Natalie's endometriosis pain kept her couchbound for 10 years. There may now finally be a solution.

Natalie Winter didn't have the typical symptoms of endometriosis. 

Instead, she experienced constant nausea, weight loss, bloating, tenderness, and a heart rate that was “kind of all over the place”. 

Then there was the pain. 

Watch: Women with endometriosis on what they wish for. Post continues after video.

After getting her first period at 12, the pain progressed. By the time she was 15, Natalie was regularly taking strong medications to cope. Painkillers that “only just touched it” while she was left unable to move.

“I wasn’t able to get off the couch or walk very much,” she told Mamamia. “I had pelvic pain but also back pain and pain down my thighs.”

It was an “ongoing cycle” without rhyme or reason. The pain could hit a week before her period, or maybe a week after. And because her symptoms were “vague enough” that it could have been other health conditions, neither doctors nor Natalie herself suspected endometriosis, despite a family history. 

“I had all of those things going on and had basically every test that you can possibly have to rule out anything else,” the now-31-year-old said. “It just never crossed my mind that it could be endometriosis. But it was literally the last thing they checked for and that’s how I got diagnosed.” 

While it was a “massive relief” to finally receive a diagnosis at 23, the battle wasn’t over for Natalie. 

Natalie at work with a hot water bottle to help with the discomfort of her endometriosis. Image: Supplied.

“I had my first surgery in 2016 [to remove the endometriosis tissue] but after that, I still had quite a bit of pain,” she said. “So I had a second surgery in 2017. They didn’t find much, but it did kind of help with the pain.”

Since then, Natalie’s had “back-to-back” IUDs inserted to cope with the pain, by essentially eliminating her period altogether. But she admits, it could be a lot worse. 

“I know for some other women who have endometriosis, they are completely debilitated by it,” Natalie said. “They can't stand, they have to be lying down for days on end. Some of them are on disability support pensions because they can't work. They can't do anything.”

A 6.5 year delay in diagnosis 

According to Endometriosis Australia, more than 11 per cent of Australian women and girls suffer from the gynaecological condition whereby tissue – similar to that which grows in the uterus – is found in other parts of the body, and – just like the uterus lining – bleeds each month. 

That’s 830,000 females across the country who can be faced with pain “that takes their breath away”. 

“It can be stabbing pain and it can feel like your insides are being wrung out and ripped apart,” Donna Ciccia, the director of Endometriosis Australia told Mamamia. “Then for some, there is the chronic constant or grinding pain every day.” 

Listen to The Quicky discuss what you need to know about endometriosis. Post continues after podcast.

How each woman is affected varies widely, and there is a huge range of potential symptoms. This may be the reason why it takes, on average, about six and a half years to receive a diagnosis. 

“In women, our pelvis is pretty crowded real estate and there’s a lot going on in there,” Dr Katrina Moss, an expert in reproductive health from the University of Queensland told Mamamia. “So I think it can be difficult for doctors sometimes to pinpoint what the problem is.”

It also doesn’t help that some of the symptoms of endometriosis aren’t even related to a woman’s period. 

“The cardinal symptom of endometriosis is severe period pain, but it can also be pain between periods, bleeding between periods, pain when going to the toilet, or pain during sex,” Dr Moss said. 

“But I think one of the most important reasons to mention is that often women's pain isn't taken seriously.”

And that is something we must fix. 

“Doctors do often minimize or ignore women's reports of pain, but sometimes other people in women's social support network can do that, too,” Dr Moss explains. “And that can actually contribute to the delayed diagnosis as well." 

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“For young women, maybe their mums grew up with the perception that periods are meant to be painful, and that's not actually true. It's reasonable for women to have some discomfort when they've got their period – we're losing a whole layer of our body so it's okay for that to be uncomfortable – but if women are experiencing period pain that gets in the way of them going about their daily lives, that's something that needs action. 

“If the first medical professional they talk to doesn't pay attention to that, women need to keep asking for help until they find someone who listens.”

Using cannabis to manage the pain

There is no cure for endometriosis, and it can’t be prevented. Beyond surgery to remove endometrial tissue, Endometriosis Australia says tools to manage pain include pelvic physiotherapy, hormonal medication, and over-the-counter pain management. 

However, these options don’t work for every woman.

“We know there’s a group of people with endometriosis who live with chronic pain that isn't really responsive to most of the treatments for it,” Antonina Mikocka-Walus, a professor of health psychology at Deakin University, told Mamamia. “For some, hormonal treatments and painkillers are just not sufficient so they visit the emergency department quite often.”

According to a 2022 poll by The Endo Journal on Instagram, 78 per cent of more than 650 women who responded had gone to an ED for help at least once in the previous two years for endometriosis symptoms. Almost one in five had been more than five times in the same time frame.  

Fortunately, Professor Mikocka-Walus – who herself suffers from endometriosis and knows how “helpless” it can feel – is working with a bunch of other scientists at Deakin University on a better, longer-term, solution for the pain. 

And they believe it's medicinal cannabis. 

“There are relatively good studies in different populations with cannabis and chronic pain and that's why we thought it might be a good idea to do it here,” she said. 

“So it's a very, very first study in this area in the sense that we’re not only looking at CBD oil [a chemical in cannabis that doesn’t get you high], but we’re also looking at the dried cannabis flower – which has the THC element [that gives the high] meaning it might be a bit stronger than just CBD oil – and that hasn't really been done before.”

As part of the three month EndoCannED trial, Professor Mikocka-Walus and her team have recruited 63 people living in Victoria who suffer from endometriosis and have visited an ED at least twice in the last six months. 

They’ll be split into three groups with one ingesting CBD oil, the second taking CBD oil as well as inhaling the dried cannabis flower through a vape, and the third will get a placebo CBD oil.

Researchers will then look at whether prescribing medicinal cannabis, instead of opioids, can reduce emergency department presentations among people living with the condition. They’ll also examine whether it can improve pelvic pain, fatigue, and other symptoms of endometriosis, with the full results expected to be delivered by April 2024.

“I think we just need to try to tackle this from any possible angle to offer as much help as possible to [those who have] the disease that has been really neglected for many, many years,” Professor Mikocka-Walus said of the project which is "coming from the heart.”

At the same time as the Victorian trial, Western Sydney University is running its own study into the use of medicinal cannabis for endometriosis. This clinical trial – involving 126 people living in Sydney with endometriosis – will look at whether a CBD isolate or a balanced oil containing both CBD and the THC can reduce pelvic pain and other symptoms of endometriosis. 

“Our trial will also be the first ever to use special ultrasound scans, called sonovaginography, to map and track the size and location of endometriosis lesions over time to see if they change in response to treatment,” Associate Professor Mike Armour, from Western Sydney University, said.

For Donna Ciccia from Endometriosis Australia, she’s already heard about the benefits of using cannabis to help ease the pain of endometriosis. 

“We know from prior research that many patients are self-medicating with cannabis, and they are saying that it helps,” she told Mamamia. 

“We’re looking forward to seeing these trial's outcomes and the potential for a pain management tool for patients.

“This is a positive step forward to hopefully find non-addictive and safe pain management options for patients.”

While Natalie is hopeful of a better solution for her pain.

“Having another option that makes it easier that you can go out and live your life and you're not controlled by your pain or by this disease – that you really can't do anything about – I think that would be really beneficial,” she said.

If anyone with endometriosis is interested in taking part in either trial, please head to www.nicm.edu.au/mcendo 

Image: Supplied + Getty Images.

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