Diagnostic delay for endometriosis — A bleeding issue

Written by Claudia Unkovich-Mcnab

  Introduction

Endometriosis has been described as a serious public health concern within New Zealand, affecting an estimated 130,000 girls and women (Bush, 2019; Hogarth & Martin, 2018). This gynaecological disease is chronic and incurable and occurs during the reproductive years. It is characterised by endometrial-like tissue which grows outside of the uterus. Proliferating, breaking down, and bleeding in response to the usual hormonal changes of the menstrual cycle, yet resulting in inflammation, pain, scarring, and adhesions due to its ectopic nature (Hogarth & Martin, 2018; Lemaire, 2004). A pervasive issue associated with the disease is a significant delay in diagnosis. This issue is what will be critically examined within the context of this literature review. To begin with, the clinical issue will be described and the research question stated. Followed by an evidence-based discussion around the factors which contribute to diagnostic delay. This will be structured thematically, focussing on the factors which contribute at firstly, an individual-patient level and secondly, at a medical level. Next, the implications for nursing practice will be explored, and finally, two recommendations with relevant rationales will be set out. The literature incorporated within this review has been critically analysed and selected with consideration around its credibility and relevance to the topic. Within the discussion, predominantly qualitative research has been included. This is with the intention of understanding the experience through the perspective of women affected by this disease.

  Clinical issue

Internationally, there is a significant delay in the diagnosis of endometriosis, with research indicating this to be between 6.7 and 11.73 years (Hadfield, Mardon, Barlow & Kennedy, 1996; Nnoaham et al., 2011). It is evident that diagnostic delay has a detrimental impact on the lives of women as well as wider society (Seear, 2009). The impact of the latter relates to the economic cost. Within New Zealand, this equates to an estimated one billion dollars per year (Enoka, 2015). The clinical manifestations of endometriosis vary in frequency and severity; however, they commonly include dysmenorrhoea, menorrhagia, chronic pelvic pain, pain with defecation, dyspareunia, dysuria, and infertility (Ballard, Lowton, & Wright, 2006; Hogarth & Martin, 2018). These symptoms impact negatively on many areas of women's lives, for example, interpersonal relationships, education, employment, finances, physical and psychological status, and lifestyle choices (Denny, 2004, 2009; Gilmour, Huntington, Wilson, 2008; Grogan, Turley & Cole, 2018; Huntington & Gilmour, 2005; Jones, Jenkinson, & Kennedy, 2004; Lemaire, 2004; Moradi, Parker, Sneddon, Lopez & Ellwood, 2014). Wheelan (2003), as well as Huntington and Gilmour (2005), indicated that symptoms of endometriosis can worsen over time. Moreover, a strong sense of uncertainty and decline in quality of life is directly related to diagnostic delay (Denny, 2009; Nnoaham et al, 2011).

 

After working alongside a woman with endometriosis during one of my clinical placements, and witnessing the significant pain she experienced, I became interested in the disease. For me, the weight of the clinical issue—of delayed diagnosis, is substantiated by the prevalence of the disease as well as the negative impact it can have on women’s lives. Although a diagnosis does not equate to a cure or absolute alleviation of symptoms, it can offer women a sense of relief and validation around their experience and enhance the navigation of treatment and management options (Denny, 2009; Manderson, Markovic & Warren, 2008a). Therefore, it is important to understand the factors involved in diagnostic delay in order to work to improve this public health issue.

  PECOT model

 

PECOT category

Information relating to question

Explanation

Population

Women between menarche and menopause, who have endometriosis.

Women between this period are the most likely to experience endometriosis.

Exposure

(intervention)

Women who have a confirmed diagnose of endometriosis.

I will be reviewing literature which relates to womens pathway towards diagnosis. Specifically, the factors which contribute to the diagnostic delay, commonly experienced.

Comparison / Control

N/A

N/A as the focus of this review will be around womens experience and perception.

Outcome

To generate greater understanding of the factors involved in diagnostic delay of endometriosis and raise general awareness around the disease.

In order to decrease diagnostic delay, it is necessary to understand the underlying factors. Through raising awareness of the disease, the importance of decreasing diagnostic delay could be recognised.

Time

Womens onset of symptoms until confirmed diagnosis of endometriosis.

This is the time period of interest, as the literature identifies that the pathway to diagnosis is an often difficult and delayed.

 

  Research question

What factors contribute to a delayed diagnosis of endometriosis in menstruating women?

  Evidence-based discussion

Diagnostic delay at an individual-patient level

The diagnostic delay at an individual patient level is the first phase of delay. It denotes the time between the onset of symptoms to when a woman seeks medical help. Cox, Henderson, Andersen, Cagliarini, and Ski (2003) recognised an average delay time of 3.8 years at this level. However, this may be reduced depending on the onset of symptoms as identified by Denny (2009) and Manderson et al. (2008a). Both papers recognised, that women who experience an onset of endometriosis symptoms during their twenties and thirties, had an increased likelihood of seeking medical attention earlier on. They suggested, that as these women had been asymptomatic and experienced relatively pain-free menstruation up until that point, they were able to recognise the onset of symptoms and categorise this change as potentially pathological. In contrast, they found that women who experienced symptoms, such as dysmenorrhea from menarche, believed this pain to be normal and thereby leading to an increased delay in diagnosis.

Throughout the literature, the normalisation of symptoms in particular menstrual pain and irregularity was a predominant factor which contributed to the diagnostic delay. Prior to diagnosis many women, despite the severity of their menstrual pain, considered themselves to be unlucky as opposed to unwell. They believed menstrual pain was an inherent part of womanhood (Ballad et al., 2006; Cox et al., 2003; Denny, 2009; Manderson, Warren & Markovic, 2008b; Manderson et al., 2008a, Moradi et al., 2014). Several of the papers explored the influencing factors around menstrual beliefs and symptom normalisation. Ballad et al. (2006), as well as Moradi et al. (2014) identified that menstruation was a source of embarrassment or shame for some women. With a belief that through discussing their pain, they may be perceived as weak or unable to cope with it. However, by avoiding these discussions, women had no comparison of other peoples experiences of menstruation and the associated pain and often based their ideas of what may constitute normal upon their own isolated experience. Manderson et al. (2008b) recognised that it was often during adolescence that women began to formulate their beliefs around menstruation. These ideas could be significantly influenced by the important people around them, for instance, their family, friends, and teachers. Although for some women, this was incremental in realising that the severe menstrual pain they experienced was abnormal, for the majority, the normalisation of pain was reinforced. Through both the conversations they shared as well as the observations they made of others around them managing and coping with pain (Cox et al., 2003; Denny, 2009; Manderson et al., 2008b). Many women recalled times at school when they were sent to the sick room, given pain medication and hot water bottles, or sent home, due to painful menstruation. Often without consideration of the severity of their pain or a recommendation to seek medical advice for it (Manderson et al., 2008b; Cox et al., 2003). Manderson et al. (2008b) recognised that teachers carried out these actions with good intentions, however through the action of temporarily excusing young women from performing their social roles, they reinforced a sense of normality around debilitating pain from menstruation. Manderson et al. (2008a) identified that seldom did women discuss the specific nature of their pain, and therefore believed their level of menstrual pain to be at the same as those around them. Whelan (2003) pointed out that pain in itself is a subjective experience and therefore, for many women with endometriosis it is difficult to distinguish the boundary between a normal and abnormal experience of pain, especially so considering that many women experience some degree of menstrual pain. Both Denny (2009) and Moradi et al. (2014) identified that prior to diagnosis, many women had never heard of endometriosis and felt that their lack of knowledge on gynaecological issues contributed to their delayed diagnosis.

Several of the papers explored the shift which occurred from women accepting their experience of menstrual pain as normal to re-evaluating it as something abnormal and seeking medical help (Denny, 2009; Manderson et al., 2008a, 2008b). The catalysts for this shift were described by Manderson et al. (2008a) through four distinct categories. These being, intercession— when someone shared their knowledge and skills with a women and thereby encouraged them to seek help; social disruption—when the duration, frequency, and intensity of symptoms increased, and became a persistent disruption to daily life; biographic disruption—when the disruption or inhibition of a women's their imagined biographical path occurred for instance, following a miscarriage or failure to conceive; and lastly self-recognition—when women became confident in determining their pain to be anomaly. However, further delay in diagnosis is commonly encountered once women seek medical help, as described below.

Diagnostic delay at a medical level

Many women throughout the literature, experienced a second phase of delay. This occurred at a medical level, and related to the time in which they presented to their doctors with concerns, until the time they received a confirmed diagnosis of endometriosis (Ballard et al., 2006; Cox et al., 2003; Denny, 2004, 2009; Denny & Mann, 2008; Jones et al., 2004; Hunnington & Gilmour, 2005; Moradi et al., 2014; Manderson et al., 2008a; Grogan et al., 2018). The average delay period at this level was between 3.7 to 5.7 years (Cox et al., 2003; Denny & Mann, 2008). Several authors identified that women felt this delay was predominantly connected to the care they received in primary healthcare from general practitioners (GPs) (Denny & Mann, 2008; Cox et al., 2003; Moradi et al., 2014). The reviewed literature revealed a variety of factors which women perceived to have contributed to their delay, these frequently themed around the attitudes and knowledge held by GPs (Denny & Mann, 2008).

In correlation with the findings above, the normalisation of symptoms, in particular, menstrual pain and irregularity, was a common issue encountered by women at a medical level. For instance, many of the studies reported that women felt that their symptoms were not taken seriously, despite the severity and impact they had on their daily lives. Furthermore, women felt that GPs commonly attributed their pain to a normal physiological response of menstruation, rather than something potentially pathological (Ballard et al., 2006; Grogan et al., 2018; Denny & Mann, 2008). Across the literature, common words such as dismissed and/or trivialised, emerged as descriptors used by women as to how they felt after presenting to GPs with symptoms (Denny & Mann, 2008; Ballard et al., 2006; Cox et al., 2003, Denny, 2009). Denny & Mann (2008) recognised the complexities faced by GPs in the assessment of endometriosis. They suggested that the normalisation of symptoms, existed due to the commonality of them becoming exacerbated around the same time as menstruation. Thereby, detracting the GPs focus away from a pathological basis and search for diagnosis, and directing it towards symptomatic management. For example, several papers identified that for dysmenorrhoea and menorrhagia, GPs tended to prescribe pain medication and oral contraception. Although for some women, these medications helped to regulate periods and temporarily alleviate pain, symptoms frequently reoccurred, which resulted in recurring GP appointments (Ballard et al., 2006; Denny & Mann, 2008; Denny, 2004). Ballard et al. (2006) found that it was not uncommon for women to be trialed on a number of different hormonal therapies, over a number of years, with little success aside from suppressing the symptoms of endometriosis and delaying diagnosis further.

Interestingly, several papers recognised that by the time women presented to a GP with symptoms, they were able to distinguish between the pain of menstruation and that of what they later found out to be endometriosis. This was through the increased duration, frequency, and intensity of the latter (Denny, 2004; Grogan et al., 2018; Huntington & Gilmour, 2005; Jones et al., 2004). However, some women felt that their GPs did not appear to be interested in assessing the subjective nature of their pain, and categorised it early on in the assessment process as menstrual pain (Denny, 2004, 2009). A number of women within the literature questioned their GP as to whether their symptoms could be indicative of endometriosis, yet they were met with a lack of knowledge around the disease as well as a resistance to consider this as a possibility or be referred onto specialist care. For some women, this occurred even when there was a family history of the condition (Cox et al., 2003; Denny & Mann, 2008; Moradi et al., 2014).

Dysmenorrhoea is one of the most common features of symptomatic endometriosis, and throughout the literature, this was a principle catalyst for women seeking medical help (Denny, 2004, 2009; Manderson et al., 2008b; Moradi et al., 2014). Despite this, many women experienced diagnostic delays due to being misdiagnosed with non-gynaecological conditions. For example, a number of papers identified that many women initially received a diagnosis of irritable bowel syndrome (Denny & Mann, 2008; Grogan et al., 2018; Huntington & Gilmour, 2005; Jones et al.,2004), or depression, (Denny & Mann, 2008; Grogan et al., 2018; Manderson et al., 2008b). In addition, it was suggested to some women that their pain was psychological in origin (Denny & Mann, 2008; Cox et al., 2003; Jones et al., 2004). Interestingly, both Manderson et al., (2008b) and Seear (2009) identified that during adolescence when some women approached their GPs with symptoms they were not taken seriously. However, when these women re-presented as they got older and had fertility-related concerns, their symptoms were recognised and they were accurately diagnosed with endometriosis. Throughout their diagnostic journey, women were often sent for multiple different and repeated tests (Grogan et al., 2018). Ballard et al. (2006) recognised that the non-discriminatory nature of some of the commonly conducted investigations such as trans-vaginal ultrasounds can result in false-negative outcomes, leading to further delays.

A strong narrative was portrayed through the literature, detailing women's repeated visits to GPs with the same reoccurring symptoms, yet finding little resolution. In many cases, in response to feeling misunderstood or not listened to, women would present to multiple GPs before finding one which took their symptoms seriously and referred them onto the appropriate specialist services (Manderson et al., 2008; Cox et al., 2003). Once referred, many women finally received the correct diagnosis of endometriosis (Huntington & Gilmour, 2005). Throughout the literature, the important role of nurses in supporting women through their journey with endometriosis became clear, this will be articulated below.

Implications on practice and the role of nurses

The delay in diagnosis experienced by many women with endometriosis is a highly relevant issue for the nursing profession. This is due to the implications the issue has on practice. For example, nurses work alongside women in a variety of settings, and are, therefore, in a key position to enhance the diagnostic pathway and support women through their journey with the disease (Denny, 2004; Gilmour, et al., 2008; Lemaire, 2004). Providing education and health promotion around menstruation to adolescents in schools is something nurses can partake in. Interventions such as these, provide youth with information on the physiology of menstruation, increase comfort in discussing it, and promote knowledge around anomalous patterns and potentially pathological signs (Ballard et al., 2006; Manderson, et al., 2008a, 2008b; Lemaire, 2004). Nurses practicing within primary health care or school settings may be the first point of contact for women experiencing symptoms associated with endometriosis. It is crucial that they carry up to date, evidence-based knowledge around endometriosis so that they are able to effectively assess, support, provide education, and implement appropriate plans and referrals with women (Norton & Holloway, 2016). In parallel with doctors, nurses should act with a high level of awareness of the possible presence of the disease (Altman & Wolcyzk, 2010; Huntington & Gilmour, 2005). Huntington and Gilmour (2005) recognised that the fundamental nursing textbooks present knowledge on endometriosis in a predominantly biomedical-centric manner. Yet, as several authors have illustrated, the symptoms associated with the disease are complex and weave through many different areas in a woman’s life. Therefore, it is important that nurses integrate a holistic and client-centred approach when assessing and working with women (Norton & Holloway, 2016; Denny, 2009; Altman & Wolcyzk, 2010; Manderson, et al., 2008b). It has been suggested that where appropriate, nurses should draw upon the growing body of knowledge from the endometriosis patient community. This knowledge often focusses around possible complimentary lifestyle adjustments, to enhance the management of symptoms (Huntington & Gilmour, 2005; Wheelan, 2003). Above all nurses should take women's reported symptoms seriously, and act as advocates when others do not (Denny, 2004).

  Recommendations with rationale

1— Increased research around endometriosis The literature identified a significant gap in academic research around endometriosis. Therefore, the first recommendation is that there be a significant increase in the funding and establishment of contemporary research on the disease—from both a qualitative and quantitative perspective. Further research, would build upon the pathophysiology of the disease, evaluate and develop upon current medical, surgical, and nursing treatments and interventions, and highlight the impact the disease has at an individual, medical, and societal level. Ultimately, enhancing the experience for women through strengthened knowledge, decreased diagnostic delay, and improved management and treatment options (Denny, 2009; Lemaire, 2004; Culley, Law, Hudson, Denny, Mitchell, Baugarten, & Raine-Fenning, 2013; Moradi et al., 2014). Denny (2009) stated that at present endometriosis is of little interest to the medical profession, yet further research could be the key to giving the disease more credence, generating interest in it, and ultimately improving services.

2—Enhanced education for adolescents and healthcare providers on endometriosis A second recommendation is that there be a greater level education provided to adolescents and healthcare providers on endometriosis. This, of course, would be further improved through the implementation of recommendation one. Education for adolescents, around menstrual health has been suggested throughout the literature, as a way to promote earlier health seeking behaviour. Bush, Brick, East, and Johnson (2017) investigated the effectiveness of an education programme focused upon menstrual health, which was delivered across a number of New Zealand schools. They established strong suggestive evidence that the knowledge provided through this programme increased the awareness around the disease and promoted prompt presentation of young women to healthcare services. This highlights the value in investing public funds into education, in order to promote adolescent health and knowledge and work to normalisation conversations around menstruation. Secondly, it is evident that healthcare practitioners, would benefit from enhanced knowledge around endometriosis. This could be provided through revised medical and nursing curriculum as well as in-service education sessions. Enhanced education would decrease diagnosis time through strengthened symptomatology recognition and general awareness of the disease (Manderson, et al., 2008b; Seear, 2009; Huntington & Gilmour, 2005; Young, Fisher, Kirkman, 2015).

  Conclusion

Many women throughout New Zealand are affected by endometriosis and many of these women will be impacted by the significant delay in diagnosis, associated with the disease. Reducing this delay is dependant on understanding the factors which underpin it. Correspondingly, within the context of this literature review I have considered the clinical issue of diagnostic delay; focussing on the detrimental impact it can have at both an individual and societal level. I have formulated an evidence based discussion around the factors involved in this delay. This has been structured thematically into delay factors which occur at an individual level and factors which occur at a medical level. I have gone on to describe the implications on nursing practice and the role nurses have in the care of women affected by the disease. To finish, I have proposed the recommendations of increased research into endometriosis as well as enhanced education for both adolescents and healthcare providers. Perhaps through the implementation of recommendations such as these, both knowledge and understanding around endometriosis can be strengthened, leading to a decrease in diagnostic time and an improved experience for women.

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