Half the population menstruate and yet this natural process, and conditions related to it, have only just started to be discussed openly.

A condition that is gaining more awareness, in part due to some celebrities opening up about their struggles, is endometriosis.

In order to help us shed more light on this common gynaecological condition, we got in touch with the team at Endometriosis UK.

What is endometriosis?

Endometriosis is a condition where the cells that make up the lining of the womb (endometrium) grow in areas other than the uterus. Quite often the cells are found in the fallopian tubes or ovaries, but they can be found in areas not related to the reproductive system.

Symptoms include:

  • Pain during or after sex
  • Pain in the lower abdominal area or back
  • Pain when passing urine or stools (usually during menstruation)
  • Debilitating period pain
  • Difficulty conceiving
  • Nausea, constipation or diarrhoea during menstruation
  • Heavy periods

The endometrial cells react in the same way as those found in the womb. They build up and then break down at the end of a cycle; however, the broken down blood has nowhere to go, often leading to irritation and pain.

It is estimated that 1.5 million women are living with the condition in the UK. The condition can affect all ethnicities and ages and yet it can take several years to receive a diagnosis.

Endometriosis UK told us that: ‘Endometriosis can affect anyone of a childbearing age, yet due to the delayed diagnosis times (the average being 7.5 years), it’s difficult to get an accurate estimate on when the disease develops.’

‘However, many of the people we support report experiencing symptoms sometimes as soon as their first period. Others find the symptoms develop during adolescence, adulthood or when they’re trying to conceive. This could be because they have always been told their symptoms are normal, or they had minimal to no symptoms previously.’

How can endometriosis symptoms impact everyday life?

The physical and mental problems that often come hand-in-hand with endometriosis can have a profound impact on the quality of everyday life.

‘Endometriosis can affect every area of a person’s life.’ Endometriosis UK told us. ‘If symptoms begin young, endometriosis can affect the young person’s education by causing them to miss school or making concentration in class difficult. It could also trigger bullying, social anxiety and isolation if they bleed through their school uniform or experience symptoms in front of other pupils.’

The problems caused by endometriosis can significantly inhibit an adult’s professional life too.

‘Again, due to the ‘hidden’ nature of endometriosis, often managers and colleagues are not aware of the condition, and those with endometriosis can worry about disclosing the condition. This results in a person suffering in silence in the workplace; they may have to take a lot of sick days, have trouble focusing or keeping their energy levels up and they could even have physical challenges that affect their ability to carry out all parts of their roles. Of course, all of these can put a person’s job at risk.’

In addition to the above, the condition can also have an impact on a person’s social life and relationships.

‘Many people experience pain during sex, which can cause difficulties with their partners or if dating.’

‘It can also cause challenges with their family and friends. Because endometriosis is an invisible illness, it can be hard for loved ones to understand why a person cannot do ‘normal’ social activities, or may have to cancel plans.’

The physical and often painful symptoms of endometriosis can be difficult to deal with. This can cause some people to experience mental health problems too.   

As Endometriosis UK explain: ‘Depression and anxiety can arise as a result of living with chronic pain, fatigue and other symptoms, and it can be highly stressful trying to manage a ‘normal’ life with an invisible yet challenging disease.’

Diagnosis barriers

Some health conditions are more easily diagnosed than others. As we have already mentioned, it takes approximately 7.5 years to receive a diagnosis of endometriosis. So, what are the biggest barriers to identifying and getting help for the condition?

‘The three biggest barriers are stigma, lack of awareness and the complexity of symptoms.’ the charity told us.

‘People are taught from a young age to keep quiet about their periods, menstruation is a subject that’s not openly discussed and many adolescent experiences reaffirm this. This results in people not speaking up or seeking help when they have symptoms, because they are too embarrassed to discuss it.’

‘Another barrier is the lack of awareness and even discrimination. Unfortunately, there are still myths both amongst the public and with medical professionals that prevent them from taking someone seriously. These are things like believing all periods are painful, or that getting pregnant will solve the issue and unfortunately, many are thought to be exaggerating their symptoms. We are working with GPs to ensure all practitioners are properly educated on the signs and symptoms of endometriosis, so that no one is turned away.’

So, why might someone with endometriosis be misdiagnosed initially?

‘Endometriosis presents itself in a variation of ways. Symptoms vary from person to person, and often symptoms can be very similar to other common conditions such as IBS. This results in misdiagnosis or a very lengthy series of investigations.’

Why is it important for endometriosis to be included in menstrual wellbeing education in schools?

The female reproductive cycle is vitally important and yet recent research still shows that the education provided in schools on the subject is far from detailed enough.

As Endometriosis UK explained to us: ‘Children are now starting their periods as young as seven, although most start around ages nine to eleven years old and many have not received any menstrual wellbeing education. Plan International UK’s current research shows us that 14% of girls do not know what’s happening when they begin menstruating and 1 in 4 do not know what to do when they start either.’

‘Even at secondary school age, menstrual education is not nearly detailed enough. Our #whatiwishilearned campaign has gained a wealth of feedback from people with PCOS, fibroids, PMDD, endometriosis and adenomyosis. The majority report being taught the risks around sex and how to prevent pregnancy, but not much else – with some having no menstrual education at all.’

Failing to open up the discussion on the subject of menstruation at an early age can potentially cause feelings of shame that prevent people from seeking help.

‘This strengthens the taboo around periods, perpetuating the silence surrounding them and causing many to suffer in silence with symptoms that aren’t normal.’ Endometriosis UK told us. ‘Many go for years without seeking help because they do not know what’s average for a ‘healthy’ period, and what’s a sign that something else could be going on.’

A lack of education and support surrounding menstrual health issues can lead people to try and cope with exceptional circumstances without any help.

Endometriosis UK said: ‘We’ve had stories of women having to change their pads every hour for 14 days of every cycle and only seeking help a decade or so later because they had no idea how often pads should be changed.’

Prompt diagnosis of gynaecological problems could stop women from struggling through extreme symptoms on their own.  

What is a ‘normal’ period?

Different women will have different experiences when it comes to their periods. In general the menstrual cycle lasts for between 21 and 40 days. The period bleed can last for between two and seven days. Most women lose between three and five tablespoons of blood during a period. Some women have highly regular menstrual cycles which are the same length each month, however, some women have irregular cycles where every month is different.

Endometriosis UK explained to us that: ‘These conditions could be diagnosed much earlier in life if we encouraged discussion at an earlier age, and educated everybody on what is average for a ‘healthy’ period.’

‘At a young age, it can be easy to just believe the first person who dismisses your symptoms as ‘normal’ if you haven’t anything to compare your experience against. We want to change this so that people with menstrual related conditions have the confidence, resources and knowledge to seek help sooner, and get the treatment they need, without shame, stigma or silent suffering.’

Reproductive conditions can be treated and managed so that women can continue to live healthy and active lives.  

Breaking the stigma

Recent high profile campaigns combined with celebrities opening up about their own experiences with reproductive conditions, such as endometriosis, can help towards breaking the stigma surrounding the topic.

However, there is still more to be done.

Endometriosis UK said: ‘We believe awareness and education is key to breaking down the stigma around menstruation. Talking about periods in both primary and secondary school without embarrassment will encourage these conversations outside of the school environment.’

‘Public Health England recently discovered that 42% of women experience severe reproductive health problems, but under half seek help, and 59% have lied to their boss due to stigma and embarrassment. The shame people experience at a young age is being carried over into adulthood and is causing real problems in their everyday lives.’

‘We believe menstrual wellbeing education needs to be more than the basic facts; it needs to ensure all pupils understand the signs of menstrual related conditions, so that no one has to experience prejudice or discrimination around their condition. We also believe that pupils should be taught to have confidence and trust in their own bodies, so that they can speak up when they need to about their health and finally, pupils should be given the language, resources and tools to confidently talk about their bodies and menstruation without shame and embarrassment.’

To find out more about the work Endometriosis UK is doing you can visit their website. The charity also has a helpline where you can discuss the condition and get support.

And if you are experiencing any of the symptoms or difficulties raised in this article, help is available from your GP.