Chapter 2The experience of menopause and perimenopause
I wish I knew at 30 what I know now. Perimenopause is not for old ladies and is not just hot flushes. Not knowing this before I entered this phase of life and not starting MHT [menopause hormonal therapy] when symptoms first appeared has negatively impacted my life. … I've been gaslit and misdiagnosed, had symptoms ignored and dismissed, told they're all in my head or it's stress, told to exercise, take a holiday, have a glass of wine.
2.1Throughout the inquiry, women shared their personal stories of the significant impact menopause and perimenopause have had on their lives. The stories told by submitters highlighted that, for some women, the menopause transition can involve debilitating symptoms that can affect all aspects of a woman’s life. Their direct experiences reveal the difficult challenges faced by many women in Australia to access the care and support they need.
2.2Firstly, this chapter discusses the extent to which women are unprepared and uninformed about menopause. Secondly, the chapter explores the lack of existing support and information, including for women experiencing early menopause. The chapter then discusses the social impacts of menopause and the mechanisms through which women are trying to access support.
2.3Finally, the chapter discusses the lack of an existing evidence base relating to experiences of menopause across all socio-demographics. It also outlines the gaps in data and understanding of the experiences and impacts of menopause for First Nations women, women from culturally and linguistically diverse (CALD) communities and LGBTQIA+ individuals. The chapter concludes with the committee’s view and recommendations to build a better understanding of menopause and raise awareness across the community.
Uninformed and unprepared
2.4Many women spoke to their personal experiences of having never heard the term perimenopause, or not understanding that they could be impacted by symptoms prior to their final menstrual period. As Sandy, a submitter who shared her lived experience with the inquiry, highlighted:
I hadn’t come across the term ‘peri-menopause’ until I was in my 40's, even then I didn't know what it meant and certainly had no idea, even when I was in the midst of it what the symptoms were.
2.5Rebecca, who appeared at a hearing in Melbourne, further echoed this sentiment:
Then I spoke to a girlfriend over coffee and said: 'Look, I'm really struggling at work. I just have no idea what's happening.' She said, 'Oh, maybe you're peri.' I was like, 'What? What is "peri"?' 'Perimenopause.' 'Menopause?' 'No, no—perimenopause.' I had no idea that this existed in this day and age.
2.6Further, Jill who detailed her lived experience to the committee, highlighted:
Like many others I was familiar with menopause being referred to as the “change of life”. As it turns out, what I was massively less aware of is how that change could manifest itself in reality. I was totally unprepared for the impact that menopause would have on me, my life, my family and my finances.
Rapid onset and confusing symptoms
2.7Women discussed their limited knowledge of the variety of symptoms that could be caused by the menopause transition, beyond hot flushes and night sweats.
2.8Many women emphasised that their prior knowledge of menopause meant that they expected symptoms related to hot flushes; however, symptoms that affected the whole body, for example, cognition difficulties or joint paint, were unexpected for many women. Submitters to the inquiry outlined symptoms that appeared rapidly and affected all aspects of their life and were difficult to attribute to menopause.
Physical symptoms
2.9Naomi, who appeared at a hearing in Sydney, emphasised the whole of body impacts of her menopause symptoms:
Menopause impacted my life, however, far beyond anything I thought possible. I had hot flushes, vaginal dryness, insomnia, anxiety, extreme fatigue, brain fog, joint pains, heart palpitations, increased hypertension, osteoporosis, IBS, heartburn, anger, rage, nasal congestion, rage, stress fractures, lethargy, apathy, rage, grief and headaches. My migraines got worse. I had night terrors—which was horrendous—and painful sex, which, given I was in a relatively new marriage, was not much fun either. The list just went on.
2.10Another private individual described similar experiences in her submission:
I began experiencing unexplained hot flushes, night sweats, insomnia, joint pain, memory issues, mood instability (episodes of uncontrolled rage), was diagnosed with osteopenia & experienced significant weight changes… I had no understanding of what on earth was happening to my body because not one of my doctors had ever mentioned perimenopause to me throughout my 40’s.
2.11Rachel, a submitter in her early 50s, stated that:
At 48… I suddenly started to feel as if my whole body was letting me down, my eyesight one day went from perfect to, I can’t read a text message. My joints were in excruciating pain, I could no longer exercise, getting up and down stairs was torturous. Every day I woke up with impending fear of doom and intrusive thoughts and I had terrible insomnia, I felt awful.
Symptoms affecting mental wellbeing
2.12Some submitters also emphasised that the first indication that something was changing in their bodies was triggered by changes to their mental and emotional wellbeing.
2.13At a hearing in Brisbane, Jennifer elaborated on her own experience:
My perimenopausal symptoms became obvious to me, and quite debilitating, a few days after I turned 45. Just really suddenly I couldn't sleep anymore and my anxiety was through the roof. I doubted myself as a mother and in my work and I had brain fog or brain annihilation, as I like to call it, that rendered me useless at work. I couldn't focus or remember words. I stressed over things I've done for years that have never stressed me out before. And I'm really embarrassed to tell you that I raged at my family, especially at my children. But I did not miss a period. I never had irregular periods and, to this day, I have not had a hot flush.
2.14Grace, a private individual who submitted to the inquiry, emphasised the broad impact of symptoms that affected her mental wellbeing:
As an individual my symptoms of perimenopause have significantly impacted my daily performance, primarily due to cognitive decline (brain fog), fatigue, and lack of energy. However, the most severe symptom I’ve experienced is insomnia. … which greatly hindered my ability to function effectively in both my personal and professional life.
2.15Tara, a lived experience witness who appeared at a public hearing in Sydney also discussed her experience:
In October of 2021, I began experiencing anxiety, particularly in the mornings upon waking, and one month later I had a severe panic attack during my period. I had no history of panic attacks, anxiety disorders or mental health issues and had always been an extremely high-functioning, high-achieving individual… I could not understand why I was suddenly experiencing such high levels of physical anxiety that were not linked to a direct cause.
The ‘sandwich generation’
2.16The arrival of perimenopause and menopause often coincides with other challenging events that affect women during midlife. These includes care responsibilities for dependant parents and children, reaching a career peak with enhanced work pressure, relationship and family pressures and the emergence of health difficulties.
2.17As members of the so-called ‘sandwich generation’, submitters discussed the challenges of caring for elderly parents and dependent children at the same time as experiencing the significant physical and mental changes associated with menopause. As discussed by one submitter to the inquiry:
Women are expected to maintain job function and parenting or caring whilst struggling quietly with symptoms that may be debilitating e.g. ongoing sleep loss, brain fog, anxiety, joint pain, hot flushes and more, that may render a women unable to work or care for children.
2.18For example, Megan expressed her difficulty caring for her father while navigating through menopause:
As the eldest daughter in my family, I am responsible to assist in life admin and activities with my aging father. At the times when I was really struggling to manage myself the added stress of caring for my father, while he was going through major health problems, was overwhelming… I have struggled to maintain friendships with my closest friends, because I simply have changed and can no longer do the things I used to do.
2.19The Jean Hailes submission specified this period as the ‘midlife collision’, given the substantial pressures that are often placed on women at midlife including caring responsibilities, financial obligations, other health issues and work pressures. The organisation elaborated that this makes it difficult to clearly isolate the causes and impacts of perimenopause:
The many, many combinations of factors that constitute a woman’s familial and social environment make it extremely difficult to understand the impact of peri/menopause alone on caregiving, family dynamics and relationships.
Challenges to accessing care
2.20The intersection with the other difficulties of midlife were also a barrier to treatment and care. The committee heard that women were often dismissed by medical practitioners as being stressed or overwhelmed due to lifestyle factors, rather than needing care.
2.21Jennifer told the committee at a hearing in Brisbane about her experiences:
When I finally saw my GP about the insomnia, which made the bouts of anxiety even worse, I asked her if it might be perimenopause, given my age. She dismissed me and said, 'You're far too young.' I was 45. That's prime perimenopausal age. She tried to convince me that this was just the stress of midlife, that my children are quite young, my husband travels for work and basically just to suck it up. I walked out of her office scared, confused and with a prescription for a sleeping pill.
2.22The Australian Psychological Society described the occurrence of this phenomenon, noting:
Because of a lack of awareness or recognition of symptoms, particularly in younger people, changes may be attributed to other factors such as stress or other health issues.
2.23Issues around getting a diagnosis and accessing care are further discussed in Chapter 4 of the report.
Lack of support and information
2.24Women shared their experience of finding that there was a complete lack of available information and support related to menopause and perimenopause. Women explained how they had to rely on peer support networks and self-education through podcasts and social media to learn more and be prepared with evidence-based information.
2.25A submitter to the inquiry pointed out the overall lack of information on perimenopause in the media as well as in healthcare settings:
As mentioned earlier, at age 47, I had not had any information on perimenopause presented to me by any health professional, through the media, through social media, or through any other medium such as TV or film, advertising, in a chemist, in the mail, in a magazine, on a blog or through a friend or family member.
2.26Another submitter also reflected on her experiences, highlighting the paucity of information available:
Looking back, virtually all the information I had received about menopause and what to expect was word of mouth, shared from older women friends.
2.27In her submission, Sarah discussed how this lack of information was a barrier to seeking access to care:
I had tried to research perimenopause prior to attending appointments but available information is very brief. Many reputable websites have a lot of information on menopause, and 1-2 sentences on perimenopause.
Stigma and taboo
2.28Submitters to the inquiry discussed how stigma directly contributes to a lack of awareness and understanding of menopause for women. As articulated by the Federation of Ethnic Communities’ Councils of Australia (FECCA):
Whilst menopause is a universal experience for women, it continues to be poorly understood, with taboo and stigma associated with ageing and women’s reproductive health contributing to little understanding of this natural transition point in a woman’s life.
2.29This was reinforced by Ms Lisa Annese of the Diversity Council of Australia when she stated:
It's a real risk. Women who talk openly about menopause run the risk of being scapegoated and stigmatised. I think that that is real and will happen.
2.30Further, some witnesses spoke about the importance of breaking down stigma and openly speaking about menopause:
A lot of the services that we provide are helping workplaces to accept that there may be some stigma existing already and work out how we can break down that stigma. A lot of it comes down to communication. It comes down to having those leaders in the business stand up and talk about it openly, and we are seeing more and more of that.
Education in schools
2.31Submitters recommended the need for education regarding menopause and perimenopause to be included in the reproductive health curriculum, alongside topics such as menstruation and sexual health, to establish this as a normal element of the reproductive cycle and prepare women for this life stage.
2.32In her submission, Jo elaborated on her perspective that high school education would have changed her experience of menopause:
Had perimenopause/menopause been taught to me in high school I would have known to expect the symptoms I experienced. At the very least I would have known that something happens before my period stop[ped] and not have felt so isolated, ill-informed, gas-lighted, and left wondering if I was going mad.
2.33A submitter remarked that introducing menopause in sexual education subjects in school would increase the awareness for both men and women.
2.34Jo also expressed the view that the current omission of menopause in the curriculum was reinforcing stigma:
If we are willing to talk about contraception, sexually transmitted disease and childbirth with teenagers yet not talk about menopause, it just stigmatises it even further as a taboo topic, making women feel alone and isolated when they experience it.
2.35Some submitters highlighted that the United Kingdom has implemented menopause as a topic in the high school reproductive health curriculum.
Raising awareness
2.36To effectively combat stigma and taboo, inquiry participants identified the importance of implementing a comprehensive national health awareness campaign that encompasses education of the general public, as well as medical professionals.
2.37For example, Associate Professor Magdalena Simonis AM described the need for a national public awareness campaign ‘to increase knowledge and literacy around this phase of life and its treatment’.
2.38The AMS recommended education of women through community programs and public awareness campaigns about the symptoms and health implications of menopause.
2.39The Royal Women’s Hospital Melbourne suggested:
A national public information and awareness campaign that promotes independent and evidence-based information about the common symptoms associated with menopause including the risks and benefits of treatments, and the opportunity it provides for healthy female ageing.
2.40It was underlined to the committee that the development of any such campaign should involve co-design with women living through menopause; as well as specific initiatives for hard-to-reach groups such as First Nations women, CALD communities and individuals with poor health literacy.
Women needing to be their own advocates
2.41During the inquiry, women shared their difficult experiences in accessing appropriate perimenopause and menopause care, often resulting in the need to conduct their own research to enhance their capability to self-advocate.
2.42Many women experienced misdiagnosis and inappropriate treatment in their journey to address menopause symptoms; including being misdiagnosed with incorrect conditions, being referred to specialists unnecessarily, seeking access to MHT and being denied or being prescribed the wrong types or forms of MHT as a result of outdated understandings of prescribing guidelines.
2.43Many submitters also mentioned that they were often dismissed by doctors as being ‘too young’ to experience menopause; in some instances, despite being within the recognised age range of the menopause transition.
2.44Concerningly, the committee learned of the experiences of women seeking care through the health system often being prescribed anti-depressants as a first line therapy for a range of different perimenopausal symptoms rather than further investigation being undertaken.
2.45Further, when seeking help and support from general practitioners (GPs), women often discussed the limited knowledge of their healthcare providers in relation to perimenopause and menopause. This was starkly demonstrated by Sandy’s story:
I asked my GP if it could be a symptom of menopause, and he said, ‘All I learnt at med school was that menopausal women were either mad or sad.’
2.46A common theme of accessing care was that healthcare providers did not recognise the variety of perimenopausal symptoms until a woman had a hot flush or night sweats. Imogen discussed the impact of this narrow view of diagnosis of perimenopause:
It was only when the night sweats and hot flushes kicked in that my GP said the word 'perimenopause'. That was almost five years after my original symptoms presented themselves—five very frustrating years. My jigsaw became a picture of a perimenopausal woman. But five years is 1 825 days. Of those, 1 300 were working days.
2.47Sharon, a private individual who appeared at a public hearing in Brisbane, also emphasised:
I also had idiopathic peripheral neuralgia, which is tingling hands and feet as part of the hot flashes, but the doctors were looking for other answers. They just don’t have the experience.
2.48Women discussed their journey of self-education and self-advocacy, in response to the lack of knowledge and awareness of their health practitioners. MrsRebeccaThomson, Founder of Your Menopause explained the need for a more comprehensive education for women:
For me, the thing I think that stands out is that we need to have education—obviously, education on the medical, nursing and allied health side, but also education for women. We need to know what's going on with our bodies. We need to know what's happening to our bodies, what these symptoms are all about and also what treatments are available, so that when we go in, we can advocate for ourselves and have a partnership approach with our GPs.
Early menopause
2.49The lack of awareness and access to information was a problem that was further compounded for women who experienced early menopause as a result of cancer treatment, surgical intervention, premature menopause or primary ovarian insufficiency.
Menopause after cancer treatment
2.50The experience of dealing with cancer treatment and early menopause was described as a double burden for patients. For example, Sonya, a breast cancer survivor, emphasised the significant challenges of living through menopause as a result of her cancer treatment, detailing:
Navigating menopause after my cancer felt harder than the cancer treatments themselves. Exhausted, and suffering a wide range of physical and psychological side effects I was frightened and unsupported by my doctors with no idea how to manage or if this was how I was going to feel for the rest of my life.
I struggled daily with extreme fatigue, cognitive disruption, anxiety, severe hot flushes and horrendous night sweats, weight gain, dreadful joint pain and psychological distress, all profoundly undermining my quality of life and functioning at home and work.
In ten months I had gone from being a healthy, fit, active and happy 47-year-old to feeling like a 90-year-old woman.
2.51One submitter emphasised the limited availability of support and information:
Personally, I also found finding advice and support difficult. At times my oncology specialists did not recognise some of the symptoms I was experiencing. While menopause support organisations focused on women aged between 45 and 55 years in ‘natural menopause’. In effect, I am ‘too young’ and in a ‘different’ / the ‘wrong’ cohort. This prompted me to pursue support elsewhere to manage my symptoms.
2.52While cancer treatment can induce menopause, it was highlighted to the committee that specialists treating patients for cancer may not have knowledge about the impacts of menopause and may overlook its impact or provide inaccurate advice on treatment options.
Surgically induced menopause
2.53As outlined in chapter one, surgically induced menopause occurs through the process of a bilateral salpingo-oophorectomy, where both ovaries are removed which triggers menopause.
2.54Janine detailed her experience of surgical menopause, specifying that ‘[w]ithout ovaries producing hormones, the body goes into menopause overnight. This is not a natural situation’. Janine conveyed that she was not counselled on the potential impacts of surgically induced menopause and, while provided with a preventative prescription for MHT patches, was not given further information on what to expect or how to manage her menopause symptoms.
2.55Another submitter to the inquiry detailed the traumatic nature of the lack of information that she was provided with:
I found the recovery and the surgical menopause brought about by removal of my ovaries incredibly traumatic and I was woefully underprepared for my immediate menopausal experience.
2.56Jo, a private individual who submitted to the inquiry, also discussed that she received no information on early menopause after her full hysterectomy at the age of 39 in 2009. She subsequently only learned of the onset of early menopause after surgery when watching a character experience it on television last year and was then able to understand the impact of symptoms she had experienced.
Primary ovarian insufficiency
2.57One in 100 women will experience primary ovarian insufficiency (POI). Given the early age at which premature menopause can occur, there can be a lack of recognition by employers and a lack of peer support, as well as a higher risk of emotional distress for women experiencing it.
2.58Jacqui spoke to the unique challenges of her experience of POI in terms of accessing social support:
POI sufferers have issues such as navigating and accepting infertility, navigating relationships with younger partners (who have no understanding of menopause, no peers with partners going through menopause, busy work and young children.
2.59At a hearing in Canberra, Belinda spoke to the experience of her daughter Vienna, who had 44 appointments over four years, starting at the age of 14. She presented to multiple GPs, with 13 of the 15 identified symptoms of menopause, but was not diagnosed with POI until the age of 19.
2.60Belinda also emphasised the long-term impacts of POI for women who are diagnosed earlier in life when she commented:
She and young women and girls like her will live with the symptoms of menopause for most of their lives. The impact on their health, relationships, fertility and overall quality of life will be vastly affected yet they receive the least research funding. Research into the long-term impact of POI, how it might be diagnosed earlier to preserve fertility, how it might be prevented is desperately needed.
2.61The issues related to diagnosis and treatment of early menopause are further explored in Chapter 4.
Social impacts
2.62Inquiry participants spoke to the pressures that the menopause transition can place on families, relationships and women’s ability to fully participate in life. As emphasised by Sandy:
Untreated symptoms affected not only my health but also my relationships with partners and children, my workplace, my finances and retirement, my aging parents and my overall quality of life. It impacts not just our physical health but our sexual, emotional and mental health as well.
Family pressures
2.63Leeanne explained the pressures felt across the whole family, beyond an individual’s symptoms of menopause:
What is not taken into consideration while the woman is suffering is the toll that it takes on the rest of the family members whether it be immediate or extended. If the mother is suddenly unable to adequately function that puts enormous pressure on other family members for additional help at various times. The impact can be enormous financially and emotionally.
2.64Kim, a submitter who started experiencing symptoms in her mid-forties described how it directly affected her family:
I could not sleep and the anxiety I was feeling was the ultimate challenge and was destroying my life. The final straw was when my daughter asked me “What is wrong with you?” as I was snapping at her. This broke my heart. My family were suffering as they tried to navigate and understand what was happening to their mother, partner, and sister.
2.65Carl, a private individual who spoke to his wife’s experience of menopause, emphasised the broad impacts for families:
Menopause and its consequences affect everybody. Every man has a mother who will have to cope with menopause if she lives long enough. Many men have sisters, daughters, other female relatives and friends who will experience menopause. The issue needs to be discussed more widely in our society and there needs to be more compassion shown towards women.
2.66Women were also afraid of being financially reliant or dependant on their family members or expressed gratitude and regret that they needed to be supported financially by family members. As discussed by one private individual who submitted to the inquiry:
I am concerned as I am/will be, much more reliant on my husband’s earnings to support me now and in the future.
Divorce
2.67Some submitters spoke to the potential link between menopause and higher rates of divorce in midlife or noted that they had considered divorce for the first time during the period of the menopause transition.
2.68Sandy, in her submission, noted the economic impact divorce can have:
Unfortunately another financial impact that can stem from divorce and little or no superannuation can be an increasing number of women being homeless and/or below the poverty line.
2.69In her submission, Megan emphasised the struggle she and her husband faced, and recounted that many of her friends have in fact divorced as a result of the effects of menopause:
My husband and I have struggled through the last 7 years. It has been very difficult at times, and I can absolutely understand why people divorce. I am very blessed to have a caring, supportive, and rock steady husband, but I know this is not the case for everyone, and again several of our friends have divorced or separated as a result.
2.70Another private individual also discussed the correlation between her menopause symptoms and the potential for divorce:
For the first time in our 34 years together my husband and I have recently discussed the possibility of divorce.
My husband is a good and caring person, but not educated in emotional intelligence nor intrinsically interested in women’s issues, during peri menopause I have been too tired to continue to do his share of the emotional labour in our relationship and without Hormonal support I could barely do my own.
Mental health impacts
2.71The existence or emergence of mental health difficulties as a symptom of menopause was discussed as a key driver of social impacts. Allison explained the comprehensive challenges she faced during the menopause transition:
Daily, I questioned my sanity and feared early dementia as I forgot words, could not complete sentences, and failed to absorb new information. I feared my irrational behaviour would shatter my marriage.
2.72For some women, the physiological changes of the menopause transition triggered substantial mental health impacts. In some cases, women detailed menopause symptoms impacting them so significantly that they lost the will to live or considered suicide. A submitter discussed the extent of the impact of menopause on her mental wellbeing:
If it were not for the love of my children, I would rather have left this world behind. The thoughts of suicide are daily and yet I push through it day after day. I struggle to look after myself let alone anyone else. I am 50 per cent at capacity of who I once was in terms of functionality.
2.73The committee was also informed of the extent to which some women used alcohol to cope with these impacts of menopause and perimenopause. As highlighted in the Newson Group submission when quoting a respondent to their survey:
I self-medicated to the point of becoming an alcoholic.
Involuntary childlessness
2.74Involuntary childlessness (IC) was raised as another social impact that had repercussions for women during menopause. The Australian Longitudinal Study on Women’s Health noted that never having given birth, infertility and recurrent miscarriages or stillbirths all increase the risk of a woman’s early menopause. Despite the increased health risks associated with premature menopause, involuntary childlessness is not mentioned directly in the National Women’s Health Strategy 2020–2030, but the Strategy does note the need to highlight gaps in care for marginalised and stigmatised cohorts.
2.75Women with lived experience explained the relationship between menopause and involuntary childlessness, where women who had wanted to have children but were unable to, had to come to terms with the permanent loss of the ability to have children. Ms Sarah Roberts of the Empty Cradle explained:
The menopause is both the actual and symbolic end to our reproductive years, and it can coincide with the grief and transition to permanent childlessness. This can have significant physical, psychological and mental health impacts. Many women experience the menopause as both a factor in their childlessness and a source of deep grief.
2.76At a hearing in Melbourne, Catherine talked about her experiences with an ‘unusual and early menopause’ following the cessation of In Vitro Fertilisation (IVF) treatment after five years. She explained how difficult this phase was for women who have experienced IC:
By its very nature, menopause is the end of the reproductive years and can signify that the battle to have that wanted child is over. That realisation and its intersection with menopause impacts IC women with varying degrees of trauma and severity. I don't think it's possible to overstate the enormous scope of these issues and the ever growing number of women that they may impact.
Accessing support and information
2.77Given the limited availability of information, women across Australia explained the mechanisms through which they had sought out information and support.
Online support groups
2.78Submitters to the inquiry highlighted the importance of finding online support and information through groups on social media. Leeanne highlighted that these groups are ‘literally SAVING women’s lives’ as a result of providing a community of support and shared knowledge.
2.79Women explained to the committee the role that these online support groups played in their ability to learn further about the impacts of symptoms, the mechanisms for accessing care and treatment, and discussing potential avenues for better care.
2.80Participants to the inquiry also emphasised the importance of learning that they were not alone through this journey and that other women were having similar difficulties with access to diagnosis, treatment and care.
2.81The demand for these online support groups was highlighted by Naomi, who volunteers as a co-admin of a Facebook support group, noting that the online community had grown in seven years from about 2 000 people to close to 40 000 people.
2.82The rise in popularity of these online support groups was attributed to the need for peer support during an isolating journey. It also pointed to the need for readily accessible, easy to understand information relating to the varied presentations and impacts of the menopause transition.Dr Kelly Teagle elaborated:
… I'd say meet women where they are. Social media is where women are. They're scrolling their feeds. They're getting all of this messaging, good and bad, and if the government doesn't provide some messaging then they're going to suck up whatever they can find on the internet.
2.83However, other witnesses raised concerns about potential misinformation being shared through these groups:
… We've already heard today that there are a lot of social media groups, one that has 39 000 members, and, as one of the people presenting today on the panel said, none of them are medically trained. I think that some things that I find—and we find generally—are very scary. These women are so desperate to try and find information that they're not getting the quality of education and the information they need about certain medicines through those sorts of groups. That group of 39 000-plus—and there are many of these groups—are trying to get information from resources that are not factual and not aligned to the quality of health care that they deserve and should be getting.
Menopause cafés
2.84Another example of the need for greater peer support for women was highlighted through the example of the emergence of menopause cafés.
2.85Felicity Brazil, a private individual who started the first Menopause Café in Canberra, explained that menopause cafés are a mechanism of community-based support where people of all ages and genders can discuss issues related to menopause.
2.86The University of Melbourne emphasised that menopause cafés can help to reduce stigma and promote open and frank discussion.
Lack of evidence
2.87The anecdotal experiences shared by women over the course of the inquiry about the lack of available information and awareness of menopause is also reflected in the lack of a comprehensive evidence base in Australia. As emphasised by Professor Susan Davis AO at a public hearing in Melbourne:
There has been no quality, cross-sectional data about menopause collected in the last 10 years in any country in the world. We're walking blind. We don't really know collectively the voice of women.
2.88Many inquiry participants emphasised the lack of available and robust data as one of the greatest hindrances to understanding the health, social and professional impacts of menopause in Australia.
2.89In terms of assessing the impacts of symptoms of menopause, Jean Hailes conducted an analysis on the National Women’s Health Survey in regards to menopause, finding that 26 per cent of midlife women (aged 45 to 64) had experienced symptoms in the last five years, that they attributed to menopause, that made it hard for them to do daily activities. This report also recommended further studies be undertaken to differentiate between the true impact of perimenopause and menopause from other causes of midlife stressors.
2.90It was discussed that the collection of any evidence on the impact of menopause symptoms should be designed in a manner that delineates between symptoms and the other common challenges of midlife, to establish a clearer picture of how menopause impacts women in Australia.
2.91It was further emphasised that the collection of any data must be intersectional by capturing the experiences of diverse demographics, such as CALD women, as well.
2.92As observed in the Royal Women’s Hospital Melbourne submission:
A contributing factor is the lack of consensus about what symptoms menopause causes. Whilst symptoms such as brain fog, mood swings, anxiety and weight gain may be common, they have not been shown to be attributable to menopause. Stigma around ageing in women and a research focus on pharmacological treatments means that evidence is limited. Addressing this would help women and health professionals to better understand this life stage and aid decision-making about self-management, treatment and clinical care.
2.93The lack of data on the economic impacts of menopause is discussed specifically in Chapter 3.
The need for intersectional data and responses
2.94Submitters pointed to the lack of data and research on the experiences of different groups within the Australian community, including women from CALD communities, First Nations women and LGBTQIA+ people. As Research Australia stated in their submission:
Understanding cultural differences in the experience of menopause is critical in a multicultural nation like Australia if we are to provide appropriate education, services and treatment for menopause and perimenopause. However, we do not have a thorough understanding of these differences in the Australian context; this includes a lack of understanding of cultural differences for First Nations communities.
CALD communities
2.95Submitters highlighted that women in different cultures can experience menopause differently. This includes age of onset, types of symptoms but also community perceptions of menopause and perimenopause. For example, in some cultures, reaching menopause is associated with an experience of enhanced wisdom or becoming more revered.
2.96However, in the Australian context, the experiences of women from CALD communities can be mixed. FECCA pointed to the ‘disturbing scarcity of research or even knowledge amongst health practitioners about how to support women from culturally and linguistically diverse backgrounds’.
2.97In explaining the knowledge that does exist in relation to culturally and linguistically diverse women accessing care, Ms Mary Ann Baquero Geronimo, Chief Executive Officer of FECCA, explained:
With the few studies available, it's reported that migrant women follow traditions to self-manage menopause and obtain information through friends and family. When they consult a doctor, they tend to experience a lack of patient centred culturally responsive care.
2.98The Family Planning Alliance emphasised the importance of more research in CALD communities to ‘help guide holistic culturally appropriate menopause care in Australian primary care’.
2.99Furthermore, the Queensland Nurses and Midwives Union also noted the intersecting factors of discrimination from healthcare providers for women from CALD communities, which can contribute to further stigma and barriers to accessing care.
2.100Sexual Health Victoria acknowledged that there are some existing translated fact sheets available for women from CALD communities. However, submitters discussed the lack of easy-to-read English resources related to menopause and perimenopause, and recommended this as an area for further consideration by the government. For these resources to be effective, the importance of co-design with CALD communities was emphasised.
First Nations women
2.101In its submission, the Royal Australian College of General Practitioners (RACGP) stated that ‘there is a lack of culturally appropriate research in First Nations menopause perceptions’. Similarly, Dr Odette Best noted the lack of specific research and told the committee that there has been ‘absolutely no Indigenous research in Australia for over a decade’.
2.102In terms of existing research, some submitters pointed to a 2014 study which indicated a lack of information and understanding of menopause amongst Aboriginal healthcare workers. The study also found that the average age of onset for menopause was five years earlier than non-Indigenous women and noted that First Nations women were experiencing increased health risks.
2.103Dr Odette Best and Professor Tracey Bunda also recommended the need for inclusion of references to perimenopause and menopause in relation to the funding provided to Aboriginal Community Controlled Health Organisation services (ACCHOs). Further, they explained their research that showed of 145 Aboriginal medical services in Australia, only two had outward facing information related to ‘the change’ available online.
2.104Submitters asserted that this lack of evidence-based data directly contributed to the absence of culturally safe and appropriate education, support and care for First Nations women. As articulated by the Family Planning Alliance Australia:
There is currently very little research on First Nations people’s experiences and perceptions of menopause, nor evidence to guide culturally appropriate and safe best practice menopause clinics and management options… Further research, consultation and co-design with First Nations communities is essential to ensure health promotion initiatives are culturally relevant, appropriate and relatable.
2.105Dr Odette Best also emphasised the need to invest in research:
… Women's business, which is what we in the Indigenous community call this time of our lives, must be better researched and must be better resourced.
LGBTQIA+ people
2.106Inquiry participants identified the need for a greater understanding of the impacts of menopause for LGBTQIA+ people. Some submitters pointed out that much of the existing research has focussed on lesbian women’s experiences only but there was less data available for other members of the LGBTQIA+ community.
2.107Ms Tilly Mahoney of Women’s Health in the North, emphasised the need for further research:
For trans men and intersex, non-binary and gender-diverse people who also experience menstruation, there's a severe lack of research on experiences of ageing and menopause.
2.108Submitters also noted the importance of acknowledging that the barriers to healthcare that can exist for LGBTQIA+ people also extend to accessing menopause care.
Committee view
2.109The committee is concerned by the current lack of awareness of the impacts of menopause and perimenopause across the Australian community. Australian women want to be better informed and more empowered to approach this natural life transition. The stories shared with the committee demonstrate the unnecessary harm currently experienced by too many women across the country.
Lack of data
2.110Considering the lack of research, data and information available, the committee notes that the personal experiences and testimonies received during the inquiry were the most powerful, compelling and important evidence to gain an understanding of the impacts of menopause on women in Australia. The committee expresses its thanks once more to the individuals who shared their stories with the committee, either through a written submission or attendance at a public hearing.
2.111These direct experiences shared with the committee tell a concerning story of the burdens placed on women at midlife, as well as the significant impact that symptoms can have on women. It is deeply concerning that so many women are unprepared and uninformed for what is an inevitable life transition. Too few women are empowered with information that can assist them with identifying symptoms and choosing the type of supports and care that would best suit them.
2.112Moreover, the impacts of this lack of awareness do not just affect individual women. The social impacts of menopause, including family pressures and divorce, speak to the critical need for a greater understanding of the impacts of menopause for people across the community.
2.113The committee acknowledges that certain groups of women face additional challenges which are not currently effectively understood. It is of concern to the committee that there is a limited understanding of the specific experiences of menopause for women from CALD communities, First Nations women and LGBTQIA+ individuals. The committee received very limited evidence about the impacts of menopause on women living with a disability and is cognisant that that this gap in information should also be addressed. A comprehensive review and understanding of the experiences for these cohorts would enable policymakers to develop tailored and effective initiatives to raise awareness and provide appropriate supports.
2.114The committee recommends that the Department of Health and Aged Care commission research to establish a comprehensive evidence base about the impacts of menopause and perimenopause on women in Australia, including:
Menopause differentiated from midlife stressors;
Mental health impacts of menopause; and
Early menopause.
The research should also establish an understanding of experiences for:
Culturally and linguistically diverse women;
First Nations women;
LGBTQIA+ individuals; and
Women living with a disability.
Raising awareness and education
2.115The lack of support and information related to menopause is driving women to establish their own communities of support to better educate themselves and advocate for themselves. The existence of communities of support on social media are important and the rapid increase in membership of these groups indicates that there is a high demand for information.
2.116There is an important role for the Australian Government in building greater national awareness of menopause and perimenopause and supporting the availability of good quality information. Doing so will lessen stigma, facilitate more community understanding of the experiences of women during this time and, over time, lessen the negative social impacts experienced by women.
2.117The committee recommends that the Australian Government launch a national menopause and perimenopause awareness campaign, providing information and resources for women and communities across Australia. This awareness campaign should be designed in consultation with experts and people with lived experience.
2.118The committee also acknowledges that the limited availability of information on menopause appears to be exacerbated for women experiencing early menopause as a result primary ovarian insufficiency, cancer treatment or surgical menopause. More must be done to support these women, which would be assisted by understanding their unique experiences and needs.
2.119The committee agrees that there is merit in introducing discussion about the experiences of menopause during the health and physical education component of the Australian Curriculum to normalise these experiences and better prepare young women and men for this natural phase in a woman’s life. The committee is of the view that starting the conversation about menopause as early as possible in young people’s education would reduce the stigma and taboo, which currently exists in the Australian community.
2.120The committee recommends that, in the next review of the Australian Curriculum, the Australian Curriculum, Assessment and Reporting Authority (ACARA) consider how menopause can be expressly referenced in the menstrual health and reproductive cycles content within the Health and Physical Education learning area.