EMW20 (Sylvia)

Name: Sylvia
Age at interview: 40
Diagnosis: Medically-induced Premature Ovarian Insufficiency (POI) (following uterine cancer treatment)
Age at diagnosis: 37

Background: Sylvia lives in a metropolitan city with her husband and other relatives, and was not in paid employment at the time of her interview. She is of Māori background.

About Sylvia: When Sylvia was in her late 30s, she underwent a hysterectomy oophorectomy, and radiotherapy to treat uterine cancer which caused surgical menopause, leading her to experience night sweats, low libido, memory lapses, and weight problems. Sylvia was unable to take Hormone Replacement Therapy (HRT) due to her cancer type, and found other medications for menopausal symptoms ineffective. Although her experience has been ‘traumatic’ and ‘lonely,’ she feels it has made her more resilient.

More about Sylvia: When Sylvia was 36, she experienced persistent menstrual bleeding for almost 12 months. Because she had experienced years of irregular menstrual periods, she ‘ignored’ the bleeding until she one day ‘passed out’ from pain, prompting her to seek medical help.

Further investigations revealed Sylvia had ovarian cysts, which she had surgically removed. However, during her surgery, her doctor discovered she had some ‘unusual growth,’ which turned out to be ‘serious’ uterine cancer. Sylvia was advised to have a hysterectomy and oophorectomy followed by radiotherapy.

As Sylvia had not yet children, she decided to try fertility preservation and underwent two IVF cycles to try to harvest some eggs before her surgery. Both cycles were unsuccessful, but due to the aggressive nature of her cancer, Sylvia was advised against trying IVF again, and three months after her initial diagnosis she had her uterus and ovaries removed and began radiotherapy.

Sylvia reflected that while her surgery or cancer ‘didn’t frighten’ her, her experience of medically-induced Premature Ovarian Insufficiency (POI) has been ‘traumatic.’ Menopausal symptoms ‘immediately kicked in’ after her surgery, leaving her in ‘a state of absolute confusion’ and ‘emotional stress.’ Sylvia experienced night sweats, hot flushes, headaches, weight issues, low libido, fatigue, and memory lapses.

Unable to take Hormone Replacement Therapy (HRT) due to her cancer type, Sylvia was recommended some other medications by a doctor at a menopause clinic. However, when these were ineffective, she recalled being told, ‘You seem a pretty calm person. It’ll work itself out,’ and advised to see her GP. Participating in a research study on cancer and early menopause was helpful and allowed Sylvia to get useful information about the long-term health effects, but otherwise she said her ‘journey’ had been ‘incredibly difficult’ and ‘lonely.’

For Sylvia, the ‘toughest part [of POI] was realising I’d not be able to have children,’ particularly given the importance of motherhood to ‘female identity’ within Māori culture more broadly. Sylvia also felt that her relationship with her partner had suffered, that her ‘confidence as a female’ was impacted, and described losing her senior management position because her company was unsupportive after her cancer treatment and POI.

Sylvia feels that experiencing cancer and medically-induced POI has made her ‘wiser’ and made her value herself more. She is now taking a ‘step back’ and re-evaluating what role she can play within her family and the wider community. Sylvia urged other women not to ‘be an ostrich with your head in the sand’ about health issues, and to be assertive about ‘understanding your own needs and looking for solutions.’