The women we spoke with had various messages and pieces of advice for other women experiencing spontaneous or medically-induced early menopause (EM), focused on accessing good healthcare and information, building a support network, and learning to live with EM.
Accessing good healthcare
In order to access good healthcare, women advised other women with EM to firstly trust themselves, and their own instincts about their body and health. As Melinda said: ‘You know your body. I think I tried to just pretend things weren’t happening a little bit, or, they were happening, [but I’d think] ‘oh it can’t be that,’ you know. I think be in tune with your body, listen to your body.’ Trust in one’s own body was important for women to be willing to ‘push for answers’, research their condition, or get a second opinion, given that not all health practitioners are equally well informed about EM. As Ella said, ‘[you need] to have the strength to seek out the information, because you’re not necessarily going to be handed the information on a plate.’
Vicki, who has Turner Syndrome, talked about the importance of ‘doing your research’ and being persistent in getting ‘an answer’ or ‘a contact worth pursuing.’
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I’d say do your research, do your research, do your research. Follow your gut feeling. Yeah, if – you might think, ‘Oh such and such will – I’ll ring up such and such a place. They’ll have the answer for me, or they’ll know where to go,’ and they may not, and you might get turned down a billion times but you’ve just got to keep enquiring, keep enquiring. Sometimes I’ve been put through to the most absurd places [laughing], but I finally got an answer, or I’ve finally got a contact worth pursuing. So yeah, you’ve just got to – you’ve just got to do your research. Sometimes with Google, you might find nothing, but then if you put in similar words for the same thing, you get an answer, or you know, you’ve got to ring around and all that.
Natalie experienced EM after a hysterectomy for endometriosis. She advised other women to ‘shop around’, particularly at the diagnosis stage, if they weren’t satisfied with the care they were receiving from their doctor.
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Don’t feel embarrassed to shop around, because even your own GP, he might have been really good with a lot of other things that you’ve gone and seen him with, but maybe this just isn’t his area of expertise.
Maybe it’s just not something that he’s used to dealing with, and so if you feel that there is something wrong, don’t – it’s like people feel embarrassed going to a different hairdresser, like they’re betraying, they’re breaking up a relationship. Don’t feel like you’re doing that. Just – and listen to recommendations from other people as well, because my sister would never have had the diagnosis if she didn’t talk to us about it and we said to her, “Go see our doctor.” So I think – I think that’s the most important thing. Don’t feel embarrassed about what’s happening to you as well, because it’s not odd. It’s not welcome, but it’s not odd [laughing].
A few women commented that finding a health practitioner who was not only ‘skilled’ but who was easy to get along with was also important. Kate, who was experiencing menopausal symptoms as a result of ovarian suppression therapy, said: ‘get a specialist who cares about you and how you’re feeling and really asks those questions.’
Based on her experience of spontaneous EM,
Maddy advised other women to ‘educate’ themselves, and find a GP they ‘liked’ and who was specialised in women’s health.
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My advice would be educate yourself because not all doctors are right or even skilled enough. So I’d certainly go and get – educate yourself through books and things like that. My advice would be find – and I think there’s a bit more around now – like but find a doctor who specialises in women’s things and there’s – and there’s those – there seems to be a few more of those around now as well. And go to – get counselling.
Get counselling.
Yeah. That’s been – that’s something I wish I did earlier. But talk to other people about it and find some resources and things like that and – and if your GP’s not working – find another one if they’re not working for you. Some are them are not. So I would certainly keep going and find a GP that you liked and you resonated with and they understood you and even if they couldn’t help you they’d point you to somebody who can. But certainly educate yourself for sure and educate yourself on treatments, on HRT and – and things like that.
Accessing good quality information
The importance of finding ‘reputable’ information sources was mentioned by several women. Kirsty advised women ‘throughout the journey to tap into information that is credible and reliable and don’t get bogged down in it. Get the information that you need, but don’t spend hours and hours immersing yourself. It actually can feel like a scary place when you look at some of that stuff.’ Health information sources women found helpful included Jean Hailes for Women’s Health, and for cancer, the Breast Cancer Network Australia, Cancer Council, Counterpart, and Ovarian Cancer Australia.
Tracey’s advice to other women contemplating a risk reducing bilateral oophorectomy was to ensure they get information from ‘good sources.’
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I guess I’d tell other people to – I didn’t have a GP but if you have got a good, you know, GP, to use them as a resource and yeah, you know. People look things up online, you know, all the time these days. So, you know, look at something that’s reputable like, you know, I said I looked at the [hospital name] and I looked at Jean Hailes and, you know, they were, you know, reputable, you know, websites, good sources of information.
I looked at other things and just at forums. Because of this leg pain, you know, I’ve Googled that and just come up with different forums and I’ve read through and I just – different things people have written and to me, that was not helpful at all, you know, it’s not helpful at all and sometimes when people write things in forums, they can, you know, overstate the way things are and I’ve stopped reading that. That’s ridiculous.
So, you know, get information from your GP or a good reputable source and yeah, just don’t – you don’t know how you might be affected, you know, by the surgery, by menopause. So yeah, I don’t know. Like I said, if someone had said to me, you know, “You won’t be symptomatic”, you know, maybe I would have had it earlier. But you don’t know that and I was worried. I was worried about it and I’m glad that my worry was unfounded. But like I said before, I don’t believe you should have to put up with symptoms, like there’s plenty of treatments and management strategies and things like that so – and I know that’s not going to resolve everything for everyone but I would say speak to, you know, speak to your GP or a, you know, women’s health clinic, you know. There’s lots of different resources around that are available so yeah, if you do experience those sorts of symptoms, then try and talk to someone about how you can get rid of them or manage them.
Building a support network
Many recommended that other women experiencing EM talk to others about their experience and ‘surround’ themselves with support, because, as Jacqueline said, ‘you can’t go through it alone, it’s just too heavy a burden.’ A few advised seeking counselling or a support group, in addition to talking with friends and family. Sonia recommended women ‘go talk to someone who’s there just for you about this and all the stuff that it brings up.’
Nancy, who experienced surgical menopause when she learned she carried the BRCA1 gene mutation after having breast cancer treatment, urged other women to share their problems with others to ‘reduce pressure.’
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Happy is [a] very important thing. Make you [are] happy, you will [be] getting better, this one is very important.
So and how, what can women do to make themselves happier do you think?
Talk with some – like, we have found some group, talking with other people [who] have your same problem, then if you can talk, you reduce [feeling] upset.
Because if you can talk, it means you are [not] upset. You share with other people, you reduce your pressure.
Fiona underwent surgical menopause to reduce her risk of breast cancer recurrence. She emphasised the importance of talking to other people with similar or related experiences.
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Talk to your grandmother, talk to your mother and work out what suited them through menopause because it’s like your birth story. My birth story was very similar to my mother’s birth story. So the same sort of thing goes hormonally through the family, so that’s the easiest thing. Check with your family and see how they went through.
Yeah talk to your family, find out what’s happening with their menopausal stories
And talk to anybody who’s been through it. And talk to other patients in the same thing. Go through Breast Cancer Network Australia and have a look – there’s lots of different people there who talk about it. Ask questions, you can join forums, join your local dragon boat group of girls or go online.
A couple of women advised other women in relationships to speak openly about or seek help for problems with intimacy, if they were experiencing them. As Maree said, ‘it’s not something that if you ignore it it’s going to go away. You need to address it.’
Lydia said talking about intimacy, whether with a GP or a partner, was ‘hugely’ helpful.
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I think with regards to the intimacy stuff, I think try and – if you can – chat to your GP, if you’ve got a good GP that you can talk to about it earlier rather than later, I think that’s better, and yeah, I mean I don’t know how, you know, what kind of relationship women have with their husbands, if they can talk to them, if they can’t – but yeah, talking about things hugely helps, rather than just kind of closing yourself off because all the symptoms are just so overwhelming sometimes.
Life with and beyond early menopause
Women wanted others experiencing EM to know that they were ‘not alone.’ As Kirsty said, ‘one in 100 women go through [spontaneous] menopause before the age of 40. I mean that’s 1% of the population, that’s really high, but no one talks about it.’ Others wanted to remind women that they were more than a ‘baby-making body.’ Lorena said, ‘First thing – don’t give up, because it’s too easy to think, ‘Oh, my God, I am useless.’ That’s not true. I can see everything, how I grew up and the things I did ever since [first being diagnosed with spontaneous EM]; I did so many really nice things.’
While not underestimating the challenges of EM, physically and emotionally, women also reassured other women that it was possible to come to terms with EM and its implications such as involuntary childlessness. To help her work though her grief over not being able to have children, Jenni found it ‘cathartic’ to create a photobook in which she documented her experiences with EM, infertility and childlessness, adding that ‘it validated [her] experience.’
Others commented that the experience of EM could lead to positive outcomes. Several women described learning to ‘value’ themselves more following their experience of EM, prioritising their health, and appreciating what they had.
Sonia shared her reflections on how she felt now, several years after being diagnosed with spontaneous EM.
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I guess I would also want to say this to other women – yes, there is this sort of enormous shift in identity and things are thrown up in the air, and it takes a while to land, and things land on different ground in a different sort of way, you know. But I’m healthy … and even the things that I thought I wouldn’t get over like the grief over not having children, it passes, and you know, like every kind of loss, it moves and it changes. And – look after your health, look after your health!
Melinda reflected on the ‘positives’ of spontaneous EM, and encouraged other women to ‘enjoy life for what it is.’
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It’s just enabled me to focus on what’s really important in life I think and, I’m focussed more now about yeah well how strong my bones will be in 10 years’ time rather than how I might look in my bikini. You know it just really is those, it really just, and I think again that comes with age anyway but I do think that those things really start to ring true and that enables you to just let go and just enjoy life for what it is, so I guess in a nutshell get some good, good support around you, professional and family, you know family or friends or someone you can trust and confide in, I think it is helpful to have someone like that. Or from within, you know, your family.
Focus on the family you do have whatever that may, however that may look and yeah, to really think of it as a time to really focus on yourself and what your needs are physically, emotionally and do those things that make you feel good and get on a good plan and it’s taken work on my part of course as well as, I mean specialists can tell me what to do but I’ve had to go away and do it. So I think that’s been an effort to do that but it’s been worthwhile because I can say I’m in a regular way of doing things now, [there] could still [be] room for improvement, but yeah I’m much better able to tap into my own needs and when I need a little bit of down time I will let myself have that downtime as opposed to just pushing on and meeting everybody else’s needs because that’s what I know that I need to do to feel good and get on with the next day.
And sometimes I think, well you know you’re menopausal of course you’re going to be tired today and I give myself a little bit of leeway as well, you know from, from time to time which I probably wasn’t good at in the past, I’m much better now at tuning into my own needs and I do think that’s come from this whole experience definitely. Yeah so, that would probably be my main, yeah, being grateful for what I do have and as opposed to what I don’t have.
Women emphasised the existence of help, whether for EM symptoms, emotional difficulties, or for some women fertility preservation. As Yen-Yi said, ‘seek help. There’s always help.’ Some women mentioned menopause clinics or finding health practitioners with expertise in diagnosing and managing EM. Others talked about finding medical treatments or lifestyle measures effective for symptom management, shared their experiences about novel fertility preservation methods that had been successful for them (see IVF, fertility preservation and other paths to parenthood), or had found good counsellors or support groups.
Theresa , who underwent surgical menopause after a risk-reducing oophorectomy, reminded other women that there was ‘no need to suffer’ EM symptoms and encouraged them to ‘investigate’ their ‘options.’
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And what about message or advice to other women in – with similar experience to you, anything you’d like to pass on?
Just to not underestimate the impact that a lot of these symptoms are having on your life, and to know that there is, in most cases for most of the symptoms, the effects of menopause, there are things that can be done to help minimise those, and not to wait a couple of years to [laughing] to discover what those might be. There – really the message that they tried to get through to me was that you don’t have to suffer, which really, no need, and you know, so to be willing to at least investigate what some of those options might be to assist each person. That would be the main one there.
Yeah. There is no need to suffer and most things can be treated or minimised or there are some coping mechanisms and skills and tricks and things that you can do to help minimise that impact.
Yen-Yi felt that there were many resources available for women experiencing EM following cancer treatment, and urged other women to ‘reach out.’
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Reach out, and reach out, and reach out. I just think that it’s not perfect, but no matter what it is, we are so well-equipped [in Australia]… So I guess sometimes when people tell me, “Oh, you know, the system’s so broken, or this doesn’t work, or that doesn’t work,” and I was thinking, ‘We’re about 90% there, you know. Yes, the 10% in anything is always the hardest to attain and to reach, because you know, you’re attaining for the – the last 10% you know.’
But I’m thinking of the story this vicar was telling me when he say he used to do a lot of ministry work in [country name], and they were teaching the little kids and they were talking about vets, and then the kids said, “What? You have doctors for animals? We don’t even have doctors for us.” And then that’s when I realised that, you know, there’s so much to be grateful for where we are, so you know, I would just say – use the resources, reach out.
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