Early menopause (EM) is a complex health condition and can affect many aspects of a woman’s life. The experience of symptoms, along with the potential loss of fertility and uncertainty about long-term health risks of EM, can affect a woman’s daily life, her identity, relationships, and plans for the future. Being diagnosed and receiving care and treatment for EM (and other health conditions, in particular cancer) can involve a range of health practitioners (see Women’s experiences with GPs and Women’s experiences with specialists and other health practitioners). Women describe different needs, which may vary at different times, and therefore health practitioners are advised to actively ask individual women what they needs help or support with (e.g. alleviation of symptoms, psychological care, information resources, or time with specialists, nurses or counsellors).
The women we interviewed reflected on what they had appreciated about care they received, and suggested a number of ways in which care could be improved.
Some women felt ‘well supported’ by the different health practitioners they had encountered. Maree, who experienced surgical menopause after discovering she carried the BRCA gene mutation, said: ‘I was just given excellent advice in terms of what to expect [about EM] and how we can go about alleviating these symptoms and helping you out.’
Melinda, who experienced spontaneous EM, explained what she appreciated about the health practitioners involved in her care.
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I think of how wonderful [my] endocrinologist was, has been great, been inspiring me to make me think, ‘Yes you can, life can be a lot different for you if you maybe take some of these measures and, and really look after yourself, life could be really different,’ so that was, really important and she listened and seemed to ask the right questions and just a very, ‘Yep, yep I hear where you’re coming from, I understand, yes totally,’ and I really got the sense that she did.
And my GP, look I think I was very fortunate, and my fertility specialist was amazing and as I said the discussions weren’t around menopause but sensitive, I think, and I think he was surprised too about the fact that I had not produced more eggs right from the get go. But again very sensitive, I actually got a second opinion from another fertility specialist as well when I was trying to have a second [baby] and that was actually fine with him too.
He was actually looking at moving on and retiring and so I did speak to somebody else. He again was very good and just very upfront, I think I appreciated the people who were upfront with me, he said, “Look your chances are virtually nil.” So he didn’t give me false hope and I know there are still people that go out there and still try and maybe in that fluke sort of situation that it does work, but for me that was enough to say, “That’s, enough is enough,” and so we decided not to go down, to try with our second embryo of course, but not to go through the whole process of egg retrieval and everything again because I really don’t think that it would have been successful and to put yourself through all of that again would be pretty hard so. No, so I really feel that yeah I’ve been very well supported, as a whole.
Women also highlighted areas needing improvement in the care and support they received, particularly in relation to the early stages of seeking help for and first being diagnosed with EM, ongoing care and management, and the provision of information about EM.
Seeking help and being diagnosed
Women described seeking help for symptoms, being diagnosed with EM, or being told that medical treatment may lead to early menopause as a particularly sensitive time (see Seeking help and diagnosis for spontaneous early menopause and Finding out about medically-induced early menopause). They said that by taking their concerns seriously or delivering the diagnosis of EM in a sensitive and empathetic manner, health practitioners could avoid inadvertently adding to a woman’s distress. When asked what she would advise health practitioners treating women with EM, Lorena said ‘never say to someone that is suffering, “Oh, it could be worse.” Yeah, it could be, but for me, [at] that time [it] is the worst thing that is happening.’
Natalie advised health practitioners to take seriously a woman’s concerns and knowledge of her own body and health.
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One of the really important things that my family have realised is that you know your body. You’re the one who knows your health. If something is not right, ask, and if you’re not getting the answer from one doctor, find another one. My sister found that really difficult when she went through early menopause, that she was just getting fobbed off, because everyone was saying to her, “You’re too young. It can’t be that. You’re too young.” And so she just gave up and then she was talking to my mum and I and we both said to her, “Go to our doctor. He will take you seriously. He will look at this.”
And so it’s – it’s more that if someone’s coming to you saying, “I’m not right,” listen to them. Don’t try to say, “Oh no, you’re too young.” I think that is the biggest thing that I’ve heard of is people being told that with things like as serious as breast cancer, “No, it can’t be. You’re too young.” And menopause, it can be quite a – a lifestyle changing thing to go through, so if someone comes and sees you and says, “I’m not feeling right,” don’t dismiss it because they’re the ones who know their body, better than you do. It might not be in your normal spectrum of things that you would think it could be, but listen to them. That’s the biggest thing I think.
Learning about a diagnosis of EM can be a ‘shock’ for many women, and initial discussions about the condition, its symptoms and long-term health risks can be distressing. Women highlighted the need for health practitioners to show ‘understanding’ and ‘sensitivity’ when discussing EM and its implications with patients, and offer emotional and psychological support.
Kirsty recommended that women diagnosed with EM should be given a psychological care plan.
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My advice for health professionals is that as soon as you make any sort of diagnosis around menopause that you should be advising psychological care as part of the care plan for women. Giving a woman a diagnosis of early menopause and then sending her away with no support I think is really dangerous, especially someone who’s in their early 30s like I was. So my recommendation would be that you put them on a plan, a care plan, that involves self-care as well. That you steer them towards recommendations of solid sources of information because there isn’t that much information out there, and letting them loose on Google, which a lot of women would be tempted to do, is not a good thing, I don’t think.
Some women said when women are seeking help for EM symptoms or being diagnosed, it is useful for health practitioners to take the time to listen to them and approach them as ‘unique’ individuals. They also suggested that health practitioners be aware that women’s responses to being diagnosed with EM may differ, depending on their personal circumstances. For some women, the diagnosis is ‘devastating’; for others, less so. Jessica, who experienced spontaneous EM after she had finished having children, and had mild symptoms, said: ‘[I don’t want health practitioners] to make too big a deal of it. … I’m not ill. I don’t want to be treated as if I am ill. However being fully informed would be nice.’
Sylvia recommended that health practitioners caring for women facing EM in relation to cancer treatment take the time to ‘really understand’ women’s stories and future plans.
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I would say take the time to really understand the patient’s current health – their plan – their life story up until that point and what they want to do in the future. … Because when all other stuff, physical things are going on, you aren’t left with a lot of dignity as a female. So sometimes all that a health professional can do is give you that. And the education piece can be at least a semblance of that dignity. Because you can – when all is said and done, when all the physical activity stops, when people – when everyone’s kind of left you to your own devices, at least then you can go and check things out. You can go to websites. You can go to forums. You can speak to people. You can talk to appropriate doctors and get the support you need.
Yeah. So having more – a deeper understanding of the person’s situation will help you give more appropriate advice?
I think so. Especially for their future. If you want to leave someone with something, that’s the thing to give them is their future. Because at the time it looks pretty bleak.
For
Melinda, health practitioners need to be aware that ‘everyone’s different’ and that the impact of a diagnosis of spontaneous EM on individual women can vary.
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I think it’s just that appreciation that everyone is unique. So again in my situation very, you don’t want to be looked at like you’re odd or, I mean I’ve seen the surprise on two doctors’ faces, I’ve seen the complete surprise on their face. I’ve seen the surprise when people say you can’t have another child, and I see the shock on people’s faces and I’m like [laughing] does it – it just, I think sometimes it’s just that for professionals to know, well, everyone’s different and, and I think most of them are pretty good at it, in fairness and I’ve had a good experience – and I appreciated how my GP handled it even though there was that surprise from his end, it was handled sensitively.
Because when he did turn around and say that to me I was, I remember thinking, he told me, sorry, I think his words were, “Sorry to say but you’re actually going, going through early menopause,” and I said “Oh,” I thought, ‘Oh should I be more upset about this?’, I thought ‘Should I? Is there something else that’s coming?’ but you know. I think that was my initial thought but as I said, I had signs and indicators that was happening so it wasn’t a total shock.
I couldn’t really fault him on his delivery but everyone’s different, so for some people it may be life changing, earth shattering, for some people it may be, ‘Okay well that’s good, I’ve got an understanding now,’ – for me it was a sense of understanding. It made me come to terms with the fact that I couldn’t have a second child – it was much easier to accept because I think had I not had this diagnosis I would have, or maybe if we gave it one more try, if maybe we just did go back and do one more round, you know there’s always that thought.
But I think for me it, it enabled me to draw a line in the sand and say, “No that’s it,” you know. This stage is over, albeit sooner than I would have liked or hoped, that’s been and gone, and it did help me.
I think I did sense from a couple of people, ‘Oh well, do you think maybe…?’, whether they thought that I’d done enough to try and have a second child? That probably bothered me a bit because I’m like, “Well you’re questioning you know my ability to know and my professional advice plus my own body,” you know, so that probably, that’s probably the one thing that took me back a little bit sometimes, a sense of them thinking, ‘Have you really-? Could you have really have gone back just one more time?’ or whatever that might have been.
I remember that being a source of frustration. I said, “Well no the situation is I can’t” and, and that was just hard for people to understand at my age why that could be the case. So that, looking back that was probably a factor there but with professionals, no I think it’s just everyone’s different, so for some people it may come as welcome news in a way, because it makes sense of certain things for how they were feeling or things that they’ve been experiencing or whatever.
Ongoing care and management
Commenting on health practitioners’ ongoing care and management in relation to EM, several women said this was most effective when health practitioners had a ‘holistic’ understanding of EM that went beyond its physical aspects.
Jenni described the experience of EM as ‘multilayered’ and said it needed to be treated with ‘dignity.’
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I think for the doctors there needs to be so much more education, so much more empathy, so much more compassion and understanding that this is real. That it’s affecting a lot of women. That it is multilayered, multifaceted. It affects [the] physical, emotional, psychological, mental, spiritual. It affects every part of somebody’s existence and you just can’t – you just can’t be so flippant as to tell them it’s all in their head. Like it’s just too much of a core experience to ignore. But it does absolutely – i t needs to be dealt with with compassion and understanding because this is – [it] can be a really frightening as well as incredibly sad and confronting experience and it deserves to be treated with dignity. I think that there needs to be a lot more education on the impacts of early menopause as well as the symptoms and how to diagnose and treat.
As with diagnosis, women also wanted health practitioners to ‘assess’ their individual needs in terms of ongoing management, and ‘tailor’ their care.
Theresa, who had a risk-reducing bilateral oophorectomy after learning she carried the BRCA gene mutation, said it was important for health practitioners to tailor care to individual women’s needs.
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I think, you know, most good specialists know that it it’s messaging for different women. I was probably on the easier side, because I just wanted the statistics and the facts, where others may need more support from – psychological support or support to manage the symptoms, or support to manage the relationship, so their feelings about it.
So, you know, just to know that every experience is very different and to try to do the best to assess what the needs might be on an individual basis, and just to make – what worked for one may not be true for the others, and to understand the whole person, rather than just the symptoms and the medical side of it, you know about like the things we touched on: what is the support system, what do they have access to, how it might impact on the family, on the relationships, which in my case most women were very sympathetic to that and did make sure that I had all the supports in place for that. So again, just emphasising that every different woman has different needs about it and particularly based on where they are in their own life, and what they have access to and support.
Women indicated that holistic and individualised care also meant providing relevant information in a format that suited their preferences; referring them to other health practitioners as needed; and taking a ‘proactive’ approach to their care. A few women wanted health practitioners to acknowledge that EM is not merely an individual health condition, but, as Jacqueline explained, ‘to be aware of the impact that it’s going to have on the family and also … bringing the partner in, if possible.’
Vicki recommended that specialists write down their recommendations for women to take back to their GPs.
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To health – particularly specialists, I think it’s important to, okay, yes, have your recommendations, but please, please, please put it in writing – and one thing actually, that one specialist who’s a surgeon, does which works really well for me actually is he writes – he has his typed notes, which is obviously for the file, but then he’s got his paper that he doodles on, like draws his diagrams or writes notes for me and then he’ll photocopy that to put on the file as well, but give that to me so that then I can take that sheet of paper to my GP or back to the Turner’s clinic or whatever, but it’s something concrete I can take away, or I can discuss with family or whatever I need to do.
So that’s something that has worked really well, but it could even be as simple as making sure that after a specialist appointment that you write back to the GP in a timely manner, because it – you know, a decision may or may not be made in that appointment. If I’m not feeling comfortable, if I feel like I’m in a whirlpool or I’m not comfortable at all, I’ll say, “I can’t make any decision today. I’m not comfortable.” And the other – but write a letter back to my GP and/or give me some notes – “Here are the notes from today, a copy of the notes from today.” Take it away, cool off, think about it and then we’ve got the information and the GP can then act on it, because like you guys are great, but you don’t necessarily know me as well as my GP who’s seeing me once a week or once a fortnight or whatever.
Jessica suggested that GPs should be proactive in attending to the health of women who have experienced EM.
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I don’t want to go to the doctor and every time I go to the doctor them to say, “Oh, so you’ve had menopause then.” I’m not – that’s not necessary. I think that, if there are any other potential ageing issues that tend to occur after menopause, I ought to perhaps know what they are, not because I want to – not because I want to go, “Oh, I’ve got that, I’ve got that,” you know. I don’t want to become a hypochondriac but forewarned is forearmed, I guess. I would be nice to – I don’t know. What else have I noticed? Foggy brain moments, you know. Tinnitus. Eyesight changing. Everybody knows that your eyesight changes in your 40s. … if there’s any other ageing issues that tend to happen after menopause, it would be nice to know what they are so that, when something happens, I can go, “Oh yeah, they said that might happen.” But on the other hand, I can understand they – people might not get those symptoms, and then they might go and see the doctor and say, “But I didn’t have this.”
But where it concerns your capacity to do something in old age like bone density – I’m getting really on my soapbox about that now, aren’t I? I ought to be asked. I ought to be informed. I ought to be tested or whatever it is. Maybe the test is painful and expensive, in which case leave me alone but, you know, just talking about what I can do to – and maybe this falls into the ageing category. If people normally go through menopause at 45, 50, then these ageing things would happen immediately afterwards anyway.
Providing information about EM
Women thought health practitioners could take a more active role in guiding them towards reputable and relevant sources of information about EM and helping them make sense of this (see Seeking information about early menopause (women’s experiences)). Kirsty suggested health practitioners support women to ‘feel less alone. … help them with some stats around how often this happens, that they’re not a freak who’s experiencing menopause at an early age. I think it’s really important to help normalise [the] diagnosis…’
By providing women with reliable information about EM, symptoms, and treatment options, health practitioners could also help them form ‘realistic expectations’ and better understand their experience. This was particularly important for women who experienced EM in relation to cancer treatment. As Yen-Yi said, being ‘a little more educated and forewarned’ by health practitioners would have helped her to understand the relationship between her menopausal symptoms and the treatments she received for breast cancer. This, she said, would have saved her the ‘emotional distress… of wandering around wondering, you know, was this [just] me?’.
Naomi said women need information about EM so they can manage their health and ‘have some kind of control.’
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We’ve got a lot more years that we need to live through or that we want to live through [laughing] without ending up with some major health implication because of early menopause. So if we’re very informed of all these things and can do something proactive to try and prevent it then I think – I think that’s the best thing to do. [laughing] … Just give all the information and allow the patient to – make sure the patient understands and can have a choice or do something to – so that they feel like they have some kind of control over the situation and that it’s not just taking them away on some sort of crazy journey that they can’t control. Because that’s what’s scary – when you feel like things are going out of control.
Joanna felt that to help women with ‘expectations management’, health practitioners needed to be ‘upfront’ about treatment options and implications at each stage of treatment.
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I think from the health professional’s perspective I think it’s just being – especially if it’s in quite an urgent sort of situation, just being really clear about what the options are, even if they’re not the ideal options, saying “In an ideal world we would have done X, Y, Z, but because of your circumstances these are the choices we’ve left with.” I think the way things were explained to me were very good in terms of when they were quite upfront about the fact that, “We don’t know how this is – if this is going to work or if it will work but you can give it a go and see.”
So I think just being realistic about that and expectations management. Just having the conversation early, which is difficult when obviously the more pressing thing is managing the cancer. I think having the conversation as early as possible about the options and the implications. I honestly don’t think that introducing discussions about potential menopausal symptoms down the track is useful at all until you’re through the active treatment. I just don’t think it would – even if someone told you it would just go in one ear and out the other.
So I think as long as you’ve set yourself up pre-treatment to be in the best possible place, I think that’s all you can do. I think the point at which you want to have those discussions is later. I think the sort of confluence of issues around body image relating to the cancer treatment and that then being compounded by the menopausal stuff can be a real – it’s just two enormous things coming together at once and I think that’s probably the point at which you’re at your most vulnerable and that’s when I think you need to be able to – to speak to – to people and, you know, regardless of if you’re in a relationship or not, the impacts will be the same, just in a different setting.
So – yeah, but I think the thing for me is just having not reams and reams and reams of information but – reams and reams and reams of information but just having the right information that you need to, when you need it really.
Further information:
Talking Points (Women)
Talking Points (Health Practitioners)