Women’s messages to other women with early menopause

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.’

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.

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.

 

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.’ 

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.’

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.

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. 

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.

Melinda reflected on the ‘positives’ of spontaneous EM, and encouraged other women to ‘enjoy life for what it is.’

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.’

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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