What is Endometriosis? Endo Warriors explain the illness to EN4 News

 

Across the globe, the month of March has come to be known by many as Endometriosis Awareness Month.

Endometriosis is a condition which occurs when the tissue that lines the womb grows outside of where it normally should. This results in pain, ranging from mild to severe, especially during menstrual periods.

It can sometimes be so painful that it causes real disruptions to the sufferer’s day-to-day life.

Worldwide, it is estimated that 1 in 10 women are affected by Endometriosis, and the disorder is also the leading cause of infertility in women.

Despite the number of sufferers being comparable to diabetes, there is still only a fraction of the awareness of the condition and help for those afflicted.

Two people who understand just how Endometriosis can affect your life are Candice McKenzie and Claire Beattie. Candice and Clare, both Endometriosis sufferers themselves, run Endo Warriors, a group based in West Lothian.

Endo Warriors‘ mission is to educate people about the condition and break down the stigma surrounding period pain.

Candice spoke to EN4 News about the difficulties she faced in getting an Endometriosis diagnosis.

“It was a really, really challenging journey. I was diagnosed at the age of 21 after being turned away all those years at the doctors where I was told I had anxiety, I was told I had IBS or some type of chronic bladder problem etc. Eventually, through laparoscopy, I was told that I had ‘deep infiltrating Endometriosis’ and, at that point, I didn’t appreciate how severe that was.”

It can take anywhere from 6 to 10 years on average to diagnose Endometriosis. Candice spoke about how important it is to change people’s perception of Endometriosis and get an early diagnosis.

“The only way to change the perception is through education, giving people the right tools to arm themselves with the correct language so that they can get a diagnosis. If you are living with this condition and it’s undiagnosed, it’s certainly not going to get any better.”

However even with a diagnosis, there is currently no cure, no one knows what causes the condition, and the tissue almost always grows back.

Unfortunately, many women still have their pain written off by medical professionals as simply being a symptom of menstruation. So why is Endometriosis not taken as seriously as other conditions?

“It’s all to do with stigma,” Candice continued. “I think men think there’s an ‘eek’ factor to it. Up until a few years ago we were living in a man’s world. I think now with social media platforms people are becoming more courageous and are now prepared to stand up and say ‘no, this is not okay! I don’t want to live my life like this and you must listen to me!”

A topic which has been frequently debated in parliament in recent months is the treatment of Endometriosis sufferers in the workplace.

“Workplace-wise, it’s always a challenge for women with Endometriosis. Being in the workplace as a woman is a challenge in itself but to have a gynaecological condition like Endometriosis or PCOS can make your work life very difficult.

“You don’t necessarily have constant access to toilets, you might be on a telephone where you are monitored for the amount of time you are on a call or at your desk, you might not have access to sanitary products in that environment.

“So flexible working needs to be considered, endometriosis-friendly employers, access to sanitary bins, it just should be happening.”

And it’s not only your work life that Endometriosis can disrupt, but it can also cause issues in your personal life.

“You start to exclude yourself from certain things because you’re just not well enough to be there. Your friends don’t understand and think you’re being pathetic, so you start to lose friends and it is incredibly sad.”

“It can cause problems in a romantic relationship as well because Endometriosis affects women’s fertility in such a huge way. I think when you’re preprogrammed as a woman, you grow up dreaming about your wedding and having children. But when that plan doesn’t fall into place, it can have a huge strain on a relationship.”

Over the past few years, Endo Warriors have been campaigning to get Endometriosis Awareness Month recognised all over the world through their ‘Light up Yellow’ project.

The campaign focuses on getting buildings to shine yellow lights in honour of the 176 million people living around the world with this invisible, life-changing condition.

“When we see the buildings lit up, we still get incredibly moved by it even though it’s a few years on. We get totally excited, we get goosebumps, we cry, we become emotional because it stands for something and it means a lot to us. We are just two mums from West Lothian who wanted to make a difference.“

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