The diagnosis of early menopause (EM) is usually delivered by a general practitioner (GP) or specialist such as a gynaecologist or endocrinologist (see Referrals and coordination of care for early menopause), following blood tests to measure hormone levels and often an ultrasound to look at the ovaries and uterus (see Tests and challenges in the diagnosis of spontaneous early menopause).
Being diagnosed with EM can be a distressing experience for women, particularly if it is unexpected. Health practitioners emphasised the importance of sensitivity and described choosing their words carefully when explaining the diagnosis to women.
Dr Ee, a GP, shared her approach to delivering an EM diagnosis, and explained how she refers patients to specialists to confirm the diagnosis.
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I think I avoided using any particular term, actually. ‘Early menopause’ seemed a bit confronting. ‘Premature ovarian failure’ seems very confronting as well, the whole, you know, ‘premature’ plus ‘failure’ is a very negative term. I think to be honest, I tried to use euphemisms for it like, “Your ovaries aren’t working as well as they should and this is happening a bit earlier than expected”. So I think as a GP, I was quite concerned about putting a possibly negative label on it.
Because it’s got such potentially negative ramifications, I think I’ve preferred to get them to go to see a specialist to really have that diagnosis put on them, that I might talk about how the test might show that “Your ovaries are not working as well as they should, but I think we need to seek the assistance of a specialist in this.” So I think there’s a real sense of needing additional support in terms of confirming the diagnosis because of the fallout from that. And the other thing is that once the woman is aware that that’s what it’s about, there’s so many things that you need to then cover with them that take lots of different sessions with them. So you really need a team to come together and help them with all the different aspects that they’re grappling with. I think the most common difficulty for them is the end of their fertility, and some of them might never have had children so it’s, coming to terms with the fact that, ‘Well, this is it. I can’t have children now. It is done.’
Although some health practitioners preferred to be cautious with their choice of words when explaining the diagnosis, others, such as Dr C, an obstetrician-gynaecologist, favoured a more direct approach: ‘People like to hear the information straight up because they like to look it up too’.
Finding out about the implications of the diagnosis can also be difficult for women, particularly in relation to long-term health effects such as osteoporosis (see Long-term health effects of early menopause), and fertility loss (see Fertility and early menopause).
Dr Goeltom, a GP, explained the importance of speaking to women about the long-term health implications of early menopause.
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I think it is very important to discuss that, and explain to them. Some of them don’t realise the implication or the long-term effect for that. Some of them are quite happy not to have period, especially if in the past they have had issue with period sort of things. But see, we worry about not just what they will have to go through now, which majority of them will have some issue with hot flush, night sweat, and usually quite severe, or emotional issue; but they also have the implication on their fertilisation, or infertility. That also becomes a big thing.
The other thing is psychologically, you feel you are different. You feel you are ageing much faster. You feel you’re not the same. You’re less than everybody else. I think that’s also the issue you have to deal with, so it’s important to explain that none of the things they’ve done, probably, you know, the cause of it.
Yes, there are lots of different factors that might, you know, contribute to it; but in itself, not the cause of it. So you know, and then you have to also look into their long-term protection, towards the osteoporosis, towards the cardiovascular issue, towards the cognitive – dementia, which a lot of us worry about, as we live longer. There is also, you know, there’s the data suggesting that premature death in premature menopause woman who is not treated. I suppose because the cardiovascular, they feel it probably because the heart, you know, or the protection towards the blood vessels is actually not doing so well.
For women wanting to have children, fertility loss can be a ‘traumatic’ aspect of the diagnosis of EM (see Fertility and early menopause). Some health practitioners expressed the view that (with the exception of EM following oophorectomy) diagnosis should follow repeated tests over months of monitoring, because, as Dr C said: ‘it’s dangerous to tell anyone that they’re completely infertile unless either we’ve proven it over a very long amount of time, or their ovaries have been removed’.
Dr K, a fertility specialist, outlined her approach to delivering diagnosis and discussing fertility options with patients.
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So, when women come to you and you suspect that that might be what’s going on, could you talk a little bit about how you convey that diagnosis to them and what you try to keep in mind?
Okay, so that’s a really individualised approach and I guess, to a degree, it depends where they’re already up to in the knowledge pathway, but, I have to say, it’s a very, very traumatic time. And I always say that I think there is evidence that their ovarian function is extremely fragile, and it may not, at this point, be possible to get good eggs, but that usually – usually, not always – let’s say often, there are opportunities that it’s not a permanent situation, and we just need to be really patient. We have some strategies that we try to stimulate ovarian activity, and that we’re going to try all those strategies, and if nothing works, then we can sit and wait for a little while, and then there are other options.
So, I always end up with what options – how to live your life if that is the eventuality that there’s absolutely no ovarian function. I have to say, of the young people that I see, in about 80 to 90%, there will be able to sort of have a little bit of activity. So, sometimes it takes six to twelve months to actually evolve that process, to see whether you are going to get an improvement or not, and even when we just say, “Look, we’ve done everything, we can’t trigger or see any ovarian activity,” there’s still a five percent chance, per year, that you could just get resurrection of activity.
So, I talk about the diagnosis. I talk about the potential causes, I talk about what steps we can take to try and see if we can get some activity and that includes things that they can do, like relaxation and eating, you know, healthy lifestyle thing. I talk about steps that we can take, such as trying some hormone suppression and a few little tricks of the trade. Then, I talk about the strategies that we’re going to do, depending on what we find, which would include if we get some action – we can try and freeze, if we don’t, how we’re going to do hormone replacement, what long-term fertility options are available to them and – yeah, so lots of different strategies.
Several health practitioners spoke of the need not to overwhelm women with information and where possible ‘stage’ conversations on diagnosis and implications. As Dr D, an endocrinologist, said: ‘it’s a matter of saying, “I’m here, I’m going to do all the right stuff … But it’s going to be a delayed process, and there’s going to be several steps”’.
For women who experience EM as a result of cancer treatment, the focus of initial consultations is often primarily on cancer, with conversations about menopause symptoms occurring later. Ms Lewis, a breast care nurse, explained: ‘the doctors will talk to [women] in more detail once they prescribe the [endocrine therapy ] tablet, but they don’t go into detail earlier on. I think that’s because they feel that the patient has got enough to cope with … One step at a time and you can get people through. If you throw too much information at them too soon then you just confuse them’.
Obstetrician-gynaecologist
Dr Baber described his approach to informing patients of the implications of spontaneous early menopause in separate consultations.
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That avoids the first problem which is a failure to diagnose, and then frustration because they keep getting told there’s nothing wrong with them, and in fact there is, and it takes two years to find out. If you are the first port of call, once you feel you’ve made the diagnosis, it’s a very sensitive diagnosis. So it has to be explained in a very sensitive way. To just sit down and say ‘Look, you’ve got ovarian failure, take these pills,’ is completely unsatisfactory. So it needs to be explained.
I think you have to say, “What’s happening to you is because your ovaries are not working properly. Therefore, we know that you will have less oestrogen and your periods may go away forever, and we know if that stays from a young age onwards then you do have problems in terms of your bone health and your cardiovascular health. So we would normally recommend some hormones.
And the other issues are your emotional health, and the emotional health is really one of the most important of all. Because you may well be telling a young woman who’s otherwise healthy – and for example has been on the pill, comes off the pill to want to have children, and is suddenly being told she probably won’t be able to. So it’s very important – probably not at the first consultation, but in the first few months, to go over the sort of things that can be done to address those issues. And to provide help and support and in that regard, you need support networks, and a background of people like social workers, psychologists, and physiotherapists and so on.
You can’t possibly do it all in one consultation. Quite often if I see these young women first, I often suggest they have a second opinion from another colleague who I know is particularly interested in the area. And if they’re young, and fertility is a problem, then I send them to my fertility colleagues who work in my clinic at the hospital. Because it gives them a chance to go away, consider the things that I have said, get a second opinion, talk about what sort of options are available, and also to offer them, as I said before, the psychological support that you often need. But you definitely need to stage the discussion.
The emotional impact of the diagnosis can vary depending on the cause of EM; if it is spontaneous, related to cancer or other medical treatment (see Telling women that cancer or medical treatment may cause early menopause), or due to genetic disorders such as Turner Syndrome. Cases of spontaneous EM with no known cause (idiopathic EM) can be particularly distressing. As Dr D explained: ‘I think the worst thing is when there’s absolutely no cause and nothing that they can put their hand on because they feel very vulnerable – ‘Why did this happen to me?’ And to have a reason or a cause is very important for some women’.
Dr Goeltom, a general practitioner, explained that patients’ reactions to an EM diagnosis can differ depending on the underlying cause.
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The one following cancer treatment, it’s basically they’ve probably been geared up to know that they actually will get some sort of an issue with menopause. But the ones spontaneous tend to be the one who don’t realise, don’t know, and then suddenly you are lumped with problems. Which… it’s actually not a problem unless you really have a lot of them menopausal symptoms; some of them, don’t even have that symptoms. Don’t even know what the implication. Just feel weird. They’re not getting period. Worry if they are actually pregnant or not. Those kind of group, the one with the genetic issue, like with Turner, I think they well prepared, because they know it from when they were young, as it is diagnosed. They don’t get your period, and everything like that. So yes, they are different type of, you know, people you see.
Most of them will come to you, is because they’re worried they don’t get period, and then on the workup, you realise that they are actually going into the premature menopause of the primary ovarian insufficiency.
Some health practitioners also observed that the emotional impact of a diagnosis of EM was dependent on a woman’s particular circumstances, and emphasised the importance of asking women what the diagnosis meant to them.
General practitioner
Dr Ee shared her experience with a patient who had a ‘very positive’ reaction to being diagnosed with EM.
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It’s not necessarily a negative experience for all women. I mean, I certainly had one woman who was very happily single and knew that she didn’t want children and in a way, having that diagnosis I think really liberated her from the thought of, ‘Should I have children or not?’ because the decision was already made for her and she was very happy to go on hormone replacement therapy and that helped her symptoms and she always said to me when I saw her after that she was really happy and it had been quite a positive thing for her.
And I think, often we assume that women are going to be devastated by it and a lot of the time they might be but it’s, exploring what it means to that particular woman in her context.
So with this woman, it actually liberated her. She actually found it a very positive experience. She was happy to go on the hormone replacement therapy. That made her feel much better.
Further information
Talking Points (Health Practitioners)
Talking Points (Women)
Other Resources