The Psychological Well-Being,Catastrophizing,and Quality of Life of Among Women Diagnosed with Endometriosis

Abstract

Background:

Endometriosis is a chronic gynecological condition affecting approximately 1 in 10 women of reproductive age, often causing significant suffering, delayed diagnosis, and limited knowledge about coping strategies, particularly regarding quality of life (QoL) and psychological well-being (PWB). The current research aimed to (1) examine differences in QoL and PWB between women diagnosed with endometriosis and healthy controls and (2) investigate the relationship between pain catastrophizing and their QoL and PWB.

Methods:

This quantitative cross-sectional study included a total of 170 women, with 89 diagnosed with endometriosis and 81 healthy controls. Data were collected using an online questionnaire covering sociodemographic details, the Short Form Health Survey-QoL, PWB, and Pain Catastrophizing Scale, completed anonymously by the participants.

Results:

A significant difference was found in the QoL between healthy women and those diagnosed with endometriosis, with healthy women reporting significantly higher QoL scores (mean [M] = 4.1, standard deviation [SD] = 0.56) compared with women with endometriosis (M = 2.6, SD = 0.8) (t = −14.06, ***p < 0.001). However, there was no significant difference in PWB between the two groups. Furthermore, a moderate negative correlation was observed between catastrophizing and QoL (r = −0.548, **p < 0.001), indicating that higher levels of catastrophizing were associated with lower QoL. Similarly, a moderate negative correlation was found between catastrophizing and PWB (r = −0.279, **p = 0.008).

Conclusion and Recommendations:

Women with endometriosis experience worse QoL compared with healthy women, with pain catastrophizing negatively impacting their PWB and QoL. Interventions should focus on addressing pain perceptions and providing psychosocial support to improve their overall well-being and QoL.

Background

Endometriosis is a chronic gynecological condition where tissue similar to the lining of the uterus grows outside the uterus, causing symptoms like pelvic pain, infertility, and menstrual irregularities. Endometriosis is a complex chronic disease that affects approximately 10% of women of reproductive age worldwide and commonly presents with pelvic pain and infertility. Diagnosis of endometriosis typically involves a combination of medical history, pelvic examination, imaging studies, and sometimes laparoscopic surgery.^1,2

Treatment for endometriosis aims to alleviate symptoms, slow the progression of the disease, and improve quality of life (QoL). It may involve pain management, hormonal therapies, hormonal medications, such as birth control pills, progestins, gonadotropin-releasing hormone agonists, and danazol, and laparoscopic surgery, which can be both diagnostic and therapeutic. It is essential for women with endometriosis to work closely with their health care providers to develop a personalized treatment plan tailored to their symptoms, preferences, and reproductive goals.³

Endometriosis affects millions of women worldwide and can significantly impact their QoL and psychological well-being (PWB). QoL refers to an individual’s overall well-being, including physical health, psychological state, social relationships, and environmental factors. In the context of endometriosis, symptoms such as pain, fatigue, and emotional distress can diminish a woman’s QoL, affecting various aspects of her life.⁴ The QoL of women with endometriosis can be significantly impacted by various physical, emotional, and social factors associated with the condition. Endometriosis-related symptoms such as pelvic pain, dysmenorrhea (painful menstruation), dyspareunia (painful intercourse), and gastrointestinal symptoms can have a profound negative impact on daily functioning and overall well-being.⁵ Furthermore, women with endometriosis often experience emotional distress, including anxiety, depression, frustration, and feelings of isolation. The unpredictable nature of symptoms and the chronicity of the condition can lead to psychological challenges and impaired mental health.⁶

Generally, endometriosis-related symptoms may interfere with work productivity, leading to absenteeism, presenteeism, and difficulty maintaining employment. Social activities and participation may also be limited due to pain, fatigue, and other symptoms.^4,5

Hence, overall, the QoL of women with endometriosis is multidimensional and influenced by physical symptoms, emotional well-being, social support, reproductive concerns, financial resources, and access to health care. Addressing the complex needs of women with endometriosis requires a holistic approach that integrates medical treatment, psychological support, social services, and patient education.

PWB encompasses emotional, cognitive, and social aspects of mental health. Women with endometriosis often experience anxiety, depression, and stress due to the chronic nature of the condition and its impact on daily functioning and relationships.⁵ The PWB of women with endometriosis is an area of significant research interest.⁷ Here is what the scientific literature suggests about PWB in women with endometriosis. It is known that women with endometriosis often experience higher levels of psychological distress compared with women without the condition. Psychological distress may manifest as symptoms of anxiety, depression, stress, and overall reduced QoL.^5,7 In addition, psychological distress associated with endometriosis can significantly impact various domains of daily functioning, including work, social relationships, sexual functioning, and overall QoL. The experience of chronic pain and other symptoms may contribute to feelings of frustration, helplessness, and reduced self-esteem.⁸ Living with a chronic condition like endometriosis can lead to chronic stress, as women may constantly grapple with symptoms, treatment decisions, and uncertainties about the future.¹ Chronic stress can further exacerbate psychological distress and negatively affect physical health and well-being. Furthermore, women with endometriosis employ various coping strategies to manage the emotional challenges associated with the condition. Adaptive coping strategies, such as seeking social support, engaging in relaxation techniques, and maintaining a positive outlook, may help mitigate psychological distress and enhance well-being. The PWB of women with endometriosis is influenced by a range of factors, including symptom severity, coping strategies, social support, and health care experiences. By addressing psychological distress and promoting adaptive coping skills, health care providers can help improve the overall well-being and QoL of women living with endometriosis.^2,7

Catastrophizing is a cognitive distortion characterized by exaggerated negative interpretations of pain or other stressful events. In the context of endometriosis, catastrophizing may involve magnifying the severity of symptoms, fearing the worst outcomes, and feeling helpless or overwhelmed by the condition. Catastrophizing has been linked to increased pain perception, disability, and psychological distress in various chronic pain conditions, including endometriosis.⁸ Catastrophizing refers to the tendency to magnify the severity of pain or symptoms and to feel helpless or overwhelmed by them. In the context of endometriosis, catastrophizing can exacerbate the experience of pain and negatively impact overall well-being.^8,9 Studies have shown that women with endometriosis who engage in catastrophizing tend to report higher levels of pain intensity and greater pain-related distress compared with those who do not catastrophize. In addition, catastrophizing has been associated with impaired physical and psychosocial functioning in women with endometriosis and may also influence treatment outcomes. Studies revealed that women with endometriosis who catastrophize may experience heightened levels of psychological symptoms, further exacerbating the impact of their condition on their QoL.^9,10 Overall, the relationship between catastrophizing and endometriosis is complex and multidimensional, highlighting the importance of addressing cognitive factors in the management of this chronic condition. Understanding the relationship between catastrophizing, PWB, and QoL in women with endometriosis is essential for developing effective interventions to improve their overall health and functioning. This study focused on examining these relationships to provide insights into how these factors interplayed and to identify areas that may benefit from targeted treatments and support services.

Therefore, the study aims were (1) to test the differences in the QoL and mental well-being of women diagnosed with endometriosis and healthy women (control group) and (2) to test the relationship between the degree of catastrophizing and the mental well-being and QoL of women diagnosed with the disease.

Methods

Participants

This quantitative cross-sectional study included a total of 170 women, with 89 diagnosed with endometriosis and 81 healthy controls (women free from chronic medical conditions, including endometriosis, diabetes, cardiovascular diseases, autoimmune disorders, and mental health conditions). We matched the groups based on age, sociodemographic factors, and overall PWB. This was done to minimize any potential confounding variables that could affect the QoL and PWB outcomes.

Tools

The survey of the study included the following items:

Sociodemographic variables

The demographic background of the participants in the study was examined through questions about age, marital status, number of children, country of birth, nationality, level of religiosity, level of education, and scope of employment. In addition, this section included questions regarding the endometriosis diagnosis process (e.g., number of years until diagnosis, additional medical background).

Psychological well-being

PWB questionnaire: Purpose in life and personal growth scales,¹⁰ includes 16 statements dealing with the subject’s mental well-being. The questions test the degree of agreement with various statements on a Likert scale ranging from 1 (indicates not agreeing at all) to 5 (agreeing to a very large extent). Including high internal consistency reliability (Cronbach’s alpha index 0.89 for the entire questionnaire). Hebrew version of the Ryff Scales of PWB¹⁰ translated by Cohen-Malayev.¹¹

The Short Form Health Survey

The Short Form Health Survey (SF-12) is the short version of the Short Form 36 Health Survey, which was developed within the framework of the Medical Outcome Study (Ware).¹² Using 12 items the SF-12 assesses the two main dimensions of QoL: physical and mental health. These dimensions reflect eight subdimensions: physical functioning (two items), role physical (two items), bodily pain (one item), general health (one item), vitality (one item), social functioning (one item), role emotional (two items), and mental health (two items). The transformed SF-12 scores are standardized from 0 to 100. Higher values represent a higher QoL (Cronbach’s alpha index 0.96 for the entire questionnaire). The type of measurement scale: the questions are multiple choice, and the answer options vary between the questions. Four questions have six possible answers-“All the time” = 1, “Most of the time” = 2, “A significant part of the time” = 3, “Part of the time” = 4, “A little part of the time” = 5, and “At any moment” = 6. The higher the score, the lower the subject’s QoL and vice versa.

Pain Catastrophizing Scale

The Pain Catastrophizing Scale includes 13 items that measure the three elements of catastrophizing in the context of previously encountered clinical pain: rumination, for example, “I can’t stop thinking about the pain”; magnification, for example, “I feel something terrible may happen as a result of the pain”; and helplessness, for example, “I thought there was nothing I could do to stop the pain.” The catastrophizing questionnaire was translated and validated in Israel by Granot and Ferber.¹³ In this study, Cronbach’s alpha for each of the elements was: rumination α = 0.93, helplessness α = 0.92, and magnification α = 0.65. The general validity of the questionnaire was α = 0.909.

Procedure

The Committee of Bioethics of Ruppin Academic Center approved the investigation. The questionnaires were distributed personally and via social networks dedicated to endometriosis (internet forums of women diagnosed with endometriosis). Also, the survey was distributed using the “snowball” method—from one diagnosed to another in order to increase the publication of the research among the diagnosed and for getting healthy women (control group). All participants were informed of the aims of the study, and written informed consent was obtained from them to use the data obtained. Confidentiality and anonymity were guaranteed.

Statistical analysis

The data were analyzed using SPSS version 26.0. In order to examine the differences between the mental well-being and the QoL of healthy women and sick women, independent t-tests were performed. Pearson’s correlations were performed in order to examine the relationship between the degree of catastrophizing and the level of mental well-being and the QoL of diagnosed women.

Results

Descriptive statistics

The sample included 170 women. Eighty-nine women diagnosed with endometriosis (52.4%) and 81 healthy women (47.6%). The women were aged 19–71. The average age of the subjects is 31. Note that 91.2% of the subjects were born in Israel. Also, 57.6% of the subjects are single and 74.1% have no children. In addition, 48.5% of the subjects have a secondary/postsecondary education (Table 1).

Table 1.

Sociodemographic Variables of the Study Group and Control Group (Percentages)

Variables	Endometriosis (n = 89)	Healthy women (n = 81)
Marital status
Single	61.8	53.1
Married	31.5	38.3
Divorced	1.1	3.7
Widowed	0	2.5
Other	5.6	2.5
Country of birth
Israel	89.9	92.6
Other	10.1	7.4
Religion
Jewish	94.4	85.2
Muslim	2.2	3.7
Christian	1.1	7.4
Druze	1.1	0
Other	1.1	3.7
Level of religiosity
Secular	57.3	50.6
Traditional	21.3	30.9
Religious	11.2	8.6
Atheist	9	4.9
Other	1.1	4.9
Education
High school/Post-secondary	47.2	49.4
Bachelor’s degree	38.2	45.7
Master’s degree	14.6	4.9

Among healthy women, 44.4% reported working full-time, 42.7% part-time, and 12.3% not working at all. Among diagnosed women, 29.2% work full-time, 29.4% part-time, and 31.5% are not working at all.

Note that 19.1% of those diagnosed reported that it took between 1 and six months to diagnose the disease, 14.6% reported a time frame of 6 months–2 years, 16.9% reported 2–5 years, and 49.4% reported that it took more than 5 years to receive a diagnosis.

In addition, 52.8% of those diagnosed reported having an additional chronic illness. Among these, 19.51% reported having fibromyalgia, 8.54% reported being diagnosed with migraines, 7.32% with asthma, 6.10% with irritable bowel syndrome, and about 4.88% reported also suffering from adenomyosis. On average, diagnosed women reported a pain level of 6.97 out of 10, and 51% regularly take painkillers.

The research findings indicate that there is a significant difference in the QoL between women diagnosed with endometriosis and healthy women. The QoL of healthy women (mean [M] = 4.1, standard deviation [SD] = 0.56) was significantly higher than that of women diagnosed with endometriosis (M = 2.6, SD = 0.8), as evidenced by the t test results (t = −14.06, ***p < 0.001) (Table 2).

Table 2.

Means, Standard Deviations, and Differences Between Women Diagnosed with Endometriosis and Healthy Women in Psychological Well-Being and Quality of Life (Independent Samples t Test)

Variable	Diagnosed with endometriosis (n = 89)		Healthy (n = 81)		t	Sig
Variable	M	SD	M	SD	t	Sig
Psychological well-being	3.71	0.56	3.89	0.50	−2.159	p = 0.147
Quality of life	2.64	0.80	4.13	0.56	−14.067	p < 0.001

No significant difference was found in the PWB of women diagnosed with endometriosis compared with healthy women (p = 0.147) (Table 2).

A moderate negative correlation was found between the level of catastrophizing and the QoL in women diagnosed with endometriosis (r = −0.548, **p < 0.001), indicating that higher levels of catastrophizing are associated with lower QoL. Additionally, a moderate negative correlation was found between the level of catastrophizing and the PWB of women diagnosed with endometriosis (r = −0.279, **p = 0.008), indicating that higher levels of catastrophizing are associated with lower PWB (Fig. 1).

FIG. 1.

The relationship between pain catastrophizing, psychological well-being (PWB), and quality of life (QoL) among women diagnosed with endometriosis. A negative correlation was found between the level of pain catastrophizing and QoL and PWB in women diagnosed with endometriosis.

Discussion

This study examined the differences in QoL and PWB between healthy women and those diagnosed with endometriosis. The findings indicate significant differences in QoL, with healthy women reporting higher levels compared with women with endometriosis. This aligns with previous research indicating that endometriosis has a devastating impact on women’s QoL, significantly affecting their physical and sexual activities due to pelvic pain.¹⁴ Additionally, women with endometriosis often report a lack of supportive environments. They feel embarrassed and are less likely to share their experiences with family and friends. The disease also substantially impacts their relationships with partners, not only due to impaired sexual activities but also due to chronic fatigue, medication use, bleeding, and fertility issues.^15,16

However, no significant differences were found between the groups in terms of PWB, a finding that contradicts other studies that highlight the negative impact of endometriosis on PWB. Previous research suggests that women with endometriosis typically have lower PWB.^17,18 This study did not examine the factors influencing PWB, leaving insufficient information to draw firm conclusions. It is possible that various factors related to support, resources, negative emotions, lifestyle, and more could influence the PWB of healthy women, thereby masking potential differences.

Furthermore, higher pain catastrophizing was associated with reduced QoL and PWB among women with endometriosis. This finding is consistent with McPeak et al.,⁸ who found that increased pain catastrophizing correlated with worse QoL in women with endometriosis. This suggests that even if pain can be mitigated through surgical or medical treatments, addressing pain catastrophizing is crucial for further improving QoL and PWB in some women with endometriosis.

To the best of our knowledge, this is the first study to compare women diagnosed with endometriosis with healthy women in the context of pain catastrophizing and PWB. The disease evidently has significant implications for the well-being and QoL of affected women. Therefore, early identification of negative emotional characteristics is essential. This study did not explore the factors affecting QoL and PWB in detail, and it is recommended that future studies investigate these factors.

In conclusion, while this study highlights the detrimental impact of endometriosis on QoL, it also underscores the need for further research to fully understand the relationship between endometriosis, pain catastrophizing, and PWB. Future interventions should focus on both medical and psychological aspects to enhance the overall well-being of women with endometriosis.

Health care providers play a crucial role in supporting the PWB of women with endometriosis by offering compassionate care, validating their experiences, and involving them in treatment decision-making. Patient-centered care that addresses both the physical and emotional aspects of endometriosis can improve overall outcomes and enhance QoL. Furthermore, future research is needed to identify interventions that can reduce pain catastrophizing in order to prevent a decrease in the QoL and in the calculation of the PWB of women with endometriosis.

Limitations

The current study has several limitations. First, the study included a limited number of participants (170 women), of whom 89 were diagnosed with endometriosis. It is possible that the findings would differ in a larger sample that more broadly represents the population.

The main limitation of this study is that it is an analysis of cross-sectional data, rather than a longitudinal study. As such, it does not allow for the analysis of the direction of causality between catastrophizing and QoL or PWB. This study may serve as a preliminary foundation for future prospective, longitudinal studies on the impact of endometriosis on QoL and PWB.

Therefore, it is recommended that future research should expand the sample size to get more diverse sample to ensure the generalizability of the findings to the broader population. In addition, there is a need for longitudinal designs to better understand the causal relationships between endometriosis, catastrophizing, and QoL or PWB. While this study provides valuable insights into the PWB of participants, it did not include specific data on maladaptive coping strategies or unmet psychological needs. In addition, the nonrandom sampling technique used may not accurately represent the broader population, leading to skewed results. Future studies should consider employing a more rigorous, random sampling method to mitigate these biases and enhance the robustness of the findings.

By addressing these areas in future research, a more detailed and accurate understanding of the impacts of endometriosis on women’s lives can be achieved, ultimately leading to better support and improved outcomes for those affected by this condition. Future research also may include a broader range of control participants who represent a variety of health conditions, which will help to provide a more nuanced understanding of how endometriosis affects QoL and PWB relative to the general population.

Footnotes

Acknowledgment

This is to acknowledge that no financial interest or benefit has arisen from the direct applications of our research.

Ethical Approval

Informed consent was obtained and the study was approved by the Ethics Committee of Ruppin Academic Center.

Author Disclosure Statement

The authors declare no conflict of interest.

Funding Information

This study has no financial grants or other funding.

Abbreviations Used

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