EMW26 (Lydia)

Name: Lydia
Age at interview: 42
Diagnosis: Medically-induced Premature Ovarian Insufficiency (POI) (following a risk-reducing bilateral oophorectomy)
Age at diagnosis: 38

Background: Lydia works part-time as a nurse and lives in a metropolitan city with her husband and two children. She is from a Greek background.

About Lydia: A family history of cancer prompted Lydia to have genetic testing at 38; after learning she carried the BRCA1 gene mutation, she had her ovaries removed. Following surgical menopause, Lydia experienced hot flushes and low libido. Against her doctor’s advice, she decided against taking Hormone Replacement Therapy (HRT) due to concerns it would increase her breast cancer risk. Lydia eats well and exercises regularly to help protect her bone density and heart health.

More about Lydia: A family history of breast and ovarian cancer prompted Lydia to undergo genetic testing at age 38. Finding out that she had tested positive for the BRCA1 gene mutation, which increases the risk of breast and ovarian cancer, entailed ‘a lot of processing’; Lydia was particularly worried that she had passed the mutation on to her daughters.

Lydia decided to undergo a risk-reducing oophorectomy to reduce her risk of ovarian cancer. Although her surgery and recovery were ‘really good,’ Lydia found the onset of premature menopause symptoms ‘overwhelming’ and remembered being ‘in tears’ when she experienced her first hot flush.

Lydia received ‘lots of papers to read’ from the genetic counsellor, including pamphlets about potential premature menopause symptoms such as tiredness and low libido. However, she felt that written information was ‘just words on paper,’ and that she would have benefitted more from being able to talk to ‘someone who has gone through it … to find out their experiences.’

Against her gynae-oncologist’s advice, Lydia decided not to take Hormone Replacement Therapy (HRT) as she was worried that it might increase her breast cancer risk[1]. She said that her gynae-oncologist was ‘surprised’ and could not ‘really understand’ her decision.

At work, Lydia did not share details of her surgery and menopause at first; however, later she had some conversations with colleagues about her hot flushes. Over time, the frequency of her hot flushes reduced, and she has learnt to deal with them on a day-to-day basis. Although low libido has been a concern for Lydia, she said that her husband is a ‘good communicator’ and the changes in intimacy were ‘ongoing issues that you just need to keep working through.’

Bone density and heart health are ongoing concerns for Lydia. She takes a vitamin D supplement, has changed her diet, in particular reducing her consumption of meat and fried foods, and walks her dogs for exercise. Support from her husband and sisters has been helpful. Overall, she feels that ‘even with all [the] symptoms,’ the surgery was ‘worth it’ to decrease her risk of cancer. Lydia encouraged others with similar experiences to just ‘live your life’ because you cannot ‘live in fear’: ‘you’ve just got to get out there and do your best and be kind.’

[1] Use of HRT until the natural age of menopause (51 years) is recommended for women with spontaneous POI for menopausal symptoms as well as bone and heart health, unless there is a medical reason not to take oestrogen, e.g. personal experience of breast cancer, or they experience side-effects they cannot tolerate. Research which showed an increased risk of breast cancer with HRT involved women over 50 years and the findings are not applicable to young women with POI.