treatment, and the likelihood of recurrence [ 77 ]. Similar to pathogenesis, researchers are uncertain for the large spectrum in symptomology but have proposed potential answers including genetic predetermination or exposure from lifestyle and environmental factors [ 77 ]. It is important to recognize that the variability in symptoms has been a cause for significant delay in patient diagnosis of endometriosis [ 77 ]. Nonetheless, endometriosis symptomology is persisting and debilitating in patients, creating a need for diagnostic and treatment options to periodically be re-assessed and advanced. Current approaches to endometriosis treatments include laparoscopic surgery, oral contraceptive pills, psychological interventions, and/or administration of hormonal treatments [ 78 – 80 ]. Laparoscopic surgery is a common treatment involving the ablation or excision of endometriosis-related lesions intended to relieve pain associated with subfertility, which is especially common among endometriosis patients [ 78 ]. However, the pain relief is often temporary [ 79 ]. Additionally, hormonal treatments such as the administration of progestin, gonadotropin-releasing hormone antagonists, and oral contraceptives are utilized to repress lesions [ 79 ]. Psychological and mind–body interventions, including yoga and relaxation, also show limited efficacy in relieving pain, anxiety, stress, and depression related to endometriosis [ 80 ]. Further, pharmaceutical treatments with oral GnRH antagonists such as Elagolix, Relugolix, or Linzagolix have shown great promise in treating main QoL domains, particularly physical pain and functioning [ 81 – 83 ]. Thus, varying combinations of these different treatment options are often utilized depending on the patient’s symptomology, care goals, and needs. These established treatment approaches have been utilized in the reviewed studies in conjunction with QoL and symptom-specific questionnaires to gauge physical and psychosocial impacts of endometriosis symptoms and treatments on QoL. Endometriosis symptoms such as poor sleep and severe depression have been demonstrated to have a significant impact on the lives of patients with endometriosis. When comparing patients pre- and post-surgical removal of endometriosis-related lesions, QoL symptoms improved greatly [ 84 ]. Other statistically significant symptoms endured by patients with endometriosis include sexual function and pain which improved in women following surgical intervention [ 85 ]. Additionally, comparisons of QoL between patients with and without endometriosis demonstrated significantly poorer QoL across all dimensions, sleep quality, and fatigue in patients with endometriosis than those without. These results highlight the areas of life that are impacted by endometriosis, as well as the specific areas that could be targeted in treatment plans to reduce the impacts of endometriosis on QoL [ 43 , 53 ]. While studies consistently demonstrated lower QoL in patients with endometriosis, they diverged on which domains were most effected and which treatment options were most effective in relieving symptoms. For example, some studies determined physical pain to have the greatest impact on QoL, while others observed infertility or emotional function to be most impaired. As such, it seems that the symptoms of endometriosis do not affect patients equally. Considering the large variation in symptomology with the inconsistent effect symptoms have on patients suggests that patients will not benefit equally from every treatment option. This is most likely due to the subjective value an individual places on certain domains over others, such as how infertility has the most negative effects on QoL depending on the patient’s stage of life, environment, and personal goals. Therefore, women with endometriosis have significant divergence in QoL scoring, symptomology, and the necessary treatment to relieve these burdens. The studies reviewed demonstrate that QoL symptom-related instruments are extremely valuable in gauging the impacts of endometriosis symptoms on QoL. Endometriosis symptoms are physically painful and infiltrate the lives of patients both physically, psychologically, and socially. While these instruments are typically used as a tool for research, incorporation of these QoL questionnaires into the planning process in conjunction with current treatment options could allow healthcare providers to better assess how endometriosis is uniquely impacting the lives of each individual patient [ 86 , 87 ]. The use of these standardized instruments can potentially help a clinician to better understand their patient’s disease, symptoms, and measure their top priorities for treatment. For example, identification of which domain of life such as physical pain, fertility, or mental health is most impaired could guide clinicians towards which treatment option to start with and focus on. Therefore, inclusion of QoL questionnaires could lead to the creation of a more individualized, targeted, effective treatment plan as endometriosis manifests differently in each patient. Thus, assessing quality of life determinants and their relationships with endometriosis symptoms is essential in determining which aspects of treatment plans should be prioritized to improve QoL for patients. Additional research on implementation of QoL questionnaires during treatment would be beneficial to support the findings of this review. Furthermore, researchers may be able to determine which questionnaires are most impactful during treatment, allowing for more individualized, effective treatment plans for women with endometriosis. Additionally, focus and research in the realm of pathogenesis and potential genetic testing for endometriosis could further enhance QoL through early detection and more focused care. The strengths of this review include the number of searched databases, the large number of articles screened, the rigorous review of articles by four individuals, and requirement of low risk of bias or high-quality scoring for inclusion. This review could be limited due to the variations in study population ages ( Table 1 ). While the ages commonly overlapped and average age was similar, the results of this review many not best represent outlying ages such as younger or elder patients. Additionally, many articles were on populations outside of the United States, leading to potential differences in everyday life and values, which could potentially limit the general application of the review. The exclusion of non-English language articles also limited this review. Despite the limitations, the presented evidence shows that there are significant psychosocial and physical burdens experienced by women with Endometriosis regardless of location. Furthermore, treatment of endometriosis can significantly alleviate those experienced burdens. In conclusion, symptomatic endometriosis is a significant cause for diminished QoL for women. Endometriosis affects many domains of health including mental health, sexual function, infertility, physical pain, and fatigue. Since studies diverged on which symptoms and therapies had the largest impact on QoL, more individualized approaches are needed to address personal treatment goals and circumstances. The inclusion of QoL instruments in a clinical setting could leads to significant care improvement in patients with endometriosis through the thorough evaluation of the many psychosocial factors affecting an individual’s health.

English-language publications evaluating the relationship between diagnosed endometriosis and QoL scores were included. Articles needed to have standardized and validated quantitative questionnaires administered at baseline and after treatment. For reference and cross-checking purposes, other systematic reviews were consulted but not included in this review. Case reports and case series were excluded. Studies were identified by searching PubMed, Embase, PsychInfo, Cochrane Reviews, and Cochrane Trials databases from January 1990 to January 2024. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines were followed for this review [ 9 ]. Additionally, it was registered with PROSPERO (CRD42022382731), the international prospective register of systematic reviews. A comprehensive literature search was undertaken along with collaboration of an experienced data informationist with a background in systematic reviews. A detailed list of search terms related to QoL and endometriosis were designed. Examples of used terms are as follows: “Endometriosis”[Mesh] OR “endometriosis”[tiab] OR “endometrioses”[tiab] OR “endometrioma”[tiab] OR “endometriomas”[tiab]) AND (“Surveys and Questionnaires”[Mesh] OR “Checklist”[tiab] OR “checklists”[tiab] OR “Interview”[tiab] OR “interviews”[tiab] OR “interviewed”[tiab] OR “Inventory”[tiab] OR “Likert scales”[tiab] OR “Questionnaire”[tiab] OR “questionnaires”[tiab] OR “Recall”[tiab] OR “recalled”[tiab] OR “Survey”[tiab] OR “surveys”[tiab] OR “surveyed”[tiab] OR “Quality of Life”[Mesh] OR “quality of life”[tiab] OR “QOL”[tiab]” (See Appendix 1 for the complete list of database search strategies). Following establishment of an eligibility criteria, four independent reviewers screened titles and abstracts using Covidence, a program for conducting and managing systematic reviews [ 10 ]. Then they performed a full text review to ensure complete compliance with inclusion criteria and availability of full data. Only articles with standardized, validated QoL or symptom status questionnaires were included. Reviewers discussed and resolved any inconsistencies. This review includes randomized controlled trials (RCTs) and cohort studies that establish a clear relationship between endometriosis and QoL. Instruments with quantitative QoL scoring were required to be administered prior to and following treatment for assessment of the impact on QoL. The administered instruments were categorized into endometriosis-specific QoL questionnaires, general QoL questionnaires, endometriosis-symptom tracking questionnaires. Studies which lacked available full text or investigated non-human subjects were excluded. (See Appendix 2 for inclusion and exclusion criteria). Authors performed significant data extraction and consolidation of findings into common themes. QoL scores of women with endometriosis were measured at baseline and following various treatment options. Scores were compared between baseline, after intervention, as well as against control groups. Furthermore, baseline QoL scores of women with endometriosis were evaluated against QoL scores of populations with other chronic conditions. The four reviewers assessed the quality of the studies. The Cochrane RoB 2.0 tool determined whether RCTs had low risk, some concerns, or high risk of bias [ 11 ]. This tool assesses risk of bias by considering study factors including the randomization process, deviations from intended interventions, missing outcome data, measurement of the outcome, and selection on the reported result. Similarly, the Newcastle–Ottawa Scale was used to discern the quality of the cohort studies as good, fair, or poor quality [ 12 ]. Study factors including assessment of selection, comparability, and outcome categories are considered to determine study quality.

A total of 7,993 articles yielded from the initial search. From the search, 2,543 duplicates were initially found and removed. The 5,450 unique articles were then screened for relevant titles and abstracts which identified 5,194 irrelevant citations. Full text review of the remaining 256 was performed to assess for adherence to full inclusion criteria and identified 31 articles to be included ( Fig. 1 ). A summary of the main findings and risk of bias of the 31 included articles are presented in Table 1 . Only good quality observational studies evaluated as per the Newcastle–Ottawa Scale and low risk of bias randomized control trials assessed as per Cochrane RoB 2.0 instrument were included in this systematic review. Study results were presented based upon the validated questionnaire used: endometriosis-disease-specific QoL instruments ( Table 2 ), general QoL instruments ( Table 3 and 4 ), and non-condition specific symptom instruments ( Table 5 ). (See Appendix 3 for summary of included standardized instruments and associated validation studies). The included articles evaluated condition specific QoL, using three endometriosis specific forms: Endometriosis Health Profile-30 (EHP-30), Endometriosis Health Profile-5 (EHP-5), and ENDOCARE questionnaire (ECQ). The findings of these instruments are summarized into Table 1 . The EHP-30 is a questionnaire with 30 items and five domains including pain, control/powerlessness, emotional wellbeing, social support, and self-image [ 13 ]. The short form version of the EHP-30, EHP-5, assesses the same core domains with 11 items [ 13 , 14 ]. For both forms, higher scores indicate worse health. Eight of the nine articles, which used a condition specific QoL instrument, used the EHP-30 while only one used the EHP-5. Five of the studies performed interventions. Yela et al. observed that social well-being (50.3 ± 30.6), infertility (48.0 ± 24.8), and sexual intercourse (54.0 ± 32.1) were the worst domains for women undergoing hormonal treatment for endometriosis [ 15 ]. Hansen et al. used a mindfulness-based psychological intervention and observed a lack of significant improvement in EHP-30 scores following 1-year and 6-year follow up [ 16 ]. Elagolix intervention performed by Taylor et al. established significant QoL improvement in pain, control, and emotional domains regardless of dosage (p < 0.001) [ 17 ]. They also determined that Elagolix 200 mg was more effective than Elagolix 100 mg in social support, and self-image domains (p < 0.001) [ 17 ]. Archer et al. also performed an Elagolix intervention which showed impaired QoL scores in all domains at baseline [ 18 ]. Treatment with Elagolix showed improvement regardless of dosage in pain, control and powerlessness, and social support domains [ 18 ]. However, larger dosage (200 mg vs 150 mg) showed greater improvements in all domains (p < 0.05) [ 18 ]. Ekin et al. was the only study to use the EPH-5 and performed a new cross linked hyaluronan gel intervention [ 19 ]. They observed significant improvement in dysmenorrhea, dysphasia, dyspareunia, and overall EPH-5 scores following treatment (p = 0.009). [ 19 ] Apers et al. used the EHP-30 and observed control (35.9 ± 30.4) and emotional (31.2 ± 25.3) domains to be the most impaired [ 20 ]. They also used QoL scores from the EHP-30 and ECQ scores to find significant associations (See ECQ & Endometriosis section) [ 20 ]. Muharam et al. saw poorest scoring in pain and control domains and determined significant association of psychiatric disorder with higher EHP-30 scoring (p < 0.001) [ 21 ]. In another study investigating the effect and symptomology of endometriosis across age groups, Rush et al. found significansst diminishing of health across all domains and all age groups of individuals with endometriosis, especially those below the age of 25 (p < 0.001) [ 22 ]. Additionally, Friedl et al. detected significant differences in QoL scores across all domains when comparing two endometriosis samples (a study sample and another sample from another study – John Radcliff Hospital sample)(p = 0.000) [ 23 ]. De Barros Meneguetti et al. performed a study determining how QoL is impacted by endometriosis related mild/moderate pain or severe pain [ 24 ]. They established a significant relationship between higher pain levels in women with endometriosis and having diminished quality of life overall and across all subscales (p < 0.001). [ 24 ] The ECQ is a 43-item questionnaire on a scale from 0 to 100, measuring 10 domains of how patient-centered endometriosis care (PCEC) is for a patient [ 25 ]. Apers et al. was the only study to use this questionnaire and used it to determine the association between PCEP and QoL, which they measured using EHP-30 [ 20 ]. They found that overall mean PCEC was 38.0 ± 13.7 with large variance in subscale scores such as endometriosis clinic staff (4.8 ± 8.4) and emotional support and alleviation (62.1 ± 22.7) [ 20 ]. Apers et al. also observed significant associations between PCEC subscales ‘continuity’ and ‘social support’ with overall QoL (p = 0.029, p = 0.026) [ 20 ]. PCEC subscales ‘information’ and ‘continuity’ were found to have significant associations with emotional wellbeing and social support QoL scores (p < 0.05) [ 20 ]. The ‘respect’ PCEC subscale was also significantly associated with emotional wellbeing QoL (p = 0.023) [ 20 ]. The general QoL instruments used in the articles are the 36-Item Short Form Survey (SF-36), 12-Item Short Form Survey (SF-12), World Health Organization Quality of Life-BREF Questionnaire (WHOQoL-BREF), EuroQoL Group 5D (EQ-5D), Personal Well-Being Index (PWI), Global Quality of Life Scale (GQoL), and Fertility Quality of Life Questionnaire (FertiQoL). The findings of these instruments are summarized into Table 2 . The SF-36 is a 36-item general QoL questionnaire with eight domains including physical functioning, physical role limitations, bodily pain, general health perceptions, vitality/energy, social functioning, emotional role limitations, and mental health [ 26 ]. Higher scoring indicated better health. Ten of the articles used the SF-36. Seven of the studies using SF-36 performed interventions. Cagnacci et al. observed that surgical, pharmaceutical (estrogen-progestin), or combined intervention led to a significant increase in overall QoL scoring (p < 0.03), particularly in the domains of bodily pain, general health, and social functioning (p < 0.001, p < 0.01 p < 0.02) [ 27 ]. Hansen et al. performed mindfulness-based psychological intervention and similarly to its EHP-30 scoring, observed a lack of significant improvement across all domains [ 16 ]. Martinez-Zamora et al. determined that laparoscopic surgery intervention for women with deep infiltrating endometriosis was associated with significant improvement in QoL scores across all domains—physical functioning (p < 0.001), physical role limitations (p = 0.001), bodily pain (p = 0.001), general health perceptions (p = 0.006), vitality (p = 0.001), social functioning (p = 0.001), emotional role limitations (p = 0.001), mental health (p = 0.01) [ 28 ]. The obtained scores following intervention were comparable to those of health women [ 28 ]. An etonogestrel implant intervention was performed by Sansone et al. and showed significant improvement in bodily pain, general health, vitality, social functioning, and mental health domains of QoL, 12 months after treatment (p < 0.05) [ 29 ]. In a study performed by Stochino Loi et al., with a 90-day pharmaceutical intervention (um-PEA), found significant improvement in QoL scores in all domains was observed (p < 0.0005) [ 30 ]. Teixeira et al. also performed pharmaceutical intervention of potentized estrogen and determined that bodily pain, vitality, and mental health domains were significantly improved following treatment (p = 0.013, 0.022, 0.025) [ 31 ]. Yela et al. measured the worst domains were emotional role limitations (40.2 ± 43.1) and vitality (46.1 ± 24.8) for women undergoing hormonal treatment for endometriosis. [ 15 ] Only three of the articles did not perform an intervention. Arslan et al. observed a significant impairment in QoL scoring for women with endometriosis compared to controls in physical and pain domains (p = 0.001, 0.024) [ 32 ]. A study performed by Friedl et al. described how scores of patients with endometriosis were significantly diminished in comparison to controls, especially in general health, vitality, mental health, and emotional role functioning domains (p < 0.001) [ 23 ]. Verket et al. found significantly reduced mean scores across all domains when comparing endometriosis and control groups and in vitality, social functioning, and mental health domains when comparing endometriosis and rheumatoid arthritis scores (p < 0.001). [ 33 ] Using the collected SF-36 data, the findings of the SF-36 questionnaire for women with endometriosis was compared to women with other chronic conditions including heart disease, diabetes mellitus, and breast cancer (see Fig. 2 ). These findings can be found in Table 3 . Women with endometriosis had similar scoring to breast cancer in physical functioning, physical role, general health, vitality, and emotional role domains [ 34 ]. In bodily pain and social functioning domains, endometriosis was observed to have significantly lowered QoL when compared to women with breast cancer [ 34 ]. In comparison to heart disease and diabetes mellitus, QoL scoring of women with endometriosis was significantly diminished across all domains [ 35 ]. The SF-12 is the 12-item short form version of the SF-36, using the same domains and scoring [ 36 ]. There were 5 studies which used the SF-12 with two interventional and three non-interventional. Ekin et al. used a new cross linked hyaluronan gel intervention which was determined to improve the overall mental and physical component scores following treatment (p = 0.01, p = 0.03) [ 19 ]. Abbott et al. determined that laparoscopic excision of endometriosis significantly improved both overall physical and mental component scores (p < 0.001) [ 37 ]. A study by Adoamenei et al. found diminished QoL for women with endometriosis compared to control groups in physical functioning, physical role, bodily pain, general health, overall physical component score, vitality, social functioning, and emotional role limitations domain scores (p < 0.001, < 0.001, < 0.001, < 0.001, < 0.00 1, < 0.001, < 0.001, = 0.001) [ 38 ]. However, they observed less significant differences in the mental health domain and the overall mental component score (p = 0.06) [ 38 ]. Facchin et al. observed significantly lower overall physical and mental component QoL in women with pelvic pain due to endometriosis compared to those with asymptomatic endometriosis or controls (p = 0.048, p = 0.001) [ 39 ]. In another study performed by Facchin et al., they observed significantly impaired QoL in women with endometriosis and poor sleep compared to endometriosis patients with good sleep (p < 0.001) [ 40 ]. WHOQoL-BREF is 26 item QoL questionnaire assessing physical health, psychological health, social relationships, and environment domains [ 41 ]. Four of the included studies used this instrument. Mehdizadeh Kashi et al. found that treatment of dienogest or a combined oral contraceptive pill was associated with significant improvement in QoL scores (p < 0.001, p = 0.004) [ 42 ]. Davie et al. observed that women with endometriosis experienced significantly impaired QoL compared to controls, especially in physical, psychological, and environment domains (p < 0.001, p = 0.018, p = 0.022) [ 43 ]. Rees et al. determined that a woman’s perception and certainty of her condition and ability to manage pain were significant factors associated with QoL in all domains [ 44 ]. Greater certainty and more positive perception were correlated with improved QoL [ 44 ]. Sepulcri and Amaral observed substandard QoL scores inversely associated with duration of treatment (p = 0.017) [ 45 ]. Additionally, physical limitations increased with greater intensity of pain which further impaired QoL (p = 0.017) [ 45 ]. The findings using the WHOQoL-BREF were evaluated and used to compare women with endometriosis to studies with chronic conditions, similar to the SF-36 data (see Fig. 3 ). The averaged WHOQoL-BREF scores were compiled and compared in Table 3 . Endometriosis significantly lowered scores across all domains in comparison to heart disease, diabetes mellitus, and breast cancer [ 46 – 48 ]. Endometriosis has the closest scoring with the social domain score being 15.69 points below breast cancer [ 48 ]. The EuroQoL Group 5D (EQ-5D) is a 5-item questionnaire used to assess general quality of life in the domains of mobility, self-care, usual activities, pain and discomfort, anxiety and depression, and visual analogue scale [ 49 ]. Only two studies used this questionnaire. Abbott et al. saw a significant improvement in EQ-5Dvas and index scores following laparoscopic excision of endometriosis (p < 0.001), especially in pain reduction (p < 0.001) [ 38 ]. Roman also used a laparoscopic excision intervention and observed significant improvement in dysmenorrhea and pelvic pain symptoms (p = 0.0055, p = 0.05) and a positive improvement in QoL scores for both adolescents and adults [ 50 ]. The Personal Well-Being Index (PWI) is an 8-item instrument assessing standard of living, heath, life achievement, personal relationships, personal safety, community-connectedness, future security, spirituality-religion domains [ 51 ]. Only one study, Rush et al., used this instrument and detected significantly hindered well-being across all domains and age groups of individuals with endometriosis (p < 0.001) [ 22 ]. The Global Quality of Life Scale (GQoL) is a single item assessment of an individual’s overall health [ 52 ]. Abd El-Kader et al. was the only study to use this questionnaire and observed significantly diminished QoL scores belonging to women with endometriosis and adhesions in comparison to women with endometriosis but lacking adhesions (p = 0.002) [ 53 ]. FertiQoL is a 36-item questionnaire which assesses how fertility problems and treatment impact QoL [ 54 ]. It evaluates emotional, mind–body, relational, social domains of QoL [ 54 ]. Zarbo et al. found similar scoring in QoL when comparing infertile women with and without endometriosis across all domains [ 55 ]. A significant difference between the groups was not observed following assisted reproductive treatments [ 55 ]. Depression was collected using the Beck Depression Inventory (BDI). Anxiety instruments included the Beck Anxiety Inventory (BAI) and the State-Trait Anxiety Inventory (STAI). The Hospital Anxiety and Depression Scale (HADS) collected data on both depression and anxiety. The Beck Inventory questionnaires are 21-items for assessing depression or anxiety, respectively [ 56 , 57 ]. De Barros Meneguetti et al. observed significant association between higher pain levels and diminished depression and anxiety scores (p = 0.001, p = 0.003) [ 24 ]. Roomaney et al. found a significant prevalence of moderate to severe depression symptoms in 43.1% of individuals with endometriosis [ 58 ]. Teixeira et al. saw a significant improvement in both depression and anxiety scores following intervention with potentized estrogen (p < 0.001, p = 0.001) [ 31 ]. The STAI is a 20-item instrument to assess trait and state anxiety of an individual [ 59 ]. Two studies used this instrument. Arslan et al. observed no significant effect of endometriosis on state anxiety compared to control women [ 32 ]. Cagnacci et al., found that anxiety scores decreased slightly following surgical and estrogen-progestin intervention (p < 0.02) [ 27 ]. HADS is a 14-item questionnaire used to assess both depression and anxiety symptoms [ 60 ]. Friedl et al. observed moderate to severe anxiety symptoms in 29% of women and depression in 14.5% [ 23 ]. Both anxiety and depression was present in 12.9% of patients [ 23 ]. A significant association between anxiety and depression symptoms was found (p < 0.001) [ 23 ]. However, significant differences in symptomology between patient and control populations were not found [ 23 ]. Facchin et al. also used HADS in both of their studies. In 2015, Facchin et al. found that endometriosis-related pain had a significant impact on anxiety and depression symptoms (p = 0.007, p = 0.000) [ 39 ]. In their 2021 study, they observed that quality of sleep directly impacted anxiety and depression symptoms with significantly different scores between those with good and those with poor sleep (p < 0.001) [ 40 ]. Sexual function was collected using three instruments: Female Sexual Function Index (FSFI), Sexual Activity Questionnaire (SAQ), Sexual Quality of Life – Female Questionnaire (SQoL-F), and Dyadic Adjustment Scale (DAS). Fertility data was collected using the Fertility Problem Inventory (FPI). The FSFI is a 19-item questionnaire to assess sexual desire, arousal, lubrication, orgasm, satisfaction, and pain [ 61 ]. The etonogestrel implant intervention study by Sansone et al. also found significant improvement in dysmenorrhea and dyspareunia and overall FSFI scoring after 12-month, especially in desire, satisfaction and pain, and arousal domains (p < 0.05) [ 29 ]. Yang et al. observed that sexual arousal, satisfaction, and pain scores were significantly lower in women with endometriosis compared to control women (p < 0.05) [ 62 ]. SAQ is 10-item instrument for assessment of sexual pleasure, habit, and discomfort domains [ 63 ]. Abbott et al. performed laparoscopic excision of endometriosis and observed significant improvement in pleasure, habit, and discomfort (p = 0.001, 0.012, 0.001) [ 37 ]. SQoL-F is an 18-item instrument focused on measuring sexual self-esteem, emotional issues, and relationship issues [ 64 ]. DAS is a 32-item scale to measure relationship quality of couples with four main factors: satisfaction, cohesion, consensus, and affective expression [ 65 ]. Alcalde et al. saw a significantly impaired DAS in all domains and overall SQoL scores for patients with deep infiltrating endometriosis in comparison to control individuals (p < 0.001) [ 66 ]. FPI is comprised of 46 items assessing 5 domains including social concern, sexual concern, relationship concern, need for parenthood, and rejection of childfree lifestyle [ 67 ]. Zarbo et al. determined statistically significant importance in desire for parenthood on QoL scores (p < 0.001) [ 55 ]. Three instruments including the Pittsburgh Sleep Quality Index (PSQI), Epworth Sleepiness Scale (ESS), and Insomnia Severity Index (ISI) were used to collect data on quality of sleep related to endometriosis. PSQI uses 19 items to measure subjective sleep quality, sleep latency, sleep duration, habitual sleep efficiency, sleep disturbances, use of sleeping medication, and daytime dysfunction [ 68 ]. In a study performed by Davie et al., sleep quality was determined to negatively impact women with endometriosis compared to controls (p = 0.015) [ 43 ]. The ESS is an 8-item scale assessing sleepiness while ISI is a 7-item index measuring insomnia in patients [ 69 , 70 ]. Facchin et al. used PSQI with ESS and ISI in their 2021 study, to determine that painful endometriosis significantly impacted sleep (p < 0.001) and fatigue (p = 0.006) [ 40 ]. Lower quality of sleep was associated with greater fatigue (p < 0.001) [ 40 ]. The Multidimensional Health Locus of Control Scale – Form C (MHLC-C), Obsessive Beliefs Questionnaire-46 (OBQ-46), and Symptom Check List-90 (SCL-90) were the three instruments used to collect data on patient views on control of their condition and obsessive beliefs related to endometriosis. MHLC-C is an 18-item questionnaire used to gain insight into a patient’s beliefs regarding their health locus of control or perception of control relating to their condition [ 71 ]. Rees et al. determined that a woman’s perception pertaining to her ability to manage pain and certainty about her condition were significant factors for QoL, especially in the physical domain (p < 0.007) [ 44 ]. The OBQ-46 is a 46-item instrument for assessing cognitive domains including perfectionism, responsibility for damage, control of thoughts, responsibility for omission, and importance of thoughts [ 72 ]. Zarbo et al. saw a significant importance given to perfectionism in predicting QoL scores related to fertility (p < 0.05) [ 55 ]. SCL-90 is a 90-item questionnaire used to evaluate domains including somatization, obsessive compulsive, depression, anxiety, phobic anxiety, hostility, interpersonal sensitivity, paranoid ideation, and psychoticism [ 73 ]. Stochino Loi et al. found that a 90-day pharmaceutical intervention of um-PEA caused a significant positive affect on scoring (p < 0.001) [ 30 ].

This systematic review serves to evaluate available information regarding the psychological effects of endometriosis in females through validated & standardized QoL questionnaires administered before and after treatment as well as compare QoL scores of females with and without endometriosis and with other chronic conditions.

Endometriosis is a gynecologic disease associated with the presence of endometrial-like tissue outside of the uterine cavity, leading to menstrual pain and infertility [ 1 ]. This common, chronic condition is estimated to impact 5–10% of women globally during their reproductive years, although the true percentage is expected to be higher since some patients with endometriosis remain asymptomatic or are misdiagnosed [ 2 – 4 ]. Patients often must endure physical symptoms in the form of infertility, menstrual irregularity, fatigue, pelvic inflammation, and varying degrees of pain [ 5 ]. Psychological and social symptoms also manifest through anxiety, depression, sexual dysfunction, and impaired work and family life [ 5 ]. Although more than 176 million patients are burdened with endometriosis worldwide and almost 50% of women with infertility have endometriosis, the psychosocial impacts of endometriosis on patients and their quality of life have yet to be adequately summarized and compared in women pre and post evaluation as well as between women with varying chronic conditions and women without endometriosis [ 3 , 5 , 6 ]. Quality of life (QoL) instruments are widely being used to assess patient treatment plan effectiveness since care options for patients with endometriosis must address the psychosocial impacts in addition to physical impacts of endometriosis [ 7 ]. General and endometriosis specific QoL instruments are often used in conjunction with non-condition specific symptom assessments which are all validated methods for assessing the impact of endometriosis on QoL. They are vital in assessing outcomes such as a unique patient’s varying types of pain, sexual activity, mental health, social interaction, and overall QoL [ 7 , 8 ]. Since the impacts of endometriosis are all-encompassing, affecting a patient’s psychosocial and physical states, a thorough assessment of the relationships between QoL and endometriosis symptoms is essential to improve understandings of how clinical treatments can be implemented to maximize quality of life for patients with endometriosis [ 7 ].