Human Fertility, 2014; 17(3): 218–222 © 2014 The British Fertility Society ISSN 1464-7273 print/ISSN 1742-8149 online DOI: 10.3109/14647273.2014.929184 INVITED REVIEW Defining what is normal at menopause: How women’s and clinician’s different understandings may lead to a lack of provision for those in most need Hum Fertil (Camb) Downloaded from informahealthcare.com by Imperial College London on 09/04/14 For personal use only. HELENA RUBINSTEIN Research Department of Clinical, Educational and Health Research, University College London, UK Abstract Many aspects of women’s reproductive life have fallen under the medical gaze and the end of women’s fertility has been no exception. For several years hormone therapy (HT) was considered the best solution for menopause symptoms and in some countries more than 50% of eligible women were prescribed oestrogen. Clinicians were accused of ‘medicalising the normal’ by applying the biomedical model to a natural lifestage and thus defining menopause as an illness which deviates from biological normality. The purpose of this paper is to review what women and their clinicians ‘know’ about menopause, and what happens when these two different types of knowledge collide. In the last decade, menopause has been demedicalised, partly because of criticism from feminist researchers, partly due to the publication of major studies indicating elevated risk of breast and ovarian cancers and venous thromboembolisms and, partly because neither physicians nor women experiencing menopause know what constitutes normality. The combined result has been that many clinicians have been cautious about prescribing drugs to treat problematic symptoms. This raises the concern that demedicalisation of menopause may have gone too far, leaving the 20–30% of women who experience distressing symptoms without adequate help or relief. Keywords: Demedicalisation, oestrogens, primary care What is normal at menopause? investigation. Therefore, illness is a measurable deviation from biological normality (Blaxter, 2004, p. 11). The specific agent that is identified as the cause of problems at menopause is a ‘deficiency of hormones’, particularly oestrogen and progesterone but beyond this, the ability to apply the biomedical model strictly becomes problematic. This is because it is extremely difficult to define what is meant by a deviation from biological normality. The median age of menopause is 51 (Palacios et al., 2010) but the range of normality can be anywhere between 40 and 57. Tests that measure hormone levels to identify the onset of menopause are frequently inconclusive. The vasomotor symptoms (hot flushes and night sweats) most commonly associated with the onset of menopause do not correlate with the levels of oestrogens in plasma and can be the same in asymptomatic and symptomatic women (Freedman, 2002). Thus, a simple scientific investigation may not be able to confirm whether a woman is in peri-menopause. It is difficult for ‘normality’ to be defined precisely. Many aspects of women’s reproductive life, including puberty, childbirth, pregnancy and problems of sexual activity have come under the medical gaze (Kaufert & Gilbert, 1986) and menopause, the end of a woman’s fertility, is no exception (Morris & Symonds, 2004). The medical profession has often been criticised for treating natural life course events as illnesses in search of a treatment. This is not confined to feminist critiques: the medical profession itself has become acutely aware that there is an increasing tendency to classify people’s everyday problems as diseases (Moynihan, 2002). The British Medical Journal is littered with articles which alert physicians to the danger of ‘medicalising the normal’. Medicalisation, defined by Conrad (1992) as using impersonal, medical terminology to define a problem in terms of illness and disease, implies adherence to the biomedical model. Disease is caused by theoretically identifiable agents and the identification of illness is the result of objective, value-free, scientific Correspondence: H. Rubinstein, Research Department of Clinical, Educational and Health Research, University College London, 1-19 Torrington Place, WC1E 7HB, London, UK. Tel: ⫹ 44 (0)207679 1649. E-mail: h.rubinstein@ucl.ac.uk (Received 15 March 2013; revised 18 June 2013; accepted 7 December 2013) 218 Hum Fertil (Camb) Downloaded from informahealthcare.com by Imperial College London on 09/04/14 For personal use only. Defining what is normal at menopause 219 Some symptoms at menopause were reported by 70–80% of women (Nelson, 2008), and between 20% and 30% report that these are severe enough to affect their quality of life (Blümel et al., 2011). Women are often told that symptom duration should be for a period of two or three years but data from the Australian Study of Women’s Health indicated that the prevalence of hot flushes, night sweats, stiff or painful joints, and difficulty sleeping, can still be elevated seven years after the onset of menopause (Berecki-Gisolf et al., 2009). A small percentage of women experience symptoms to the end of their lives (Kronenberg, 1990). Clinicians are unable to reassure women about the length of time they might experience symptoms because it is difficult to define normality. Women want to know if it is normal to commence menopause at 42 years of age, to have disruptive symptoms and to have them for 10 years or more. No definitive guidelines exist and so both women and clinicians have to make the judgement for themselves. long before the medical profession reviewed the results from the WHI. Thus, the original report was criticised for poor study design, the use of unrepresentative groups, for failing to clarify effect sizes, over-stating the levels of risk and for overlooking the possible protective effects of HT (MacLennan, 2009; Shapiro et al., 2011). Subsequently, both the British and North American Menopause Societies issued consensus statements recommending HT as the most effective treatment for menopause symptoms provided low doses are given early in menopause, and for the shortest period possible. In fact the pendulum may have swung back to pre-WHI times: the motion ‘HRT should be given for primary prevention in the asymptomatic healthy menopausal woman’ (Stevenson, 2013) was presented to the 23rd Annual Conference of the BMS and was passed with a large majority. We may be witnessing the re-medicalisation of menopause. What women know Treating the normal: the rise and fall (and rise again?) of Hormone Therapy Despite the failure to define what is normal at menopause, Hormone Therapy (HT) was the treatment most frequently prescribed to help women cope with the most problematic symptoms. HT provided effective relief for 90% of women and was increasingly used prophylactically to prevent osteoporosis, cardiovascular disease and to treat the general effects of ageing (Williams et al., 2007). By the mid-1990s it was estimated that up to 40% of women of menopausal age in the USA, 52% in France and 30% in the UK were using HT (Hersh et al., 2004; Gayet-Ageron et al., 2005; Mishra et al., 2006). Menopause was treated as a medical condition and the use of HT had become normalised. This level of prescribing abruptly declined after reports from two epidemiological studies. The Women’s Health Initiative (WHI) and the Million Women Study indicated elevated risks for breast and endometrial cancers, and venous thromboembolism (Writing Group for the Women’s Health Initiative Investigators, 2002; Million Women Study Collaborators, 2003). In the USA, there was a 66% decline in the prescriptions for combined oestrogen and progesterone and in Canada the total number of new users fell by 28% (Hersh et al., 2004; Pharm et al., 2007). In the UK, many general practitioners refused to prescribe HT, particularly those who had qualified most recently (Panay, 2012). Both women and clinicians had ‘lost trust’ in HT (Graziottin, 2005) and it went from being regarded as a general solution to age-related problems, to being considered suitable only for women with real medical need (Watkins, 2007, p. 284). Thus, it seemed that we had stepped back from the brink of wholesale medicalisation of menopause. Nevertheless, women continued to experience problematic symptoms and there was no new or effective alternative treatment. It was not © 2014 The British Fertility Society These developments raise a number of questions. What do women and clinicians know about this stage of life? Has the medicalised view of menopause continued to dominate? And are women receiving the advice and support they need? The following is based on a section of a larger study with 295 peri- and postmenopausal women that focused on predictors of treatment uptake at menopause and a sub-sample of 30 women who were interviewed about their experiences having kept detailed diaries. The research was given ethical approval by the Cambridge Central National Research Ethics Services East of England Committee and participants gave informed consent. Although 88% of women agreed with the statement ‘the menopause is a big change in women’s lives’ the majority of women reach menopause with little or no knowledge of the event (Rubinstein & Foster, 2012). For example, many were unaware that the median age of menopause is 51, associated menopause with much older women and were surprised if symptoms occurred in their mid-40s. A common belief was that menopause happened to older women – at least to women who were older than they were, by which they meant women who were nearer to 60 rather than 50 years of age. I don’t really know because I am the kind of person who would actually read and study this stuff and I… because for me I thought it doesn’t come for another 10 years. I never thought. I always associated menopause with 56, 57 year olds. I never thought that menopause would come early. So when it came to me I think it was a shock. It is not clear why expectations of menopause have been pushed so far into the future but we may hypothesise that there has been a recalibration of the ‘social clock’. The theory of the social clock suggests that age norms exist for significant life course events such as marriage and childbirth (Rook et al., 1989). In today’s society women 220 H. Rubinstein Hum Fertil (Camb) Downloaded from informahealthcare.com by Imperial College London on 09/04/14 For personal use only. have come to believe that they can delay childbirth into their late 30s and 40s with limited consequences. It may be that such a delay has been transferred to menopause and may explain why women seemed so surprised about the age of onset. A further reason for the surprise may be that women feel well-informed about other aspects of the female reproductive cycle such as puberty, pregnancy or childbirth and could not understand why their expectations of menopause had not been managed in the same way: …. like when you have your period, when you have your pregnancy you study about it before.When I wanted to get pregnant I read books, when I wanted to have a child I read books. I never read anything about menopause until it hit me and given that it was kind of haphazard - internet and asking here and there. I think the knowledge of what you are going to go through, certain symptoms and how to deal with it - if I had it before it would be amazing. If I knew what it was. Because one night I couldn’t sleep and I didn’t know what was wrong with me and I thought I had a temperature. It took me a week or so to realise that maybe this is the menopause. At times of uncertainty women look to their clinicians for both validation and reassurance but because there is no clear definition of what is normal this may not be forthcoming. Women were dismayed that doctors seemed unable to give a precise diagnosis and blood tests were not definitive. The lack of diagnostic precision led to the belief that GPs were not well informed about menopause. For example, 37% of women did not believe that ‘doctors are the experts when it comes to offering advice on menopause’. Women also criticised GPs for not listening to them when they reported symptoms such as hot flushes in their mid-40s and several participants commented that they had been told that they were too young to be experiencing menopause despite the fact that earlier menopause was a familial trait. Furthermore, there was a concern that GPs may understand the physical aspects of menopause but knew little about the emotional and psychological aspects and so were ill equipped to deal with women who came to them for advice. Thus, women know few substantive facts and so cannot be certain of what is normal. As women enter menopause they can hold multiple beliefs simultaneously and can represent menopause as a pathological condition, a problem that is amenable to treatment with HT, a time of conflict and confusion, a symbol of ageing or as a positive time when women have more time for themselves (Rubinstein, 2012). The questions that women asked included ‘At what age should I expect to start menopause?’ Do other women experience the same discomfort? and ‘Is hormone treatment safe?’ GPs cannot give specific answers to many of these questions. Women are not sure that what they are experiencing is normal and, as discussed below, many doctors are unable to define what constitutes normality. What clinicians know In comparison, clinicians know that the median age of menopause is 51 years. However, there is a tendency to ‘think categorically’. That is to say if women present with hot flushes, night sweats or vaginal atrophy earlier than 50 years of age they may be told that these are unlikely to be due to menopause. Clinicians may offer blood tests but, as discussed, levels of oestrogens in plasma do not correlate with presence or absence of hot flushes and if blood tests indicate that hormone levels are ‘normal’ then the woman is declared to be ‘non-menopausal’ (Ballard et al., 2001). This cautious response may, in part, be a consequence of the desire not to medicalise a normal life stage but may also be one reason why women feel that clinicians are not expert on this area. It is perhaps unfair that general clinicians are expected to be experts in all common conditions but anxieties about lack of expertise are exacerbated because the advice women receive about menopause can be contradictory and confusing. Women reported that some GPs were unwilling to recommend HT or had changed their minds about its safety and benefits whilst others offered HT as the only solution. Unlike other conditions there seemed to be no alternative treatments Er….and sometimes their solution to it is either to put you straight onto HRT or not. I think it is a sort of condition that has to be treated with 2 or 3 approaches for each person. It isn’t solely a medical thing and it isn’t purely erm something you have to deal with by yourself. But you do need a support system of some sort. This sole emphasis on replacing oestrogen and progesterone may be surprising when the precise mechanisms resulting in hot flushes and night sweats are unclear. Several causes have been suggested including change in thresholds for maintaining optimal core body temperature (Freedman, 2005), loss of responsiveness of the peripheral vasculature (Charkoudian, 2003), neurochemical changes (Deecher, 2009) and genetic polymorphisms (Ziv-Gal & Flaws, 2010). To date, the research focus on HT has eclipsed the investigation into other possible explanations for disturbances at this time of life and may have attenuated the development of other forms of support. Clinicians have to focus on objective measures and respond to clinical evidence. They responded quickly and appropriately to the WHI and Million Women Study by reducing prescriptions for HT. Some ceased prescribing HT, especially younger GPs (Panay, 2012) and others switched to different formulations. Lakey and colleagues (2010) reported that 87% of doctors became cautious about HT use, especially primary care providers who had less detailed knowledge than obstetricians and gynaecologists. As we have seen, the WHI report led to confusion and disbelief among women but also inadequate knowledge among physicians (Bush et al., Human Fertility Defining what is normal at menopause 221 2007). Only recently has there been some consensus on HT: The British Menopause Society, The Endocrine Society, and The Association of Reproductive Health Professionals have agreed on several key points about the relevance and safety of HT and regard it as having an important role in managing symptoms at menopause (Stuenkel et al., 2012). Nevertheless, there appears to be a time lag in this information being incorporated at the primary care level; women report that treatment practices and information provision are patchy and inconsistent. Hum Fertil (Camb) Downloaded from informahealthcare.com by Imperial College London on 09/04/14 For personal use only. When two types of knowledge collide There are several points of apparent agreement in terms of what women and clinicians ‘know’ about menopause. It is not an illness though medical terms are often used to describe the experience; it is a normal developmental stage that is affected by other events at this time of life; and HT can be used to treat distressing and disruptive symptoms but is not without risks. However, women and clinicians view menopause from different standpoints. Women focus on their personal, bodily experiences, changed emotions and the impact on their daily lives whereas doctors focus on chronological age, objectively measured indicators such as changes to the regular cycle, and hormone levels tested in the laboratory (Hyde et al., 2010). The majority of women think of menopause as a major change in their lives whereas doctors (now) think of menopause as a natural phase that may be risky. Women want specific explanations and confirmation that their experiences are ‘normal’ whereas doctors cannot easily define ‘normality’ and have to work within a wide margin of error. Women demand timely and authoritative information of the kind they would expect to receive for other (partially) medicalised areas (e.g., childbirth and pregnancy) whereas clinicians feel that the increase in research data is important but has, to date, created more uncertainty (Bush et al., 2007). Can de-medicalisation go too far? Since the reports from the WHI and the Million Women study the treatment of menopause has changed. There is currently less reliance on prescribing HT and the medical profession has repositioned menopause as a normal, healthy phase of women’s lives. In practice, this has meant reinforcing the message that some discomfort is to be expected and should be tolerated. Menopause is not considered to be a pathological condition but women continue to present with severe symptoms and there is a reluctance to prescribe drugs to alleviate them. To date, no alternative treatments have been found to be as effective as HT though there have been some encouraging, preliminary trials using Cognitive Behavioural Therapy as a means of reassigning negative beliefs but this is not yet widely known about (Ayers © 2014 The British Fertility Society et al., 2012). Clinicians who focus on drug-based treatments can offer little alternative support. The renewed focus of treating symptoms at this stage of life as routine and unexceptional may mean that the 20–30% of women who experience distressing and disruptive symptoms are dismissed and told that ‘you just have to get on with it’. This was a common complaint among women who reported that their concerns were not taken seriously, nor were they given authoritative or consistent information. Furthermore, the menopause is unlike other major female reproductive events in that women are not provided with the same level of information prior to the event. Some resources are available such as the British Menopause Society, Menopause Matters website and Women’s Health Concern but clinicians tend not to routinely draw these to women’s attention. Future research needs to focus on the mechanisms behind the most common symptoms at menopause and to explain the wide range of individual differences that women experience. There is also a need for specialist provision to be more widely available and for information to be consistent, concrete and timely. Whilst the wholesale medicalisation of menopause may be undesirable, total de-medicalisation may have detrimental effects for the minority of women who require treatment and support during this stage of life. In order to define what is abnormal at menopause, we must first be able to define what constitutes normality. 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