Despite being the second most common gynaecological condition in the UK and affecting around 1 in 10 – or 1.5 million – women, only 20 percent of the general public have ever even heard of endometriosis.
So in aid of Endometriosis Awareness Week running 7 – 13 March, we had a chat with Miss Great Britain Zara Holland who recently revealed she suffers from it. Here’s 6 things you should really know about the condition.
1. It’s caused by tissue that belongs inside the womb, being found outside the womb
Each month the cells react in the same way as those in the womb – building up, then breaking down and bleeding.
But, unlike the ones in the womb that leave the body as a period, this blood has no way of getting out.
2. The symptoms can range from heavy periods to depression
The classic symptoms of the condition include painful, heavy or irregular periods, and painful bowel movements.
Such can lead to chronic pain all over the body – most commonly in the pelvis, back, legs, when passing urine and when opening the bowel.
It can put a real mental strain on sufferers too, who can feel extremely tired, completely lacking in energy and even depressed – which Zara admitted she felt at times.
3. The pain can be so debilitating that some women must take time off work
No-one with a regular period can honestly say they enjoy it, but they just get on with it. The situation is completely different for someone with endometriosis.
Zara was forced to take a break from everything when her period came round.
“I had to have a week off work every single month, maybe longer. I couldn’t eat, I couldn’t go out, my skin was bad, I put on weight. It was terrible,” she said.
Lena Dunham, writer of the TV series Girls, also shared with fans on social media that she was taking time off to rest because of her endometriosis.
Lena was rushed to hospital only last week to undergo surgery because of a ruptured ovarian cyst caused by her condition – though she’s now let fans know she’s back home and doing okay.
4. Currently, there is no cure
But there are different treatments available to sufferers to try to improve their quality of life.
Zara was given laser treatment to burn away the extra tissue when she was diagnosed with endometriosis in 2013 and was fitted with a mirena coil to try to balance out her hormones.
“Although there were side effects, it was amazing … until November last year,” she said.
The coil had become embedded, because of the endometriosis, which meant she had to undergo surgery in January this year to get it out. She said she’s now doing okay but, of course, there is always the risk things will get worse again.
5. It can affect your sex life – and your fertility
For some endometriosis sufferers, sex can be painful. It affects everyone differently, but many women experience pain during or after they’ve had sex, affecting their ability to enjoy healthy sexual relationships.
Zara said: “When you’re in a relationship and you can’t have sex, guys are like ‘what’s wrong with you?’” She believes that although it is a condition affecting women, men should know more about it and understand it too, ideally from a school age.
While endometriosis does not necessarily cause infertility, there is an association between the two. The more serious the endometriosis, the more common it is for scar tissue to form – which decreases the chances of a natural conception.
Zara revealed her doctor estimated she has until she is 28 to get pregnant which, to a 21-year-old, can seem scarily close.
“7 years isn’t that long and it does freak me out,” she admitted.
6. It takes 7.5 years on average to get a diagnosis in the UK
Misdiagnosis is common, since the symptoms of endometriosis overlap with many other conditions including IBS (bloating, cramping etc).
It is also often dismissed by GPs as just “a bad period”, as was the case with Zara. She said: “When I was 16, I went to the doctor and they kept putting me on different contraceptive pills but nothing worked.”
It was her mum who insisted she was referred to a gynaecologist who then confirmed she had endometriosis. So Zara’s advice is be persistent – visit forums and websites, go and talk to GPs about how you’re feeling – or you can even talk to her: “I’ve had about 500 messages from young girls [since announcing she suffered from endometriosis] which is really good because it’s getting the awareness out there.”
For more information, visit the Endometriosis UK website.