Female reproductive health is a sensitive and important subject. Unfortunately conversations surrounding conditions linked to it are often thought of as taboo, which can lead to a lack of information being shared about women’s experiences.

One such condition is premature ovarian insufficiency (POI), also known as premature menopause. This condition refers to the loss of normal ovarian function when experienced by women under the age of 40.

The majority of women reach menopause around the age of 52 years but for some this can happen much earlier. POI means that the ovaries stop producing eggs, as levels of oestrogen and progesterone hormones change.

A diagnosis of premature ovarian insufficiency can be a particularly emotive subject because of its close ties to infertility. Women who go through early menopause may not have completed their family.

In order to get a detailed insight into POI we spoke to Kate, Co-Chair of The Daisy Network a charity support group for women with POI.

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How common is POI?

Premature menopause is fairly common but awareness of the condition is quite low.

Kate says ‘POI is more common than many people realise. The incidence varies between different countries but the most recent figures suggest that up to 7% of women may experience POI.’

The likelihood of experiencing POI increases with age. Kate goes on to elaborate. ‘Spontaneous POI affects one in every 100 women under the age of 40, one in 1,000 women under 30 and one in 10,000 under 20. However, increasing numbers of women are experiencing iatrogenic POI (POI caused by medical treatments such as cancer therapies or gynaecological surgery).’

The difference between POI and menopause

The main difference between POI and menopause is the age at which the condition occurs. However, it is thought that the younger you are the fewer symptoms you might exhibit.

Kate says Women who develop POI at a particularly young age, for example in their teens or 20s, tend to have fewer symptoms and irregular or no periods may be the only sign.’

If you are diagnosed with POI following surgical intervention or medical treatment, your experience with the condition may be quite different to those diagnosed with spontaneous POI. Kate tells us ‘In women who develop POI following surgery to remove the ovaries, the symptoms tend to be more rapid in onset.’

As POI occurs in young females there is a possibility that they will not have started or completed their family. Although a POI diagnosis does not always mean that natural conception is impossible.

Kate explains. The major difference between POI and menopause is the effect on fertility, as many women will not have completed their family. Although many women with POI are told this means they can’t conceive – this isn’t actually the case. Ovarian function in POI can intermittently return which can result in occasional periods, ovulation and even pregnancy. Data suggests that around five to ten percent of women with POI conceive naturally after the diagnosis.’

There are options for women diagnosed with POI who do wish to add to their family. Kate says. For women who need to have fertility treatment, the low number of oocytes (eggs) remaining means that standard IVF is extremely unlikely to work. IVF with donor eggs is therefore the recommended treatment and has high success rates of around 50% per cycle.’

Recognising POI symptoms

POI symptoms are very similar to menopause symptoms, as both conditions occur when the ovaries don’t produce enough oestrogen.

Kate tells us. ‘The most common symptom of POI is periods becoming irregular or stopping completely. Other symptoms include:

  • difficulty getting pregnant,
  • hot flushes,
  • night sweats,
  • insomnia or poor sleep,
  • palpitations,
  • weight gain,
  • skin and hair changes (such as dryness and thinning),
  • headaches,
  • breast tenderness,
  • mood changes (including depression and anxiety),
  • tiredness,
  • low sex drive,
  • vaginal dryness,
  • pain during sex,
  • poor concentration and
  • joint/muscle pain.’

The common nature of the above symptoms can mean that receiving a diagnosis of POI can take some time.

Many of these symptoms are non-specific and can occur in women who don’t have POI, therefore they are frequently ignored or attributed to other factors such as stress.’ Kate goes on to explain. ‘Even when women do seek help, many doctors don’t think to consider the diagnosis of POI, which can lead to significant delays in the diagnosis being made.’

So, what should women do if they experience symptoms likened to those listed above?

‘It is important that women see their doctor if their periods become irregular or stop for more than 3 months, or sooner if they also have other symptoms of POI.’

Causes of POI

It is not fully understood why POI occurs, various factors may play a part.

‘POI can occur for several reasons. Unfortunately, there is still a lot that we don’t understand about POI and in the majority of women (90%), no underlying cause will be found. This type of POI is usually called spontaneous or idiopathic POI.’ Kate explains.  

Do genetics play a part in POI?

‘The majority of POI is probably due to genetic causes and it is more common in women whose mother or sister had POI or an early menopause. Although some genetic mutations have been found which are associated with POI (such as the Fragile X gene or Turner Syndrome) we haven’t yet identified most of the culprit genes and there is much scientific work going on in this area.’

There are certain factors which might make you more likely to experience menopause at an earlier age. Kate elaborates:

  • ‘Around five percent of women have autoimmune POI. This is commonly associated with other autoimmune disorders such as hypothyroidism (underactive thyroid), diabetes and Addison’s disease.
  • Women who started their periods early (11 years of age or less) have a higher risk of POI.
  • Lifestyle and environmental factors may contribute, particularly smoking. There is currently no evidence that high levels of stress are associated with POI. There have been reports of POI occurring after infections including mumps, tuberculosis and malaria, but this is extremely rare.
  • Surgical removal of the ovaries before the age of 40 results in POI. This is done for gynaecological conditions such as ovarian cancer, ovarian cysts, endometriosis or severe premenstrual syndrome.
  • Chemotherapy and radiotherapy can also result in POI. The chances of this occurring depends on the chemotherapy drugs used, the site of radiotherapy and age at the time of treatment.’

POI Treatment

Hormone replacement therapy (HRT) is regularly prescribed to women experiencing the menopause or premature menopause. The treatment works to stabilise oestrogen, and in some cases progesterone, levels in the body to help reduce the uncomfortable symptoms a lack of such hormones can cause.

So, what does The Daisy Network have to say on HRT?

‘HRT is extremely important to help treat the symptoms of POI but also to protect against the long term effects of low oestrogen such as heart disease, osteoporosis (thinning of the bones leading to risk of fracture) and dementia.’

Kate goes on to say. It is recommended that HRT should be continued until at least the average age of menopause (52 years). Many women stop HRT early because of health concerns but there is no evidence that HRT is associated with any increased risk of breast cancer in POI.’

Self-help measures

Receiving a POI diagnosis does not mean that you have to overhaul your lifestyle. However, there are some relatively small steps you can take to help keep your symptoms in check as much as possible.

Kate tells us. ‘In addition to HRT there are many dietary and lifestyle measures which can help reduce symptoms and reduce the long-term effects of POI.’

Diet

‘Good nutrition is essential for everyone but especially for women with POI. Eating a well balanced diet can help to reduce weight gain and minimise symptoms. A healthy diet is also important in reducing the risk factors associated with heart disease and osteoporosis.’

You should speak to your own doctor before you make any changes to your diet.

Some small diet improvements may, Kate says, include the following steps:

  1. ‘Eat three meals a day
  2. Eat more fruit and vegetables – at least five portions per day
  3. Avoid excess salt – limit in cooking and at the table
  4. Avoid excess caffeine – limit tea, coffee and fizzy drinks
  5. Cut down on fat and sugar
  6. Do not overeat and limit your intake of ‘junk’ or processed foods.
  7. Reduce alcohol to help with hot flushes’

Particular nutrients of importance include calcium and vitamin D. Healthy bones require adequate intake of calcium and Vitamin D.’

Kate advises ‘Good dietary sources of calcium include dairy products, leafy green vegetables and oily fish. Dietary sources of vitamin D include oily fish, margarine and eggs but our main source is from sunshine. Particularly in winter, it is recommended to take a vitamin D supplement of 1000IU daily.’

Lifestyle

The NHS recommends that adults between the age of 19-64 years take part in 150 minutes of moderate aerobic activity each week, alongside at least two days of strength exercise targeting all muscles.

Exercise is especially important for women diagnosed with POI due to the associated risks of osteoporosis and heart disease.

Kate suggests: ‘Regular exercise is very important for bone and heart health. Weight bearing exercises such as walking, running or dancing are best for protecting the bones.’

‘Smoking increases the risk of osteoporosis and heart disease, and can worsen symptoms like hot flushes and sweats.’

Taking action to protect the physical aspects of a POI diagnosis is important but Kate also highlights the importance of mental health too: ‘It can be an extremely difficult diagnosis to receive and so addressing psychological well-being is very important. Rest and relaxation, joining support groups and counselling are all recommended.’

POI and The Daisy Network

Receiving a POI diagnosis can raise many unanswered questions. Facing a new diagnosis can be a particularly difficult time, especially if you’re doing so on your own. The Daisy Network was set up in 1995 to support women with POI.

Kate, can you explain a little of what The Daisy Network offers?

‘The Daisy Network is the only UK charity dedicated to providing support for women with POI and we have members from all over the world. For many women, the diagnosis of POI can feel incredibly isolating and often women are left confused and unsure where to go next. The Daisy Network is a community where women can come together, share their experiences and advice, as well as receive information and support.’

‘The Daisy Network provides our members with information and the latest research findings on various aspects of POI including HRT and other treatment options, fertility implications and how to manage the longer term health implications. In addition to our website which has lots of information about POI, we have an online forum, local support groups, online ask the experts webchats and an annual conference.’

Public awareness and the future

The Daisy Network is continually working to raise public awareness of POI.

Kate explains: ‘Many people have not heard of POI and so much more needs to be done to raise awareness, both amongst women and health professionals. Women need greater access to information about POI and better education at a young age about the symptoms and signs.’

However, due to the nature of the condition, bringing awareness to this sensitive condition can prove difficult. Kate goes on to say. ‘One of our greatest challenges is that menopause is still a taboo subject, particularly when it happens at such young age, and so it doesn’t receive the publicity that it deserves.’ Kate goes on to say. ‘We need to change this and make women feel more confident about speaking out about these issues.’

What more could be done to help raise awareness?

‘At the Daisy Network we also work hard to raise awareness of POI within the medical community. There are now national and international guidelines on how to diagnose and manage POI from the National Institute of Clinical Excellence (NICE) and the European Society of Human Reproduction and Embryology (ESHRE). Hopefully these guidelines will improve the care women receive but much more needs to be done to educate health professionals on managing the condition.’

If any of the issues raised in this article have given you cause for concern, please speak to your doctor. You can also visit The Daisy Network website to find out more about POI.