Study on Chinese patients' views on endometriosis surgery and fertility preservation in the context of declining fertility

This cross-sectional study was conducted in China between October 2023 and May 2024 and included patients with endometriosis recruited by convenience sampling. Diagnosis was based on documented medical records; histological confirmation was not required. This study has been approved by author’ hospital and informed consent was obtained from the participants. The inclusion criteria were: (1) patients diagnosed with endometriosis; (2) voluntary participation; (3) aged between 18 and 45 years old. There were no restrictions regarding assisted reproductive technology (ART) history. Patients who had difficulties in completing the questionnaire were excluded. Data on whether pregnancies were spontaneous or achieved through ART were not collected in this study. However, we assessed participants’ engagement in fertility preservation as part of the practice dimension. The online version of the questionnaire, which included a description of the aims and relevance of the survey, was designed using the Wenjuanxing platform ( www.wjx.cn ). The participants could scan the QR code and complete the questionnaires. The offline distribution was conducted by posting the QR code at consulting room. For those had difficulties in completing electronic questionnaire, a paper-based questionnaire was provided. Participants were allowed to ask for clarification if they had difficulty understanding a question, but any assistance provided was strictly limited to explaining the question format and did not guide or influence their responses. The researchers examined all collected questionnaires for quality control; those completed in an unreasonably short time (under 120 s), exhibiting logical inconsistencies, or containing incomplete responses were deemed invalid. The design of the questionnaire was informed by existing literature and relevant guidelines [ 12 – 15 ]. The questionnaire was refined based on feedback from two senior experts in obstetrics and gynecology, who assessed its content validity. It was then pilot-tested among 28 participants, and the questionnaire demonstrated good internal consistency with a Cronbach’s α of 0.9303. The final version of the questionnaire, presented in Chinese, included 6 sections: demographic characteristics, a doctor-patient relationship scale, a shared decision-making scale, and dimensions of knowledge, attitudes, and practices. The doctor-patient relationship scale assessed the relationship from the patient’s perspective [ 16 ], while the shared decision-making scale [ 17 ] evaluated the degree of the patient’s involvement in treatment decisions. The knowledge dimension comprised 14 questions and 16 items, with responses scored as 2, 1, or 0 depending on the participant’s level of understanding, yielding a total possible score range from 0 to 32. The attitude dimension consisted of 6 questions, utilizing a five-point Likert scale, with scores ranging from 6 to 30. The practice dimension included 4 questions and 8 items, scored as 1 for “yes” and 0 for “no,” allowing for a total score range from 0 to 8. Participants scoring above 80% of the total possible score were categorized as having adequate knowledge, a positive attitude, and proactive practices. Those with scores between 60% and 80% were classified as having moderate levels of knowledge, attitude, and practice, while scores below 60% indicated inadequate knowledge, a negative attitude, and inactive practices [ 18 ]. Statistical analysis was conducted using STATA 17.0 (Stata Corporation, College Station, TX, USA). Continuous variables were described using median (interquartile range, IQR) for non-normally distributed data and mean ± standard deviation (SD) for normally distributed data. Between-group comparisons were performed using Mann-Whitney U test or Kruskal-Wallis test for non-normally distributed variables and t-tests or analysis of variance (ANOVA) for normally distributed variables. Categorical variables were presented as n (%). Spearman correlation analysis was employed to assess the correlations between knowledge, attitude, and practice, Shared Decision-Making Scale and Doctor-Patient Relationship Scale scores. In multivariate analysis for knowledge (K), 50% of the total score (16 points) was used as the cut-off value. Univariate variables with P  < 0.05 were enrolled in multivariate regression. A Two-sided p  < 0.05 were considered statistically significant in this study.

A total of 726 patients were initially invited to participate in the study. Of these, 13 were excluded for completing the questionnaire in an unreasonably short time (within 120 s), 14 were excluded due to logical conflicts (e.g., reporting a higher number of deliveries than pregnancies), and 2 were excluded for incomplete responses. Therefore, 697 valid questionnaires were included in the final analysis. Confirmatory factor analysis (CFA) was conducted to assess construct validity of the questionnaire. The model fit indices showed acceptable levels: RMSEA = 0.088, SRMR = 0.092, TLI = 0.898, and CFI = 0.915, indicating that the factor structure had good construct validity. The mean age was 33.00 ± 6.59 years and the mean number of pregnancies was 1.26 ± 1.40. Among them, 433 (62.12%) were married, 429 (61.55%) lived in rural/suburban areas, 312 (44.76%) had education of college/bachelor’s degree or higher, 540 (77.47%) had endometriosis for not more than 5 years. Additionally, 260 (37.3%) had received surgical treatment, 194 (74.62%) had undergone lesion removal (conservative surgery), 356 (51.08%) had no plan to have children in the future. The median knowledge, attitude, and practice scores were 8 (0–16) (possible range: 0–32), 18 (16–19) (possible range: 6–30), and 1 (1–2) (possible range: 0–8), respectively. Analysis of demographic characteristics revealed that knowledge scores varied significantly based on age, marital status, pregnancy and delivery history, residence type, education level, medical occupation status, monthly income, medical insurance type, surgical treatment history, and surgery type. Meanwhile, their attitude scores were more likely to vary across age, marital status, number of pregnancies, number of deliveries, type of residence, type of medical insurance, and whether plan to have children. Furthermore, their practice scores were more likely to vary depending on: age, marital status, number of deliveries, whether occupation related to medicine, average monthly per capita income, type of medical insurance, surgery type, and plans to have children (all of p  < 0.05) ( Table  1 ) . Among 683 patients who have not received hysterectomy, the KAP scores were 10.00 ± 9.78 (knowledge), 17.74 ± 2.31 (attitude), and 1.96 ± 1.98 (practice), closely mirroring the overall sample scores. Table 1 Demographic characteristics N (%) Knowledge Score Attitude Score Practice Score Median (IQR) P Median (IQR) P Median (IQR) P Total Score 8 (0–16) 18 (16–19) 1 (1–2) Age (years) 33.00 ± 6.59 0.006 < 0.001  30 443 (63.56) 14 (6.5–23) 18(16–20) 1 (1–3) Marital status 0.001 0.001 < 0.001  Others 264 (37.88) 11 (3–18) 17 (16–19) 1 (1–1)  Married 433 (62.12) 6 (0–15) 18 (16–19) 1 (1–2) History of pregnancies 1.26 ± 1.40 < 0.001 < 0.001 0.135  0 278 (39.89) 12 (3–18) 17 (16–18) 1 (1–2)  1 146 (20.95) 8.5 (0–16) 18 (16–20) 1 (1–2)  2 165 (23.67) 5 (0–14) 18 (17–19) 1 (1–3)  3 108 (15.49) 5 (0–20) 18 (16.5–19.5) 1 (1–4) History of deliveries 0.91 ± 1.00 < 0.001 < 0.001 0.001  0 325 (46.63) 11 (2–17) 17 (16–18) 1 (1–1)  1 162 (23.24) 9 (3–21) 18 (17–20) 1.5 (1–3)  2 167 (23.96) 4 (0–14) 18 (17–20) 1 (1–2)  3 43 (6.17) 2 (0–10) 18 (18–20) 1 (1–3) Residence < 0.001 0.003 0.375  Rural or suburban 429 (61.55) 5 (0–14) 18 (16–18) 1 (1–2)  Urban 268 (38.45) 13 (0–22) 18 (16–19) 1 (1–2) Education < 0.001 0.586 0.906  Primary school and below 124 (17.79) 4 (0–5) 18 (17–18) 1 (1–2)  Middle school and technical school 261 (37.45) 5 (0–13) 18 (16–18) 1 (1–2)  College and above 312 (44.76) 14 (4–22) 18 (16–19) 1 (1–2) Occupation related to medicine < 0.001 0.394 < 0.001  Yes 161 (23.10) 16 (2–26) 18 (16–19) 2 (1–4)  No 536 (76.9) 5 (0–14) 18 (16–19) 1 (1–1) Monthly income , CNY < 0.001 0.622 0.034  < 2000 ( 10,000 (> 1400 USD) 69 (9.90) 20 (4–26) 18 (16–20) 1 (1–3) Medical insurance 0.013 0.026 0.011  Yes 578 (82.93) 11 (0–16) 18 (16–19) 1 (1–2)  No 119 (17.07) 4 (0–13) 18 (16–18) 1 (1–1) Disease course of endometriosis (years) 4.09 ± 4.36 0.279 0.139 0.767  ≤ 5 540 (77.47) 8 (0–16) 18 (16–19) 1 (1–2)  > 5 157 (22.53) 7 (4–16) 18 (16–19) 1 (1–2) Surgical treatment for endometriosis < 0.001 0.471 0.098  Yes 260 (37.3) 14 (4–21) 18 (16–19) 1 (1–2)  No 437 (62.7) 5 (0–13) 18 (16–19) 1 (1–2) Surgery type < 0.001 0.528 0.029  Lesion excision (conservative surgery) 194 (74.62) 15 (7–22) 18 (16–19) 1 (1–2)  Hysterectomy 3 (1.15) - - -  Hysterectomy with bilateral salpingectomy 11 (4.23) 23 (13–28) 16 (15–20) 3.5 (2.5-4)  Unclear 52 (20.00) 4 (4–12) 18 (18–18) 1 (1-1.5) Plan to give birth 0.619 < 0.001 0.012  Yes 341 (48.92) 8 (1–16) 17 (16–18) 1 (1–2)  No 356 (51.08) 8 (0-16.5) 18 (17–20) 1 (1–3) Demographic characteristics The distribution of knowledge dimensions shown that the three questions with the highest number of participants choosing the “Do Not Understand” option were “Assisted reproductive technology (ART) can be used to treat infertility associated with endometriosis.” (K12) with 63.41%, “Fertility preservation refers to preserving the ability of individuals at risk of infertility to produce offspring with genetic inheritance through methods such as medication or surgery.” (K9) with 62.55%, and “Before and after surgical treatment for endometriosis, fertility should be assessed.” (K11) with 60.83%. In addition, more than 76% of participants reported that they do not understand about several methods or technologies for fertility preservation (K14) ( Table  2 ) . Table 2 Knowledge Knowledge N (%) Understand Partially Understand Do Not Understand 1. Endometriosis is characterized by the ectopic growth of endometrial tissue on structures external to the uterus , such as the ovaries or the uterine surface. 183 (26.26) 250 (35.87) 264 (37.88) 2. Endometriosis is related to estrogen and is common in women of childbearing age. 170 (24.39) 240 (34.43) 287 (41.18) 3. The symptomatic spectrum of endometriosis includes dysmenorrhea , chronic pelvic pain , dyspareunia , postcoital pain , and gastrointestinal symptoms that coincide with menstrual cycles. 190 (27.26) 254 (36.44) 253 (36.3) 4. Endometriosis may have no symptoms. 142 (20.37) 201 (28.84) 354 (50.79) 5. Diagnosis of endometriosis is predominantly based on imaging techniques , including ultrasound and magnetic resonance imaging (MRI). 183 (26.26) 215 (30.85) 299 (42.9) 6. The therapeutic objectives for endometriosis involve reducing and eliminating lesions , alleviating pain , enhancing fertility , and minimizing recurrence. 159 (22.81) 191 (27.4) 347 (49.78) 7. Endometriosis management encompasses both medical and surgical interventions , with medical approaches primarily utilizing anti-inflammatory medications , oral contraceptives , and hormonal therapies. 136 (19.51) 206 (29.56) 355 (50.93) 8. The purpose of surgical treatment for endometriosis includes removing lesions , restoring anatomy , and promoting fertility. 139 (19.94) 183 (26.26) 375 (53.8) 9. Surgical options for endometriosis include lesion excision surgery , hysterectomy , and hysterectomy with bilateral salpingectomy , with lesion excision considered a conservative approach suitable for younger patients or those wishing to preserve fertility. 154 (22.09) 134 (19.23) 409 (58.68) 10. Endometriosis is associated with infertility. 204 (29.27) 163 (23.39) 330 (47.35) 11. Fertility assessments are recommended before and after the surgical management of endometriosis. 137 (19.66) 136 (19.51) 424 (60.83) 12. Assisted reproductive technology (ART) can be used to treat infertility associated with endometriosis. 110 (15.78) 145 (20.8) 442 (63.41) 13. Fertility preservation encompasses strategies to maintain the reproductive capabilities of individuals at risk of infertility through pharmacological or surgical means. 104 (14.92) 157 (22.53) 436 (62.55) 14. Familiarity with various fertility preservation technologies is queried , including : - Cryopreservation of mature oocytes 64 (9.18) 97 (13.92) 536 (76.9) - Cryopreservation of ovarian tissue 42 (6.03) 62 (8.9) 593 (85.08) - Cryopreservation of embryos 76 (10.9) 90 (12.91) 531 (76.18) Knowledge Responses to the attitude dimension showed that 50.79% (12.20% strongly agree and 38.59% agree) were worried that surgical treatment might affect future fertility (A1), 53.38% (13.49% strongly agree and 39.89% agree) were worried that surgical treatment would not cure the disease (A2), and 32.13% (10.04% strongly agree and 22.09% agree) and 33.86% (9.47% strongly agree and 24.39% agree) were worried that children born through assisted reproduction (A4) and relying on fertility preservation (A6) would not be as healthy as those children who were conceived naturally, respectively ( Table  3 ) . Table 3 Attitude Attitude Strongly Agree Agree Neutral Disagree Strongly Disagree 1. Concerns exist regarding the potential impact of surgical treatments on future fertility. N 85 (12.2) 269 (38.59) 284 (40.75) 47 (6.74) 12 (1.72) 2. I am concerned that surgical treatment may not cure my disease. N 94 (13.49) 278 (39.89) 279 (40.03) 36 (5.16) 10 (1.43) 3. Confidence is expressed in medical professionals to select the most appropriate treatment plan. 175 (25.11) 286 (41.03) 227 (32.57) 1 (0.14) 8 (1.15) 4. I worry that children born through assisted reproduction may not be as healthy as naturally conceived children. N 70 (10.04) 154 (22.09) 384 (55.09) 71 (10.19) 18 (2.58) 5. The necessity of employing technological methods for fertility preservation is acknowledged. 90 (12.91) 229 (32.86) 354 (50.79) 16 (2.3) 8 (1.15) 6. There is worry that children born from fertility preservation techniques may not be as healthy as those conceived naturally. N 66 (9.47) 170 (24.39) 389 (55.81) 60 (8.61) 12 (1.72) “N” indicated the item was scored reversely Attitude “N” indicated the item was scored reversely When it comes to related practices, 65.28% did not consult their doctors about fertility preservation (P1) and more than 91% of the participants did not consult their doctors about any fertility preservation techniques (P2). Also, 87.66% had not received a fertility assessment (P3) and more than 92% of the participants had not received any fertility preservation technique (P4) ( Table  4 ) . Table 4 Practice Practice Yes No 1. Have you consulted a doctor regarding fertility preservation? 242 (34.72) 455 (65.28) 2. Have you discussed the following fertility preservation techniques with a doctor? - Freezing mature eggs 30 (5.83) 485 (94.17) - Freezing ovarian tissue 31 (6.02) 484 (93.98) - Freezing embryos 42 (8.16) 473 (91.84) 3. Have you undergone fertility assessment? 86 (12.34) 611 (87.66) 4. Have you undergone any of the following fertility preservation techniques? - Cryopreservation of mature oocytes 28 (5.89) 447 (94.11) - Cryopreservation of ovarian tissue 24 (5.05) 451 (94.95) - Cryopreservation of embryos 35 (7.37) 440 (92.63) Practice The multivariate logistic regression included history of deliveries, residence, education, occupation, monthly income, and history of surgical treatment. The result showed that 2 times of deliveries or more (OR = 0.47, 95% CI: [0.27,0.84], p  = 0.011), lived in rural/suburban (OR = 1.92, 95% CI: [1.22,3.01], p  = 0.005), with occupation not related to medicine (OR = 0.19, 95% CI: [0.12,0.29], p  < 0.001), with average monthly per capita income of more than 10,000 yuan (OR = 2.71, 95% CI: [1.05,6.98], p  = 0.039), and never undergone surgical treatment for endometriosis (OR = 0.33, 95% CI: [0.21,0.51], p  < 0.001) were independently associated with knowledge ( Table  5 ) . These associations remained significant after adjusting for education level, which was included as a covariate in the regression model. Table 5 Factors associated with participants’ knowledge Knowledge Univariate Analysis Multivariate Analysis OR (95%CI) P OR (95%CI) P Age (years) 0.98(0.95,1.00) 0.206 Marital status  Others -  Married 0.75(0.52,1.07) 0.120 History of pregnancies  0 -  1 0.95(0.60,1.51) 0.843  2 or more 0.70(0.46,1.05) 0.086 History of deliveries  0 - -  1 1.19(0.78,1.81) 0.414 0.82(0.49,1.36) 0.448  2 or more 0.48(0.30,0.76) 0.002 0.47(0.27,0.84) 0.011 Residence  Rural or suburban - - - -  Urban 2.97(2.06,4.27) < 0.001 1.92(1.22,3.01) 0.005 Education  Primary school and below - -  Middle school and technical school 1.42(0.74,2.72) 0.288 1.09(0.53,2.24) 0.812  College and above 4.04(2.21,7.39) < 0.001 1.53(0.71,3.29) 0.269 Occupation related to medicine  Yes - - - -  No 0.17(0.12,0.26) < 0.001 0.19(0.12,0.29) < 0.001 Monthly income , CNY   10,000 8.82(3.91,19.9)  5 0.78(0.50,1.21) 0.278 Surgical treatment for endometriosis  Yes - - - -  No 0.33(0.23,0.48) < 0.001 0.33(0.21,0.51) < 0.001 Plan to give birth  Yes - -  No 1.26(0.88,1.80) 0.190 Factors associated with participants’ knowledge The mean doctor-patient relationship score was 60.30 ± 10.43. Notably, 43.76% of participants did not highly expect their symptoms to disappear (R15), 39.74% lacked confidence in managing their symptoms independently (R14), and 32.28% doubted physicians’ ability to timely recognize their difficulties in dealing with illness (R6) (Table S1 ). The mean shared decision-making score of the participants was 35.99 ± 6.48, 33% reported that the doctor did not specifically ask them about the most preferred treatment option (M6), 33.57% reported that the doctor did not fully weigh the different treatment options with them (M7), and 33.86% reported that they had not reached a consensus with the doctor about the subsequent treatment arrangements (M9) (Table S2 ). Correlation analysis showed that knowledge was correlated with practice ( r  = 0.2969, p  < 0.001), shared decision-making ( r  = 0.2571, p  < 0.001), and doctor-patient relationship ( r  = 0.2973, p  < 0.001). Practice was correlated with shared decision-making ( r  = 0.235, p  < 0.001) and doctor-patient relationship ( r  = 0.2002, p  = 0.0011). Meanwhile, there was also a correlation between shared decision-making and doctor-patient relationship ( r  = 0.93, p  < 0.001). However, attitude was not correlated with any of the other factors (Table S3). To address concerns about reproductive intentions among patients, a subgroup analysis of participants who reported a plan to give birth ( n  = 341) was performed. Their knowledge, attitude, and practice scores were 10.12 ± 9.37, 17.26 ± 2.18, and 1.65 ± 1.48, respectively. These results highlight that even among patients actively planning to conceive, knowledge gaps and low engagement with fertility preservation remain evident. Furthermore, item-level analysis showed similar trends to the full cohort. In terms of knowledge, the items with the highest “Do Not Understand” rates remained: “ART can be used to treat infertility associated with endometriosis” (62.46%), “Fertility preservation refers to preserving reproductive ability through methods such as medication or surgery” (60.12%), and “Fertility should be assessed before and after endometriosis surgery” (59.82%) (Table S4). For attitude, 53.66% of this subgroup expressed concern that surgery might not cure the disease, while 30.79% worried about the health of children born through ART (Table S5). In terms of practice, 88.56% had never received a fertility assessment, and 91.20% had not undergone any form of fertility preservation (Table S6).

Endometriosis is characterized by the presence of endometrial glands and stroma outside the uterus, commonly affecting the pelvis, ovaries, and fallopian tubes [ 1 ]. This condition triggers an inflammatory response marked by angiogenesis, fibrosis, and sensory neuron innervation, resulting in severe symptoms such as pelvic pain, dysmenorrhea, dyspareunia, chronic pain, fatigue, and infertility. It predominantly affects women from menarche to menopause [ 2 ]. As a progressive disease, endometriosis significantly affects women’s well-being and is linked to infertility in 5–10% of the general population and up to 50% of infertile women [ 3 , 4 ]. Surgical intervention may offer temporary symptom relief and improve natural conception prospects [ 5 ]. However, post-surgical recurrence rates range between 5 and 25%, and pain symptoms may persist despite surgical treatment. While surgery can remove ectopic lesions, it does not necessarily eliminate the inflammatory and neuropathic mechanisms contributing to chronic pelvic pain in endometriosis patients [ 6 ]. Nevertheless, the role of conservative surgery in the management of endometriosis remains uncertain and continues to be debated among experts. Endometriosis can adversely affect fertility through multiple mechanisms, including distortion of reproductive anatomy, diminished ovarian reserve, and reduced quality of oocytes and embryos, compounded by iatrogenic damage during surgery [ 7 ]. However, fertility outcomes are also influenced by additional co-factors, particularly the patient’s age at diagnosis. Advanced maternal age is associated with a natural decline in ovarian reserve and oocyte quality, which, when combined with the detrimental effects of endometriosis, further exacerbates fertility challenges [ 8 ]. Given the potential impact of endometriosis and its treatment on fertility, and the generally favorable outcomes of IVF in selected patients, fertility preservation may be considered on an individual basis particularly for women at high risk of diminished ovarian reserve, rather than being routinely recommended for all patients. Techniques such as oocyte or embryo cryopreservation and ovarian tissue freezing are viable options [ 7 ]. The Knowledge Attitude, and Practice (KAP) theory, foundational to understanding human health behaviors, asserts that knowledge positively influences attitudes, which in turn shape practices [ 9 ]. Employed extensively in healthcare, the KAP model assesses the knowledge, attitudes, and practices of specific populations, evaluating the demand for and acceptance of health-related interventions [ 10 ]. Given the profound impact of endometriosis on women’s reproductive health and quality of life, there is a pressing need to explore how patients understand and approach treatment options, including surgical interventions and fertility preservation. Early diagnosis is crucial, as delayed recognition of endometriosis can lead to prolonged symptom burden, disease progression, and reduced fertility potential. Studies have shown that many women experience diagnostic delays due to the normalization of symptoms such as dysmenorrhea and chronic pelvic pain, which can result in missed opportunities for timely intervention [ 11 ]. Increasing awareness among healthcare providers and patients may facilitate earlier diagnosis, enabling better symptom management and fertility preservation strategies Such research is particularly vital in regions like China, where studies in this area are sparse. This study aims to fill a critical gap in clinical practice by investigating the KAP of patients with endometriosis regarding surgical treatment and fertility preservation in the specified region. Through this research, we seek to enhance patient education, promote informed decision-making, and develop tailored treatment strategies that align with the patients’ health and reproductive objectives, thereby improving outcomes for this distinct population.

This study reveals that patients with endometriosis in China exhibit inadequate knowledge, generally negative attitudes, and passive practices towards surgical treatment and fertility preservation. Clinicians should prioritize targeted education on endometriosis and fertility preservation. Improving doctor-patient communication and shared decision-making may increase patient engagement. Among the most prominent symptoms of endometriosis, dysmenorrhea remains a key indicator of disease severity, yet it is often underestimated and inadequately addressed in clinical practice. Despite its significant impact on quality of life, previous studies have reported that some patients and even healthcare providers may consider dysmenorrhea as a normal menstrual discomfort rather than a pathological condition requiring medical intervention [ 19 ]. This misperception has been suggested to contribute to delays in diagnosis and treatment in the literature. Conservative surgical interventions, such as lesion excision, play an important role in the management of endometriosis, particularly for symptom relief and improving fertility outcomes. While surgery is effective in removing visible lesions and may restore pelvic anatomy, it does not always result in complete symptom resolution. Studies have shown that 15–40% of patients may continue to experience pain despite surgical excision of endometriotic tissue [ 20 ]. This may be due to the complex pathophysiology of endometriosis-associated pain, involving not only anatomical factors but also neuroinflammatory and central sensitization mechanisms that surgery alone may not fully address [ 21 ]. Therefore, surgery should be considered as part of a multimodal treatment strategy that also incorporates medical therapy and patient education to optimize outcomes. A variety of factors may explain why the majority of patients did not undergo surgery, including mild symptoms, preference for medical management, financial burden, limited access to specialist care, or concerns about surgical risks [ 5 , 22 ]. This study revealed critical insights into the relationship between KAP among patients with endometriosis. The correlation analyses results revealed a robust correlation between knowledge and both practice and shared decision-making. These finding supports the notion that increased knowledge enhances patient involvement in their treatment decisions and adherence to recommended practices [ 23 , 24 ]. Despite these positive correlations, it is noteworthy that attitudes did not show significant correlations with knowledge, practice, or shared decision-making in our study. This suggests that while educational interventions might enhance knowledge and influence behaviors, they do not necessarily alter patients’ attitudes towards endometriosis and fertility preservation. This absence of correlation might reflect deeper, perhaps psychological or cultural, factors influencing attitudes that are not easily modified by increased knowledge alone. This finding suggests that while educational efforts are important, addressing underlying psychological or sociocultural influences may be necessary to effectively shift patient attitudes. It is worth noting that 51.08% of participants reported no plan to conceive in the future. China’s declining birth rate in recent years, coupled with rising economic pressures and the high cost of child-rearing, may contribute to a broader societal trend of reduced fertility intentions [ 25 ]. Therefore, this finding may reflect macroeconomic and demographic influences rather than individual medical circumstances alone. Significant differences across various demographic and clinical variables were observed. Patients with multiple deliveries showed lower knowledge scores, potentially because these individuals might feel they have sufficient experience managing their condition, thus engaging less with new information. This result is supported by the multivariate logistic regression, indicating fewer childbirths correlate with higher knowledge. This study also found that younger patients scored significantly higher on knowledge but lower on attitude and practice. One possible explanation is that younger patients have more varied channels for acquiring information yet face less pressure regarding childbearing. Patients living in urban areas demonstrated higher knowledge and attitude scores compared to those from rural or suburban areas. This may reflect better access to medical resources, higher health literacy, and greater exposure to fertility-related education in urban settings [ 26 ]. These factors likely contribute to increased awareness and understanding of endometriosis and fertility-related topics. However, this trend is not necessarily generalizable to other countries, particularly developed nations, where ART access is often more dependent on financial capacity and health literacy rather than cultural imperatives. Future comparative studies across different Asian and Western populations could help disentangle the effects of cultural norms versus systemic healthcare factors, such as access to ART, insurance policies, and provider-patient communication models. Such research would offer valuable insights into tailoring fertility education and counseling strategies across diverse cultural and healthcare settings. In high-income settings, ART utilization is more commonly observed among individuals with higher education and socioeconomic status, reflecting differences in healthcare accessibility and policy frameworks [ 27 ]. This can be attributed to the less invasive nature of such surgeries, which may result in fewer psychological and physical repercussions, thereby enabling patients to maintain a higher level of engagement in their health management [ 28 ]. Our analysis further highlighted occupation-related differences; non-medically affiliated patients displayed significantly lower knowledge, an observation supported by the regression analysis, indicating the influence of medical literacy on disease comprehension. Income also played a pivotal role, with higher earners exhibiting better knowledge and practices, possibly due to better access to resources and healthcare [ 29 ]. Moreover, our findings around surgical history underscore the complexity of patient engagement with treatment options. Patients who had undergone surgery showed better knowledge, which could be attributed to pre-surgical counseling and educational interventions [ 30 ]. However, specific types of surgery were not uniformly associated with higher practice scores, suggesting that the type of intervention might not directly influence how patients manage their condition post-surgery. The doctor-patient relationship scale indicates a generally positive dynamic, with good mutual understanding and trust. However, improvements are needed in patient confidence regarding long-term disease management and clearer communication about realistic recovery expectations. Moreover, while shared decision-making involves patients, the clarity and depth of discussions could be enhanced. These findings are consistent with those of a previous study, which reported that only 31% of women with endometriosis had discussed fertility issues with their doctors, despite a desire for more information. Furthermore, only a minority (27%) of the women believed they had a comprehensive understanding of the options available for preserving fertility [ 22 ]. The analysis of knowledge levels among patients with endometriosis shows a considerable gap in understanding key aspects of the disease and its treatment, particularly regarding surgical options and fertility preservation. For instance, a significant proportion of patients lacked a comprehensive understanding of how endometriosis is diagnosed and the purposes of various surgical treatments. Similar patterns have been observed in patients with chronic diseases such as diabetes or chronic kidney disease, where low health literacy and limited disease-specific knowledge are common [ 9 , 31 ]. This indicates that poor knowledge may be a systemic issue in chronic disease care, underscoring the need for more consistent, disease-specific education and communication strategies across medical specialties. This low level of understanding may be attributed to several factors. First, fertility preservation is a relatively specialized concept that is not routinely addressed in standard gynecological consultations, especially for patients who do not actively express fertility concerns. Second, awareness of ART and its applications remains limited among the general population, particularly among those with lower educational or socioeconomic status. Third, current public health education rarely emphasizes fertility-related knowledge, which may explain why terms like “oocyte cryopreservation” or “fertility assessment” are unfamiliar to many patients. To address these knowledge gaps effectively, it is crucial to develop specialized educational programs for healthcare providers, especially in less urban areas where misconceptions may persist due to lack of resources or updated training. These programs should focus on the latest diagnostic techniques and treatment modalities, emphasizing the importance and specifics of fertility-preserving surgical options such as lesion excision surgery. These education programs should utilize both digital and in-person formats to ensure wide accessibility, particularly in settings where traditional outreach might be limited [ 32 , 33 ]. The attitudes of patients toward surgical treatment and fertility issues show a mix of concern and trust, with a notable number of patients expressing worry about the impact of treatments on their fertility and the health of children born through assisted reproduction. This reflects a broader anxiety that is often associated with endometriosis treatments, similar to previous study, which reported that anxieties can negatively impact treatment decisions [ 34 ]. Notably, there were a subtle difference between the concerns about children health after ART or specific to fertility preservation. These findings indicate a potential need for education on the overall concept of ART. In addition, future longitudinal studies are warranted to assess how shifts in patient knowledge, attitudes, and practices influence actual treatment adherence and fertility outcomes. Such designs would allow for better evaluation of the long-term effectiveness of educational and shared decision-making interventions in endometriosis care. Clear, empathetic counseling and periodic workshops or Q\&A sessions could be provided to address patient concerns about treatment and fertility [ 35 , 36 ]. Practical engagement with fertility preservation techniques is notably low among the study participants, with the majority not consulting about or undergoing recommended fertility preservation procedures. This lack of engagement could be influenced by inadequate knowledge or negative attitudes, as discussed previously. Based on the identified gaps, we propose several policy recommendations. First, fertility preservation counseling should be integrated into national endometriosis care guidelines to encourage early reproductive planning. Second, expanding insurance coverage or financial support for fertility preservation could help reduce economic barriers. Third, public health campaigns tailored to cultural contexts are needed to address misconceptions about ART and fertility preservation, especially in rural or low-income areas. Lastly, provider training should emphasize patient-centered communication and shared decision-making to improve counseling quality. It is noteworthy that our study was conducted against the backdrop of a sustained decline in fertility in China. In this context, women with endometriosis, who often experience chronic pain, may bear disproportionate reproductive and psychosocial burdens that could further aggravate fertility challenges. These circumstances make early, proactive, and targeted patient education, fertility counselling, and the provision of fertility-preserving options, where appropriate, particularly urgent. This study has several limitations. Its cross-sectional design prevents causal inferences between KAP and treatment outcomes. We also did not collect data on prior use of ART, which could influence attitudes and practices toward fertility preservation. Additionally, cost-related concerns and detailed cultural/religious beliefs were not assessed, which may represent important factors in treatment decision-making. Furthermore, we did not assess sexual function and bowel-related symptoms, which are important manifestations of endometriosis that can significantly impact patient quality of life and treatment decisions [ 37 , 38 ]. Future longitudinal studies are warranted to evaluate how changes in educational exposure or clinical counseling may influence patient knowledge, attitudes, and practices over time. This also prevented us from further investigating the specific gaps in shared decision-making. Moreover, use of a self-administered questionnaire may have introduced recall or social desirability bias. Additionally, the use of convenience sampling and unrecorded refusal rates may have introduced sampling and participation bias. Furthermore, participants with low literacy levels or limited access to technology were excluded due to the self-administered questionnaire format, which may reduce the generalizability of our findings, especially to underrepresented or rural populations. The high proportion of respondents who reported no plan for future pregnancies may have influenced the fertility-related responses and potentially limited the applicability of our findings to populations actively seeking fertility. Patients with low literacy or older age who had difficulties in completing the questionnaire were excluded, potentially leading to selection bias. The questionnaire’s internal consistency was good, but the pilot sample was small, which may limit generalizability. The high proportion of women not planning to conceive may limit applicability to fertility-focused populations; however, subgroup analyses among those planning childbirth showed consistent findings. We also did not collect data on prior use of ART, which could influence attitudes. Finally, the attitude dimension included only six items and key barriers such as cost or cultural beliefs were not directly assessed, which may not fully capture the complexity of beliefs and emotions related to endometriosis and fertility. Additionally, the attitude dimension included only six items and may not have adequately captured emotional or cultural beliefs. Future studies should consider expanding this dimension to improve its sensitivity and relevance.

In conclusion, patients with endometriosis exhibited insufficient knowledge, moderate attitudes, and less proactive practices concerning surgical treatment and fertility preservation, despite their varied demographic characteristics. Given the direct correlation between patient knowledge and practice behaviors, healthcare providers should implement customized educational programs. These programs should address the specific needs and circumstances of different patient subgroups, thereby enhancing informed decision-making and improving overall patient outcomes in the management of endometriosis.

Supplementary Material 1. Supplementary Material 1. Supplementary Material 2. Supplementary Material 2.