Messages to health practitioners caring for women with early menopause

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.

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.

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.

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.

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.

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.’

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.

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.

Jessica suggested that GPs should be proactive in attending to the health of women who have experienced EM.

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.’

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.

Further information:

Talking Points (Women)

Talking Points (Health Practitioners)