Seeking information about early menopause: Women’s experiences

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.

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.

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. 

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.’

Theresa relied on different sources for different kinds of information.

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.

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.

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.’

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.

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.

Further information:

Talking Points (Women)

Talking Points (Health Practitioners)

Other resources