In 2018, I carried out a study on women’s endometriosis medical treatment experiences with Professor Elaine Denny, the UK authority on sociological work on the condition. Elaine reflected that the narratives from our study – of turbulent journeys to diagnosis, of feeling dismissed by health care professionals, of endless cycles of inadequate treatment for symptoms – had not changed significantly from those she first collected from women living with the condition some twenty year prior (Denny & Weckesser 2019). For the next study then, and the one this piece concerns, I wanted to explore the other side of the patient-doctor encounter. Below, I highlight some of the challenges doctors report in treating and diagnosing patients with suspected endometriosis as well as some of their recommendations for how endometriosis care might be improved.
Engaging doctors as participants in qualitative research is notoriously challenging. To take it on, I collaborated with Stella Bullo’s The Language of Endometriosis project, and two doctoral candidates, Amie Randhawa and Zoe Bibbon. Through our networks and snowball sampling, we recruited 18 general practitioners (GPs) and gynecologists. Given the time pressures doctors face, interviews were conducted by phone. The majority of participants were women; some had academic clinical posts (thus an interest in research). Of the GPs, many had a special interest or experience in reproductive health, and one had endometriosis herself.
A Challenging Diagnosis
Doctors described their experiences of treating patients with suspected endometriosis as ‘challenging.’ While lack of awareness of endometriosis and its varied symptomology amongst health professionals is cited as a cause of diagnostic delays, even doctors who are well aware of, and actively on the ‘look out’ for, the condition find it a difficult one to identify:
The challenge with [endometriosis] is, that obviously symptoms can be pretty vague. It’s always on your radar, but knowing when to refer people, particularly in light of the ridiculously long waiting times that we have at the moment, is what can be a challenge.
GPs reported that they have no one ‘typical’ endometriosis patient and that the ‘vague’ symptoms patients can present with make it difficult to identify for referral. That endometriosis can only be diagnosed through laparoscopic surgery is another challenge, further complicated by long referral and surgery waiting times due to an underfunded and understaffed National Health Service (NHS).
Waiting can be part-and-parcel of the diagnostic pathway. One GP stated that doctors use such strategies particularly with younger patients:
GPs often say, ‘Well, I don’t know quite what it is yet, but I’ve ruled out all the really nasty things.’… So, to a very young woman who has only recently started menstruating, [GPs] sort of say, “See how it goes, wait a few cycles, come back.” …[I]f patients don’t come back then it probably was just primary dysmenorrhea [common period pain and cramping] and if they come back, then you start investigating.
From the perspective of doctors, the process of ruling out other possible conditions, such as Irritable Bowel Syndrome, and waiting to see if period pain ‘settles’ or lessens with treatment (typically oral contraceptives), is an integral part of an endometriosis investigation. GPs, however, recognised that from the perspective of patients this management strategy could be perceived as doctors “not taking [patients] seriously.”
GPs recognised women’s rightful feelings of frustration, as they are the ones who must cope with a debilitating and painful chronic condition while waiting for a diagnosis. Describing women who have felt dismissed previously, one GP stated:
[A] lot of the women I see have had a problem for a long time that hasn’t been recognised or have been in pain for a long time and not always had an explanation for that… [S]ometimes they come armed with information because they’re so used to having to battle that they think they might need to again. That can be challenging.
That GPs describe some women as arriving ‘primed for battle’ may not be surprising given how prevalent battle metaphors are in the narratives of women and their ‘quest’ for better health (e.g. #EndoWarrior). Note, however, this was not the experience of all GPs as some described encountering women who were unsure if their symptoms were atypical and who, like the majority of the public, had never heard of endometriosis.
The challenge the GP quoted above refers to is that of moving toward a doctor-patient relationship that is less adversarial and more cooperative. Medical doctor and anthropologist Véronique A.S. Griffith also called for such a shift in her recent ethnography of endometriosis. In striving for this more cooperative approach the unequal dynamics between patients and doctors, with the latter having the expertise but also the power to decide who will and will not be referred for further care, cannot be overlooked. (See also in this Special Issue, pieces by Sameera Khalfey and Nikita Aashi Chadha, which both take up how the racialized politics of endometriosis patient care shapes treatment access).
Improving Endometriosis Care
Acknowledging the limits of their medical knowledge, some doctors argued, is a key a step in improving patients’ endometriosis health care experiences:
[A]s medical doctors we need to get better at saying, ‘I don’t know, but let’s try and find out together’… [T]hat’s a hard thing as a medical professional to say…
Consultations may ‘break down’ when doctors become frustrated that they cannot help someone in chronic pain and patients become frustrated when the professional they have come to for answers has none. (See in this Special Issue, Charlotte Galpin’s piece exploring the ramifications of patients turning to wellnesses industry when healthcare solutions fail them). In these situations, as one doctor argued, all involved must recognize that “medical staff are human too.” Such recognition is necessary for doctors to say that they (and medical science generally) do not yet have solutions and to work more in partnership with patients to find them (through trying different treatments, through research, etc.).
Doctors had additional recommendations for improving endometriosis care. Most GPs interviewed reported that their knowledge of the condition derived from undertaking training placements at gynaecology clinics and/or seeking out specialist information in practitioner journals. Some could not readily recall whether endometriosis was included in their training curriculum and some remember it being a subject covered briefly.
For the condition to have wider recognition amongst GPs, some suggested including endometriosis, pelvic pain and common gynaecological conditions more predominately in the GP training curriculum. Ideally if possible, endometriosis and its varied symptomology, should be included on MRCGP exams (the Membership of the Royal College of General Practitioners qualification), which would better ensure GPs are familiar with the condition. Such recommendations entail a recognition of endometriosis as a common and prevalent condition that warrants being part of generalist, rather than solely specialist, medical knowledge.
Some recommended offering up-to-date endometriosis training for GPs via online and in-person CPD certification courses. (Note: The RCGP, in partnership with Endometriosis UK, recently launched a short online course). Training should include discussions of the wide, complex range of symptoms patient present with (especially overlooked and misdiagnosed symptoms such as bowel pain) and debunk common misconceptions (such as pregnancy as a ‘cure’ for endometriosis symptoms). Investments in NHS endometriosis clinics and research improving endometriosis diagnosis, treatment and care were also called for.
Conclusion: Addressing Menstruation Taboos to Improve Endometriosis Care
“Doctors are people… and in society people are uncomfortable with menstruation… [I]f it’s more openly talked about, what’s normal… and what’s acceptable and what’s not acceptable during menstruation, then GPs and everybody will be more aware and more inclined to identify problems. ”
Doctors noted that diagnoses times might improve if both patients and health professionals had better understandings of what constitutes a typical versus atypical period. Such understandings, however, cannot happen without normalizing open, frank discussions about menstruation, which currently do not generally occur in the UK (Weckesser, et al. 2020) nor in all doctor’s consultation rooms (Seear 2009). Moving endometriosis to a condition that garners the research, investment and attention that it warrants amongst healthcare professionals, the government and the public generally, therefore, will require addressing the stigma and taboos that remain around menstruation.
Denny E, Weckesser A. 2019. Women’s experience of endometriosis. In: Ussher J, Chrisler J, Perz J, editors. Routledge international handbook of women’s sexual and reproductive health. London: Routledge.
Seear K. 2009. The etiquette of endometriosis: stigmatisation, menstrual concealment and the diagnostic delay. Social Science and Medicine. Oct; 69(8):1220-7.
Weckesser, A, et al. 2020. Menstruation Learning Brief: Centring the Voices of Young People. Let’s talk. Period. Plan International UK.
Annalise Weckesser is a medical anthropologist undertaking research on gender and sexual and reproductive health at Birmingham City University. She co-leads ‘The VQ,’ a women’s (sexual) health project, and Centre for Social Care and Health Related Research’s Family, Gender and Health Research Cluster. For further information, or to take part in the study on health professionals’ experiences of providing care for patients with (suspected) endometriosis, please email: Annalise.Weckesser@bcu.ac.uk
Image Credit: Wikipedia