EMW01 (Kirsty)

Name: Kirsty
Age at interview: 37
Diagnosis: Spontaneous Premature Ovarian Insufficiency (POI)
Age at diagnosis: 31

Background: Kirsty works full-time as a teacher. She lives with her husband in a metropolitan city and is from an Australian background.

About Kirsty: Kirsty was 31 when she was diagnosed with POI after her periods stopped following a miscarriage. Around the same time, Kirsty also learned she had the BRCA 2 gene mutation. She was advised against taking HRT, though this advice has now changed. Kirsty described the last few years as ‘challenging’ but feels that she has now ‘made peace’ with experiencing POI and not having children.

More about Kirsty: When Kirsty was 31, she and her husband became pregnant but had a miscarriage at 12 weeks. When her periods didn’t return, Kirsty’s GP tested her FSH (Follicle Stimulating Hormone), oestrogen, and thyroid levels, finding her FSH levels were high. He referred her to a women’s health clinic, where following further tests she was told she had premature ovarian failure (POF) (now called Premature Ovarian Insufficiency). Kirsty said the diagnosis ‘hit [her] like a runaway train.’

Kirsty and her husband were advised to try IVF quickly because they ‘didn’t have a very large window.’ However, after the IVF specialist tested her AMH (Anti-Mullerian Hormone) levels, Kirsty was told she was ‘quite far’ into perimenopause and that if she wanted to pursue IVF she would need an egg donor.

Around the same time, Kirsty had tested positive for the BRCA 2 gene mutation, and was advised that IVF hormone injections could increase her risk of breast or ovarian cancer. Learning that IVF was unlikely to be an option was ‘devastating,’ particularly after the ‘rollercoaster’ of Kirsty’s miscarriage, and being diagnosed with BRCA 2 and POI.

Hormone Replacement Therapy (HRT) was not recommended at that time for women with the BRCA 2 gene mutation as was thought to increase their cancer risk. This meant Kirsty ‘literally had to live menopause,’ with little symptom relief. Hot flushes, disrupted sleep, and weight gain were the biggest challenges. Lifestyle changes Kirsty found helpful included sleeping under a fan, wearing light clothing, cutting her hair short, drinking less alcohol, exercising, getting a dog, and being ‘out in nature.’ Massage and yoga were also helpful for relaxation and muscle pain.

Kirsty recently found out the ‘amazing news’ that she can now take HRT. IVF is also a possibility, but she and her husband have decided not to pursue this. Kirsty also has annual bone density, cholesterol, and BRCA 2-related cancer risk checks, and plans to have her ovaries removed in future.

Witnessing friends and family members having children has been challenging, but Kirsty is close to her nephews, cousin’s children, and godson. Her husband has been very supportive, and after five years Kirsty has ‘made peace’ with her diagnosis of POI.

Kirsty believes there is a ‘silence’ around early menopause, including among health practitioners. She urged doctors to ‘flag’ POI as a possibility with young women experiencing symptoms, and to refer newly diagnosed women to psychological support. She believes support groups for women with POI would be helpful, and encouraged others with the diagnosis to not to be afraid to ask for help.