From a young age, we’re told that the day we first get our period is the beginning of our journey into adulthood. But for endometriosis sufferers, what is supposed to be a monumental moment is really the start of a long and arduous health battle.
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Ask any adult who menstruates and they will still be able to tell you where they were when they first got their period. If not for the fact that the sudden appearance of blood is a memorable occurrence, parents will often liken it to the “next chapter” in our lives, making it a “day to remember”.
It was the same for 29-year-old triple j radio presenter Bridget Hustwaite – author of the new book How To Endo: A Guide To Surviving And Thriving With Endometriosis – who was promised a new bear toy once “Aunty Flow” made her first of many visits. But, for Bridget, the soft and cuddly aspects of the big day ended with the plush toy.
You know those moments after recess where you stand up, turn your back to your friends and ask them to discretely check the material for any blood stains? Well for Bridget, and many endometriosis battlers, this “period check” was and is a much more serious undertaking than most realise.
You see, from an early age, Bridget experienced severely heavy periods with excruciating abdominal pains. Once she realised that these symptoms weren’t universal, Bridget sought medical help. After being dismissed by a disinterested GP, the radio announcer finally got the answers she had been looking for: she had endometriosis.
The diagnosis was bittersweet. Facing the reality that she had an incurable disease was devastating for Bridget, but it was better to know what was wrong rather than continue to live in doubt.
Yet fear of speaking up about period pain causes so many young people to live with this uncertainty. Perhaps it is the “periods are a step into adulthood” mentality that instils shame when things don’t go according to plan.
When speaking with Bridget about her diagnosis, she emphasised the importance of acknowledging that, while periods can be an exciting entrance into adulthood, sometimes it’s not as simple as a monthly bleed with a few cramps.
And when things don’t feel right, there should be no shame in speaking up.
“I would like to see young people receive the guidance and acknowledgement that, yes, you are about to get your period, it’s a pretty big change as you head into those older years,” Bridget tells Girlfriend.
“And if something doesn’t feel right, this is what to look out for, this is who you can speak to in order to get some answers because there are some conditions that are associated with period pain that you should be across.”
“That narrative was never exposed to me growing up and I really wish it was,” she adds.
In order to change the narrative, it’s crucial that we educate ourselves on the parts of menstruation that aren’t normal, starting with endometriosis.
So, what is endometriosis?
It turns out that even the internet provides an inaccurate definition of endometriosis.
“You literally google endometriosis and the first definition that comes up is incorrect,” Bridget explains.
Yes Google, give us absolutely nothing!
According to Bridget, and Endometriosis Australia, endometriosis is tissue that’s similar to the lining of the uterus – key word being similar – that grows outside the uterus in other parts of the body.
What are the symptoms?
If you’re experiencing a period for the first time, it’s hard to know the difference between symptoms that are a normal occurrence and those symptoms that indicate an underlying issue.
So what is it that you should be aware of when menstruating?
“When we’re talking strictly about period pain I think things to look out for is if your pain is preventing you from being able to do your day-to-day tasks and it’s making you miss out on school,” the presenter points out.
“Like if you actually can’t get yourself to school because you’re in such uncomfortable pain, that is cause for concern and that’s something that should be investigated.”
Specific symptoms are different for each individual who menstruates. In fact, Bridget explains that not all people with endometriosis actually experience period pain or heavy periods.
“There are many cases where people with endometriosis have fine periods, they’re more affected from bloating or fatigue or painful sex.”
“I personally had pain when emptying my bladder, or passing bowel movements. I started to get abdominal cramps as well when I became sexually active when I was 18.”
How is it diagnosed?
Unfortunately, diagnosing endometriosis is no easy feat. It takes the average person seven to twelve years and it is not as simple as having a blood test or a scan.
The best option when it comes to diagnosing endo is keyhole surgery (laparoscopy), which involves a small incision in the abdomen through which a camera is placed. If certain tissue is found on the outside of the uterus, the surgeon will then try to cut it out.
For Bridget, receiving her endo diagnosis was laborious. Her first GP merely tossed a contraceptive pill at her while assuring the radio announcer that there was no way she had the disorder.
“She looked me right in the eye and said: ‘You don’t have endometriosis, others have it worse than you,’” Bridget says.
But you shouldn’t let this scare you from seeking help. There are plenty of attentive and thorough GPs out there who will listen to your problems and work with you to find the right solutions.
Being consistently shutdown by your GP, and maybe even your own family, can be very frustrating, especially when you know something is not as it should be. Bridget offers some advice on how to cope when you feel like you’re shouting into a void.
“My recommendation would be, first of all keep track of your pain and your symptoms. Whether that’s through writing it down in a journal, or there are some apps that are really great and free for you to download,” she highlights.
She recommends an app called QENDO which allows you to track your period pain, diet, symptoms and speak to medical professionals.
At the end of the day, Bridget says that you know your own body better than anyone and so you have to advocate for yourself.
“You just have to persist. You have to keep fighting for yourself. Because, at the end of the day, no one knows your body like you do. You’re the expert of your own body and your own experiences and your pain is real.”
“We’re made to feel so often that the pain is in our head or that we don’t have the strength to deal with it, but that’s not true and that’s really problematic,” the Endometriosis Australia ambassador reflects.
“So I would seek a second opinion, keep going until you find someone who is going to refer you to a specialist for the appropriate investigation, because no one should be dismissing you in a doctor’s office based on what you have said to them.”
“It’s going to take some hurdles and it is a challenge. But you must persist because you deserve to get the answers for your own body.”
How to cope with endometriosis – both physically and mentally
Receiving an endometriosis diagnosis is physically and mentally painful and exhausting. Bridget has provided some insight into how to cope with the struggles that accompany the disorder.
“We’re talking about a chronic illness. This is a constant thing. It’s not something that’s just going to suddenly go away. You’re going to have to learn how to live your life with this going on. But you can’t let it define your life.”
“Because endo has so many complexities and has a whole body effect, it is important to look at forming a multidisciplinary team. So this is calling a bunch of different specialists who can take care of endo and how it affects you in different ways,” the Ballarat local reveals.
For endo sufferers with pelvic pain, Bridget recommends a pelvic floor physician. For those who experience flare ups after consuming certain foods, she suggests a dietitian. To cope with pain during sex, the author recommends a sexologist.
When it comes to the mental struggles that accompany an endo diagnosis, there are many resources around to assist you.
“Chronic illness is something that has a devastating effect on our wellbeing,” Bridget explains. “And that’s something that isn’t talked about enough. So I would highly recommend seeking a psychologist or a pain psychologist or even consulting support networks that are available on Facebook, QENDO, etc.”
Bridget also emphasises the importance of utilising free resources such as online support networks, as “endo is expensive to deal with.”
In her book, the 29-year-old also offers a, what she describes as, “speed dating with specialists” section where young people can read about each service and make decisions based on their respective needs. This can also be a great way to ease any financial anxieties that can take a toll on your mental health.
Why haven’t so many heard of endometriosis?
Endometriosis is absent from many school curriculums, meaning the only time you may have ever heard of it is outside the classroom. In order for young people to be educated about endometriosis, we need to remove the stigma around periods and introduce nuanced menstruation education into schools.
Even today there remains a mentality of “we need to protect young people from knowing too much before they’re ready”, but the opposing argument is that ignorance breeds fear. Bridget herself is of the firm belief that period education should start as soon as possible.
“The earlier the better,” she puts simply. “We need to be prepared for these things. And we need to be prepared for when it doesn’t go according to plan. I don’t think there’s anything to fear about having a period because it’s going to happen. This is an inevitable part of growing up with these organs.”
Bridget insists that early menstruation education will “help reduce stigma and lead to a greater understanding and acceptance of periods, not only from people who do menstruate but from people who don’t, like cisgender males. They need to understand what’s going on.”
And speaking of inclusive education, in order for societal de-stigmatisation of periods to take place, it is so important that everyone is represented in discussions about periods, particularly as women are not the only ones who menstruate, non-binary and transgender men can also experience periods.
Further to that, Bridget explains how endometriosis is also not confined to women.
“Endometriosis is a whole body disease,” she explains. “It’s been found in every major organ. So it’s not just something confined to our reproductive organs and there have been cases where it has been found in cisgender males. It’s rare but it’s still valid. And I think it’s really important to acknowledge.”
Bridget also emphasises the need to include non-binary and transgender people into discussions about endometriosis.
“It’s important to include non-binary and transgender people within the endo community because their experiences are valid and, also, the more the merrier. These are people who also want to fight for change and raise awareness and we need all the help we can get.”
What to do if you’re scared to talk to a GP
It’s clear that openly discussing periods has been historically taboo.
In fact, it has only been this year that Woolworths changed the signage hanging over their menstrual products to read “period care”. So many other supermarkets still opt for a highly censored label, like “personal items”, as though they are afraid of the word “period”.
And if society at large is too afraid of discussing periods, how on earth are we, as young people, supposed to rack up the nerve to book an appointment and discuss our menstruation concerns with a GP?
Luckily, Bridget has some advice to quell that pre-appointment anxiety.
“It’s such a valid experience, so many people are intimidated.” Bridget says. “There seems to be this kind of power imbalance, we feel like we go into a doctor’s office and we have to convince them to believe us and that should not be the case. That’s really unhealthy and that really needs to change.
“My recommendation would be really prepare yourself for the consultation and do that by reaching out to support groups and other people you’ve seen go through this experience. I would even prepare your questions that you wanted to ask the doctor and write down your symptoms and ask to take notes in the consultation.
“If you need to take someone for support, whether that’s a family or a friend, absolutely do that. You should be in control of the consultation and the medical professional is working for you because is their job to help you.
“Just back yourself, you deserve to get the best outcome.”
Even though getting your first period can be an exciting next step, it is important to be aware that not everyone’s experiences are the same. The sooner we normalise periods and de-normalise period pain, the faster diagnoses and treatment plans for issues like endometriosis can be procured.
Bridget sums it up perfectly when she says, “Period is not a dirty word. Periods are normal. Period pain isn’t normal. And we need to shine a light on both of those things.”
You can find Bridget’s new book here.
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