‘A Diagnosis Delay of 7 To 10 Years’: Why We’re Still Failing Those Suffering With Endometriosis

‘A Diagnosis Delay of 7 To 10 Years’: Why We’re Still Failing Those Suffering With Endometriosis

A few years back Tara passed out in the middle of a shopping centre. She didn’t know it at the time, but Tara’s bowel and uterus had fused together, so walking around her local shops caused her body so much discomfort that she eventually blacked out. 

What’s perhaps most concerning about the entire experience, however, is that when Tara recounted the experience to me over the phone, she explained that to her, the sensation “wasn’t particularly painful”. 

You see, Tara had been living with endometriosis for some time at this point and as she puts it, has long been in “a constant state of pain”. 

An upcoming period for Tara means exhaustion, two days of bed rest, regular trips to the toilet, headaches, mouth ulcers and incredible pain. This is how it’s been for as long as she can remember, and yet it took an irregular pap smear result at the age of 27 for anyone to consider there may be reason to take a closer look. 

“They did like a dye test, which I think was more about the pap smear,” Tara shared with me. 

“And they could see the endometriosis straightaway, which is quite uncommon. It usually or officially doesn’t get diagnosed until they do a laparoscopy [a surgical procedure used to examine the abdomen – it’s the method used to officially diagnose endometriosis].”

In this case, the condition was visible to the doctors and a biopsy confirmed Tara had stage four endometriosis. 

“I ended up having to have three surgeries in quick succession.” 

Before this point, Tara had never heard of the condition called endometriosis and talk about difficult periods was brushed off as just part of life. 

The fact is, despite the reality that endometriosis impacts one in 10 women, awareness of the condition is incredibly low. 

What is endometriosis?

Let’s start here, shall we?

Often mistaken for “awful periods” or “pain in the uterus”, endometriosis is actually a whole-body chronic condition. QENDO — an organisation focused on endometriosis, adenomyosis, PCOS or pelvic pain — states that this condition causes tissue that is “similar to that which normally lines the uterus” to grow in other parts of the body. 

“With each period, as the lining is shed, this tissue, which is outside the uterus also bleeds. This bleeding causes inflammation and from this; scar tissue, cysts and adhesions are formed,” the website reads. 

The condition can cause organs to fuse together, like in Tara’s case, and it can also cause infertility. 

Symptoms vary from person to person, but abdominal pain is particularly common. There is no known cause or cure. Surgeries are used to remove excess tissue, but it can grow back. 

Jessica Taylor, President of QENDO, explained that despite the number of people who live with endometriosis, the condition has a diagnosis delay of seven to 10 years.

Why is this happening? 

Bridget Hustwaite, author of How to Endo, shared that she has always struggled with a heavy, painful period and by age 15 became aware that her experience was far more extreme than that of her friends. 

However, when she sought out advice from her GP during a regular consultation, they suggested the pill and asked no further questions. 

“No mention of endo,” she said. “[I] didn’t even know that it existed.”

In her adult years, Hustwaite began experiencing pain during sex, intense abdominal cramping and discomfort with bowel movements. It would be 12 years after the initial consultation she had as a 15-year-old before the journalist and author received her stage four diagnosis. 

“I wish I could just lay it down to one reason. But sadly, there are multiple factors contributing to this delay in diagnosis, I think,” she told me over the phone. 

The first is that period pain is not uncommon. 

“We tend to normalise period pain,” Hustwaite explained.

“So when you say, you know, ‘I don’t think something’s right’ or whatever, you’re usually told, ‘Oh, that’s just part of menstruating, just have some painkillers; everyone goes through it.’”

Then there’s the broader question of gender and how we treat women’s health. While Hustwaite avoids “strictly referring it to a women’s health issue,” endometriosis is a condition that mostly affects women and people who currently or previously have had a uterus, which raises the question: would the circumstances be the same if this was predominately impacting men?  

“You kind of look at the sexist notions that have been rooted in the medical system over time, like women’s hysteria… we’re always, you know, falling behind in terms of research,” Hustwaite said.

Gynaecologist and Fertility Specialist Dr Devini Ameratunga agreed that there is a societal problem in how we view period pain. 

“More than brush it off, painful periods are seen as a norm in some societies and the condition may not get the adequate treatment it requires,” she explained to me over email. 

“Just because pain can be associated with periods, this does not mean the women have to suffer from it or let it affect their daily lives, relationships, finances or work.”

Then there are a number of medical elements that also draw out the diagnosis process, Dr Ameratunga shared.

“Endometriosis does not manifest like many other pathologies,” she explained.

In some cases, people may live with endometriosis but experience no symptoms. The reverse can also occur. 

Dr Ameratunga pointed out that in addition to this, the symptoms of endometriosis are shared with a number of other health conditions which, well, complicates things further.

“You have to have a high index of suspicion that someone has endometriosis and trial treatments to see if it improves or refer them to be assessed for surgery. In addition, endometriosis often cannot be seen on imaging. All of these issues contribute to the long time to diagnosis,” she said.  

In short: it’s a perfect storm of obstacles that results in years of suffering. Not only physically, but mentally. 

This is far more than bad cramps 

Tara told me a couple of times that she jokes about her situation pretty regularly. That is because after five surgeries (one of which led to her dying and being revived on the table), a reduced chance at falling pregnant, years of debilitating pain, and the knowledge that her next procedure will likely be a hysterectomy, it’s far easier to laugh than feel the emotional weight of it all. 

And yet, there isn’t much discussion about the mental health impacts of chronic conditions like endometriosis at all. 

Hustwaite explained:

“I kind of didn’t realise that the effects it took on my mental health until just a few years ago… I mean, alongside being dismissed by doctors and being made to feel like it’s all in your head, you inflict a lot of self-blame and guilt. And then you get the diagnosis.”

She shared that the realisation that her condition would likely be a life-long experience lead to a wave of fearful thoughts about having children, managing relationships and maintaining work.

This is part of the reason she created the Instagram account @endogram. 

Endogram is an online community focused on spreading information, and providing a safe space for people with endometriosis to connect on their experiences and share their stories. 

“Not only has it benefited me on a personal level, but I guess the fact that we can open up these conversations and be real about it has helped others take control of their journey and find the strength to talk up and stand up for themselves advocate for themselves,” Hustwaite shared. 

Because while there is a long way to go in terms of landing on a cure, and even in speeding up diagnosis rates, we are doing better in terms of awareness. And early detection is a huge benefit to those living with endometriosis.  

So speak up, back yourself, and if anyone ever questions the severity of your experiences, seek support elsewhere. 

As Hustwaite put it: “your pain is valid, and you’re the expert of your body,” so don’t ever doubt that you deserve to be heard. 

If you’re in need of support, contact QENDO’s 24/7 support line on 1800 ASK QENDO or Lifeline on 13 11 14. 

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