GPs’ perspectives on patients presenting with endometriosis symptoms: an interview study

Managing expectations

All GPs reported that patients often hold high and sometimes unrealistic expectations regarding both treatment options and the possibility of urgent referrals to specialised care. All GPs emphasised the importance of managing these hopes early through expectation reconciliation. This process was seen as essential for maintaining trustful GP–patient relationships, as patients often anticipated solutions that exceeded the GP’s capacity to deliver. Several GPs described their role in addressing patient expectations based on prior experiences with referrals or care-seeking behaviour. They observed that patients frequently held unrealistic beliefs about gynaecologists’ ability to provide immediate solutions for their symptoms and pain, underscoring the critical role of clear communication and expectation management in consultations with these patients:

‘… The patients believe the gynaecologist can resolve their issues and make their pain disappear, even when that isn’t possible.’ (GP3)

All GPs stressed that managing patient expectations early improves both treatment outcomes and the GP–patient relationship:

‘It’s much easier for me to address things early on in the process. Once they have some initial information, they can come back to me with questions. This makes it simpler to establish a strong GP–patient relationship. I want them to feel confident in sharing their thoughts with me, and I make sure they trust that I take their concerns seriously and know what I’m doing. Building that trust starts right from the beginning.’ (GP6)

All GPs voiced frustration over the challenges of managing patient expectations, particularly when patients often arrive with information about endometriosis and anticipate immediate referrals to a gynaecologist. However, they explained that certain procedural steps must first be completed within general practice before a referral can be made. This misunderstanding can lead to patient dissatisfaction, as they may feel delayed in accessing secondary care despite the GP’s efforts to provide supportive guidance. To address this, all GPs emphasised the importance of managing expectations early, noting that the referral pathway is complex and involves several steps before a referral to a specialist can be made. By proactively addressing these expectations, all GPs felt better equipped to provide effective care and manage patient concerns. Several GPs noted that this proactive communication helped patients understand what to expect when contacting their GP, thereby reducing their frustration and fostering greater collaboration and trust in the GP–patient relationship.

Gatekeeper function

All GPs frequently encountered patients who strongly requested referrals to a gynaecologist; however, gynaecologists had previously advised all GPs to limit such referrals for endometriosis owing to extensive waiting lists, asking them to prioritise other patient groups. This situation puts all GPs under pressure from both patients and gynaecologists, creating difficult dilemmas for them because managing endometriosis often extends beyond their expertise. These cases underscore the challenges all GPs face in balancing patient needs with systemic constraints:

‘The gynaecologist cannot take any action until the initial steps are addressed here in general practice. However, patients often don’t understand this and insist on seeing a gynaecologist right away. I’m trying to manage resources effectively, which makes this a significant challenge.’ (GP1)

The gynaecologists advised all GPs to follow standardised treatment protocols, including the use of pain relief medications (analgesics) and hormone therapy, before considering referrals. In order to maintain patient trust, all GPs prioritised building strong GP–patient relationships through education, ensuring that all treatment options available in general practice are thoroughly discussed. All GPs emphasised the importance of adopting a holistic approach, recognising that some patients might also experience psychosocial challenges. Furthermore, all GPs acknowledged the difficulty in managing symptoms that were not always explainable or validated by diagnostic tests:

‘There are two main aspects to consider. The first is the professional side, where we focus on diagnosis. The second aspect involves the psychosocial factors, which often play a significant role. This includes how the patient manages their education, relationships, and other life circumstances. Sometimes, these psychosocial factors can be just as impactful and occupy as much attention as the illness itself.’ (GP3)

Consequently, all GPs stressed the need to approach these interactions with empathy, affirmation, and appreciation, fostering a supportive and understanding environment for this patient group:

‘Often, it is beneficial for her to feel heard and to have a safe space to come to without experiencing additional distress. It is crucial to convey that I genuinely believe her.’ (GP2)

All GPs emphasised validating patients’ experiences, even when the cause of pain is unclear, recognising that symptoms affect physical, social, and mental wellbeing, and require holistic discussions.

All GPs described challenges when patients’ referrals to the gynaecological department for endometriosis investigations are denied, complicating their ability to explore alternative treatment options within primary care. Additionally, when gynaecological assessments reveal no abnormalities, patients are often returned to general practice without further recommendations despite their persistent symptoms. This lack of guidance added to the complexity of managing these cases:

‘Our greatest challenge is the feeling of being unable to provide the specialised treatment that our patients need. This situation is particularly difficult for GPs, as the responsibility ultimately returns to us.’ (GP4)

When patients’ referrals are denied because their pain is deemed insufficient for further endometriosis investigations or when they are sent back to general practice owing to inconclusive findings, all GPs described a sense of powerlessness and frustration when left to shoulder the full responsibility for managing these patients’ care, against their preference, having tried to seek specialist support:

‘Our greatest challenge is the feeling of being unable to manage on your own. You seek help from a specialist, only to find out that your request is denied.’ (GP1)

The GPs expressed frustration over the challenges posed by the limited availability of referral options:

‘It is a challenge that I often do not have a specific place to refer them to, and even when I do make a referral, you often find nothing ... As a result, the situation remains unresolved and lacks follow-up.’ (GP1)

All GPs perceived the lack of referral options as a barrier, leading to helplessness. They relied on specialists without receiving clear guidance and faced uncertainty owing to the absence of protocols for managing endometriosis in general practice:

‘It is reassuring to have followed established protocols and to transfer responsibility to a specialist, but without clear instructions, it becomes more challenging to assert that I have fulfilled my role and that the next steps are now in your hands. We find ourselves lacking the authority to dictate the process and can only make referrals.’ (GP4)

All GPs recognised the limited capacity of the gynaecology department, where patients with more acute conditions were prioritised over those with endometriosis symptoms. Despite understanding these constraints, they felt a strong responsibility to advocate for their patients:

‘However, I also understand that they [gynaecologists] need to prioritise, which is why we must ensure that we write thorough referrals so that the patients can be appropriately prioritised.’ (GP3)

All GPs acknowledged gynaecologist’s resource constraints but stressed the need to address patients with persistent symptoms, even with normal test results for endometriosis. They felt gynaecologists overlooked the challenges in general practice, which hindered effective management of endometriosis.

Patient rights

All GPs valued a diagnosis and recognised its value and meaning for patients. However, they also recognised that the same treatment could be offered whether or not the patient was diagnosed with endometriosis. They disagreed on the value of investigations, with some believing the underlying cause of pain was irrelevant to treatment, regardless of an endometriosis diagnosis:

‘I have spoken with the gynaecologists, who have stated that they are not doing anything differently from what we [GPs] are doing. It does not alter the treatment or the prognosis. Therefore, I do not always refer them further. Sometimes, I initiate treatment with oral contraceptives, an intrauterine device, or another approach before referring them.’ (GP1)

All GPs observed that if the prescribed medication alleviated a patient’s pain, they often inferred a likely diagnosis of endometriosis and proceeded to manage their treatment accordingly:

‘However, when I suggest that taking birth control pills continuously might provide relief, it leads me to strongly suspect that the individual has endometriosis.’ (GP1)

Conversely, some GPs emphasised the need to prioritise awareness of endometriosis and its potential long-term impact on patients’ quality of life:

‘Fortunately, there has been increased awareness surrounding endometriosis, particularly among young people. When patients themselves advocate for their symptoms, it becomes easier to identify those who come in with abdominal pain, as this could be indicative of various conditions. Therefore, this heightened awareness can facilitate earlier detection, potentially preventing the condition from worsening.’ (GP4)

However, all GPs experienced a notable deficiency in information regarding managing endometriosis within primary care. The existing guidelines were either inadequate or entirely lacking, necessitating that GPs independently seek out subjective resources to inform their practice:

‘I was sitting last week looking up some recommendations about endometriosis. I found that there is a significant absence of clinical guidelines in the Faroe Islands, which complicates the management of this condition …’ (GP4)

Some GPs highlighted that a normal gynaecological examination did not necessarily rule out endometriosis. In such cases, they continued to manage care for patients suspected of having endometriosis, which proved particularly challenging when they disagreed with gynaecologists’ evaluations:

‘If the gynaecologists reject the diagnosis but you still believe it is endometriosis, then I would continue to consider it as such.’ (GP3)

All GPs voiced concerns about the potential consequences for patients’ access to necessary treatment if they relied solely on gynaecologists’ conclusions, particularly when no abnormalities were detected during examinations.

Individual treatment

Several GPs reported having to adjust their treatment approaches to align with the limited resources available in general practice:

‘… if medications ie, Brufen [ibuprofen] and others hadn’t been effective, I would have explored other options, such as referring the patient to a psychologist, and looked into alternative ways to support them in managing their condition and improving their quality of life.’ (GP2)

Collaboration with psychologists and physiotherapists is key to developing comprehensive treatment plans. All GPs stressed a holistic approach, recognising endometriosis’ impact on mental health and social wellbeing, and included referrals to these professionals as an integral part of care.

All GPs emphasised the importance of addressing patients’ psychological symptoms alongside physical ones, recognising that chronic pain often led to depression and other mental health issues. They also noted the impact of endometriosis-related pain on employment and highlighted the need for referrals to municipal services, such as job placement assistance, when patients’ work capacity was reduced.

The GPs recognised their responsibility for patient care but emphasised the need to consider the patients’ resources and capacity for treatment. With limited resources, GPs adjusted their communication and strategies, exploring alternative treatment options:

‘There are times when I feel that if I can’t alleviate her pain and discomfort, she may perceive that I’m not doing everything possible for her. I imagine that when someone is struggling so much, they might be left with the impression that no one is truly helping them.’ (GP2)

All GPs emphasised the need for a supportive approach when patients faced severe pain with no effective treatments. Reassuring patients and allocating extra consultation time helped manage expectations, plan treatments, and build trust in the GP–patient relationship. One GP highlighted that proper preparation was essential for meaningful care:

‘I have to remember to prepare them properly to inform them properly, right from the start. So that you don’t send them out into something, like where I don’t actually remember to take care of all the things that I want to, and that’s what happens if we’re too busy.’ (GP3)

All GPs acknowledged that these patients required additional time and resources to manage their treatment effectively. Despite the constraints of general practice, the GPs expressed a strong commitment to providing the best possible care within available resources.