5 things we should know about endometriosis, but don’t

Endometriosis is a disease that, according to the Royal College of Obstetricians & Gynaecologists, impacts between two and 10 women out of every 100. From Alexa Chung to Lena Dunham, Susan Sarandon to Chrissy Teigen, a number of women in the public eye have opened up about its often crippling effects, an honesty no doubt welcomed by the millions of women who suffer. But despite recent efforts to spotlight the condition, lots of people still don’t really know what it is.

During endometriosis awareness month, Vogue spoke to Christopher Barker, an advanced fertility nutritional advisor at The Female Curve, to find out what we should all know about endometriosis, but often don’t.

“It’s a gynaecological disease – and hormonal inflammatory response – where endometrial-like cells appear outside of where they should be, which is in the womb,” says Barker. They can be found anywhere outside of the womb, but are typically found around it – in the pelvis, ovaries and fallopian tubes. “These cells respond in the same way to hormones, like oestrogen, which is why they also bleed when you have your period. Hence the pain that often accompanies it.”

Symptoms vary from woman to woman, but there are some common signs that may suggest endometriosis. “Painful periods or if they change, getting more intense or heavier; experiencing a lot of old or dark blood spotting before your period; pain during or after sex; feeling sick; fatigue; and experiencing diarrhoea, constipation or blood in your urine or stool during your period, are all symptoms,” says Barker. “You can also experience irritable bowel syndrome symptoms and other bowel issues. Infertility is also another key symptom, but it’s usually only when people run into fertility issues that they end up getting a diagnosis.”

“Women are typically at risk from suffering from endometriosis from their first period, through to the menopause, but unfortunately, we don’t know what causes it,” says Barker. “The terrifying thing is how common it is – as a woman, you’re more at risk of having endometriosis than you are of developing something like lung cancer.” Symptoms can ebb and flow, subsiding through certain times and returning at others.

As with many women’s health issues, endometriosis is often confused (by the experts) with other illnesses, such as polycystic ovarian syndrome (PCOS), premenstrual syndrome (PMS) and premenstrual dysphoric disorder (PMDD), as the symptoms are often similar. Proper diagnosis typically takes the form of exploratory surgery, which is invasive and usually only undergone when symptoms are bad enough. “It takes, on average, seven and a half years to get a diagnosis – not least because a lot of these painful pain symptoms are often lumped in under the umbrella of other women’s health issues,” says Barker.

It’s also quite common for women to be suffering from the disease without realising. “A lot of the time, symptoms can be masked with contraception, so people don’t know they have it until they come off it,” says Barker. “Then, they might experience more painful periods and so on, when their cycle is back to its natural state – that’s when endometriosis can show itself.”

It’s a long term chronic condition that isn’t easily treated. Treatments range from painkillers, such as ibuprofen and paracetamol, to hormonal medicines and contraceptives (like the combined pill and Mirena coil), and in extreme cases surgery, such as scar tissue removal and even hysterectomy, where the womb is removed to stop the disease spreading further. “Unfortunately, endometrial cells can spread anywhere in the body – they can even attach to your lungs, heart or brain – so sometimes a hysterectomy can be a good route for some people,” says Barker. “However, that’s not to say that if you do get a hysterectomy, that the endometriosis goes away. It can still reappear.”

Barker expects the future of endometriosis treatment will comprise more hormonal treatment, because “it is oestrogen that makes the cells swell and then bleed, so learning how to better control that should be a gentler route than surgery”.

Meanwhile, since it is an inflammatory disease, potential lifestyle changes that could help include cognitive behavioural therapy (CBT) to better learn about how to deal with the pain and stress of the disease, and adopting an anti-inflammatory diet. “These things may not help if you’ve got endometrial cells absolutely everywhere – there’s no amount of salmon and broccoli that will cure that – but they are lifestyle switches that can improve overall health, and in some cases do make a difference.”