Introduction

Endometriosis is a hormone-dependent, chronic inflammatory disease characterised by the growth of endometrial-like tissue outside the uterus [1]. This can lead to pain (often menstrual cycle-related) and other symptoms such as bladder and bowel dysfunction, pain during intercourse, infertility or reduced fertility [1–3]. Also, a higher risk of certain cancers has been linked to endometriosis, e.g., a recently published 4.2-fold increased risk of ovarian cancer [4]. Exact prevalence rates are unknown, but it is estimated to affect between 2–10% of the female population overall [2]. The disease can become chronic even with optimal treatment, indicating that patients may need lifelong care [3]. The aetiology and pathogenesis of endometriosis is still poorly understood [1,3].

The disease can affect patients life considerably [5], particularly the quality of life, social contacts and work life [2], and is also associated with high levels of anxiety in patients [6]. It is known that patients often experience a lack of understanding from the healthcare system, stigmatisation of their pain and delayed diagnosis [5,7–9]. International research revealed clinical shortcomings and called for more practices to facilitate more encouraging contacts with the healthcare system [5,8]. However, to create or improve positive experiences for endometriosis patients, more research into their healthcare encounters is still needed [10].

In Germany, the precise healthcare situation of endometriosis patients or even reliable rates of endometriosis prevalence are not available due to a lack of data [11]. However, it is estimated that 10–15% of all women of reproductive age are affected and 40,000 women develop endometriosis each year [11]. On average, 2.3 years elapse between the onset of symptoms and the first contact with providers, a further average of 7.7 years elapse from the first contact before a diagnosis is made [12].

In general, the German healthcare system offers universal health insurance coverage for the population and a comprehensive benefits package with relatively low cost-sharing requirements [13]. It offers free choice of provider and is financed by statutory health insurance and private health insurance, which are mandatory for everyone registered or usually resident in Germany [13]. Furthermore, it is characterised by a relatively strict divide into outpatient care (with general practitioners and specialists), inpatient care (hospitals) and rehabilitative care [14].

Current German research based on national outpatient claims data has shown a continuously rising annual prevalence of diagnosed endometriosis in the period from 2012 to 2022, but clearly remaining below epidemiological prevalence estimates [15,16]. This suggests high level of underdiagnosis [15]. Although graduated evidence-based recommendations are given in the guideline Diagnosis and Treatment of Endometriosis [17], a malfunctioning or insufficient care seems to exist. This is particularly seen in delays in diagnosis, which are associated with provider-centred causes, but are also described as patient-related [18]. Currently, laparoscopy is the gold standard diagnostic test according to the named guideline [17]. Regarding surgical approaches, it is known that one third of surgical procedures are carried out in specialised, certified endometriosis centres and approaches used in those centres mainly follow recommendations of current guidelines in endometriosis care [19].

Notably, in Germany, little qualitative research has been conducted on experiences of endometriosis patients with healthcare encounters. So far, research is focused mainly on diagnostic delays, influences on the patients’ lives or on clinical aspects such as treatment options. Therefore, this study aimed to specifically describe the patients’ experiences of healthcare and its providers. The objective was to draw conclusions about the perceived current state of endometriosis healthcare from the patient’s perspective and to identify resources and challenges for patients to improve or create positive healthcare experiences.

Methods

Results

Patient characteristics

In total, 21 patients agreed to participate in this study, met the inclusion criteria and set a date for the interview. There were no drop-outs. The women were aged between 23–54 years with a mean age of 32.2 years (SD: 7.4) and a median of 32 years (Table 1). The date of diagnosis ranged from 1 month to 38 years ago at the time of the interview (median: 18 months). Six of the women had children. The classification of the patient’s highest educational qualification according to the German National Qualification Framework (DQR) ranged between 3 and 8 (median: 4), with 8 representing the highest qualification (doctorate), and 1 representing the lowest qualification (no degree) [31]. 13 women lived in urban areas, eight in rural areas. None of the participants were known to the interviewer.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 1. Patient characteristics.

https://doi.org/10.1371/journal.pone.0323883.t001

Quotations in the results were translated meaningfully into English and denoted by patient number (e.g., Patient 01: P01). Filler words not necessary for understanding were removed from quotes. Further quotes, categorised by themes, can be found in S2 Table.

Discussion

This study aimed to explore how women with endometriosis experience healthcare encounters in Germany using a qualitative phenomenological approach according to Creswell [21] with semi-structured interviews. The main finding is the ambivalence of endometriosis patients’ experiences with the healthcare system and providers. On the one hand, patients talked about meeting supportive, empathetic providers who were reassuring and took them seriously. This made them feel comfortable and satisfied with the received care. However, they also described encounters with providers who in their eyes did not offer appropriate care, dismissed them or trivialised their pain. The women felt abandoned and not seen as mature patients. Additionally, perceived limited access to specialised endometriosis centres and providers as well as resources such as increased awareness of endometriosis in the healthcare system were expressed.

To our knowledge, this is the first interview study on healthcare encounters from the perspective of endometriosis patients in Hesse, Germany. The results suggest a possible lack of knowledge or awareness of endometriosis and its treatment among providers. However, experiences appear to vary between providers depending on their attributes, resulting in patients feeling that they only received satisfactory care when they met the perceived “right” provider.

A Swedish study supports these findings, as it also revealed ambivalent healthcare encounters for endometriosis patients [10]. The encounters are described as double-edged, as all patients experienced both destructive and constructive contacts. Patients declared being treated with ignorance, but also being acknowledged [10], which is consistent with the findings of this study. The important role of the provider in the patient experience has already been shown for endometriosis patients in another study [32], but also in other pain-related conditions, e.g., degenerative cervical radiculopathy [33]. The providers were also described as facilitators or as inhibiting aspects for patients, with empathy, support and communication being particularly criticised [32,33].

The provider-patient-communication described in the interviews consisted of perceptions of not being taken seriously and of pain being trivialised. This trivialisation of pain, lack of understanding, not being taken seriously and the frustration is discussed in various qualitative studies on endometriosis or abdominal pain [5,7–9,34]. In particular women’s pain seems to be often dismissed as “normal” dysmenorrhea [35], which can lead to feelings of helplessness, guilt and can influence future healthcare encounters [34]. This normalisation of women’s pain can be seen in the context of a researched phenomenon called the Gender Pain Gap, which refers to undertreated and less understood pain in women [34]. However, legitimacy was shown to be crucial for patients with chronic pain. Therefore, women described healthcare encounters as a struggle for both patients and clinicians [36]. Conditions where pain is a main symptom are dominated by women, however, they are often questioned as patients. Those conditions are often underexplored and pictured as challenge for medicine. Besides, women with chronic pain receive less and less effective pain medication and more referrals to mental health providers [36]. Evidence of gender bias in healthcare encounters or prescribed medication is documented for chronic pain [36] and also for other conditions, e.g., stroke care [37]. The root of this gender bias in healthcare practice may lie in the organisation or in biased elements of established medical knowledge [38]. In addition, the subjectivity of pain assessment by healthcare providers makes the treatment or experience of pain prone to gender norms [36]. This bias applied to endometriosis care could explain the neglect and normalisation of pain by providers reported in our interviews, as well as delayed or incorrect diagnoses and treatment decisions favouring oral contraception or herbal medicine.

The reported neglect of patient’s symptoms by healthcare providers is referred to as medical gaslighting [39]. Experiences of medical gaslighting particularly affect the availability of care and care-seeking behaviour of women [39]. If they have a trusted provider and feel safe, they are more likely to seek care. In contrast, if they experience medical gaslighting, they would not seek care in the future, feel ashamed and dismiss their symptoms themselves. This contributes to a decreased health literacy in relation to “normal” menstruation [39]. However, the term medical gaslighting is contentious and not only an endometriosis issue, but is also discussed in other conditions, e.g., long-covid [40]. The problems in provider-patient-communication reported in the interviews may be explained partly by the Gender Pain Gap and medical gaslighting.

Not only did provider-patient-communication in general seem to influence the encounters, but also the individual experience and knowledge of the providers. Providers who were described as having experience or expertise in endometriosis were perceived as being helpful and reassuring, and patients felt better cared for and were more satisfied. With providers described as less experienced, patients reported having to be more persistent, experiencing more disbelief and having to ask several times for diagnostics or treatment. These patients often self-diagnosed before receiving their official diagnosis. For self-diagnosis, in particular social media or patient-led self-help groups were a source of information and contributed to self-diagnosis. After diagnosis, the Endo-App was mentioned in the interviews as an important source of information. The main source of information about the condition, its diagnosis and treatment for the patients was the Endometriosis-Association Germany, a patient-led self-help organisation. Patients stated that the association helped them with all aspects of their medical history, especially with navigating the healthcare system, feeling less alone with their condition, and with joining local support groups. Patients can also connect with each other online through their social media, especially Instagram. These online and offline interactions with other patients were highlighted by the patients as an important aspect.

A meta-synthesis including studies from 2004–2018 found that the reported experiences, such as providers insufficient knowledge and treatment of women with ignorance and trivialisation of symptoms, seem to persist over time [8]. Another systematic review supports these results, stating that poor experiences for women, including medical gaslighting, have been identified in qualitative research over the past decades (1999–2018), suggesting that there has been little improvement [41]. One explanation for the perceived lack of empathy for endometriosis patients may be that interviewed providers stated in a study that they felt inadequately trained to address the psychosocial aspects of endometriosis, and half of the gynaecologists did not consider it their responsibility [42].

However, in this study, also a perceived improvement in endometriosis care was reported. This improvement was also seen in current research, which interpreted increased awareness of endometriosis due to higher prevalence rates [15,16].

As the women reported more acknowledgement of their pain after diagnosis, they talked about their diagnosis as a turning point in healthcare encounters. The division of encounters into before and after diagnosis of endometriosis patients was also revealed in previous interviews [7]. However, after diagnosis, the patients also mentioned the trivialisation of their pain and stigmatisation, which may indicate that there seems to exist a lack of understanding or knowledge of the disease by providers. Other aspects of care, such as a lack of treatment options for patients or the fact that a different provider diagnosed the patient (e.g., in the certified endometriosis centres), may also be reasons why a diagnosis did not always lead to perceived better care.

A current toolbox to collect high-quality patient experience data supports the thesis that diagnosis can be a turning point, as the authors divide the experiences into three parts: life before a diagnosis, experiences getting a diagnosis and experiences living with a diagnosis [43]. These domains were all reported by patients in this study, indicating that the interviews covered all important aspects of patient experiences.

Furthermore, the stated recurrent contacts are in line with estimated recurrence rates of 50–80% due to necessary healthcare encounters, even after surgical treatment [44]. However, interviewed patients reported recurrent encounters and provider changes to receive their diagnosis or due to the fact that they were searching for a perceived helpful provider. It is already known that long pathways to an endometriosis diagnosis result in high costs and increased use of the healthcare system [18]. These increased healthcare encounters appear to be partly avoidable and illustrate the economic impact of endometriosis on the healthcare system.

As shown, experiences with providers and provider-patient-communication are described very similarly internationally, despite differing healthcare systems. This suggests that factors like stigmatisation or expertise may be more decisive for endometriosis care than the healthcare system structure.

Our interviews also revealed a need for more holistic endometriosis care. An existing holistic model, the Chronic Care Model by Wagner, has been tested for endometriosis care and complemented by multidisciplinary providers [45]. This model would allow for a patient-centred approach with different providers, and identified the patient-gynaecologist interaction as central to coordinating care, which is consistent with our findings. A recent review also concluded that a multidisciplinary biopsychosocial care model is needed to manage heterogeneous symptoms, possibly in the form of multidisciplinary endometriosis centres [46]. It was suggested that such multidisciplinary centres could consist of gynaecologists, pain specialists, physiotherapists, psychologists, nutritionists, but also general practitioners to provide holistic care [46]. These providers were also requested by patients in our interviews. In agreement with further previous research [5,42], this study supports the importance of enhancing clinical guidelines and promoting holistic treatment practices to optimise endometriosis healthcare.

The interviews also highlight the importance of investigating endometriosis, with patients calling for more research into aetiology, treatment, and non-surgical diagnostic options. Research into endometriosis itself and into healthcare encounters needs to be more emphasised and funded by policy. Regarding diagnosis, laparoscopy is currently gold standard in Germany [13], but this is being challenged by European guidelines [2], supporting the request for alternative diagnostic options, such as, e.g., diagnosis via a salvia test. Several policy interventions and recommendations for healthcare providers could be developed based on our results to ensure quality and to address inadequate or insufficient endometriosis care. For example, funding and resource allocation for procedures and treatments should be politically prioritised. Also, more education and support could be provided to healthcare professionals, particularly to improve the described inadequate provider education and general knowledge about the disease, to potentially speed up diagnosis and to enhance communication with patients. For instance, specific training for providers in communicating with endometriosis patients could be developed, covering not only educational but also psychosocial aspects. Existing chronic care models and multidisciplinary approaches, as described above, could be part of such training. Education on gender bias and gender-sensitive care, as well as the management of chronic pain in endometriosis patients, could also be helpful for providers. Developing such training might increase providers’ knowledge, raise awareness of aspects of endometriosis care that are important to patients, and ensure a more satisfying experience for both patients and providers.

This study adds new insights into endometriosis patients’ experiences and identifies three key themes influencing encounters. Further research is needed with both patients and providers. In order to understand providers’ perspectives on endometriosis healthcare, their experiences could be further analysed. Additionally, research on provider-patient communication and the role of providers in the care process could help enable more positive experiences for patients. Further education and support for both patient and provider could be made available, e.g., through enhancing clinical guidelines. Also, various interventions could be developed to ensure positive experiences, e.g., specific training in communication with endometriosis patients.

One limitation of this study is that the interviews were conducted regionally in Hesse, Germany as an example area. This region was chosen due to low-threshold access to patients and the opportunity to talk with patients face-to-face. It might be possible that regional factors also influence the experiences of endometriosis patients and therefore, the results of this study. Although the general structure of the German healthcare system is comparable across all counties, regional differences in healthcare delivery or access to services may lead to variation in experiences. While we assume that similar experiences are likely in other German regions, or even in other countries with a different healthcare system structure, any generalisation of the findings needs to be done carefully.

Regarding the demographic variety of patients, it is notable that few patients with a lower educational qualification participated in our interviews. This may result in a potential bias in representation. For example, socioeconomic status could influence the healthcare experience and affect patients’ choice of hospital. Patients with higher status may have fewer difficulties in choosing or travelling to care, whereas those with lower status may lack access or information [47]. This needs to be considered for interpretation and generalisation of the results, as the experiences of patients from lower socioeconomic backgrounds may not be fully represented. Additionally, it is notable that only three participants were older than 40 years in our sample and the majority was between 23–38 years old. As age-related differences can influence patients’ experiences and interactions with healthcare providers [48], and peri-, post- or menopausal women with endometriosis in particular may have different healthcare needs, their underrepresentation in our sample may affect the generalisability of the findings due to this demographic factor.

However, participants varied in terms of date of diagnosis and general age range (as defined in the purposive sampling strategy), as well as in the reported experiences, so we assume that we still obtained diverse results across these characteristics.

Another limitation is a potential bias in studies based on patient reporting, as patients might want to talk more about poor experiences rather than what they perceived as good care. It is possible, that positive experiences are underrepresented in these findings. However, we were aware of this before and during the interviews and formulated neutral, open-ended main questions and probing questions to ensure that patients had space to talk about positive experiences during the interviews. In addition, the described ambivalence in the experiences and the explicitly named positive experiences show that a broad spectrum was reported. Furthermore, according to the Thomas theorem, qualitative findings may be subjective, but they are real to the participants, and therefore have real consequences for them [49]. This implies that what patients recalled in our interviews may be biased, but can still be considered valid.

A strength of this study is the used phenomenological approach, which generated detailed interviews and enabled the identification of dynamics affecting patient experience with healthcare. The sample size of 21 women was sufficient to achieve in-depth analysis, as it is at the upper end of the recommended range of five to 25 participants, with saturation typically being reached at this sample size in phenomenological research [21]. In the final three interviews, no fundamentally new insights were generated, indicating that saturation was reached after 21 patients. Given the diversity of age, medical history and healthcare experiences of the patients, we were able to capture a wide range of data and themes relevant to patients with endometriosis. Additionally, the COREQ checklist [25] was used to ensure the quality of reporting of this study.

Conclusion

This study contributes to the limited research on endometriosis patients’ experiences of healthcare encounters. Ambivalence between providers and their communication, or with the same provider over time, affects patient experience. Trivialisation of pain, not being taken seriously by providers and lack of education were described as the main causes of perceived poor experiences, whereas supportive, empathetic providers were portrayed as a positive impact on patients’ experience. In addition, systemic factors such as limited access and allocation of specialised care, but also a perceived increased awareness of endometriosis in the healthcare system, influenced the experiences. The results could have an impact on healthcare encounters of endometriosis patients, as their needs may be better understood. Further research is needed with patients and providers to support them before, during and after diagnosis.

Supporting information

Acknowledgments

The authors would like to thank all the women who participated in this study for taking the time to be interviewed and for sharing their stories.