One in ten women in the UK suffer from endometriosis, so why do we know so little about it? Historically, the condition has enjoyed very little media coverage, but thanks to a number of vocal celebrities - such as Lena Dunham and Halsey - plus serious hard work by charities to draw attention to it, especially during Endometriosis Awareness Month (every March, FYI), things are changing.
According to research, 10% of women worldwide have endometriosis - a staggering 176 million - and it's the second most common gynaecological condition in the UK, so if you 're suffering from it's symptoms you're definitely among many friends.
As people's understanding of the condition is still alarmingly sub-par, we've spoken to the UK's leading endometriosis charity, Endometriosis UK, to get the full picture and to put a couple of the myths to bed.
What is endometriosis?
The NHS describes endometriosis as a condition where tissue that's similar to the lining of the womb starts to grow in places that it shouldn't - inside the ovaries, for example, or in the fallopian tubes.
Endometriosis UK further explains that these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
It is these bleeding cells which can cause chronic pain. In addition to the physical impact of the condition, Endometriosis UK stresses that this pain can lead to mental health issues too, such as depression. Because of this, many women find that it affects other areas of their life, like their relationships and their careers.
What are the symptoms of endometriosis?
Emma Cox, CEO at Endometriosis UK explains: 'Symptoms can include chronic pelvic pain, painful periods, bowel and bladder problems, painful sex, infertility and fatigue – not all of these will be experienced by everyone and their severity will vary person to person depending on where the endometriosis is growing.
'As the symptoms are quite diverse, a woman may not realise the symptoms are linked and think of them as ‘intermittent,’ not realising they may be cyclical (linked to the hormonal cycle).'
'A woman may put these symptoms down to “just bad period pain” or link fatigue to other lifestyle habits, and often the pain has become so familiarised and normalised by the person suffering that it’s no longer recognised as pain that might not be “normal”.
'There are a range of reasons why women may not recognise or link symptoms, for example, “bad period pain” might be something their mother has experienced – not realising it was endometriosis – and so think that’s ‘normal’, and a doctor may not understand how seriously a woman is suffering.'
How do you get diagnosed?
'Unfortunately, there is currently no simple test for endometriosis,' Cox continues, 'the only way a definitive diagnosis can be made is by a surgeon performing laparoscopic surgery.'
She recommends ruling out other conditions with similar symptoms as the best way to reach a diagnosis:
'The symptoms of endometriosis vary person to person and may overlap with other conditions such as pelvic inflammatory disease, polycystic ovary syndrome, fibroids or IBS. Depending on the symptoms being experienced, these other conditions with less invasive tests such as blood tests or scans are likely to be investigated first to rule them out, before surgery is considered.'
Research by Standard Fashion and Endometriosis UK has highlighted the fact that it takes way, way too long for sufferers in Great Britain to be diagnosed properly.
Cox explains: 'With an average length of time to diagnose endometriosis currently a worrying 7.5 years, we do know that symptoms can be missed.
'For example, a woman may not realise that what they are experiencing isn’t normal and not raise all their symptoms with a doctor, or healthcare practitioners might not recognise the symptoms.'
'We have created a “pain and symptoms” diary (here) that we recommend people fill out before visiting their doctor, to help the doctor better understand the range of symptoms you might be experiencing and also give an indication of how long this pain has been going on for.
'A symptoms diary will really help in enabling people to communicate their symptoms and experience, and also help the doctor in better understanding your situation. Recognise that there is no quick diagnosis for endometriosis and it will generally take more than one visit plus some tests to rule out other conditions.'
What are the treatments for endometriosis?
There is currently no cure for endometriosis, but there are ways to reduce the symptoms and help with the pain it causes.
The NHS says that treatment can be given to, 'relieve pain, slow the growth of endometriosis tissue, improve fertility and stop the condition returning.'
The most appropriate treatment will be decided on a case by case basis and will take into consideration elements such as your age, the severity of the symptoms and whether you want to become pregnant. Treatments should be discussed with your doctor but the NHS says the options available are:
- Hormone treatment
- Pain medication
Can you still get pregnant with endometriosis?
Cox says yes: 'Fertility is, of course, a huge concern for those who want children and are diagnosed with endometriosis. However, even with severe endometriosis, natural conception is still possible.
'There are several fertility treatments options available for women with endometriosis. The suitability of the treatments depends on the severity of the endometriosis, the woman’s age, how long they have been trying to conceive and whether there are other fertility factors. Treatment choice is usually tailored to the individual by their doctor.'
Endometriosis in 2019
While endometriosis still feels to many like an obscure condition, Cox says we're moving in the right direction:
'This year, we’ve already seen the Government committing to ensuring that every child in England will be taught about menstrual wellbeing from 2020, following pressure from Endometriosis UK, and we have launched new education material with the Royal College of GPs to support GPs in identifying the disease.
'Whilst some people are becoming more aware of the symptoms and signs to look out for, there is still very much an issue in people thinking the pain they’re in is ‘normal’ and putting it down to “just bad period pain”, and consequently not seeking the help they need. We still have work to do in ensuring women seek the help they need, as well as GPs recognising this pain too.'