Seeking help and diagnosis for spontaneous early menopause: Women’s experiences

Spontaneous early menopause (EM) or premature ovarian insufficiency (POI) can be difficult and slow to diagnose, especially if women or health practitioners do not think of it as a possible explanation for women’s symptoms (see Spontaneous early menopause: Early signs and symptoms). Diagnosis usually involves taking a woman’s history, examination and, if she has not had a menstrual period for 4-6 months, conducting blood tests to test for an increased Follicle Stimulating Hormone (FSH) level (the diagnostic criteria for POI is elevated FSH on two occasions at least one month apart). Further tests will be required to assess the cause of EM / POI (see Causes of spontaneous early menopause: Women’s accounts).

Seeking help

When first seeking help for menopausal symptoms, women commonly consulted a GP. Some women were diagnosed relatively soon after first seeking help, particularly those who were experiencing difficulties conceiving, who had finished having children, or who did not have other health conditions that made diagnosis more difficult.

Kirsty was diagnosed with spontaneous early menopause after her GP referred her to a women’s health clinic. She and her husband were trying to have a baby at the time.

However, most women made repeated attempts to seek help before their symptoms were properly investigated, a few reporting it had taken several years to be diagnosed with spontaneous EM. Many attributed this to doctors’ lack of awareness of the condition, which could result in women feeling ‘dismissed’, or frustrated by explanations that did not seem ‘right’, such as stress, anxiety, depression, or pregnancy (see Early signs and symptoms of spontaneous early menopause. Some women recalled beginning to doubt themselves as a result of the length of time it took for their symptoms to be accurately diagnosed, and a few also noticed that the range and severity of their symptoms varied over time, before they were diagnosed.

Jenni described the frustrations she encountered over five years of trying to seek help for her symptoms of spontaneous early menopause.

For some women, diagnosis of spontaneous EM was delayed because of living in different places and being unable to seek consistent medical care; other health conditions; or doctors’ reluctance to tell them the diagnosis. Lorena was 23 and living in a different city when she first sought medical advice: ‘So I was alone there and I think the [gynaecologist] didn’t want to tell me, for good reasons I think. So she started to do a lot of other research about it, but she was freaking me out because she didn’t want to tell me what was going on.’

Ella described her ‘complicated’ story of seeking help for spontaneous early menopause over many years while also experiencing ‘severe’ depression and living in different places.

Sonia described her experience of being diagnosed with spontaneous early menopause and Hashimoto’s Disease at the same time.

Being diagnosed

Although some women were diagnosed with spontaneous EM by their regular GPs, most were diagnosed by doctors they had seen for a second opinion or for other problems – other GPs, doctors at specialist women’s health clinics, fertility specialists, or gynaecologists. Women were usually diagnosed after blood tests checking levels of FSH or other hormones (e.g. oestrogen, dihydroepandrosterone (DHEA), testosterone). A few had ultrasounds, or genetic tests to check for the cause of spontaneous EM/POI (see also Causes of spontaneous EM: women’s accounts).

How women felt about being diagnosed with spontaneous EM varied, though most women found the experience upsetting. For several, this was because the diagnosis was delivered insensitively.

Several women had not expected spontaneous EM as a diagnosis and were ‘devastated’, while many were distressed about the implications of spontaneous EM, particularly fertility loss or concerns about premature ageing (see Emotional impact of early menopause and fertility loss and Early menopause and identity, social connection and future plans.)

Being diagnosed with spontaneous early menopause at 25 was a ‘shock’ for Lorena, and ‘really, really hard.’

However, not all women found being diagnosed with spontaneous EM difficult. Melinda experienced a degree of ‘relief’ while Jessica was ‘busy’ with a full-time job and two school-aged children: ‘I didn’t have time to really reflect on it an awful lot beyond, ‘Oh, so I can’t have any more kids. Okay. Well, what’s next [laughter]?’.’

Being diagnosed with spontaneous EM helped explain Melinda’s symptoms and difficulties having a second child.

Further information:

Talking Points (Women)

Talking Points (Health Practitioners)

Other resources