It started when Ella was 14.
Bleeding that lasted weeks at a time. Pain that was so disruptive she was forced to miss school for days. Periods so irregular Ella never really knew when they would return.
When she went to see a doctor about it in her small town about 300 kilometres south-east of Adelaide, Ella says she was told it was normal for people her age to have irregular periods.
She left the practice with a script for the pill in hand. It’d be the first in a series of medical appointments to try and fix what was going on inside her body. It didn’t work, but she kept trying.
Over three years, she’s been prescribed different versions of the pill, a contraceptive injection, then an IUD and, eventually, a medication to temporarily shut down her uterus. None had the desired effect.
Meanwhile, Ella’s excruciating, heavy periods have changed the fabric of who she is and what she can do.
She has bled every single day since October 13 last year.
Recently, the now-17-year-old’s pain has felt like someone has stabbed her in the stomach and is slowly pulling out the knife.
She has to meticulously plan when to change over her tampons. But it doesn’t make a difference; she still leaks unexpectedly and has stained more items of her clothing with her own blood than she can remember.
Three years spent waiting for a diagnosis, with at least one more to come
Ella believes the irregular, insufferable bleeding she experiences are symptoms of endometriosis.
Endometriosis — or endo, as it’s frequently called — is a condition where tissue similar to the lining of the uterus (the endometrium) grows outside the womb.
The experience of having endo varies a lot. It can cause a range of symptoms including intense pain during menstruation, infertility and reduced fertility. Others have no symptoms at all.
There’s no cure and no one-size-fits-all treatment.
Around 830,000 people in Australia have been diagnosed with it, Endometriosis Australia says.
There’s only one way to confirm an endo diagnosis; by undergoing a laparoscopy (which is a keyhole surgery) and having a biopsy (in other words, a tissue sample) taken.
Ella’s wanted a laparoscopy for years.
Why can it take so long to get the diagnostic surgery?
There are multiple reasons getting a laparoscopy can take this long.
Sydney gynaecologist Amani Harris, who specialises in endo treatment, says the stigma and taboo associated with some of the most common symptoms of endo, like period pain, are real barriers to people seeking diagnosis and treatment, as is living regionally or rurally.
“Then there’s a myth that younger people don’t get endometriosis, which isn’t true,” Dr Harris continues.
On top of that, she says there’s the fact that endo itself is difficult to diagnose; it requires surgery to confirm, but not everyone with endo requires further surgery to remove it.
“So, often we use medical therapies, not because we don’t think someone’s pain is legitimate, or that they don’t require surgery, but because it’s not a cure,” she says.
Compounding these barriers, Dr Harris says there’s also a reluctance to operate on younger potential endometriosis patients because there’s possibly a higher chance of the endo recurring.
“The earlier you do that [surgery], the more years someone has where they’re exposed to the hormones; where they’re potentially exposed to periods. [That’s why] there’s a potentially higher risk of it coming back,” Dr Harris explains.
“But we don’t want to delay surgery when it’s needed [and] we must not deny young patients access to surgery.
“Surgery has been shown in many studies to significantly improve pain related to endometriosis.
After years of trying different medications that haven’t worked and going through eight-hour round trips to get from her regional town to appointments in Adelaide, Ella says she’s been told she’s now old enough to have the laparoscopy.
The waitlist is 12 months long, so she’ll likely be an adult by the time she goes under the knife.
If Ella’s diagnosed with endo following the laparoscopy, she’ll have managed to do so well before the usual timeframe: it currently takes an average of six and a half years to get an endo confirmation, according to Endometriosis Australia.
This is down from the pre-2013 average of seven to 12 years, Donna Ciccia, Endometriosis Australia’s co-founder and director explains.
Ella stopped going to school and spending time with her friends because of her periods
Ella understands why she’s been made to wait.
“Although I might not agree, I still have to listen to what [the doctors] are saying, which is really hard because I do know my own body and I want to actually be taken seriously,” Ella says, and then pauses.
“But I don’t get that because I am so young.”
And knowing why she’s had to wait hasn’t made the act of waiting, or the trial and error of various medications before a laparoscopy, easier to bear.
When her periods started getting really bad, Ella began isolating herself because of the anxiety that came with not being able to know when or how much she would bleed.
“I wasn’t able to hang out with my friends after school if I was bleeding too much,” she says.
That led to exclusion, which eventually morphed into bullying. Soon, Ella was too scared to go to school, even when she wasn’t bleeding.
Ella’s since moved schools. While the one she attends now is an hour-long drive away compared to the previous five minutes, the new beginning helped her focus on her education again.
But the question of who she would be if she didn’t experience such debilitating periods lingers.
“I’m putting all my energy into just looking after myself and dealing with my period,” Ella explains.
“It takes away from what I’m able to put into my schoolwork and my sport and seeing my friends at school.”
“It is really exhausting, having this illness.”
In the absence of answers, Ella started doubting her own pain
There are times when Ella has questioned whether the pain she experiences regularly is even real — despite knowing, logically speaking, that it is.
Ella was recently diagnosed with depression, anxiety and OCD. She believes her irregular periods and having to repeatedly justify her chronic pain brought on those conditions, as well as being isolated from school and her friends.
“My friends, most people have just kind of brushed it all off and said, ‘Oh, it’s just your period’,” she says.
“A lot of the time, I feel like I’m kind of going crazy. I’ve been doubting my pain a lot and [feeling like] I’m overreacting.”
According to Tamara Cavenett, who is the national president of the Australian Psychological Society and a practising clinical psychologist, one of the hardest things for someone who’s experiencing severe period pain “is that you’re questioning what your symptoms mean”.
Ms Cavenett says not having a label for the constellations of symptoms can be particularly challenging because it can make people question their experiences, instead of having the language to make sense of them.
“You’re doing a lot of questioning, and you can experience a lot of anxiety and depression about not being heard,” she says.
“So you can imagine if you’re going to see people, and you’re not getting a clear diagnosis or a clear answer, it feels like there is no hope, it feels like it might not change, and that can be incredibly demoralising.”
Step one of being your own champion? ‘Remember doctors are there to work for you’
Bridget Hustwaite is a presenter for triple j and the author of How To Endo. It took her 12 years to get a diagnosis.
She says being your own champion is essential: “Remember that [doctors] are there to work for you. You should not walk in there feeling like you have to convince them that you’re not well. You need to back yourself no matter what.”
Hustwaite also suggests taking your time in appointments.
“Don’t feel like you need to rush into making a decision on the spot, or say yes to a treatment you’re not sure about.
“It’s so important to know that you can shop around … if it doesn’t feel right, follow your instincts.”
Because endometriosis is complex and impacts on so many people’s physical and mental wellbeing, Hustwaite stresses medical care must consider both.
“It is really important to look at it from a whole-body perspective, whether that is doing pelvic physio or seeking nutritional advice, even seeking a pain psychologist or regular psychologist to tackle the mental aspect,” she says.
Ms Ciccia agrees: “Surgery is only one part of it. Hormonal medications are only one part of it.”
“We’ve got other things that we do, like pelvic physiotherapy to help relax muscles that have been in spasm for so long.”
Ultimately, Ella says the most important thing for her has been allowing herself to take her own pain seriously.
“This is kind of my life now. It’s really hard, but it’s making me stronger as a person,” she says, resigned.
The ABC’s Heywire competition is open to all regional Australians aged between 16 and 22.
The annual competition provides a platform for the younger generation, in pockets of Australia that rarely see the spotlight, to “tell it like it is”.
This year’s winners were selected from close to 500 entries.
If you are aged between 16 and 22 and would like to find out more about the next ABC Heywire Regional Youth Summit, go to the ABC Heywire website.