For women diagnosed with spontaneous early menopause (EM), premature ovarian insufficiency (POI), or medically-induced EM, access to adequate, credible, and relevant information about EM/POI can be an important source of support. By helping women decide about treatment options, find ways to manage symptoms and long-term health risks, and learn about other people’s experiences, good quality information and being able to talk with other women who have ‘been through’ EM can help alleviate feelings of distress and isolation (see Psychological therapies for early menopause and Impact of early menopause on relationships).
Information sources
Information sources women mentioned accessing to find out about EM included websites, medical pamphlets, books, newsletters, online forums, scientific journals, health practitioners, other women with experience of EM or menopause, and support groups.
Fiona, who had a risk-reducing bilateral oophorectomy after breast cancer treatment, described the different sources of information she accessed in researching breast cancer and EM.
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I went straight to what I would call the reputable sources. So I started off at the Breast Cancer Network of Australia because that’s where it was affecting me firstly. So I started off there, I spoke to other people in the same situation as me. I spoke to health professionals. I spoke to surgeons and pretty much anybody and everybody. But when I started at the Breast Cancer Network website I would then follow various links. I generally would start at a reputable source and then go on from there.
I did have a look at quite a lot of breast cancer studies and generally that’s through – I can’t remember exactly what it’s called, but it’s like a health med publication which shows research papers and you get abstracts and information on the studies. And I’d quite often read that. Because I have a scientific background it was easy for me to understand and I could get a clue on certain elements that were appropriate to me.
My oncologist mentioned early menopause in relation to survivability, not necessarily in relation to side effects or the options. Because my husband had already had his vasectomy and I’d already had two children, and we hadn’t planned on more, the whole element of parenting didn’t come into it. It was never something that I was warned about or nobody specifically mentioned it. Probably because I was proactive enough to mention it myself and say look these are the things. And I guess I’d actually talked to my oncologist about it and my health professionals about it before they had a chance to mention it to me.
So in my case, I was a bit proactive and I’d already done my research and I’d already spoken to friends who’d been through various elements. I guess it was less about what the health professionals told me and more about the questions they might have answered that I hadn’t found the answers to, elsewhere. But I’d also done a lot of talking with the ladies on the chemo ward or friends who’d been through similar. I’d talked to my mum and found out how my mum had gone – how old she was when she went through menopause. I’d spoken to my grandmother about what it was like to be in menopause. And I guess I don’t remember the health professionals telling me much about it, that I didn’t either already know or had been told by somebody else.
Information online
Although the Internet was an important source of information about and support for EM, women noted the importance of being selective and cautious about what they accessed. Some initially felt overwhelmed and fearful because of information they found online, including Alex, who said, ‘research on the Internet was very bad the first time I did it.’ Identifying informative websites associated with credible organisations was a way of alleviating concerns (see Using the internet to research menopause related information).
Kirsty described her experience of searching for information about EM online.
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I was really careful about where to get my information about early menopause, particularly because I’d started hearing from doctors around some of the high risks of someone so young having a drop of oestrogen in their body, like osteoporosis, heart disease, dementia. That compounded with all the other things I have as complications in my body, it was enough to really send me into a spin of mental health issues and health anxiety. Wondering whether I’m even going to see 50 as part of it.
So I was really careful about where I got my information from. The first place is that I went straight to the Jean Hailes Foundation website. They’ve got really great bit of information about premature menopause for women and they deliver it in a way that is nice and clear and concise that doesn’t drive fear into the heart of every woman.
I also went on to the Better Health Channel website, to look at menopause in general. That’s the Victorian government website and the rest of my information was pretty much from my doctors. I did jump into two forums for women with early menopause. One was called the Daisy Foundation, Daisy Network. They had a great forum there, but what I was concerned about was, I was reading that information, women sharing their stories but then also sharing information that isn’t may be medically correct. I think that they were emotional which is totally understandable but maybe not always sharing the correct information they heard, or maybe they did hear it but maybe it’s not the same for every woman. I could see that the whole forum were scaring the crap out of each other. So I was really mindful about tapping into the stories of other women but not necessarily the medical advice that they were sharing that they had got.
Women had varying opinions about online health forums. Many were, like Kirsty, concerned about potential misinformation and the lack of regulation. As Louise said: ‘I wanted straight down the line evidence, I didn’t want, “My cousin’s sister went through early menopause”. I wanted to know facts.’ However, others found personal stories or experiences helpful.
For
Alex, reading about other people’s experiences online was helpful for the kinds of questions she had following a radical hysterectomy for ovarian cancer.
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I ended up finding a Canadian site called Stupid Cancer or Cancer is Stupid and that was the best because it was just a forum of young people. Things like, “How soon can you date after you have had cancer?” [ laughing] It was a legitimate question I had. “How do you post on Facebook that you’ve died?” “What are your funeral wishes for social media?” These are actually things that we need to think about that 80-year-olds don’t. [ laughing]
What else did I want to know? I was interested in people’s stories about how they started families. So I’ve started following a lot of family sites about surrogacy, adoption and fostering. These things became interesting to me. Work, bills, because we’re all young, we’re building up our thing. Living with parents, it was nice to read some things about other people who had to move home. It’s very upsetting when you’re starting your life and you’ve got a great house in a great area you love and then you have to move back with your parents because you’re sick. I just wish I could have read more experiences about young girls with menopause because it’s embarrassing when you’re the only person in your group.
Information from health practitioners
Several women were appreciative of the information provided by their health practitioners. Melinda recognised the importance of bone health after reading a book her endocrinologist recommended. Others felt information from health practitioners was either too limited, or focused on diagnosis, symptoms and treatment. Many described supplementing information from health practitioners with other sources of information.
Before having a risk-reducing bilateral oophorectomy,
Tracey contacted some researchers to learn more about EM and HRT, as the health practitioners at the gynae-oncology clinic she attended ‘weren’t very helpful.’
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One of the things that was my biggest concern around the surgery was the surgery itself but also the early menopause. I spoke to the people at the clinic about that and I think they weren’t very helpful but, I’m not sure how much a 60-year-old man can talk to a 40-year-old woman about menopause. He basically asked if I was on the Pill and, the treatment is similar to that, you just keeping taking a Pill every day. He didn’t really talk to me about what that meant and what the symptoms were or how to manage it or anything like that.
So I did a bit of Googling and I actually saw a study about menopause. I think it was an ad in the paper and through a different centre in [city name], a different tertiary centre, a study running that was starting up. So I contacted them and I spoke to a person there and she actually provided me with a heap of information and directed me towards a website as well to have a look at. I probably just spent a bit of time looking through the website and deciding what I wanted to do.
Theresa relied on different sources for different kinds of information.
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I relied particularly on the doctors and specialists that I was seeing through the [health clinic], any specialists that I saw in terms of the actual surgery, or anything like that.
I probably relied heavily on them for any information that they had. But anything beyond that, and particularly more towards the day to day managing symptoms, and learning what others had gone through, I would say I relied mostly on the internet, either through specific websites that were recommended, particularly from the specialists. Like about women’s health and menopause, or some of the support groups around high risk families and high risk women.
Several women recounted finding it difficult to make informed decisions about treatment because of uncoordinated information from different health practitioners involved in their care. Kate, who was undergoing ovarian suppression therapy after a mastectomy, chemotherapy and radiotherapy for breast cancer, recalled that in the early stages of her treatment ‘everything was sort of separate: here’s your oncologist, here’s your specialist who’s in charge of radiation, here’s the IVF person, here’s the cardiologist.’ In hindsight, she said she would have made different decisions about aspects of her treatment had she had more information.
Kirsty, who had spontaneous EM, later found out she was a carrier of the BRCA 2 gene mutation. She recalled feeling ‘emotional and upset’ when she received conflicting advice about HRT from different oncologists.
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I have got over my fear about the HRT potentially triggering breast cancer which was the biggest concern and why I haven’t been taking it for the last five years. But the research is looking more solid, and as part of my diagnosis, I got the fear in me. It was a big process, being told that having premature menopause means that you are at a higher risk of heart disease, you’re at a higher risk of osteoporosis and dementia. That’s a hard thing for a woman in her early 30s to hear. On top of, I have the BRCA 2 gene, and all the other complications in my body. That was hard to hear.
HRT helps me to alleviate a bit of that fear around that stuff by putting some oestrogen back into my body, but it was a really big and personal decision for me. There’s been a lot of confusing information about HRT, and new research seems to be coming out all the time, in research with women under 60, or women under 50, so it can be really confusing. Recently, before I took HRT, I went through a time of feeling really upset and emotional because I got four different advice from four different oncologists. What I actually did was I demanded that they all met or talked to each other and decided what advice they were going to give me.
And that would be a recommendation I’d give to any woman who’s going through any sort of health issue, or early menopause is don’t be afraid to make demands of your health professionals in a friendly way. But, if you feel like you’re not getting the information that you need, or you’re feeling like you’re getting mixed advice, well then ask them.
Finding relevant information and sharing experiences
Women noted that feelings of isolation could be compounded by a lack of information about EM that suited their needs and that they could personally relate to, given their age or stage of life.
Jenni said it was hard to relate to information about normal menopause because it was aimed at women in their fifties who were at a different stage of life.
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Trying to find support is really difficult. The information that is around menopause is aimed for women around the age of 50 or in their 50s who are empty-nesting. I can’t relate to the narratives around that. I didn’t get a chance to build the nest in the first place. I didn’t have the babies that I dreamed of, so how can I relate, and how can other women relate to me when they’re talking about their children going off to university, or, getting married and moving out of home, and I’m still grieving the children that I couldn’t have? It’s very, very difficult, and there’s a huge lack of support there.
Being able to talk with or hear from other women with relevant experience was seen as particularly important.
Lydia was given written information about medically-induced EM but wished she had been able to talk to someone who had ‘been through it.’
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So, then the pamphlets talked a bit about possible symptoms?
They talked about the hot flushes and maybe weight gain, just feeling tired, lack of sleep, some intimacy issues. But, when you’re not going through it, none of it really makes sense. I mean you can read it and it’s fine, but when you’re feeling well, none of it matters that much. Like you’re reading it going “Oh yeah, okay well that could happen but then it might not happen,” and I found that hard. It would have been really great if there was someone to talk to afterwards that had been through it, or even just before, or just after the surgery to say, “Hey this is what my experience was.” I think that would have been much more beneficial for me. But yes, there were lots and lots of papers to read.
Some women actively sought out other women who had similar experiences, as they found it reassuring to be able to speak with someone they could ‘relate to.’
Jacqueline felt ‘fortunate’ that she was able to talk to someone who had been through a hysterectomy and early menopause.
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I searched and I searched and I went, “Surely there’s got to be someone out there who’s also going through this.” What I did have is one of the people who were on my course at the time, actually went through, a week after me, with a hysterectomy. So, I had someone who was going through the same thing, but she could use hormone replacement. So that was the big difference between what I was experiencing and what she was experiencing. But she’d gone through the same operation. So I could say to her, “Are you falling asleep? Do you get to the point of the afternoon where no matter what you’re doing you’ve just got to go and lie down?” So it was good to have someone like that. But she was in a different state so it wasn’t like I could go and have a cup of tea with her and have a quick chat. It was pinging and emailing, and going, “Oh my gosh, I’m ratty today, I’ve got this assignment due. I’m just so tired though.” But I had really good lecturers at the time who understood and they gave me extra time where I needed it. I was very fortunate.
But I think that also helped that they knew the background so, they were with me on this journey. One of the lecturers had also undergone a hysterectomy, so there was a bit of understanding, a bit of, “I understand what you’re going through because I went through it 10 years ago.” So, when you start talking to women, you do find out a little bit more.
A few women were happy to talk with older women who had been through ‘natural menopause’. Others considered their experiences ‘irrelevant’ or a reminder that they were not ‘normal’, and wanted to talk with women who had experienced early menopause.
Melinda described talking to an older friend about menopause and HRT.
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I’ve got friends that are older, friends that are younger and one friend has come to mind who I have told and she is a bit older and has gone through menopause. I have told her and again different, she is quite a bit older though. So she’s probably gone through it at very much the normal sort of time, in the normal time frame that you’d expect. And I have talked to her in confidence and that’s been good. She didn’t go down the path of HRT.
Further information:
Talking Points (Women)
Talking Points (Health Practitioners)
Other resources
