Background: Endometriosis is a chronic gynecological disorder characterized by the presence of endometrial-like tissue outside the uterus, leading to chronic pelvic pain, infertility and impaired quality of life. Normalization of severe menstrual pain and cultural stigmas contribute to delayed diagnosis and ongoing suffering among women. This study aimed to assess public knowledge of endometriosis and examine factors contributing to misdiagnosis and treatment delays among women in Kangra. Materials and Methods:A descriptive, cross-sectional online survey was conducted from January to March 2025 among women aged 18–45 years residing in Kangra district. A structured, bilingual (Hindi and English) questionnaire was distributed digitally, assessing socio-demographic characteristics, symptom awareness, knowledge of endometriosis and healthcare-seeking behaviors. A total of 400 participants completed the survey. Data were analyzed using IBM SPSS version 26.0, with descriptive statistics summarizing awareness levels. Knowledge scores were categorized into four groups: Very Good (≥80%), Good (60–79%), Fair (40–59%) and Poor (<40%). Results:Among participants, the majority were aged 26–35 years (44.5%) and had completed secondary (40.5%) or undergraduate (34.5%) education. Although 79.0% correctly identified endometriosis as the abnormal growth of uterine tissue outside the uterus and 80.0% recognized chronic pelvic pain as a major symptom, misconceptions persisted. Only 62.8% knew that laparoscopy is the definitive diagnostic method and 61.5% correctly acknowledged the typical 7–10 year diagnostic delay. In total, 34.0% demonstrated Very Good awareness, 42.5% had Good awareness, 18.5% had Fair awareness and 5.0% had Poor awareness. A significant proportion (around 25%) still normalized severe menstrual pain, highlighting ongoing stigma and gaps in health literacy. Conclusion: While foundational awareness of endometriosis was encouraging among women in Kangra, critical gaps and misconceptions remain, particularly regarding diagnosis timelines and management options. The normalization of menstrual pain persists as a significant barrier to timely healthcare-seeking behavior. Community-level health education, stigma reduction initiatives and targeted public health interventions are essential to promote early recognition, accurate diagnosis and better outcomes for women suffering from endometriosis in rural India.
Endometriosis is a chronic, often debilitating gynecological condition characterized by the presence of endometrial-like tissue outside the uterus, leading to inflammation, scarring and severe pain. Despite affecting an estimated 10–15% of women of reproductive age globally, endometriosis remains one of the most misunderstood and misdiagnosed conditions in women’s health. The disease can manifest through a spectrum of symptoms, including chronic pelvic pain, dysmenorrhea (painful periods), dyspareunia (pain during intercourse), gastrointestinal disturbances and infertility. However, the normalization of period pain and a general lack of awareness contribute to prolonged diagnostic delays-often ranging between 7 to 10 years from symptom onset to diagnosis [1-3].
In many regions of the world, particularly in rural and semi-urban settings like Kangra district in Himachal Pradesh, menstrual and pelvic pain are frequently dismissed as a normal aspect of womanhood. Cultural stigmas surrounding menstruation, limited access to gynecological healthcare and the societal trivialization of women's pain exacerbate the silence surrounding endometriosis. As a result, women endure chronic symptoms without appropriate medical intervention, facing significant deterioration in quality of life, mental health issues and compromised reproductive health outcomes [4-6].
The importance of timely recognition and diagnosis of endometriosis cannot be overstated. Early intervention can significantly reduce disease progression, mitigate chronic pain and preserve fertility. Yet, public knowledge about endometriosis remains woefully inadequate. Misconceptions, low health literacy and a lack of community-level awareness programs further fuel misdiagnosis, underreporting and a cycle of suffering among women who are conditioned to endure pain without seeking help [7-9].
While studies from urban centers have gradually begun to shed light on the burden of endometriosis, there is a dearth of research focusing on awareness levels among women in rural areas like Kangra. Understanding community perceptions, attitudes toward pelvic pain and barriers to seeking care is critical for developing targeted educational interventions, promoting early diagnosis and challenging harmful cultural narratives that normalize chronic pain.
This study aims to assess public awareness about endometriosis among women in Kangra, with a particular focus on the recognition of chronic pelvic pain and the dangers of normalizing period pain. By identifying knowledge gaps and the factors contributing to misdiagnosis, this research seeks to inform public health strategies that prioritize women's reproductive health rights, dismantle stigma and advocate for timely and accurate healthcare access.
Study Design
A descriptive, cross-sectional online survey was conducted to assess public awareness regarding endometriosis, particularly the recognition of chronic pelvic pain and the normalization of period pain, among women residing in Kangra district, Himachal Pradesh.
Study Area and Population
The study targeted women aged 18 to 45 years living in Kangra district. Eligible participants were those who had experienced menstrual cycles, could comprehend Hindi or English, had access to an internet-enabled device and were willing to provide informed electronic consent.
Study Duration
Data collection was undertaken over a period of three months, from January to March 2025.
Sample Size and Sampling Technique
Assuming a 50% awareness level regarding endometriosis (due to lack of prior rural data), a 95% confidence level and a 5% margin of error, the minimum required sample size was calculated to be 384 participants. To account for incomplete or invalid submissions, a final target of 400 completed responses was set. Participants were recruited through a convenience sampling method by distributing the survey link across various digital platforms, including WhatsApp women's groups, Facebook health communities, Instagram pages and local Kangra-based online forums.
Inclusion and Exclusion Criteria
Inclusion Criteria:
Women aged 18–45 years
Residents of Kangra district
Experience of menstruation
Ability to comprehend Hindi or English
Access to an internet-connected device (smartphone, tablet, or computer)
Willingness to provide informed electronic consent
Exclusion Criteria:
Women with a prior confirmed diagnosis of endometriosis (to focus on undiagnosed/misdiagnosed awareness)
Pregnant women at the time of survey participation.
Participants unwilling or unable to complete the questionnaire
Data Collection Instrument
A structured, bilingual (Hindi and English) pre-validated questionnaire was developed and hosted on Google Forms. The questionnaire was divided into four sections:
Socio-Demographic Data: Age, education level, occupation, marital status and healthcare access
Symptom Awareness: Understanding of chronic pelvic pain, period pain, gastrointestinal symptoms and infertility
Knowledge about Endometriosis: Awareness of causes, risk factors, common misconceptions and the impact on quality of life
Healthcare-Seeking Behavior: Patterns in seeking gynecological care, past experiences with diagnosis and perception of period pain normalization
One point for each correct answer
The questionnaire was pilot-tested with 30 women from the target demographic (excluded from the final analysis) to ensure cultural relevance, clarity and ease of understanding.
Data Collection Procedure
Participants accessed the Google Form link distributed digitally. The introductory page provided detailed information about the study objectives, assured anonymity, explained voluntary participation and included an electronic consent form. Google Forms was configured to accept only one submission per participant to maintain data integrity. No personally identifiable information was collected to ensure confidentiality.
Scoring and Categorization
Responses to knowledge-based questions were scored:
Scores were categorized into awareness levels:
Very Good Awareness: ≥80% correct answers
Good Awareness: 60–79% correct answers
Fair Awareness: 40–59% correct answers
Poor Awareness: <40% correct answers
Separate analysis was also done to assess the proportion of women normalizing chronic pelvic pain without seeking medical help.
Data Analysis
Survey responses were exported into Microsoft Excel and analyzed using IBM SPSS version 26.0. Descriptive statistics, including frequencies, percentages and means, were calculated to summarize socio-demographic characteristics and awareness levels.
The majority of participants were between 26–35 years of age (44.5%), followed by 18–25 years (26.0%) and 36–45 years (29.5%). In terms of educational background, most women had completed secondary education (40.5%) or an undergraduate degree (34.5%), while a smaller percentage had achieved primary (10.5%) or postgraduate education (14.5%). Regarding occupation, nearly half of the participants were homemakers (46.5%), while others were employed in the private sector (23.0%), government sector (9.5%), self-employed (10.3%), or were students/unemployed (10.8%). Marital status data showed that 65.8% were married, 29.3% were single and 5.0% were divorced or widowed. Access to healthcare facilities was reported as regular by 71.0% of women, while 29.0% faced limited access, indicating potential barriers to timely gynecological consultation for a notable proportion of the population (Table 1).
Awareness was relatively high for several core concepts: 79.0% correctly identified endometriosis as the growth of uterine tissue outside the uterus and 80.0% recognized chronic pelvic pain as the main symptom. However, 74.5% rightly noted that severe period pain should not be normalized and 82.8% understood that delayed diagnosis could lead to infertility. Knowledge about diagnostic methods was moderate; only 62.8% correctly cited laparoscopy as the definitive method. Awareness about additional manifestations, such as bowel symptoms and psychological impacts like depression and anxiety, varied between 65.0% and 73.3%. Encouragingly, 86.5% recognized that gynecologists are the appropriate specialists for diagnosing endometriosis. Despite good basic understanding, misconceptions about treatment approaches (e.g., painkillers as a cure, hysterectomy as first-line treatment) persisted among a notable segment, indicating the need for broader educational interventions to address lingering gaps (Table 2).
The findings revealed that 42.5% of participants demonstrated "Good" awareness (60–79% correct responses), while 34.0% achieved "Very Good" awareness (≥80% correct responses), highlighting a promising level of foundational knowledge among the women surveyed. However, 18.5% fell into the "Fair" awareness category (40–59%) and 5.0% exhibited "Poor" awareness (<40%), suggesting that while most women had a reasonable understanding, a significant minority remain at risk of overlooking critical symptoms due to inadequate awareness. These results emphasize the urgent need for targeted public health campaigns and community education efforts to bridge these gaps and encourage early healthcare-seeking behavior for chronic pelvic pain (Table 3).
This study provides critical insights into the level of public knowledge and misperceptions regarding endometriosis among women in Kangra district. Despite being a significant health issue affecting millions of women globally, endometriosis continues to be widely misunderstood, normalized and underdiagnosed, especially in rural and semi-urban settings where socio-cultural taboos and health literacy barriers persist. The findings of this survey reveal both encouraging trends and alarming gaps that need urgent attention in public health programming.
Table 1: Socio-Demographic Characteristics of Participants
Variable | Category | Frequency (n) | Percentage (%) |
Age Group (Years) | 18–25 | 104 | 26.0 |
26–35 | 178 | 44.5 | |
36–45 | 118 | 29.5 | |
Education Level | Primary education | 42 | 10.5 |
Secondary education | 162 | 40.5 | |
Undergraduate degree | 138 | 34.5 | |
Postgraduate degree | 58 | 14.5 | |
Occupation | Homemaker | 186 | 46.5 |
Private sector employee | 92 | 23.0 | |
Government sector employee | 38 | 9.5 | |
Self-employed | 41 | 10.3 | |
Student/Unemployed | 43 | 10.8 | |
Marital Status | Married | 263 | 65.8 |
Single | 117 | 29.3 | |
Divorced/Widowed | 20 | 5.0 | |
Healthcare Access | Regular access | 284 | 71.0 |
Limited access | 116 | 29.0 |
Table 2: Awareness and Knowledge Regarding Endometriosis and Chronic Pelvic Pain
Question |
Options | Correct Responses (n) | Percentage (%) |
What is endometriosis? | a) Uterine cancer, b) Growth of uterine tissue outside uterus, c) PCOS, d) Normal period pain | 316 | 79.0 |
Main symptom of endometriosis? | a) Heavy bleeding, b) Itching, c) Chronic pelvic pain, d) Spotting only | 320 | 80.0 |
Is severe period pain normal? | a) Yes, b) No, c) Only if under stress, d) Only in teens | 298 | 74.5 |
Delay in diagnosis of endometriosis can lead to? | a) Faster recovery, b) No effect, c) Infertility, d) Weight gain | 331 | 82.8 |
Common sites of endometriosis? | a) Skin, b) Lungs, c) Brain, d) Pelvic organs | 276 | 69.0 |
Can endometriosis cause infertility? | a) No, b) Yes, c) Only in teenagers, d) Only post menopause | 302 | 75.5 |
Typical delay in diagnosis duration? | a) 1 year, b) 2–3 years, c) 4–5 years, d) 7–10 years | 246 | 61.5 |
Pain during intercourse (dyspareunia) linked to endometriosis? | a) No, b) Yes, c) Only in old age, d) Only after childbirth | 281 | 70.3 |
Can bowel symptoms occur with endometriosis? | a) No, b) Yes, c) Only with diet change, d) Only during pregnancy | 267 | 66.8 |
Endometriosis diagnosed by? | a) Blood tests, b) Laparoscopy, c) Urine test, d) X-ray | 251 | 62.8 |
Pelvic pain worsens during? | a) Menstruation, b) Eating, c) Running, d) Morning | 318 | 79.5 |
Is endometriosis curable by painkillers alone? | a) Yes, b) No, c) Only after surgery, d) Only if mild | 276 | 69.0 |
Main reason for misdiagnosis? | a) Clear symptoms, b) Good healthcare, c) Normalization of pain, d) Awareness programs | 288 | 72.0 |
Risk factors for endometriosis? | a) Smoking, b) Age >50, c) Male relatives, d) Family history | 270 | 67.5 |
Impact of untreated endometriosis? | a) No major effect, b) Chronic pain and infertility, c) Increased appetite, d) Hair loss | 308 | 77.0 |
Symptoms of gastrointestinal involvement? | a) Constipation/diarrhea, b) Hair fall, c) Pain during bowel movement, d) Shortness of breath | 260 | 65.0 |
Which specialist diagnoses endometriosis? | a) Pediatrician, b) General physician, c) Gynecologist, d) Neurologist | 346 | 86.5 |
Psychological impact of chronic pelvic pain? | a) Improves resilience, b) Depression and anxiety, c) No effect, d) Makes women stronger | 293 | 73.3 |
Is hysterectomy the first-line treatment? | a) Yes, b) No, c) Only if young, d) Only with fibroids | 244 | 61.0 |
Should women normalize severe period pain? | a) Yes, b) No, c) Only after childbirth, d) Only after 30 years | 326 | 81.5 |
Table 3: Knowledge Score Classification
Knowledge Category | Score Range | Frequency (n) | Percentage (%) |
Very Good Awareness | ≥80% | 136 | 34.0 |
Good Awareness | 60–79% | 170 | 42.5 |
Fair Awareness | 40–59% | 74 | 18.5 |
Poor Awareness | <40% | 20 | 5.0 |
The socio-demographic analysis showed that the majority of participants were between 26–35 years of age and had at least completed secondary or undergraduate education, suggesting a relatively educated cohort. Yet, even among this group, comprehensive awareness of endometriosis remained limited, underscoring that education alone does not necessarily translate into menstrual or reproductive health literacy. A large proportion of participants were homemakers, reflecting traditional gender roles prevalent in rural India, which may limit women's exposure to professional health education programs and healthcare-seeking behavior. Notably, about one-third of the respondents reported limited access to healthcare services, highlighting a structural barrier that likely contributes to delayed diagnoses and underreporting of chronic pelvic pain conditions.
In terms of knowledge and symptom recognition, while most women demonstrated good awareness about key features of endometriosis-such as chronic pelvic pain (80.0%), infertility risk due to delayed diagnosis (82.8%) and the need for specialist consultation (86.5%)-significant misconceptions persisted. Only 61.5% correctly identified that the typical diagnostic delay for endometriosis spans 7 to 10 years and just 62.8% were aware that laparoscopy remains the gold standard for diagnosis. Worryingly, a considerable number of participants (around 30%) believed that painkillers alone could cure the condition and nearly 39% were unaware that hysterectomy is not the first-line treatment for endometriosis. These findings reflect a troubling normalization of severe period pain and an incomplete understanding of disease management pathways, which can further entrench diagnostic delays and inappropriate treatment-seeking behavior.
The normalization of menstrual pain emerged as a deeply rooted issue, with 74.5% recognizing that severe period pain is not normal, but the remaining quarter still perceiving it as a routine part of womanhood. This harmful perception, shaped by cultural stigmas and inadequate menstrual education, perpetuates the cycle of delayed diagnosis and unnecessary suffering. Moreover, although most participants associated psychological impacts such as depression and anxiety with chronic pelvic pain (73.3%), mental health support for endometriosis patients remains an overlooked aspect of care in rural India [4,5].
Knowledge score classification revealed that while 76.5% of participants fell into "Good" or "Very Good" awareness categories, a concerning 23.5% had only "Fair" or "Poor" knowledge. This significant minority represents a vulnerable group more likely to dismiss symptoms or experience misdiagnosis, reinforcing the need for sustained, culturally sensitive education campaigns. Notably, even among those with regular healthcare access, awareness gaps persisted, indicating that improving access alone without simultaneous awareness-building initiatives will be insufficient to tackle the burden of endometriosis in rural communities.
This study highlights the urgent necessity for community-based educational interventions that explicitly challenge the normalization of menstrual pain, promote symptom literacy and emphasize the importance of early medical evaluation for chronic pelvic discomfort. Integrating endometriosis education into school-based reproductive health curricula, organizing local women’s health workshops, training community health workers and leveraging digital platforms for awareness campaigns could be effective strategies in this context. Furthermore, sensitizing healthcare providers to recognize and not trivialize menstrual complaints can also facilitate earlier diagnosis and better management.
The limitations of the study must also be acknowledged. The online nature of data collection may have excluded women without internet access, potentially skewing results towards more educated or digitally literate respondents. Additionally, self-reported knowledge may be subject to social desirability bias, with participants providing responses they perceived as correct rather than based on their actual understanding. Future research should employ mixed-method approaches, including in-depth interviews and healthcare record audits, to triangulate findings and gain a deeper understanding of the lived experiences of women with suspected or undiagnosed endometriosis.
In conclusion, this study underscores a critical but addressable gap in public knowledge about endometriosis among women in Kangra. While basic awareness exists, pervasive myths, normalization of pain and limited understanding of diagnosis and management continue to hinder early detection and intervention. Multi-tiered public health strategies focusing on menstrual health literacy, stigma reduction and patient empowerment are urgently needed to ensure that no woman continues to silently endure the pain that should never have been ignored.
Ethical Approval
Informed digital consent was secured from all participants. Confidentiality and anonymity were maintained throughout the data collection and analysis processes.
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