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 pelvic pain. Globally, endometriosis affects approximately 10% of women of reproductive age, yet it remains one of the most misunderstood and underdiagnosed health issues. Despite its prevalence, a combination of social stigma, misinformation, normalization of menstrual pain, and gaps in healthcare systems contribute to significant delays in diagnosis—often averaging seven to ten years from symptom onset. The consequences of delayed recognition are profound, encompassing chronic pain, infertility, psychological distress, reduced quality of life, and significant economic burden on both individuals and society [1-4].

In the Indian context, particularly in rural and semi-urban areas such as Himachal Pradesh, awareness about endometriosis  is   alarmingly   low.  Cultural  norms  often discourage open discussions about menstruation and reproductive health, perpetuating myths and misconceptions that dismiss women's symptoms as exaggerated or normal aspects of womanhood. This culture of silence not only trivializes the suffering of women but also delays timely medical intervention, exacerbating disease progression and worsening outcomes. Furthermore, a lack of targeted public health education campaigns and limited training among primary healthcare providers contribute to the invisibility of endometriosis within the healthcare narrative [3-6].

Chronic pelvic pain—one of the hallmark symptoms of endometriosis—is frequently misattributed to less serious or psychosomatic causes, especially among adolescent girls and young women. Without early and accurate diagnosis, many women endure years of unnecessary suffering, repeated ineffective treatments, and emotional isolation. Addressing the stigma surrounding menstrual and pelvic pain, promoting community-level education, and enhancing clinical awareness are vital steps toward improving diagnosis rates and outcomes for women with endometriosis [7,8].

This study aims to explore public awareness, prevalent misconceptions, and attitudes regarding endometriosis among women in Himachal Pradesh. By identifying knowledge gaps, social barriers, and common myths, the research seeks to inform targeted interventions that promote early diagnosis, empathetic care, and a broader societal acknowledgment of endometriosis as a serious health issue. Ultimately, the goal is to break the silence surrounding "invisible pain" and advocate for the health and dignity of women living with endometriosis.

Study Design

A descriptive, cross-sectional, online survey was conducted to assess public awareness, misconceptions, and attitudes regarding endometriosis among women residing in Himachal Pradesh. The study design was chosen to capture a broad understanding of community perceptions and knowledge about this often overlooked gynecological condition.

Study Area and Population

The study targeted women aged 18–45 years, living in rural, semi-urban, and urban areas across selected districts of Himachal Pradesh. Eligible participants were women who could read and comprehend Hindi or English, had internet access via smartphones, tablets, or computers, and voluntarily consented to participate.

Study Duration

Data collection took place over a period of three months, from January to March 2025.

Sample Size and Sampling Technique

Assuming a 50% awareness level about endometriosis (given limited previous data), with a 95% confidence interval and a 5% margin of error, the minimum required sample size was calculated to be 384 participants. To account for incomplete responses, the final target sample size was increased to 420.

A convenience sampling technique was used. The survey link was widely distributed through social media platforms (WhatsApp, Facebook groups, Instagram pages focused on women’s health), women’s community groups, educational forums, and networks of healthcare volunteers.

Inclusion and Exclusion Criteria

Inclusion Criteria

• Women aged 18–45 years

• Residents of Himachal Pradesh

• Ability to understand Hindi or English

• Access to an internet-enabled device

• Provision of informed electronic consent

Exclusion Criteria

• Women previously diagnosed with endometriosis (to focus on general public awareness rather than patient experiences)

• Women unwilling to participate or unable to complete the questionnaire

Data Collection Instrument

A structured, bilingual (Hindi and English), pre-validated questionnaire was developed and administered via Google Forms. The questionnaire consisted of four sections:

• Socio-Demographic Information: Age, education, marital status, occupation, residence (rural/semi-urban/urban).

• Awareness of Endometriosis: Knowledge of symptoms, causes, risk factors, and impacts on quality of life.

• Misconceptions and Stigma: Common myths, cultural beliefs, and barriers to seeking medical help

• Healthcare-Seeking Behavior: Attitudes toward menstrual health discussions, sources of information, and preferred healthcare-seeking practices

The questionnaire was pilot-tested with 30 women (excluded from the final analysis) to ensure clarity, cultural appropriateness, and ease of digital administration. Modifications were made based on feedback from the pilot test.

Data Collection Procedure

Participants first accessed an introductory page on the Google Form, which explained the study purpose, confidentiality measures, and voluntary nature of participation. Electronic informed consent was required before proceeding to the survey.

Google Form settings restricted multiple entries from the same participant to maintain data integrity, and no personally identifiable information was collected, ensuring anonymity.

Scoring and Categorization

Knowledge-based questions were scored as follows:

•      Correct response: 1 point

•      Incorrect or "Don't Know" response: 0 points

Cumulative knowledge scores were classified into four categories:

•      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 conducted to assess levels of stigma, misconceptions, and healthcare-seeking attitudes.

Data Analysis

Data were exported from Google Forms into Microsoft Excel and analyzed using IBM SPSS Statistics Version 26.0. Descriptive statistics such as frequencies, percentages, means, and standard deviations were used to summarize socio-demographic data, awareness levels, and misconceptions.

Ethical Considerations

The study was conducted in accordance with ethical standards outlined in the Declaration of Helsinki. Participation was entirely voluntary, and informed electronic consent was mandatory. Confidentiality and anonymity were strictly maintained. Participants were assured that their responses would be used solely for academic and public health improvement purposes, with no impact on their healthcare access or social standing.

The socio-demographic profile of the 420 women surveyed revealed a fairly even distribution across different age groups, with the majority aged 26–35 years (37.4%), followed by 18–25 years (34.5%), and 36–45 years (28.1%). In terms of marital status, more than half of the respondents were married (55.7%), while 38.1% were single and 6.2% were divorced or widowed. Educational attainment was relatively high, with 36.0% having undergraduate degrees and 35.5% having completed secondary schooling; 12.6% had postgraduate education, while smaller proportions had primary school education (11.0%) or no formal education (5.0%). Regarding occupation, 29.5% were homemakers, 22.1% worked in the private sector, 18.1% were self-employed, 13.6% were government employees, and 16.7% were unemployed. Residence data indicated that 42.1% of participants lived in rural areas, 40.7% resided in urban settings, and 17.1% belonged to semi-urban areas, demonstrating a diverse geographical spread representative of Himachal Pradesh’s population dynamics.

Table 1: socio-demographic characteristics of participants

The survey findings on awareness and knowledge of endometriosis indicated a moderately high overall understanding among participants. A significant 76.4% correctly recognized that endometriosis involves endometrial tissue growing outside the uterus, while 80.7% acknowledged its association with debilitating pelvic pain. Recognition of severe dysmenorrhea as a key symptom was reported by 73.3%, and 70.0% understood the potential link between endometriosis and infertility. However, knowledge was somewhat weaker regarding hormonal contributions to disease development (67.1%) and symptom overlap with gastrointestinal disorders (65.5%). Encouragingly, 84.3% of women understood the need to consult a specialist when endometriosis is suspected, and 81.0% refuted the myth of supernatural causes. Awareness that early diagnosis can reduce complications (79.0%) and that gynecologists are the appropriate specialists for diagnosis (83.3%) was strong. Nonetheless, misconceptions persisted around treatment options, disease progression, and symptoms, highlighting critical areas for targeted public education interventions.

Table 2: awareness and knowledge of endometriosis among participants

Knowledge score analysis showed that nearly half of the participants (46.2%) exhibited a "Good" level of awareness, scoring between 60%–79% on the knowledge assessment. Furthermore, 27.1% of women demonstrated "Very Good" awareness with scores of 80% or higher, reflecting a substantial portion of the population with commendable knowledge regarding endometriosis. However, 21.2% of participants were classified under the "Fair" category (40%–59%), and a concerning 5.5% showed "Poor" awareness with less than 40% correct responses. These findings emphasize that while general awareness about endometriosis is growing among women in Himachal Pradesh, significant knowledge gaps and misconceptions remain, necessitating strengthened, community-wide education and health promotion efforts to bridge these divides.

Table 3: knowledge score classification

This study provides critical insights into the level of public awareness, misconceptions, and attitudes concerning endometriosis among women in Himachal Pradesh. The findings highlight a complex interplay of partial knowledge, persistent myths, cultural stigma, and healthcare-seeking barriers that continue to obscure the recognition and management of this chronic gynecological disorder. Although endometriosis affects an estimated 10% of women globally, it remains underdiagnosed, and this study underscores that the situation in Himachal Pradesh reflects this troubling global pattern, with significant implications for women’s health and quality of life.

The socio-demographic profile of participants, with a majority in the reproductive age group of 26–35 years, a substantial proportion being married (55.7%), and a considerable number residing in rural areas (42.1%), represents a population segment particularly vulnerable to the consequences of undiagnosed or mismanaged endometriosis. Educational attainment was relatively encouraging, with 36.0% holding undergraduate degrees, suggesting that formal education alone does not necessarily translate to greater reproductive health literacy regarding endometriosis. This emphasizes the need for more specialized, targeted health education interventions.

Awareness levels, while moderately encouraging, reveal significant gaps. Although over three-quarters of participants correctly identified that endometriosis involves endometrial tissue growing outside the uterus (76.4%) and recognized its association with debilitating pelvic pain (80.7%), deeper understanding of disease etiology, risk factors, and management options was inconsistent. Knowledge surrounding hormonal contributions (67.1%), gastrointestinal symptom mimicry (65.5%), and the potential for family history to increase risk (67.6%) was notably weaker. This fragmented awareness pattern suggests that while the broader concept of endometriosis is somewhat known, nuanced understanding critical for early self-recognition and advocacy for healthcare remains insufficient.

Encouragingly, 84.3% of respondents recognized the necessity of consulting a specialist, and 83.3% correctly identified gynecologists as the primary experts to diagnose endometriosis. However, persistent misconceptions—such as beliefs about supernatural causes (although rejected by 81.0%) and misunderstandings about the necessity of surgery (70.7%)—continue to contribute to confusion and hesitancy in seeking timely medical care. Additionally, only 64.0% were aware that symptoms could improve after menopause, and misconceptions about symptom progression and management could delay women’s proactive engagement with healthcare systems.

The burden of stigma remains a formidable barrier, as shown by the significant proportion of women who were unaware of the harm in normalizing severe menstrual pain. While 82.4% acknowledged that dismissing such pain is dangerous, cultural conditioning that frames menstruation as inherently painful still inhibits open conversation and early intervention. This entrenched stigma fosters emotional isolation and prolongs suffering for countless women, often delaying medical consultations until symptoms become severe or debilitating.

Knowledge score classification further reveals that although 46.2% of participants demonstrated "Good" awareness and 27.1% showed "Very Good" awareness, a significant 26.7% of women fell into the "Fair" or "Poor" categories. This vulnerable cohort represents those most at risk for delayed diagnoses, progressive disease, and deteriorating quality of life. Targeted community outreach and structured education programs are critical to uplift these women out of informational disadvantage and into empowered healthcare-seeking behavior.

The implications of these findings are profound. Without timely diagnosis and management, women with endometriosis face not only chronic pain but also elevated risks of infertility, mental health disorders like depression and anxiety, and reduced socioeconomic participation. The current gaps in awareness suggest an urgent need for culturally sensitive public health campaigns that normalize discussions around menstrual health, debunk myths, and encourage early symptom recognition. Furthermore, integrating endometriosis awareness into routine reproductive health education through community health workers, school curricula, and primary healthcare services could foster early intervention.

Despite its strengths, this study has limitations. The online survey format may have biased the sample toward women with greater digital literacy and access, potentially underrepresenting those from the most underserved areas where awareness might be even lower. Self-reported data are also subject to social desirability bias, possibly leading to overestimation of true knowledge levels. Nonetheless, the findings provide an important first step toward understanding the public perception of endometriosis in a geographically and socio-culturally unique region like Himachal Pradesh.

In conclusion, while there are promising signs of growing awareness about endometriosis among women in Himachal Pradesh, significant misconceptions, stigma, and knowledge gaps persist. Early and accurate diagnosis, comprehensive patient education, stigma reduction, and improved access to gynecological expertise are urgently needed. Breaking the silence around "invisible pain" will require a multi-sectoral effort involving healthcare providers, educators, policymakers, and communities to ensure that women suffering from endometriosis are no longer marginalized or left untreated. Investing in awareness today will spare countless women from years of avoidable suffering tomorrow.

1. Hudson, N. "The Missed Disease? Endometriosis as an Example of 'Undone Science'." Reproductive Biomedicine & Society Online, vol. 14, 2021, pp. 20–27.

2. Endometriosis: An Invisible Disease Affecting 42 Million Women in India [Internet]. Horizon Prime Hospital. Available from: https://prime.horizonhospital.com/endometriosis-an-invisible-disease-affecting-42-million-women-in-india/.

3. The Unseen Pain: Exploring the Link Between Endometriosis and Mental Health [Internet]. Zee News. Available from: https://zeenews.india.com/health/the-unseen-pain-exploring-the-link-between-endometriosis-and-mental-health-2889297.

4. The Unseen Pain: Exploring the Link Between Endometriosis and Mental Health [Internet]. Times of India. Available from: https://timesofindia.indiatimes.com/life-style/health-fitness/health-news/the-unseen-pain-exploring-the-link-between-endometriosis-and-mental-health/articleshow/119659739.cms.

5. Common Myths and Misconceptions About Endometriosis [Internet]. Continental Hospitals. Available from: https://continentalhospitals.com/blog/common-myths-and-misconceptions-about-endometriosis/.

6. Endometriosis: The Hidden Suffering of Millions [Internet]. Reliance General Insurance. Available from: https://www.reliancegeneral.co.in/insurance/knowledge-center/health-o-pedia/endometriosis-the-hidden-suffering-of-millions.aspx?wpsrc=Google+Organic+Search.

7. Women's Day: The Underdiagnosis of Endometriosis in India [Internet]. India Today. Available from: https://www.indiatoday.in/health/story/womens-day-the-underdiagnosis-of-endometriosis-in-india-2512278-2024-03-08.

8. Langmann, E. et al. "Endometriosis in Later Life: An Intersectional Analysis from the Perspective of Epistemic Injustice." Medicine, Health Care and Philosophy, vol. 28, 2025, pp. 151–159.