Age at interview: 30
Diagnosis: Primary amenorrhoea (absence of menstruation) associated with Turner Syndrome
Age at diagnosis: 6 (Turner Syndrome)
Background: Vicki works casually as a disability educator and lives with her family in a metropolitan city. She is from a Greek background.
About Vicki: Vicki was diagnosed with Turner Syndrome at age six, and started taking Hormone Replacement Therapy (HRT) at 13 after primary amenorrhoea was confirmed, to induce puberty and protect her bone and heart health. She developed endometriosis in her teens, and has struggled to find a dose of HRT that suits her. Vicki is currently exploring a hysterectomy for endometriosis. She receives medical care from various health practitioners, as well as holistic treatments and pastoral care.
More about Vicki: When Vicki was six years old, she was diagnosed with Turner Syndrome. She described her experience in late primary school onwards of not fitting in at school, being bullied over her height, and realising that ‘other girls were changing’ while she was not. At age 13, she began taking Hormone Replacement Therapy (HRT) to induce puberty and to protect her bone density and cardiovascular health.
Vicki has experienced side-effects from taking HRT, including mood swings. In her teenage years she also developed endometriosis, which caused ‘pain and bleeding.’ Vicki’s sensitivity to HRT has meant her doctors have tried her on many different dosages. These adjustments have sometimes worsened her mental health and she now insists that any changes to her HRT are made very ‘gently.’ Her endometriosis has not improved and Vicki is now contemplating a hysterectomy to resolve this.
Vicki’s medical team comprises a GP, psychologist, endocrinologist, gastroenterologist, physiotherapist / exercise physiologist, and a cardiologist. She attends a Turner Syndrome clinic, and recently went to a women’s mental health second opinion clinic which she found helpful. Vicki acknowledged the importance of her GP, who is an ‘advocate’ for her and helps her make sense of information provided by her specialists. She also receives support through a Feldenkrais practitioner who helps improve her ‘spatial awareness’ and posture, and ‘amazing’ pastoral care, craft groups, and spiritual meditations offered at a local church.
Being able to study part-time and access campus services including the gym, health services, and Christian ministry enabled Vicki to complete university despite her health problems. Since graduating, regular full-time employment has not been possible due to her energy levels, though she hopes this will change. Vicki receives support from her partner, family, and friends she has made through summer camps and peer support groups for people with chronic illness as well as her church.
Vicki has confronted cultural expectations about having a family, but feels ‘ambivalent’ about the prospect of becoming a parent. She wants to be ‘sensible’ in considering if her body can cope with having a baby and raising a child. Vicki’s priorities are to improve her quality of life, mood stability and possibly secure regular work. She encouraged health professionals to give women with complex health conditions information in writing as well as verbally. She advises other women to ‘do your research,’ ‘follow your gut feeling,’ and keep asking around until you find answers or people who can help you.