The patient journey through primary care is used to present the analysis under the following thematic headings and subheadings:
Managing the initial consultation(s)
In the clinical scenario, ‘Alice’ presented with symptoms that had not been previously assessed, investigated, or diagnosed. For the GP, navigating the wide range of possible explanations for Alice’s symptoms was the first stage on the journey from symptom evaluation to considering possible diagnoses. This was a complex process of working through a clinical hierarchy, where possible ‘red flags’ needed to be evaluated and excluded before other diagnoses (including endometriosis) could be brought into active consideration:
‘Always as a GP, we’re terrified of missing something horrible, so you think about red flags.’
(GP30)
In parallel with considering possible explanations for Alice’s symptoms, GPs reflected that endometriosis can present in multiple ways, with a wide range of possible gynaecological and non-gynaecological symptoms. This clinical inconsistency and unpredictability presented GPs with added complexity during the initial evaluation:
‘The symptoms can be very vague, from simple chronic pain, pelvic pain to pain related to periods, dysmenorrhoea to dyspareunia, bowel problems, chronic fatigue, other symptoms and consequences such as infertility, So the presentations are very different and that makes it challenging. And obviously you still have to consider a lot of diagnoses when you have a patient presenting in front of you.’
(GP26)
GPs’ initial assessment included exploring any medications Alice had tried already and the impact of her symptoms on her emotional wellbeing and social functioning. This included exploring her expectations of the consultation, for example, symptom control, diagnosis, or addressing specific concerns such as fertility or fear of malignancy. Because endometriosis is not a diagnosis that can be made in primary care, the tests GPs ordered were predominantly and knowingly to rule out other potential causes.
Introducing the possibility of endometriosis
GPs reflected on how and when they might introduce endometriosis as a potential cause for Alice’s symptoms during the clinical journey from presentation with symptoms to investigations and/or treatment:
‘If there’s something quite clear in the history that put endometriosis at the top of my list, then I might float it as a possible, yes. But I’d have to be quite sure that that was what’s going on.’
(GP27)
Several GPs felt they were unlikely to raise endometriosis as a possible diagnosis during the first consultation. They described waiting to assess the impacts of treatments or until they judged that it was an appropriate moment, having developed a trusting relationship with Alice:
‘It can help sometimes if you build up a bit of a relationship […] They might not want to tell you the first time they meet you that they’re actually having really painful sex, and they might be quite worried about that. Or they might not want to open up to you about that, but maybe once you’ve seen them once or twice, they might say.’
(GP21)
Some GPs described their caution, concerned that by mentioning the word ‘endometriosis’ patients risked being adversely affected by researching and worrying about the potential consequences of endometriosis (for example, regarding fertility), when they might not have this diagnosis at all:
‘You’re going to keep it generalised because you don’t want people to go away worrying that it’s X, Y, or Z, when actually at that point you might not know.’
(GP33)
Some GPs worried that once endometriosis was mentioned, GPs would feel pressure to ‘follow through’ and refer to secondary care for a diagnosis to remove uncertainty:
‘When I start that conversation, then I should be prepared to refer her for further investigations. Now, if I don’t do that, I think I would be in a very difficult situation having raised that diagnosis.’
(GP41)
Other GPs felt that raising endometriosis as a possible diagnosis offered a doorway to an open conversation which could enable women to respond to emerging or evolving symptoms, or about potential risks and benefits of referral:
‘I’m only mentioning it so you know I’d thought of it, and so that you know what to watch out for.’
(GP42)
GPs described a range of strategies including introducing endometriosis as one possibility within a list of potential diagnoses or creating opportunities for the patient to raise endometriosis first. Sharing and discussing their thinking helped GPs ensure the patient understood what tests they were going for and why. Many felt that resources based on symptoms which offered balanced, accurate information that they could confidently signpost women to at this pre-diagnosis stage would help them with these conversations.
Decisions about investigation and referral
GPs described how women’s priorities were paramount when navigating and discussing treatment, investigation and referral decisions. For example, if Alice wanted contraception then hormonal therapy would be appropriate to offer, but this would usually not be the case if she wanted help because of fertility concerns.
Several GPs described using trials of treatment (either before or in parallel with referral), usually with hormonal treatments (including contraceptive pills or the intrauterine system), as both a therapeutic intervention and one which could add information to the diagnostic process. To be effective in this way, these trials of treatment needed to be underpinned by continuity of care (ideally) and supported by effective communication both with the patient and any other clinicians who might see her at subsequent consultations:
‘You have to really try and positively engage the patient to come back and really convince them that you want them to come back. Because you know if you give them a 3-month trial of treatment, it doesn’t help, and they think “‘Well nothing really happened last time, I’m not bothered, I’m going to leave it 6 months, and then I’m going to come back”, the years slip so quickly in that kind of timescale.’
(GP39)
Referral was straightforward in some situations, such as if there were concerns about fertility (including established sub-fertility), severe symptoms that could not be adequately controlled with treatment available in primary care, symptoms suggesting extra-pelvic spread of endometriosis, and when the patient asked for referral for specialist care or a diagnosis.
Some GPs felt that all women with possible endometriosis should have referral offered. However, GPs also described how they approached caring for women whose symptoms were well controlled with primary care treatments or who said they did not want a referral to hospital. This would be a shared decision with the woman where she was offered choice:
‘It is very much led by […] do they want to actually find out the underlying cause, or do they just want to treat the symptoms; it’s very much dependent on them.’
(GP22)
GPs were mindful that diagnosis requires an invasive procedure in secondary care, and that laparoscopies have potential risks, including pelvic pain and adhesions:
‘The only way you can really make it is with a laparoscopy and you don’t really want to put a woman through that unless you’ve reached the absolute end of the road.’
(GP6)
Several GPs described experiences where referral into secondary care had resulted in the specialist electing to focus on symptom management, rather than undertaking any investigation to seek a diagnosis, which they could have done themselves in primary care. This could influence GPs expectations and approach to referral decisions:
‘Sometimes they’re just discharged, aren’t they, with their oral contraceptive pill and I think they’re just a bit like, “Well my GP could have done that.” And I think sometimes GPs will feel “‘well can’t we just put them on the pill and then it’ll be what they were going to treat them with anyway’”
(GP3)
The value of a diagnostic label
GPs were largely supportive of the value of a diagnosis and identified its benefits for informing both current and future management (Figure 1). These included support for informed shared decision-making, offering access to specialist advice and treatment, and as a framework to support ongoing care needs, including new or emergent symptoms or concerns. However, the recognition of significant unknowns and uncertainties underpinned many GPs’ approach to the treatment and pursuit of a diagnosis. These included the variability of women’s experiences of endometriosis, the unpredictability of clinical sequelae, and whether a timely diagnosis would change treatment, or prevent or reduce future complications.
Figure 1. GP perspectives on what a diagnosis can enable.
GPs were aware of the wide spectrum of symptoms and impacts of endometriosis, including the extent to which the endometriosis might be correlated, or not, with future fertility. Knowledge of this uncertainty shaped how they tailored their advice to individual patients. This included uncertainty when caring for women who had been incidentally diagnosed with endometriosis in the course of other investigations:
‘...often you find spots of endometriosis and actually how much have you really helped someone in that situation? They’ve got a diagnosis, they’ve got worry, they know that they’ve got an increased risk of infertility possibility over the course of the data, it’s not necessarily applying quite as well to them if they’ve got a couple of spots, and it does, in the general person who, who has endometriosis.’
(GP10)
When primary care treatment could not effectively manage Alice’s symptoms or concerns, this was considered clear grounds for onwards referral. However, if primary care treatment effectively managed her symptoms, whether further action was necessary or appropriate was an uncertainty reflected on by many GPs, and an area where they wished for guidance:
‘Do I just give the pill, Am I reassured that even the pill will defer their endometriosis? I don’t know the answer to that really. So, if it [endometriosis] was busy doing its dastardly deed despite the pill, then...’
(GP42)
While GPs said that they would ‘never stand in the way’ of a woman who wanted a diagnosis, some cautioned that having a diagnosis might not address all of her questions or concerns:
‘Sometimes it’s a burden, well sometimes it’s a freedom […] People can be relieved to have a name, and I guess frustrated sometimes when there’s no name. But you know it goes both ways, doesn’t it? Because if they start looking for information, you know there’s a lot of devastating news out there. Because it can bring about more anxiety as well […] Although it’s a diagnosis, everyone is so different with their experience of endometriosis, it isn’t really that helpful, in a way.’
(GP34)
In the original scenario, Alice was aged 28 years. GPs were then asked whether they would have different considerations if Alice was aged 17 when she first presented with dysmenorrhoea. GPs reflections on managing a teenaged Alice included the uncertainty about what ‘normal’ dysmenorrhoea is in adolescence, the balance between the benefits and risks of laparoscopy at this stage of life, and whether long-term outcomes would be influenced by an earlier diagnosis or treatment. GPs worried about holding responsibility for Alice’s fertility concerns, both in adolescence, and for what she may (or may not) want in her future:
‘If it’s someone quite young, then at what point do you intervene and send them in for a laparoscopy? It might be that it can easily managed with the combined pill or something like that, the symptoms, but then you’re kind of worried in the back of your mind […] is that ultimately doing them any good? Is this endometriosis going to get worse while you’re doing that?’
(GP27)
GP explanations for delays in diagnosis/the journey to diagnosis
Potential explanations for the lag between presentation to primary care with symptoms and achieving diagnosis are presented in Figure 2. Some of these have already been discussed, including the need to follow a clinical hierarchy of diagnoses, the variability of the symptoms and impacts of endometriosis, concerns about laparoscopy, managing trials of treatment (as sanctioned in the National Institute for Health and Care Excellence [NICE] guidance),17 and supporting women who, at points in their care journey do not want referral (for example, if their symptoms are well controlled in primary care). Additional explanations for delays in diagnosis included GPs lack of awareness of or familiarity with endometriosis, lack of regular or focused education on women’s health and endometriosis, and challenges when negotiating the primary care/specialist interface.
Figure 2. GP explanations for delays in diagnosis.
The long-term/enduring role(s) of primary care
Moving from initial presentation to primary care with symptoms to a diagnosis of endometriosis was experienced by GPs as a longitudinal journey which required iterative appraisal of both existing and evolving symptoms and priorities. GPs identified a long-term primary care role for women with both possible and confirmed endometriosis. This included supporting women through their diagnostic journey (including while they were also being cared for in secondary care) and managing emergent symptoms or concerns (for example, about fertility), and care needs in later life such as potential impacts of hormone replacement therapy on experiences of symptoms.
While having a confirmed diagnosis could be a helpful tool to underpin this long-term role, it was not always seen as essential:
‘Actually, whether you call it endometriosis, to a certain extent what you do about it is maybe more important for the woman.’
(GP1)
GPs identified that building rapport, developing trust, and having enduring primary care relationships were central to supporting this longitudinal care process, which could be facilitated by fostering and promoting continuity of care:
‘You try to set up a bit of rapport beforehand because even though they’ll go to the gynaecologist, and maybe get their diagnosis, even then it seems that they kind of are given a treatment and discharged, and then they come back to primary care, and you sort of want to have established that rapport.’
(GP3)
