Bridget Hustwaite - How to endo a guide to surviving and thriving with endometriosis

Ill be honest: I have NO idea how to start this thing! Which may seem strange for someone who can confidently greet a national audience on live radio every single weeknight. But this is very different.

Much like with writing, there is a structure when it comes to radio presenting. Even though there are a lot of announcers out there who have this wonderful ability to sound quite spontaneous and casual, weve all been trained to follow some kind of formula. For instance, the first talk break of my show is the most important one to nail because it will basically determine whether or not the listener will stay tuned or switch stations. The general flow is this:

Greeting (Hi! Whats up! Welcome!) > Forward Promote (Heres whats coming up/why you need to stay tuned) > Play First Song.

All in all, it takes about 90 seconds. Usually with some audio grabs to keep it colourful but it needs to be straight to the point. Keep it tight and adapt a word economy, as my former boss would call it.

It is the absolute opposite of writing a book, where there is simply no such thing. Instead, you are punching towards tens of thousands of words. Allllll the words. Im freeeeee to say as much as I want!

So, hi! Its nice to meet you and Im so excited that you have picked up this book. You may have done so because:

Youre searching for an endometriosis diagnosis

You have already been diagnosed

You have a loved one with endometriosis and you want to learn more about it

None of the abovemaybe you listen to me on the radio or thought this book looked cool (dont blame you). \_()_/

Whatever the reason, Im glad youre here and I want you to know a few things before you dive in. Like why I have decided to write a book on endometriosis. Well, you could say that experiencing the blows of this chronic illness firsthand has sparked a real fire in my belly. I mean, she was already inflamed but I just dont want others to deal with what I had to. The physical damage, the emotional distress, the constant dismissal. Not to mention all the things I was never told or warned about when it came to navigating life with an incurable disease with no known cause. My journey of personal research and self-advocacy has been long and confusing. I mean, where do you even start? How do you endo?

In a perfect world, this book wouldnt even need to exist because there would be sufficient awareness, research and funding surrounding endometriosis. Youd be taken seriously by doctors and have access to the right treatments. Your loved ones would understand and your relationships would continue to blossom. You would feel supported in your professional life and personal ambitions, whatever they may be.

Alas, this perfect world is not yet ready for us so, in the meantime, let this book be a way to comfort you through the shitty times and to reassure you that what you are feeling is very real. Let it educate you on the things that so many of us were never taught. Hopefully, it saves you some coin as well, because managing endo aint always cheap.

But I hope some of my personal advice, as well as the expertise of others, will help you make informed choices that are friendly to your body and your wallet. Im certainly no medical professional and while I dont have all the answers, I hope this book is enough to get you going on the right path. Think of this book as a set of training wheels while you learn to ride a bike. We might be a bit wobbly sometimes but ideally by the end, youll be ready to pedal off into the sunset on your own. Just remember which side the front brake is on so youre not sent flying over the handlebars, okay?

Nobody likes a spoiler, but it is important that you know that there is no single way to live with this disease. There is no standard fit to surviving and thriving with endo because, just like adulting, we are still figuring it out. Plus, everybodys end goal is different, but that doesnt mean you are alone in this journey. Let this book be a way of us doing it together.

So, you ready?

Lets get into it!

OMG, I think this is my period?!

Ahhh, your first time. Hard to forget, isnt it? Mine was during the first week of Year 7 which made for a timely welcome to high school. I remember power walking (read: smugly strutting) to the toilets with a liner hidden in my dress pocket, giggling as my new friends followed in excitement. I was one of the first in my friendship group to receive a visit from Aunty Flow. I mean, it wasnt a competition, but this new experience made me feel pretty cool (or kewl, cos 2003). Plus, Mum had said she would buy me a new teddy bear when I got it and as an eleven-year-old going on twelve, I still very much loved my plush toys. I didnt think too much into why Mum felt like I needed a new bear, or period bear as she emphasised. I was just pumped to add a new one to the collection sitting cosily on my bed.

The first few cycles were fine, just some light bleeding that only required liners. But soon enough, I came to understand the purpose of Poppy the Pink Period Bear. You see, instead of a gradual increase in flow, duration and general discomfort, my period decided to go from zero to 100. Like, it was a real nek-minute situation. Those first period giggles were quickly replaced with groans, while that smug strut to the toilet became more of a walk of shame. I was popping more painkillers than any normal menstruating teen should require and awkwardly asking Mum to buy me overnight pads because regular just didnt cut it. I found myself wearing multiple pairs of undies to prevent leaking and the only way to wear my school jumper during shark week was tied around my waist. Even if the weather suggested otherwise, I was willing to risk the cold for no red marks. Come summertime, the most commonly asked question youd get from me was never regarding curriculum. It was instead to my friends as we got up at the end of each class: Can you check the back of my dress?

Poppy was a much-needed comfort because my period was just as inconvenient at home. I avoided using the nice, fluffy towels after a shower in case I ruined them with stains. I would sleep on an old towel to prevent the blood from leaking on to my sheets. I even remember blood literally pouring out of my vagina and straight on to the carpet one morning in my bedroom, as Id been too slow in changing my underwear and pad. By the way, there is no such thing as too much information in this book. The sooner we normalise period conversations, the better, because I know Im not the only one who has dealt with this! Anyway, I was horrified by what had happened and scared that I would get in trouble for the stain. I can still hear the concern in my mums voice: You always have bad periods. Up until this point, I thought that maybe everybody dealt with such bullshit cycles and they were just better at hiding it. But my two sisters never had periods like mine, and Mums concern was enough to suggest that we should do something.

I first saw a doctor about my period in Year 10, so I would have been fifteen at the time. Endometriosis was not in my vocabulary and I guess it wasnt in the doctors either. I was prescribed Levlen, a contraceptive pill, and sent on my way. To say I hated taking the Pill would be an understatement. I know birth control works differently for everyone but, for me, the pill triggered weight gain and I still experienced the physical symptoms of my period. It would start with a pulsing headache, which I learned to recognise as my bodys way of saying, Heads up, Aunty Flows coming to visit and she isnt happy. And the cramps, UGH the cramps! I flinch whenever I think of those dull, nauseating throbs that felt like my ovaries were in a punch-on before they were doused in petrol and set on fire.