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June 29, 2021
Photo by Giulia Giannini McGauran.
In 2018, and after years and years (12, to be exact) of dismissive doctors and misinformation, Bridget Hustwaite finally received a diagnosis for her intensely heavy periods, pulsing headaches and excruciating abdominal pain. The verdict? Stage 4 endometriosis.
Endometriosis (or 'Endo') currently affects 1 in 9 Australians assigned female at birth and a staggering 176 million people worldwide - but it's still somewhat of a mysterious, misunderstood and often misdiagnosed condition. The real kicker? It takes on average 7 - 12 years to diagnose and there is currently no known definitive cure.
So, with no known cure, this Moxette set out to help other endo warriors survive and thrive as best as possible with her new book (and one we didn't realise just how much we needed until we read it!), 'How to Endo'.
We sat down (virtually) with Moxie muse and radio presenter turned Author, Bridget Hustwaite, to talk about life with Endo and how she lives it with tons of Moxie.
MOXIE: Do you remember the exact moment you decided you were going to write your book, ‘How to Endo’? Where were you/what happened?
BRIDGET HUSTWAITE: To be completely honest, I was super fortunate in that I was approached to write this book! I have always entertained the idea, but I didn’t know how to go about it. It wasn’t until one day in February (2020) that I received a DM from Claire Kingston (Allen & Unwin) who was keen to meet up and talk about this concept of a book on endometriosis. She had been following my page @endogram and loved the community I created there.
I, on the other hand, was extremely nervous and lacked confidence but once we started chatting and fleshing out a general structure, I had so many ideas racing through my mind. Shortly after we met up, COVID hit and we weren’t sure where the book pitch would stand in this new climate but thankfully, the pitch was approved for commissioning, and I suddenly had a book deal in my hands!
M: You’re a radio presenter by day (Nights!) on triple J and also manage the hugely popular and informative IG-based community @endogram , which you Founded – how did you balance these/manage your time with writing the book and how long did it take, from idea to finish?
BH: I started drafting last year (2020) in April and the first draft was due in September, the final being around November.. so it was a pretty quick turnaround! It wasn’t easy but the two lockdowns in Melbourne probably helped, as I couldn’t do much else and I didn’t have FOMO as we all had to stay at home! I would wake up early, smash out a few hours of writing, get a little walk in and then start work at triple j.
I also had my second excision surgery which had me off work for a month, so I tried a bit of writing whilst recovering but didn’t achieve heaps in that time as I was in pain/on meds. There’s also so many amazing contributors who helped shape this book, from my fellow endo-warriors to trusted experts in the health and medical world. I’m so thankful for their input.
M: ‘How to Endo’ is a super refreshing read in that whilst it’s packed with advice from various health professionals, it’s actually written from the perspective of an Endo Warrior. Did you always intend it to be this way and why was that important?
BH: Definitely. I’ve read a number of books on endometriosis and whilst they were all great, I couldn’t help but feel a gap in the market for a book that was both practical and empathetic, and from a patient perspective. It can be hard to digest all the information and medical jargon regarding endo, so it was really important for me to break it down and present that content in an easy and friendly way. As if you’re navigating everything with a mate by your side!
M: Endometriosis is quite misunderstood in many ways and is also often misdiagnosed – what do you think are some of the biggest misconceptions about Endometriosis?
BH: Oh, there’s so many misconceptions! I think one of the biggest would be that it’s just painful periods but it’s so much more than that. In fact, not everyone with endometriosis experiences painful periods. From bloating and fatigue to painful bowel movements, there are so many different symptoms that stretch beyond the pelvic region and can also strike at any time.
Another would be the commonly mistaken definition detailing what endometriosis actually is. Endometriosis is tissue similar to the lining of the uterus, but it is not the endometrium! It’s important to know the difference because if it was the endometrium, then it could perhaps be reasonable to suggest something like a hysterectomy as a cure. However, removing the uterus will not remove endo, because it’s not the same tissue.
M: What can we do (as individuals) to help drive more open conversations and support for those of us who are experiencing Endo?
BH: I think a great way to help drive more open conversations is by checking in with specific questions, which I outline in my book. In fact, I have an entire chapter directly addressed to the loved ones of those with endometriosis, including tips on what to say and what to avoid.
Ultimately, I think there just needs to be a greater level of empathy and understanding that endometriosis is chronic. Whilst it may be inconsistent, it is constant in that there is no cure or sudden fix.
M: As an Endo Warrior yourself, what’s your advice to someone who suspects they may have Endometriosis?
BH: Firstly, I would highly suggest tracking your pain so it’s easy to refer to when consulting a GP. I would also recommend utilising the online resources made available by some of our fantastic endometriosis organisations, such as QENDO. In fact, they have a free app that allows you to track your pain and you can actually add your medical professionals to your info. QENDO also have a referral list that can help you locate a nearby specialist.
Of course, I would recommend my book (no shame!) because it really does take you through those steps of obtaining a diagnosis.
My final piece of advice would be to always remember, your pain is valid. Back yourself and keep pushing for answers. It took me 12 years to obtain my diagnosis!
M: Any top tips for endo-flare self-care? What has worked for you?
BH: Heat-relief has been amazing for me! Heat stimulates your sensory receptors to block the transmission of pain signals to the brain, so whether that’s using a heat pack or jumping into a soothing bath, it can be a huge help in easing flares!
M: Here at Moxie, we’re big on feeling your fears, facing them, and just going for it with guts, grit and courage. Did you experience any moments of self-doubt whilst writing ‘How to Endo’ and if so, what did you do to overcome them?
BH: Definitely! I experienced numerous bouts of Imposter Syndrome and feared that the book wouldn’t be good enough. I feared that the endometriosis community would feel the information I presented was nothing new to them, or that I wasn’t the right person to be writing this book but then I thought, if not me then who? It’s important to seize opportunity and just put yourself out there, because you will never know unless you try! I didn’t know how the book would be received and I am so thankful that the response has been so positive.
M: Is there anything interesting you learned about yourself whilst writing your book? (please flex! We’re all about it!)
BH: Not only was it eye-opening to look back on how much I have educated myself since receiving my diagnosis in 2018, but reliving my story made me feel really proud. I mean, it did make me a bit sad too, because it took such a long time to get answers but I’m proud that I persisted throughout that time and knew that what I wasn’t dealing with wasn’t normal.
Plus, I wrote this book whilst working full time, dealing with the emotional stress of two lengthy lockdowns and the physical burden of surgery recovery, so that makes me feel pretty badass!
M: What does having ‘Moxie’ mean to you?
BH: Having ‘Moxie’ to me means being bold and having a bit of sass! Staying true to yourself and never settling for anything less than you deserve.
SHOP Bridget's book, 'How to Endo', now on the Moxie e-store.
Whether you're an endo-warrior or know someone who is (and want to expand your knowledge), this is definitely your go-to guide. Written by someone who has been through the thick of it themselves (though with a ton of tips and strategies from medical professionals), it's incredibly informative, empowering and a wealth of info. 11/10 must read.
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