Barriers and Facilitators Affecting the Care of Patients with Endometriosis: A Scoping Review

Abstract

Background

Endometriosis affects around 10–15% of women of reproductive age worldwide. Despite its prevalence and the considerable pain and psychological stress associated with the disease, the care of those affected is associated with numerous challenges. A central problem is the often delayed diagnosis, which takes 6–10 years on average. However, early diagnosis is essential for appropriately targeted therapeutic approaches. The specific barriers that contribute to delayed diagnosis and inadequate care have not yet been comprehensively identified. The aim of this scoping review was therefore to systematically identify existing barriers and facilitators to derive approaches for improving diagnosis and doctor–patient communication in Germany.

Methods

A systematic search of international studies was conducted in accordance with the PRISMA-ScR guidelines to identify relevant German- and English-language publications in the period from 2014 to 2024. The search was conducted in various scientific databases. Empirical studies on barriers and facilitators in endometriosis care were included. After screening and selection, 39 relevant publications remained, based on which eight main categories were inductively derived.

Results

Primary barriers include delays in diagnosis, stigmatization of menstrual pain, emotional distress such as shame and fear, inadequate pain management, and structural barriers. The findings suggest that effective interdisciplinary collaboration and patient-centered communication between doctors and patients are essential to reduce diagnostic delays and optimize care. Furthermore, individual studies suggest that digital technologies have the potential to encourage patients to document and communicate their symptoms.

Discussion

The results of the study suggest that the stigmatization of endometriosis significantly complicates its care in the health care system. Consequently, interdisciplinary care models, targeted training of medical professionals, and measures to strengthen doctor–patient communication are key approaches for patient-centered and early care.

Keywords

endometriosis - barriers - facilitators - health care - scoping review

Introduction

Endometriosis is a complex chronic disease which affects an estimated 10–15% of all women of reproductive age worldwide [1]. Around 2 million women in Germany are affected by endometriosis [1], with around 53000 cases newly diagnosed in 2022 [2]. Endometriosis is characterized by the presence of endometrium-like tissue outside the uterus. It can produce local and systemic inflammatory processes. These may subsequently lead to adhesions and fibrosis in the pelvic region [3]. The most commonly reported symptoms are dysmenorrhea, menstrual cycle-independent lower abdominal pain, dysuria and dyschezia, hypermenorrhea, menorrhagia and metrorrhagia, and decreased fertility [4]. Endometriosis-related symptoms can significantly reduce the quality of life of affected women and have a strong negative psychological impact. Studies have shown that mild to severe depression, eating disorders and anxiety affect a significant percentage of women with endometriosis [5]. There is also an increased probability of ovarian cancer [3].

Despite the frequency and the significant impact of this disease, diagnosis and care are still very challenging. Studies from Austria and the Netherlands show that the average time to diagnosis ranges from six to ten years [6] [7]. This delay can be attributed to various factors, including insufficient knowledge about the disease among both affected women and medical professionals as well as social taboos which make communications about symptoms more difficult [8]. Cyclical and acyclic lower abdominal pain is considered “normal” by many women, which contributes to an erroneous assessment of the signs of disease and thereby delays diagnosis [9]. Insufficient consideration of the possibility of endometriosis by treating physicians when searching for a diagnosis is a further cause of delay [9]. These deficits lead to affected women feeling that they are not taken seriously and receiving inadequate treatment from different medical specialists [10]. Although some countries have already implemented targeted approaches to treatment, a comprehensive evidence-based strategy to optimize endometriosis care is still lacking in Germany [11]. Diagnosis is still significantly delayed in many cases, which is also due to deficits in medical education and training [11]. The S2k guideline on the diagnosis and therapy of endometriosis in Germany, Austria and Switzerland provides structured recommendations for action but, at present, it has not yet been implemented nationwide [12]. Interdisciplinary treatment structures have also not yet been established nationwide, although initial improvements are visible [11]. The first steps towards a structured care approach would be the certification of endometriosis practices and clinics and clinical scientific centers for endometriosis in accordance with the recommendations of the Endometriosis Research Foundation (Stiftung Endometrioseforschung) which explicitly reference the need for interdisciplinary cooperation [12]. Nevertheless, considerable deficits remain, for example with regard to pain management, due to a lack of specialized outpatient clinics across Germany and the lack of standardized treatment concepts [11]. Currently, there are increased health policy attempts to improve care, which also includes active research collaborations [13]. But overall, the evidence for effective care models is inadequate. The updated S2k guideline on the diagnosis and treatment of endometriosis is expected to provide further impetus for standardized care in the future.

Despite the high incidence and sometimes serious consequences for the quality of life and fertility of affected women, systematic investigations into specific obstacles in the care system in Germany are lacking. Individual studies have highlighted issues such as structural deficits, social taboos, and poor communication between doctors and patients [6] [7] [8] [9], but a comprehensive overview of these barriers and of possible facilitating factors is currently lacking. Knowledge of such factors is essential to improve clinical practice as delayed diagnosis and inadequate care does not just increase the burden of disease on patients but can also limit the effectiveness of therapeutic interventions [6] [7] [8] [9] [10] [11].

All the above points to a key gap in research: the lack of a systematic overview which could identify the factors which hinder and those that support the care of patients with endometriosis and use them to develop practical recommendations for action. The aim of this scoping review was therefore to evaluate international studies on barriers and facilitators in endometriosis care. The findings are intended to serve as a basis for developing concrete strategies to enable earlier diagnosis and improve doctor-patient communication within the German health care system.

Methods

This scoping review was carried out in accordance with the PRISMA-ScR guidelines (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) [14]. The idea to carry out a scoping review developed out of an exploratory interest in investigating the available literature and the heterogeneity of those studies. The aim was to obtain a comprehensive overview of the international evidence on existing barriers and facilitators which affect the care of patients with endometriosis.

A systematic search was carried out in the databases PubMed, CINAHL, PsycInfo and Web of Science between 29 October 2024 and 30 November 2024 to identify potentially relevant publications. A broad search strategy was used in all the databases which combined key words and MeSH terms (Medical Subject Headings) using the Boolean operators “OR” and “AND”. The search terms included “barriers”, “promotion and support strategies”, “endometriosis” and “health care system”. A complete overview of all search terms used is given in [Table 1]. A search of gray literature was additionally carried out using Google Search and Google Scholar. The analysis included German-language and English-language publications published between 1 January 2014 and 1 December 2024. All articles which contained verifiable descriptions of barriers and facilitators affecting the care of patients with endometriosis were included. There were no restrictions regarding study design; however, case studies, editorials, and commentaries were excluded as they do not provide empirical data and therefore do not offer direct evidence about care barriers and facilitators.

Table 1 English-language and German-language search terms used for the scoping review.

Language of search terms	Search terms used
English-language search terms	(barrier* or problem* or challenge* or support* or help* or help services or support offers or promotion* or strategies* or measures* or tools*) AND (endometriosis or endometrium or endometrial disease or adenomyosis) AND (health system or health care or health care system)
German-language search terms	(Barriere* or Zugangsbarriere* or Problem* or Herausforderung* or Förderfaktoren* or Unterstützung* or Unterstützungsangebot* or Maßnahme* or Instrument*) AND (Endometriose or endometrium or adenomyose) AND (Gesundheitssystem* or Gesundheitsversorgung*)

After removing all duplicates, 695 articles were identified. The reference management program Citavi was used to manage the literature. It was used for the structured filing of search results, the identification of duplicates, and to document selection and analysis processes. As a first step, titles and abstracts were screened by one of the reviewers (SB) using inclusion and exclusion criteria. This led to the exclusion of 612 articles. The main reasons for exclusion were: no reference to the care of patients with endometriosis (n = 280), focus of article was on specific diagnostic or therapeutic methods without consideration of barriers or facilitators (n = 160), publication (i.e., commentaries, editorials, or case reports) did not include empirical data (n = 120), or articles were published outside the defined publication period (n = 52). A full-text screening of the remaining 83 articles was carried out in a second step. A second reviewer (AA), who also reviewed the full texts of publications, was consulted in cases of uncertainty. Discrepancies were discussed between the reviewers until they reached a consensus. Neither of the reviewers underwent formal training or calibration. However, the criteria were jointly defined and agreed upon beforehand. A further 44 articles were excluded, eight because their primary focus was on diagnostic procedures and 36 because the outcomes were unsuitable, leaving 39 publications for data extraction and analysis ([Fig. 1]).

Fig. 1 Number of articles identified and included in the scoping review.

A structured table was generated to extract data. The table included information on: authors, year of publication, country, study design, sample size, target group, key results and described barriers and facilitators. Extraction was done by both reviewers using an iterative process. The studies included in this examination are shown in [Table 2].

Table 2 Designs and data collection methods of the studies included in the scoping review.

Publication	Year of publication	Country	Study design	Sample size	Investigated group	Data collection
Roos-Eysbouts et al. [15]	2015	Netherlands	Quantitative cross-sectional study	n = 571	Patients	Descriptive questionnaire
Roomaney et al. [16]	2016	South Africa	Exploratory qualitative study	n = 16	Patients	Semi-structured interviews
Hållstam et al. [17]	2018	Sweden	Qualitative study based on grounded theory	n = 13	Patients	Semi-structured interviews Three follow-up interviews
Lukas et al. [18]	2018	Switzerland	Multicenter retrospective cohort study	n = 498	Patients	Standardized questionnaire
As-Sanie et al. [19]	2019	USA	Qualitative expert analysis (roundtable discussion)	/	Medical professionals from different professions	Open discussion
Fourquet et al. [20]	2019	Puerto Rico	Quantitative cross-sectional study	n = 342	Patients	Retrospective analysis of the billing data of a health insurance company
Opoku-Anane et al. [21]	2020	USA	Descriptive retrospective analysis	/	Analysis of patient data	Retrospective data analysis of clinical routine data
Simonsen et al. [22]	2020	Denmark	Pilot study with a mixed methods approach	n = 10	Patients	Semi-structured interviews Standardized questionnaire
van der Zanden et al. [23]	2020	Netherlands	Qualitative exploratory study	n = 43	Treating general practitioners	Semi-structured focus group discussions
Matías-González et al. [24]	2021	Puerto Rico	Qualitative exploratory study	n = 50	Patients	Semi-structured focus group discussions
Namazi et al. [25]	2021	Iran	Qualitative exploratory study	n = 20	Patients	Semi-structured interviews
Norman et al. [26]	2021	USA	Mixed methods study	n = 98	Patients	Questionnaire
Rowe et al. [27]	2021	Australia	Qualitative exploratory study	n = 59	Patients and treating general practitioners and gynecologists	Focus group discussions Semi-structured telephone interviews
van der Zanden et al. [28]	2021	Netherlands	Qualitative focus group study	n = 23	Patients	Grounded theory analysis
Ilschner et al. [29]	2022	France and Australia	Qualitative interview study	n = 23	Patients	Semi-structured interviews
Márki et al. [30]	2022	Hungary	Qualitative exploratory study	n = 21	Patients	Focus group discussion
Moreira et al. [31]	2022	Brazil	Randomized controlled intervention study	n = 63	Patients	Questionnaire
Omtvedt et al. [32]	2022	Norway	Mixed methods study	n = 938	Patients and family members	Questionnaire
Sherman et al. [33]	2022	Australia	Mixed methods study	n = 1331	Patients	Focus group discussion
Barbosa et al. [34]	2023	Brazil	Quantitative cross-sectional study	n = 52	Treating gynecologist	Descriptive questionnaire
Girard et al. [35]	2023	Switzerland	Exploratory qualitative study	n = 52	Patients	Semi-structured interviews
Goel et al. [36]	2023	Estonia	Sentiment analysis	n = 3000	Patients	/
Grundström et al. [37]	2023	Sweden	Quantitative study	n = 1000	Patients	Descriptive questionnaire
Lightbourne et al. [38]	2024	Ireland	Qualitative study	n = 20	Patients	semi-structured interviews
Lukac et al. [39]	2023	Germany	Six Sigma	/	Patients and medical professionals	/
Mikesell et al. [40]	2023	USA	Quantitative and qualitative cross-sectional study	n = 448	Patients	Questionnaire
Pontoppidan et al. [41]	2023	Sweden	Cross-sectional study	n = 100	Patients	Descriptive questionnaire
Schreurs et al. [42]	2023	Netherlands	Secondary analysis of two cross-sectional studies	n = 300	Patients	Questionnaire
Singh et al. [43]	2024	Canada	Evidence-based guideline development	/	/	Systematic literature review
Singh et al. [44]	2023	USA	Quantitative cross-sectional study	n = 1352	Patients	Questionnaire
Yen et al. [45]	2023	Asia-Pacific region	Qualitative Delphi study	n = 13	Endometriosis specialists, patient advocate	Expert discussion and evidence-based consensus building
Bień et al. [46]	2024	Poland	Quantitative cross-sectional study	n = 425	Patients	Questionnaire
Swift et al. [47]	2024	Northern Cyprus	Population-based cross-sectional study	n = 7646	Patients	Questionnaire
Westin et al. [48]	2024	Sweden	Pilot study with pre-post intervention design	n = 105	Patients and general practitioners	Questionnaire
Dixon et al. [49]	2021	United Kingdom	Qualitative exploratory study	n = 42	general practitioners	Semi-structured interviews
Metzler et al. [50]	2022	Switzerland	Quantitative cross-sectional study	n = 820	Social media posts on endometriosis	Systematic content analysis: social media analysis
Perelmuter et al. [51]	2024	USA	Overview and evaluation study	/	/	Systematic review
Bergen et al. [52]	2023	Kenya	Qualitative exploratory study with narrative analysis	n = 37	Patients	Questionnaire
Bazot et al. [53]	2022	France	Retrospective single-center observational study	n = 751	Patients	Clinical and imaging data

Based on the 39 included publications, eight main categories were initially developed inductively. These were subsequently assigned to the two overarching categories „barriers“ and „facilitators“.

Results

The identified articles described the challenges which patients with endometriosis face when using health care services and the facilitators which could make it easier to access care services ([Fig. 2]). The results, subdivided into barriers and facilitators according to main and subcategories, are shown in [Table 3].

Fig. 2 Illustration of the identified barriers and facilitators (own illustration). Red boxes = identified barriers in health care. Green boxes = identified facilitators. The boxes at the top represent the main categories while the lower boxes are the related subcategories.

Table 3 Presentation of the results of the scoping review subdivided into barriers and facilitators based on main and subcategories.

Main category	Subcategory	Publications	Total number of publications
Barriers
Delayed diagnosis	Lack of knowledge among medical professionals and lack of support	[15] [16] [17] [18] [19] [23] [27] [28] [30] [33] [34] [35] [36] [38] [40] [43] [45] [46] [47] [48] [49] [50] [52]	N = 28
	Misdiagnoses and inadequate imaging	[19] [20] [23] [26] [27] [28] [29] [34] [36] [38] [39] [40] [41] [43] [44] [45] [47] [48] [49] [52] [53]
Lack of psychological support	Stigmatization	[26] [35] [43] [47] [50]	N = 19
	Social isolation and emotional stress	[18] [22] [24] [25] [26] [28] [29] [30] [31] [32] [33] [35] [38] [43] [46] [48] [52]
Structural barriers	Costs, availability, and accessibility	[20] [27] [29] [30] [34] [36] [38] [39] [45] [46] [47] [52]	N = 23
	Fragmented care	[15] [18] [19] [20] [21] [22] [23] [27] [28] [34] [35] [36] [37] [38] [39] [43] [45] [49]
Medical care	Ineffective pain therapies	[15] [18] [19] [24] [26] [30] [31] [38] [42] [45] [46] [48] [52]	N = 20
	Lack of psychosocial resources	[15] [16] [18] [20] [21] [25] [26] [36] [38] [42] [46] [47] [48] [51] [52]
Facilitators
Education and raising awareness among medical professionals and affected women	Training of medical professionals	[16] [20] [21] [23] [25] [26] [28] [29] [30] [31] [35] [39] [41] [43] [45] [46] [49] [52]	N = 24
	Public campaigns and measures to raise awareness	[15] [16] [19] [21] [25] [26] [28] [30] [31] [35] [41] [42] [43] [44] [45] [46] [47] [49] [52]
Interdisciplinary care	Multidisciplinary teams	[17] [19] [21] [26] [27] [28] [30] [32] [35] [39] [46] [48] [51] [53]	N = 25
	Standardized guidelines	[15] [19] [23] [27] [28] [35] [37] [43] [45] [46] [53]
Patient-centered care	Trust-based relationship between doctor and patient	[18] [22] [25] [29] [30] [41] [48] [49]	N = 24
	Individual treatment plans	[18] [19] [20] [22] [25] [27] [32] [33] [41] [48]
	Cultural sensitivity training of gynecologists	[16] [22] [26] [28] [35] [43]
Innovative interventions	Digital technologies, alternative treatment options	[15] [16] [18] [21] [25] [27] [29] [30] [32] [33] [40] [41] [45] [46] [48] [51] [52]	N = 17

Characteristics of the publications

Of the 39 articles included in this scoping review, six were from the USA [19] [21] [26] [40] [44] [51], four from the Netherlands [15] [23] [28] [42], four from Sweden [17] [37] [41] [48], three from Australia [29] [27] [33] and three from Switzerland [18] [35] [50] and two respectively from Puerto Rico [20] [24], France [29] [53] and Brazil [31] [34], although one of these studies [29] assessed both the French and the Australian health care systems. There were single studies from Germany [39], Norway [32], the United Kingdom [49], South Africa [16], Denmark [22], Iran [25], Hungary [30], Estonia [36], Ireland [38], Canada [43], the Asia-Pacific region [45], Poland [46], Northern Cyprus [47] and Kenya [52].

32 of the publications presented empirical findings while the remaining articles consisted of systematic overviews. The focus of six of the studies was on the health care system in the USA, while only one study focussed on the health care situation in Germany [39]. The majority of patients in the studies were female. Individual studies investigated additional barriers and facilitators from the point of view of experts [19], medical staff [23] [49] [50] and treating or specialized gynecologists [34] [45].

Barriers in endometriosis care

The identified barriers were grouped into four main categories. They include

1. delayed diagnosis,

2. lack of psychological support,

3. medical care, and

4. structural barriers.

Delays in diagnosis are one of the greatest challenges. Many affected women have the impression that their doctors do not have sufficient knowledge about endometriosis and that their symptoms are often interpreted wrongly or overlooked [15] [16] [17] [18] [19] [23] [27] [28] [30] [33] [34] [35] [36] [38] [40] [43] [45] [46] [47] [48] [49] [50] [52]. This can lead to misdiagnoses and inadequate imaging [19] [20] [23] [26] [27] [28] [29] [34] [36] [38] [39] [40] [41] [43] [44] [45] [47] [48] [49] [52]. It took between six and ten years on average until the correct diagnosis was made [19] [45]. Moreover, according to several studies, there often are no standardized guidelines which would help making a diagnosis [23] [29] [35] [46] [49] [53]. The social normalization of gynecological symptoms and the erroneous assessment of symptoms as “psychosomatic” or “normal” were further aspects contributing to the delays in diagnosis [19] [23] [24] [25] [27] [28] [29] [30] [35] [36] [38] [39] [40] [43] [45] [46] [52]. This would then lead to many affected women facing repeated visits to the doctor without their symptoms being adequately considered during their visits [24] [36] [42]. These experiences could result in frustration and distrust of the health care system among many affected women [22] [24] [27]. Moreover, many commented that they felt “devalued” or “rejected” and had the impression that health care providers were “insensitive”, “inconsiderate” and “hurtful” [21] [24] [27] [36] [40].

A further key barrier which took the form of a lack of emotional support became manifest in the stigmatization and emotional stress experienced by affected women. The social stigma related to gynecological disorders would often result in inadequate support which is caused by a lack of information and education, a lack of empathy on the part of medical staff, and insufficient sensitivity in society [26] [35] [43] [47] [50]. This would result in affected women often feeling abandoned and believing that they are not being taken seriously, which could increase emotional burdens such as stress or frustration [18] [22] [24] [25] [26] [28] [29] [30] [31] [32] [33] [35] [38] [43] [46] [48] [52]. Studies have emphasized that women felt shame and embarrassment during communications, especially when communicating with male physicians. These affective barriers could result in intimate topics and symptoms not being openly discussed, which would make it even more difficult to arrive at a diagnosis and start treatment [24] [35] [44] [45]. Fear of pain, of complications or of a possible positive diagnosis would produce significant stress, which could inhibit affected patients from utilizing health care services [35].

When evaluating medical care, a further identified barrier was inadequate pain management. Many affected patients reported on their experience of having the feeling that their pain was not adequately treated [18] [31] [45] [46]. Long-term persistent pain could have a significant negative effect on a patient’s professional and private life and reduce the patient’s quality of life [15] [19] [24] [26] [30] [38] [42] [48] [52]. The inadequate integration of pain therapies into standard care would make it more difficult to offer patient-centered care. The emotional and psychological burdens associated with endometriosis would not be properly taken into consideration which would prevent women from receiving holistic and supportive care [18].

Several studies highlighted structural barriers such as high treatment costs and limited access to specialized care options as a possible barrier [20] [27] [29] [30] [34] [36] [38] [39] [45] [46] [47] [52]. Coordinated approaches which would permit comprehensive care would be often lacking, especially when the care system is fragmented [15] [18] [19] [20] [21] [22] [23] [27] [28] [34] [35] [36] [37] [38] [39] [43] [45] [49]. Interdisciplinary cooperation was considered essential to overcome fragmentation and improve interactions and coordination between different service providers. In the context of coping with psychological stresses such as anxiety or depression [19] [21] [25] [30] [38] [47] [52], affected patients criticized the lack of psychosocial support. A lack of psychosocial support when trying to cope with disease would put strain on patients‘ emotional well-being [16] [18] [20] [21] [25] [26] [36] [38] [42] [46] [47] [48] [51] [52]. It is suspected that psychosocial options are not sufficiently integrated in the treatment process [35].

Facilitators in dealing with endometriosis

Many facilitators were identified which could improve both access to care and the quality of care. These facilitators were grouped into four main categories:

1. educating and improving the awareness of medical staff and affected persons,

2. interdisciplinary care,

3. patient-centered care, and

4. innovative interventions.

Training courses to educate and train medical professionals and large-scale campaigns to raise awareness in affected women could contribute to deepening the knowledge of endometriosis and increasing sensitivity in the general public [15] [16] [19] [20] [21] [23] [25] [26] [27] [28] [29] [30] [31] [33] [35] [41] [43] [44] [45] [46] [47] [49] [52]. The integration of such training courses into medical studies [39] could additionally help to sensitize doctors in training early on, which could reduce future delays in diagnosis and consequently improve the quality of care [18] [28] [35] [47] [49].

Interdisciplinary approaches to treatment, standardized guidelines and diagnostic protocols were additionally identified as effective strategies [15] [19] [23] [27] [28] [35] [37] [43] [45] [46] [53]. They would promote cooperations between different medical specialties and permit a more holistic care which would take into account both psychological and social aspects [16] [18] [19] [21] [23] [24] [26] [29] [30] [33] [35] [41] [44] [47] [48]. Interdisciplinary [19] [26] [27] [30] [35] [39] [46] [51] [53] and multidisciplinary teams [17] [19] [21] [27] [28] [32] [35] [48] which combine medical, psychosocial and communicative skills were found to offer particularly promising results. Telemedicine platforms which connect different medical specialties could also be used for that purpose [51].

Patient-centered care and a doctor–patient relationship based on trust would be essential to overcome existing barriers [18] [22] [25] [29] [30] [41] [48] [49]. Some studies have emphasized the importance of having a fixed gynecological contact [32] [37] [38] and stressed how important it is to have communications that are culturally sensitive and to have enough time for the patient in terms of reducing fear and shame [16] [26] [43]. A possible solution would be additional training of gynecologists which would focus on creating an open and supportive environment [22] [28] [35]. The focus should be on active listening, targeted inquiries about pain symptoms, and the acknowledgement and recognition of symptoms [18] [28] [29] [33] [42] [44] [48]. Patient-centered approaches such as individualized treatment plans which respond to the personal needs of affected patients would make it easier to cope with the disease and would make it possible to provide treatment based on trust [18] [19] [20] [22] [25] [27] [32] [33] [41] [48].

Innovative interventions such as digital technologies and alternative treatment options could contribute to the further individualization and improvement of care [15] [18] [27] [33] [41] [45] [48]. Examples cited in support of this approach were telemedicine programs for pain management and apps which could support affected patients to record symptoms. In addition, digital platforms such as social media could provide emotional support and permit the exchange of experiences [15] [16] [21] [25] [27] [29] [30] [32] [33] [40] [41] [45] [46] [51] [52]. It is recommended that medical presence on social media be increased to share evidence-based content and counter misinformation [32] [36] [43] [50]. Digital technologies would facilitate access to information and promote self-management by women with endometriosis [32] but this may be associated with high costs [19] [20] [21] [46]. To counteract the high costs of digital technologies, promoting inexpensive solutions and improving financing by providing public funding is recommended. The integration of such technologies into existing health care programs could contribute to reducing costs and improving access [51].

Discussion

This study shows that endometriosis care is challenged by many different social and structural aspects. The aim of the scoping review was to systematically examine the international evidence on barriers and facilitators of care and get ideas on how to optimize the care situation in Germany. Structural, psychosocial, and communicative obstacles were found to be the main barriers. Facilitating and challenging aspects were systematically categorized. This review provides a structured overview of existing challenges and attempts to transfer them to patient-centered endometriosis care in Germany.

A key barrier was found to be the considerable delays in obtaining a diagnosis, which could be essentially ascribed to insufficient knowledge of endometriosis among non-specialized medical professionals. Symptoms are often played down or wrongly classified as psychosomatic, which makes appropriate early treatment more difficult [19] [23] [24] [25] [27] [28] [29] [30] [35] [36] [38] [39] [40] [43] [45] [46] [52]. Davenport et al. [54] showed that many general practitioners classify endometriosis symptoms as “normal” menstrual pain, which leads to misdiagnosis and inadequate access to specialized treatment. Their findings correspond to statements in the German S2k guideline on endometriosis which also points to significant deficits in early detection [12].

As regards the recommendation in the guideline to boost the awareness of general practitioners, it was found that international studies placed greater emphasis on additional barriers – for example, communication between doctor and patient – than was proposed in the guideline. This has yielded new impulses to amend and further develop existing health care recommendations in Germany.

The lack of specific knowledge about endometriosis in the primary health care sector reflects the need for a greater inclusion of endometriosis in the medical curriculum and an obligation for general practitioners to undergo further training to raise their understanding and awareness [54]. Systematic screening tools and government-funded measures to raise awareness are lacking [55] [56] [57] [58]. Such measures would not just shorten the time to diagnosis but also foster the interdisciplinary skills of medical staff and lead to more sensitive communications with affected women [59].

The cooperation between different medical specialties is especially relevant if the aim is to integrate non-drug treatment options into the general care of patients with endometriosis. Physiotherapy, nutrition counseling, and psychological support are proven effective additions to drug treatment and surgery but are often not funded by health insurance companies [60]. The inclusion of these therapies into general health care, supported by adaptations to health policy frameworks, could increase the success of treatments [61] [62] [63]. Such approaches are already being implemented in specialized endometriosis centers but need to be available across the whole country to counter long wait times and the regional differences in available care [55]. This would not just represent the implementation of guideline recommendations for multimodal therapy but also ensure that health care services are distributed fairly [12].

Many women with endometriosis report a lack of recognition of their pain which can lead to feeling isolated and helpless. In addition to structural adjustments, low-threshold access to support is essential. This can consist of setting up self-help groups, providing digital communication platforms, and including psychological care in general health care. Such initiatives offer women with endometriosis the opportunity to share their experiences, support one another, and improve their quality of life [64] [65] [66]. Target group-specific information and education campaigns such as the “EndoMarch” campaign illustrate how such an approach can help raise awareness and understanding in the general population and strengthen the health literacy of women with endometriosis [67] [68] [69]. Digital platforms and social media can be used to make such information available to the wider public and thereby encourage earlier diagnosis and treatment [70].

The findings of this study demonstrate the need for structural changes in the health care provided to patients with endometriosis. The implementation of interdisciplinary treatment approaches is described as an important strategy to improve care [71] [72]. A coordinated cooperation between different medical specialties is already a mandatory part of treatment in certified endometriosis centers. Although comprehensive coverage linking different specialties in the German health care system across the country would be essential, implementing such networks is problematic. An important reason for this is the continuing fragmentation of care which makes it difficult to initiate cooperations between different medical specialties outside of certified centers [73]. Successful models such as the British “Endometriosis Centres of Excellence” program have already demonstrated early on that coordinated care provided by gynecologists, pain therapists, and psychologists has a positive effect on the quality of life of patients [74].

Different studies have also shown that digital health care solutions can be a valuable addition to the health care system. Telemedicine platforms, apps to record symptoms, and online support groups offer women with endometriosis the option to access low-threshold and flexible support [75]. One example of this is the digital health care app Endo-App which makes it easier for women with endometriosis to record their symptoms and offers access to evidence-based information [60]. Digital solutions can contribute to improving care across all of Germany, especially when they are combined with local support groups and information events. Such hybrid models appear to be especially helpful for young women as they provide early education and information about endometriosis. This approach also encourages self-management skills as the applications enable women with endometriosis to make informed decisions about treatment [76] [77] [78].

When considering the endometriosis care situation in Germany, it is clear that a comprehensive expansion of endometriosis care will be necessary to systematically reduce existing barriers. International experiences indicate the benefits of expanding interdisciplinary care structures, setting up specialized endometriosis centers across Germany, and integrating digital options and psychosocial support into general health care. Even though international concepts cannot be directly transposed to Germany due to the differences in care systems, they still provide valuable pointers which can be used to derive practical measures which will be relevant for the German context. This includes mandatory further training for doctors, sustained support for interdisciplinary centers, a wide range of supportive psychosocial services, and the targeted use of digital tools. All these elements provide valuable starting points for patient-centered, future-focused endometriosis care in Germany.

Limitations

This scoping review has certain limitations which must be considered when interpreting the findings. Despite a comprehensive search of the literature in various databases, it is possible that relevant studies were not included. Moreover, most of the included studies were conducted abroad. While this corresponded to the study objective which was to gather insights from international experiences which would be useful for the care situation in Germany, cultural and structural differences limit the transferability to the German context. The limited number of German studies underscores the need for further studies to obtain a better understanding of the care situation of women with endometriosis, identify barriers in the German health care system, and develop specific measures to improve the situation. It should also be remembered that the included studies do not reflect the entire range of experiences of affected women, which reduces the representativity and generalizability of the results.

Conclusions for Clinical Practice

The findings of this scoping review identified four key care deficits: delayed diagnoses, insufficient psychological support, deficits in pain management, and limited access to specialized treatment options. In contrast, approaches such as increased education and further training of medical professionals, the creation of interdisciplinary care structures, patient-centered care, and innovative digital interventions have been found to be beneficial. This has the following implications for medical care in Germany: improving medical training, strengthening interdisciplinary cooperation, and integrating psychosocial and digital services into general health care are essential to sustainably improve the care of women with endometriosis.

Conflict of Interest

The authors declare that they have no conflict of interest.

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Publication History

Received: 16 June 2025

Accepted after revision: 02 December 2025

Article published online:
11 February 2026