Premature ovarian insufficiency (POI) is not the same as menopause that occurs at the expected life stage. POI, or premature menopause as it is also known, affects women/those with ovaries before they reach the age of 40. The term POI was coined in 1942 by Fuller Allbright et al1 who first reported that the cessation of menstrual periods in a small percentage of younger women was caused by impaired ovarian function.
While symptoms are often similar, the condition differs from menopause not only because of the age of those affected but also because there is often unpredictable ovarian function associated with the condition.
Possible causes of POI include ovarian surgery, chemotherapy, genetic, chromosomal abnormalities, infection and autoimmune disorders. However, in the majority of cases the cause of POI is often idiopathic or unknown. Currently the prevalence of POI is estimated at around 1-3% of the general population. POI affects around one in 100 women under the age of 40, one in 1,000 women under the age of 30 and one in 10,000 women under the age of 20. Recent research suggests that this number may increase as more women have treatment for conditions such as cancer or endometriosis.
While absent or irregular periods may often be the first symptom experienced, it is important to be aware that some patients may still present with a regular menstrual cycle. Other symptoms of POI can include infertility, vasomotor symptoms, genitourinary syndrome of menopause, joint pain and cognitive symptoms such as mood changes and anxiety. Many factors will influence how and where a person may present in the healthcare setting and often a diagnosis may occur when they are trying to conceive.
How the diagnosis is delivered to the patient is key, as several studies have highlighted that how we tell a patient they have POI can have a significant impact on their psychological adaptation. POI is also often an invisible condition and many patients may have been told they are too young for menopause or may have seen several healthcare professionals before a diagnosis of POI is made.
A diagnosis of POI is based on the presence of possible irregular or absent periods and a full clinical history. It is also important to consider family history as those with a mother, sister or family member with POI are more likely to also have the condition.
Hormone blood tests can also provide more information and diagnosis can include an elevated follicle-stimulating hormone (FSH) blood test of more than 25IU/l. This is usually taken on two occasions – either at the beginning of the menstrual cycle or around four to six weeks apart if the patient is not experiencing regular periods.
Often a diagnosis of POI can be a shock or a life-changing event, and most commonly the diagnosis may be made alongside other investigations such as treatment for infertility. While a natural pregnancy is possible because the ovaries may not completely fail, this is rare and only occurs in around 5% of cases.
POI is a chronic disorder that disrupts the lives and reproductive trajectories of people who are diagnosed with the condition, with the best chance of a pregnancy being via fertility treatment using egg donation.
The emotional impact of POI cannot be underestimated; those with POI often feel isolated, out of step with their friends and peers, and often may experience anxiety and depression. Those with the condition often describe multiple losses, including health, fertility, confidence, youth and vitality.
For many women or individuals with POI, there are a variety of treatment options that can help with symptoms. These include hormone therapies such as the oral contraceptive pill or hormone replacement therapy (HRT), the goal of which is to top up or replace the hormones that are no longer produced by the ovaries. For this patient group, HRT is recommended as gold standard because of the age of the patient. Most POI patients will take hormone therapy until the average age of menopause, which is around 52 years.
It is important to be aware that younger women using HRT may need a different treatment plan or regime than those who have reached menopause at the expected age. This is why a specialist referral or further advice may be needed. For patients who may also experience genitourinary syndrome of menopause or vaginal dryness and reduced libido, medical options such as local vaginal oestrogen or testosterone may also be considered alongside hormone therapy.
While medication can often help with the symptoms of POI, it is important that patients with the condition are also aware of its long-term impact. The early loss of oestrogen may negatively affect bone, cardiovascular and cognitive health. Lifestyle changes such as maintaining a healthy weight, exercising, stopping smoking, reducing alcohol intake and eating a healthy diet can also help to reduce the impact of POI on the patient’s heart, bones and brain.
Many healthcare professionals have only a basic knowledge of menopause and there is a significant knowledge gap when considering more unusual related conditions such as POI. Healthcare professionals may also have a varying knowledge and experience of the prescribing and management of hormone therapy, which can lead to variations in the practice and management of POI. This in turn can have a negative impact on the journey of care for the patient.
Due to the complexities of the condition, the optimal follow-up for women or those with POI must be lifelong, with effective management likely to be a collaborative care model with a variety of members of the multidisciplinary team. Currently in Ireland, this approach is only offered to a small number of people living with the condition. This highlights a need for further awareness, training and support for healthcare professionals, both within the area of women’s health and in other areas of practice.
Part of my role at Dublin City University (DCU) is lecturing on the master’s specialist women’s health pathway for nurses and the soon-to-be-agreed stand-alone women’s health modules. This gives me the privilege of educating nurses in the area of women’s health and I am able to ensure that conditions such as POI and different types of menopause are taught to nurses so that they can help women with POI and make a positive difference in the care they receive.
It is important to signpost patients with POI to further support. The Daisy Network is a charity that provides support for those with POI. The group’s representative in Ireland is Catherine O’Keeffe. Other useful resources for patients include The Complete Guide to POI and Early Menopause by Dr Hannah Short and Dr Mandy Leonhardt, which gives an excellent overview of the condition and treatment options. Another resource is My Life on Pause by Siobhan O’Sullivan, which gives a good account of a patient’s journey and experience of POI. Further support and guidelines for healthcare professionals include the ESHRE guidelines on the management of premature ovarian insufficiency.
Despite significant progress in the area of reproductive endocrinology, our understanding of POI remains limited, and the area is greatly under researched. Conditions like POI present a unique challenge to research and patient care because of the likely smaller number of patients affected compared to menopause at the expected age, which may limit the opportunity for research.
Change is needed in POI research, patient care and support, and a co-ordinated approach to care is also required. My own PhD research with the Centre for Reproductive Research at De Montfort University in the UK will focus on women’s lived experiences of POI. While the research is still in the early stages, it will centre around the patient’s experience of the POI journey.
Without further ongoing research and education for healthcare professionals, we are left advising and treating women and those with POI using menopausal practice and guidelines, which may not be appropriate and are based on a different patient population.
- Allbright F, Smith PH, Frazer R. A syndrome characterised by primary ovarian insufficiency and decreased stature: Report of 11 cases with a digression in hormone control of axillary and pubic hair. Am J Med Sc 1942; 204(1):625-48