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INTRODUCTION
Endometriosis is characterized by the presence of ectopic endometrial tissue and severe pain. Often, affected women turn to non-medical interventions, such as dietary modifications. This study aims to evaluate the impact of endometriosis on eating habits and quality of life.
METHODOLOGY
An online survey was conducted among Italian women with endometriosis to collect demographic, clinical, dietary habits, and daily life data after diagnosis.
RESULTS
Among the 4,078 participants, 66% reported changes in their eating habits and 92% noticed a deterioration in their daily life. The diets followed included gluten-free (15%), anti-inflammatory (8%), Mediterranean (7.1%), and ketogenic (4%). The study revealed an increase in the consumption of vegetables, fruits (10%), grains, legumes (6.6%), and fish (4.5%), and a reduction in dairy products (18.4%), foods containing soy (6.7%), and saturated fats (8%). Changes in eating habits were correlated with the stages of endometriosis and the deterioration of daily life. Education level, stages of endometriosis, duration of symptoms, and changes in eating habits were linked to changes in daily life.
CONCLUSION
Our results highlight the importance of monitoring eating behaviors to prevent unhealthy habits and malnutrition in women with endometriosis. Further studies are needed to assess how different diets influence symptoms and improve the daily lives of these women.
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1-Introduction
Endometriosis is a prevalent condition among non-malignant gynecological disorders, affecting approximately 10% of women of reproductive age. It is one of the main anatomical factors contributing to persistent pelvic pain (1). Endometriosis is commonly characterized as a chronic inflammatory condition dependent on estrogens, involving the presence of tissue similar to the endometrium outside the uterus. Due to these characteristics, it is now recognized as a systemic disease rather than being confined only to the pelvic region (1).
Endometriosis often coexists with various other conditions such as fibromyalgia, migraines, irritable bowel syndrome, mental health disorders, and immunological conditions such as rheumatoid arthritis (2). It is characterized by various symptoms including chronic pain, dysmenorrhea, dyschezia, dyspareunia, dysuria, fatigue, and reduced fertility. However, the precise causes and underlying mechanisms of the development of endometriosis are not yet fully elucidated. The pathogenesis and pathophysiology of this condition remain areas of active research, and further investigations are necessary to achieve a complete understanding of the disease (2, 3).
The presence of endometriosis can have a profound impact on the physical and social well-being of women, resulting in a significant disease burden, both in terms of economic implications and effect on quality of life (4). Additionally, endometriosis leads to increased absenteeism from work or school (6). The condition exerts a significant influence on the mental and emotional well-being of women (7), as well as on their social activities (8) and sexual relationships (9). Studies have indicated that endometriosis can decrease physical quality of life to a degree similar to that of cancer patients (8).
A recent systematic review and meta-analysis have shown that endometriosis has a detrimental effect on health-related quality of life, comparable to that of chronic pain (10–12). Consequently, many women with endometriosis turn to non-medical methods to manage symptoms and improve their daily lives (13). Thus, women with endometriosis often resort to lifestyle interventions such as rest, heat therapy, meditation, exercise, and dietary modifications to manage their symptoms (3).
Dietary interventions, in particular, have shown promising results in improving symptoms related to endometriosis. Studies have indicated that a significant proportion of women with endometriosis (76%) use self-management strategies, with nearly half of them (44%) opting for dietary modifications (14). Another recent study revealed that 55.5% of participants reported that diet influenced their endometriosis symptoms, and that modifying their diet provided symptom relief (15). Dietary factors may play a role in the progression and development of endometriosis by influencing the metabolism of steroid hormones, the menstrual cycle, inflammation regulation, oxidative stress, and muscle contraction (16).
Consequently, the diets and dietary changes adopted by women with endometriosis have generated increasing interest from researchers. The question of whether and how specific diets and lifestyles can influence the pathogenesis and progression of endometriosis continues to be investigated (16, 17).
The link between dietary factors and endometriosis has garnered interest due to the recognition that diet can impact both physiological and pathological processes. Some authors suggest that dietary modifications may have therapeutic potential to alleviate chronic inflammatory processes and reduce the perception of visceral pain (18, 19). Certain natural anti-inflammatory agents, such as Omega-3 polyunsaturated fatty acids (PUFAs) and squalene, a biofunctional lipid compound, have shown beneficial effects on chronic diseases (20–22).
Other diets, such as the Mediterranean diet, the low FODMAP diet (fermentable oligo-, di-, monosaccharides, and polyols), and the gluten-free diet, have also been studied in relation to chronic inflammatory diseases (23, 24). A recent systematic review focused on the impact of dietary modifications on pain perception in relation to endometriosis demonstrated that diet had a positive influence on pain perception in women with endometriosis. In particular, a high intake of PUFAs, a gluten-free diet, and a low-nickel diet were associated with better pain management in endometriosis (25).
Furthermore, the addition of nutrients with anti-inflammatory and antiestrogenic properties, such as antioxidants (curcumin, epigallocatechin gallate, quercetin, resveratrol, and inositol), found in fruits, vegetables, and fatty fish, while eliminating pro-inflammatory substances like lactose, saturated fats, and soy, has been suggested to relieve endometriosis pain (15, 26–29).
Furthermore, initial investigations into the effectiveness of probiotics in managing endometriosis in women have shown promising results in terms of pain relief (30). Additionally, studies have reported that the administration of Lactobacillus type probiotics could improve pain associated with endometriosis in women (31). Consequently, existing data imply the significant impact of dietary supplements in inducing favorable changes in the gut microbiota, which may play a role in promoting human health and reducing the risk of inflammatory conditions, including endometriosis.
Therefore, dietary choices can impact the progression of the disease and the perception of pain in endometriosis.
However, it is important to note that solid evidence regarding the relationship between nutrition, a healthy diet, and the treatment of endometriosis is limited, as are studies exploring the effect of the disease on dietary choices.
Thus, the objective of this study was to investigate the potential effects of the disease on the eating habits and daily activities of women after a diagnosis of endometriosis.
2-Methods
The Italian Association of Dental Hygienists (AIDI) and the Scientific Technical Association of Food, Nutrition, and Dietetics (ASAND), in collaboration with the Clinical Nutrition Unit of the "Magna Graecia" University of Catanzaro, conducted an online survey to explore various aspects of the daily lives of women with endometriosis. This cross-sectional study collected data between April 9 and June 27, 2021. An anonymous national survey was administered via Google Forms, targeting women over 18 years old residing in Italy who self-reported a diagnosis of endometriosis. Recruitment was carried out through direct links to the survey and invitations disseminated via social networks such as Facebook, WhatsApp, Twitter, and Instagram, specifically through AIDI, ASAND, and the Italian Endometriosis Association. The latter serves as a network to foster discussion, community, and support among women with endometriosis. The study received ethical approval from the Local Ethics Committee of the Central Calabria Region (code 355/2021/CE).
2.1. Questionnaire
We developed a semi-structured online questionnaire aimed at collecting self-reported sociodemographic data (age, education level, professional status), the perceived impact of endometriosis symptoms on daily life, disease-related information (years since diagnosis, stage, symptoms, diagnostic delay, pharmacological treatment, associated autoimmune diseases), and self-reported changes in eating habits after an endometriosis diagnosis (see Supplementary Table S1).
In our study, dietary change was defined as a self-reported modification of the previous diet (15, 32–34). The impact of endometriosis symptoms on daily life was examined through questions related to chronic fatigue, depression and anxiety, sleep disorders, reduced fertility or subfertility, decreased sexual satisfaction, reduced work capacity, decreased social interactions, difficulties in planning and executing daily activities, and pain management challenges (7–12, 35–38). Our questionnaire was developed by adapting previously validated tools (7–12, 35–38). Participants provided their informed consent via an anonymous online form at the beginning of the questionnaire. Participants were asked to self-report the stage of their endometriosis diagnosis, if known, according to the American Society of Reproductive Medicine (ASRM) classification system, which includes four stages: Stage I (Minimal), Stage II (Mild), Stage III (Moderate), and Stage IV (Severe) (39). The questionnaire consisted of 31 questions, primarily using closed questions with predefined response options. Five questions allowed participants to provide open-ended responses and share their personal opinions. The survey took an average of 15 to 20 minutes to complete."}
To validate our questionnaire, as reported in other studies (40), we conducted a factor analysis using Horn's parallel analysis for principal components, with a varimax rotation (32, 33, 40). An eigenvalue of 1 was used as the threshold to determine the number of factors. In total, the explained variance accounted for 64.4% of the variance. To assess internal consistency, reflecting the degree to which the items of the instrument measure the same concept, we used the Cronbach's α test. A Cronbach's α value greater than 0.70 indicates good internal consistency, and our questionnaire obtained a Cronbach's α value of 0.72.
2.2. Statistical analysis
To find a correlation between changes in eating habits and the stage of endometriosis with an r value of 0.05, a study power of 80%, and a one-sided alpha of 0.05, a sample size of 3,134 women with endometriosis was necessary. At the close of the online survey and the cessation of data collection, the final database was downloaded as a Microsoft Excel sheet and submitted for data analysis. Open-ended questions were carefully reviewed, condensed, and coded for statistical analysis. Missing data were not imputed during the statistical analysis. The results are presented as absolute (n) and relative (%) frequencies for categorical variables. The Pearson correlation coefficient was used to identify confounding variables associated with changes in eating habits and daily life, assuming a normal distribution for continuous variables.
Moreover, a Chi-square test was conducted to examine changes in dietary habits and daily life among participants after the diagnosis of endometriosis, stratified by stage of the disease. The same test was used to evaluate dietary patterns and food choices among women with endometriosis who reported a deterioration in their quality of life. Statistical significance was set at p < 0.05 (two-tailed). All statistical analyses were performed using SPSS 25.0 software for Windows (IBM Corporation, New York, NY, USA).
3-Results
During the survey, a total of 4,078 responses were collected and analyzed. Table 1 presents the demographic and clinical characteristics of women with endometriosis. The largest proportion of participants (45%) were between 36 and 45 years old, and 37% of the women were at the severe stage of the disease. Among the participants, 1,333 were undergoing hormonal treatment at the time of the interview, with 1,331 using oral contraceptive pills or vaginal contraceptive rings (see Table 1). The education level of the respondents varied, encompassing both secondary school and university education (see Table 1). A diagnostic delay exceeding 7 years was reported by 39% of the participants (see Table 1). About 17% of the women reported autoimmune diseases, including Sjögren's syndrome, rheumatoid arthritis, systemic lupus erythematosus, autoimmune thyroid disorders, and others (data not shown). Celiac disease was reported by 1.2% of the participants.
3.1. Changes in eating habits after the diagnosis of endometriosis
After the diagnosis of endometriosis, eating habits changed in 66.4% of respondents (Figure 1).
Figure 3 - Food choices of women with endometriosis
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3.2. Impact of Endometriosis Symptoms on Daily Life
Family and friends tend to downplay the symptoms of endometriosis for 46% (n = 1,872) of respondents (data not shown). Moreover, daily life worsened for 92% (n = 3,767) of the women surveyed due to the disease. In particular, women with endometriosis reported difficulties in managing pain and planning or carrying out daily activities (22%), a reduction in work capacity (12%), and a decrease in social interactions (10%) (Figure 4). Additionally, chronic fatigue and depression-anxiety were reported by 22% and 13% of women with endometriosis, respectively (Figure 4).
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3.3. Predictors of Changes in Eating Habits and Worsening of Daily Life
In women with endometriosis, Pearson's correlation showed that changes in dietary habits were correlated with the stages of endometriosis (r = 0.10, p < 0.001), years of symptoms (r = 0.37, p = 0.018), and changes in daily life (r = 0.14, p < 0.001) (data not shown). Furthermore, in this population, the worsening of daily life was correlated with the level of education (r = -0.04, p = 0.002), stages of endometriosis (r = 0.15, p < 0.001), years of symptoms (r = 0.13, p < 0.001), and changes in dietary habits (r = 0.14, p < 0.001) (data not shown).
In the logistic regression analysis, changes in dietary habits were associated with stages of endometriosis and a deterioration in daily life (Table 2). Additionally, changes in daily life were significantly associated with all variables, including level of education, stages of endometriosis, years of symptoms, and changes in dietary habits (Table 2).
4. Discussion
The objective of this study was to investigate the potential effects of the disease on the eating habits and daily activities of women after a diagnosis of endometriosis. The large cohort of 4,078 participants provides a solid basis for data analysis. The majority of women being between 36 and 45 years old may reflect the typical age of diagnosis or the time when women actively seek medical assistance (4, 5). The prevalence of 37% of women with a severe stage (stage IV) represents a significant portion of those facing the most important challenges associated with endometriosis (4, 5, 10–12). The diagnostic delay exceeding 7 years for 39% of participants is concerning and highlights the importance of accurate and prompt diagnosis. Several studies have reported diagnostic delays similar to those observed in our population, with an average time ranging from 4.4 years in the United States to 10.4 years in Germany (41, 42). The main reasons for these delays include the intermittent use of contraceptives, self-medication of pain with over-the-counter analgesics, and diagnostic errors."}
The fact that 66.4% of women reported having changed their eating habits after an endometriosis diagnosis suggests a significant impact of the disease on women's perception of nutrition and health (14). The reported dietary choices, such as gluten-free, anti-inflammatory, Mediterranean, and ketogenic diets, indicate that women are exploring various dietary approaches to manage symptoms and improve their quality of life. The analysis of dietary choices based on the stage of the disease revealed significant differences. Women with severe endometriosis (stage IV) seem to more frequently follow an anti-inflammatory diet while eliminating foods high in saturated fats and simple sugars. These results may indicate an attempt to manage the inflammation associated with severe endometriosis. Simultaneously, greater adherence to an anti-inflammatory diet could reflect a response to the severity of symptoms and the need to address inflammatory processes. On the other hand, differences in dietary choices could also be influenced by increased awareness among women of the effect of nutrition on health. The results of our study are consistent with the current understanding in this field.
An Italian retrospective study examined the effects of a gluten-free diet on symptoms associated with endometriosis (23). At the 12-month follow-up, 52% of patients reported significant improvements in pain compared to the baseline (23). Interestingly, about 30% of patients did not adhere to the gluten-free diet (23). A gluten-free diet may be beneficial for patients suffering from abdominal pain related to the gastrointestinal tract, constipation, bloating, and suspected visceral hypersensitivity. However, adherence to such diets may be compromised due to financial constraints and inherent difficulties. Our study found that the anti-inflammatory diet was more commonly followed by women with the disease at a severe stage. Although popular, there is currently insufficient scientific evidence to support the role of this diet in the management of endometriosis.
A single-arm study conducted in Australia examined the effects of the Mediterranean diet on pain associated with endometriosis (43). The patients adhered to a specific diet including fruits, fresh vegetables, fatty fish, white meat, soy-based products, whole grain products, magnesium-rich foods, and extra virgin olive oil. Additionally, the Mediterranean diet includes the consumption of numerous spices. Significant pain relief, including improvements in general pain, dysmenorrhea, dyschezia, dyspareunia, and general condition, was observed (43). The Mediterranean diet may relieve pain related to endometriosis through synergistic mechanisms. Extra virgin olive oil and fish have shown anti-inflammatory effects (44, 45). Oleocanthal, present in extra virgin olive oil, has a molecular structure similar to that of ibuprofen and exerts a cyclooxygenase inhibitory effect via the same mechanism (46).
Moreover, the antioxidant effects, the abundant content of fiber and magnesium present in the Mediterranean diet may have positive effects on pelvic pain and inflammation (47, 48). Additionally, certain spices such as onions, rosemary, peppers, ginger, turmeric, and garlic are commonly incorporated into the Mediterranean diet and the anti-inflammatory model. Recent preclinical and clinical studies have confirmed the effectiveness of these spices and their bioactive compounds in preventing and reducing various chronic diseases, including arthritis, asthma, cancer, neurodegenerative disorders, and cardiovascular conditions (49, 50). These spices have the potential to alleviate the inflammatory effects associated with endometriosis.
Our results are consistent with previous studies where participants reported that avoiding or limiting a wide range of nutrients, including dairy products, gluten, soy, sugar, and coffee, helped alleviate their symptoms, while adding fruits or vegetables proved beneficial (51). Several epidemiological studies have linked high consumption of fruits (52), omega-3 fatty acids (15), and dairy products during adolescence (53) to a reduced risk of developing endometriosis. Conversely, high consumption of trans-unsaturated fats (15), red meat (16), and alcohol (54) has been associated with an increased risk, although it remains to be determined whether these factors also influence the symptoms of diagnosed endometriosis. Some participants in our study also adopted a ketogenic diet, which is high in fats, moderate in proteins, and very low in carbohydrates. This diet promotes the production of endogenous ketones as an alternative metabolic fuel source (55). Preclinical studies have demonstrated the positive effects of the ketogenic diet on markers of oxidative stress and inflammation, which is relevant for endometriosis (56–59).
However, there is currently not enough scientific evidence to support the use of this dietary protocol for endometriosis. A controlled prospective study demonstrated the anti-inflammatory effects of a nutraceutical containing vitamin B3, omega-3/6, quercetin, calcium salt, 5-methyltetrahydrofolate, parthenium, and turmeric in women with endometriosis (19). This study revealed significant reductions in pain symptoms and serum levels of CA-125, PGE2, and 17β-estradiol in the group treated with the nutraceutical (19). A small proportion (5%) of women in our questionnaire reported using this nutraceutical to relieve pain. However, due to the uncertainty about the long-term safety of dietary antioxidant supplementation beyond 6 months, prolonged use cannot be recommended (60, 61).
It is important to note that the correlation between changes in eating habits, the stage of endometriosis, and the duration of symptoms suggests that certain dietary adjustments may be adaptive responses to the severity of symptoms or the progression of the disease. The negative effect of the disease on women's daily lives is evident in the study results and is consistent with the findings of other scientific studies (7, 8, 10, 11, 15). The attitude of minimizing symptoms by family and friends may contribute to an increased emotional burden for women facing misunderstanding. The worsening of quality of life, indicated by difficulties in managing pain and planning daily activities, highlights a range of physical and psychological challenges that women must face, which corresponds to the observations of other studies (7, 8, 10, 11, 15). The prevalence of 22% for chronic fatigue and 13% for depression-anxiety underscores the importance of a comprehensive and integrated approach to managing endometriosis.
The results of our study highlight the need to provide specific nutritional advice to women with endometriosis. Currently, there are no established nutritional guidelines for this clinical condition, emphasizing the need for clinical trials to identify optimal nutritional strategies to alleviate the symptoms of endometriosis.
Our study has several strengths, including the use of an online survey, which facilitated the rapid recruitment of a large sample of women. The participants had various age ranges, education levels, and stages of endometriosis according to the ASRM classification. However, our study also has limitations. Firstly, it is a cross-sectional study.
Secondly, we relied on self-reported data and did not use a food frequency questionnaire or food diary to assess macro- and micronutrient deficiencies or to explore the impact of these conditions using validated questionnaires (38). Furthermore, we categorized the age of the patients; however, we did not set a maximum age limit in this study.
Moreover, we did not investigate anthropometric parameters or the effects of endometriosis diagnosis on the risk of malnutrition. Additionally, there may be a selection bias, as the survey participants were members of the Italian Endometriosis Association, which could indicate a higher level of health awareness compared to the general population.
Nevertheless, despite these limitations, our study generates hypotheses for future investigations. Currently, there is little research available on the effects of dietary modifications on symptoms associated with endometriosis, with only a small number of studies (19, 27, 41–43) addressing this topic. However, several dietary approaches have been proposed as potential strategies to mitigate the progression of endometriosis and improve clinical symptoms. Nevertheless, additional studies are needed to investigate the effectiveness of these dietary interventions.
5. Conclusion
In conclusion, our study shows that dietary changes are commonly used by women with endometriosis as a self-management tool. These women modify various aspects of their diet to relieve their symptoms. However, it remains unknown which specific dietary interventions are effective for women with different types of endometriosis or specific individual characteristics. The results of our study highlight the importance of directing patients towards nutritional counseling to prevent nutritional deficiencies. It is crucial to educate women on the goals and rationale of dietary intervention and to provide advice on nutrients to include or avoid. Future clinical trials investigating the effectiveness of specific diets for women with endometriosis will help tailor individualized dietary approaches for optimal outcomes.
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THE AUTHORS
Ersilia Troiano2 ,4 Santino Mazza3 
Antonia Abbinante5 ,6 Maria Teresa Agneta5 ,6 
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