Endometriosis: The condition in the shadows


Photo by Matt Madd

Endometriosis impacts nearly 10% of Australian females.

Mason Smith, Reporter

If you asked the Australian population what they deem important in life, I’d place a pretty safe bet that physical health would be near the top of the list. But unfortunately, according Endometriosis Australia, the health of over 700,000 women Australia-wide is impacted by this disorder. As March is Endometriosis Awareness Month, there’s no better time to talk about the condition which affects so many, yet is widely unknown.

Endometriosis occurs when tissue, similar to the lining of the uterus (known as the endometrium), grows outside of the uterus. The condition is a ‘multi-factorial’ disease, meaning it comes from a genetic predisposition in association with various environmental factors. While endometriosis may not sound problematic, the disorder can cause severe damage and intense pain for those affected.

The symptoms of endometriosis are typically: period pain (dysmenorrhoea); pain when engaging in sexual intercourse (dyspareunia); pain when urinating (dysuria); and pain with bowel movements (dyschezia).  With these debilitating symptoms and a diagnosis rate greater than cancer, the question is, why is nobody talking about endometriosis?

Endometriosis specialist Dr Geoffrey Reid believes that while the condition impacts so many women, it does not receive much attention as the symptoms are often mistaken for something else or go misdiagnosed.

“The typical journey (to be diagnosed with endometriosis) is that of a woman complaining of period pain, pelvic pain and other gynecological symptoms and not being taken seriously. The average time from the onset of symptoms to definitive diagnosis is eight years,” Reid explained.

Impacting nearly 10% of women Australia-wide, endometriosis does not just cause pain, but also has the potential to make pregnancy difficult, causing infertility and miscarriages in some cases.

“It is estimated that up to 50% of women with endometriosis will experience difficulties with becoming pregnant. Additionally, endometriosis is associated with a higher-than-average miscarriage rate,” Dr Reid explained.

With the potential to cause infertility, it is not surprising that many endometriosis sufferers turn to in vitro fertilisation (IVF) when they begin trying to have children.

“Of all women undergoing IVF, 10% of them have endometriosis recorded as the primary cause of their problem,” Dr Reid revealed.

I have to admit, I was not aware of endometriosis until just recently, when an account I follow on Instagram shared a story about the condition and revealed just how debilitating it can be. The owner of that account, Nerissa Huett, opened my eyes to endometriosis and told me her story, that sure enough, follows a similar narrative to the journey Dr Reid had explained to me.

“I got my first period at nine-years-old, they were always excruciating and traumatic … I was told by a number of GPs that it was part of being a woman.

“I didn’t hear about endometriosis till I was about 15 … When I turned 18, my GP finally put me on the pill to control my pain, bleeding and hormone balance. This worked all the way until I was 19, where I got my period for four-and-a-half months,” Huett explained.

After enduring painful periods and sitting through countless appointments over the past decade, Huett has eventually diagnosed with endometriosis. While her diagnosis has enabled her to reduce and control the pain (through medication), Huett still feels the effects of the condition daily.

“Being chronically fatigued from all the medication is a major pitfall in my everyday routine. Since I am at university every day and work in-between, I’ll be worn out by the end of the day and in a lot of pain,” Huett detailed.

Although Huett has encountered plenty of difficulties in her life, she does not let them get the better of her. She makes a point to undertake all necessary activities to manage her endometriosis as well as possible.

“I go to physiotherapy to help manage the pain in my bowel and bladder. As well as pain therapy at King Edward Memorial Hospital every few weeks to work on cognitive techniques, medicinal and physical solutions to help manage the pain,” Huett said.

Although Endometriosis Awareness Month is coming to a close, the condition itself does not come and go that easily. For all too many women in Australia, their lives are changed drastically by a disorder that is seemingly unknown to those not impacted by it. People, like Huett, hope that their generation is the last to endure the pain of undiagnosed endometriosis and hope to shed light so that future generations do not suffer.

“There is a very prominent misconception that bad periods are part of growing up … but it’s important for young women to understand where to draw the boundary with their pain and seek medical advice if they’re concerned,” Huett said.