1. Let’s start with the classic: What’s your worst, funniest, or most awkward period story?

My first period EVER is something that gives me shivers to this day (12 years later). To set the scene, I was 9 years old and waiting around (begrudgingly) while my mum coached my little sister’s netball practice. I went to the bathroom in a cubicle in a rickety old rural school hall. I discover that I’ve got my first ever period and naturally freak out and go to run and get my mum but the door on that rickety old cubicle in that dusty dingy bathroom… is broken. I’m trapped in the bathroom banging on the door yelling for my mum. I think I was probably only in there for about 10 minutes but as a nine year old terrified about getting my first period, it felt more like 10 hours! Luckily, my mum came to my rescue and with her superhuman mum strength she managed to un-stick the door and sort me out. I think she took me to get an ice cream on the way home from the nearby petrol station to cope with the trauma!

2. What have you demystified about your female body that you wish you knew when you were younger?

I think as with many people who experience issues with their period, it took a while for me to realise that my experience was not normal and I shouldn’t be in as much pain, or bleeding as heavily or as often as I was. Even still, after more than half my life spent dealing with this, I am always learning the less typical ways that endometriosis affects me. It took me a long time to appreciate the whole body-ness of this disease. Pulling the threads of all my symptoms and experiences together is something I think that I will be demystifying for the rest of my life.

3. Have you been diagnosed with a women’s health condition? If so, how did you know something wasn’t right, and what was your journey like to get answers?

I was diagnosed with endometriosis in 2018 when I was 15. Like I said, I got my first period when I was 9, and it was pretty much all guns blazing from the word go. I was taking days off from intermediate school because of my pain and was introduced to super-maxi overnight pads at a very young age.

When I was 15, I remember waking up one morning probably on about day 3 of my period (which, at that point, was typically lasting anywhere from 10-18 days) in more pain than I had ever felt before. It got worse and worse as the day went on until my parents decided that we should go to the hospital. I remember vomiting into a bucket while curled up on the backseat of my dad’s car as my mum blasted Amy Winehouse to try and distract me. We waited for nearly 8 hours only to be sent home and told to come back the next day if nothing changed. Nothing did change, and after waiting another several hours the next day, they admitted me on suspicion of appendicitis. When they got in to have a look (my first laparoscopy of 5 that would come later) they discovered that all signs pointed to endo. I was stitched back together and referred on to Gynaecology, where I would have a second laparoscopy and excision six months later and get my official diagnosis.

4. What was your diagnosis experience like?

I have never ever taken for granted the fact that I was ridiculously lucky to have gotten my diagnosis when I did. While I did suffer with terrible periods and pain from when my period first started, I didn’t experience the horrible delay in care in the same way that a huge majority of women do and for that I am very grateful.

That said, I was so young when it happened and looking back makes me feel so sad for the 15 year old being flippantly told by an older male doctor that this was my life now, there wasn’t really anything to be done about it, and I should “do some googling about fertility and endometriosis.” That is a memory from my diagnostic process that has always stuck with me because sitting there and hearing those words was life-changing for me at the time, and not in a positive way. I didn’t really feel the relief of understanding why I was in so much pain because of the dismissive and uncaring way the answers were communicated to me.

I’ve struggled with feeling guilty about how lucky I was to be able to put a name on my pain comparatively quickly, as well as making room for how horrible and dismissive it felt to be diagnosed in the way that I was. It’s something I have always felt has been difficult to reconcile.

5. How has your condition changed your daily life?

(Has it affected your work, relationships, energy levels, or even how you plan your days?)

I often find myself thinking about how genuinely I would not be the person that I am if I hadn’t spent my teenage years and early 20s navigating all of this. Everything I do is subject to whether there is enough in the proverbial tank to actually do it.

I’m now in my final year of a law degree that I’ve been working towards for nearly five years, an experience that I’m sure has looked different for me because of my experience with endo. I’ve attended lectures via zoom from my bed on a bad pain day with my camera off because I was too sore the night before to wash off my mascara so now I have bedhead, panda eyes from the aforementioned mascara, and my entire lower body covered in hot water bottles and heatpacks to try and help the pain. I’ve taken exams on the types of painkillers that say “be cautious when driving” on the pharmacy label, and studied with a level of brain fog that I can only describe as feeling like my head is full of scribbles.

I live in central Wellington, where famously you can, and most do, walk everywhere. Walking is certainly my preferred mode of transport but over the past few years as my pain got progressively worse, this was less and less feasible as walking for more than 15 or so minutes would often trigger a flareup that would derail my whole day. This just made an already tight student budget in an expensive city all the more tight with added transport costs and a decreased capacity to work part-time alongside my studies.

In terms of my relationships, I had to learn how to be very open with people pretty quickly. When something like endo has such an impact on energy and just capacity to do general normal life things like it has for me, cancelling plans and flaking often comes with the territory. I suppose I find it easier to just establish the context from the get go and it makes me feel less bad when I have to cancel. I am so lucky to have family and friends that are so supportive. I’m a thousand percent sure there have been times that my pain or low mood and energy have made me not super fun to be around, but I really just try to make a massive effort to communicate how I’m feeling to the people around me so I’m not being unfair to anyone.

But to put a positive spin on it, I think that I am very resilient because of these experiences, and I have made a real skill out of advocating for myself. I have gotten pretty good at living a busy life at a limited capacity, which I think is a skill that has and will continue to serve me well.

6. What symptoms made you think something wasn’t right with your body?

My periods were always painful. Pretty much as long as I had them, I remember being doubled over with cramps, nausea, and very heavy bleeding. As I got older, from about 14, the pain started to bleed out (genuinely no pun intended but always welcomed) of line with my cycle. At first it was low level pretty much all the time, sort of like when your ears are ringing when you leave a loud place and it's not pleasant but you can cope. But it only got worse over a year or so before I was diagnosed until I was in pain all the time. It would ebb and flow in intensity but it was always there.

7. Have you tried anything that has helped you manage your symptoms?

I have had 5 laparoscopies and 4 excisions. I felt a little better for a little while after the first three excisions but things always amped back up again. It feels like I’ve tried every single birth control on the pharmacy shelf (pills, IUDs, implants, injections… everything), and I’ve even had botox injections in my pelvic floor. I’ve spent hours of my life tensing and releasing in a pelvic physio office (for the first time ever at age 16, which was a viciously embarrassing experience for a teenage girl). I am nearly 8-months post- the most recent excision where we found out that things had gotten quite crazy in there again and a decent amount of disease was removed. I say this cautiously whenever anyone asks because this ain’t my first rodeo, but I feel better than I have in such a long time.

In my recovery this time around I really prioritised moving around (I’m partial to walking or hiking, and yoga) and eating very nutritious food. I had significant bowel endo symptoms, so I am really careful to eat enough fiber as I find it helps. I am also at the tail-end of a long stint of vegetarianism so protein is important too. Because so much of my life has been spent bleeding so heavily, I also notice that I feel so much better when I stay on top of my iron and b-12 levels. It’s tricky because eating the food that really helps me to feel better often does not come cheap, and I’m a student! But I have really tried to make it a priority because it helps me feel so much better in terms of both pain and energy levels.

I still get some bad pain with my period and a few days before, and then I will go right to the old classics of a scathingly hot water bottle and painkillers, I have different types depending on the level of pain I’m in. When it’s bad, it's best if I don’t move, so I consider curling up with Sex and the City or Gilmore Girls as an important part of my medicine.

8. What’s one thing you wish more people understood about women’s health?

It’s cliche, but cliches are cliches for a reason! Excessive pain is NEVER normal. Excessive anything is never normal, that is what excessive means.

9. If you could tell younger you one thing about your body, what would it be?

Learn quickly to appreciate that this is a whole body condition and don’t let people dismiss symptoms or experiences that are less commonly (but still are!) associated with endometriosis. If you are told that something that is truly affecting your life is normal or unimportant, then ask why. Nobody knows your body better than you. Be the squeaky wheel. Get the oil!

10. When your body feels hard to live in, how do you take care of yourself?

I am actually writing these answers on day two of my period, and today my pain was bad enough to cancel my plans and go to bed at 7pm with my trusted hot water bottle. I was looking forward to my plans a lot so today feels like one of those days where I get fed up when pain derails anything I want to do. I make plans, and my uterus laughs and says I don’t think so. Writing these words down is a good example of how I show myself care on days like this. I started journalling about a year and a half ago when I was in pain all day every day and it was really affecting me and immediately I felt so much lighter. Sometimes I only write a bullet-pointed list of what I did that day, others I write much more. I don’t actually know if it’s the writing that helps or just that it means that I pause and consider how I’m feeling, but I’ve officially become that preachy friend who is going to tell you to get a journal.