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

I distinctly remember my worst period moment… its was school holidays and my step brother was playing computed games and I watching my step-cousin play on the PS2. I was lying on my tummy happily watching the goings on (and probably texting whatever boy I was crushing on at the time… who remembers free text weekends?). My Stepsister (about 7) walks in, sees me and points to my bum laughing; “HAHA ELLEN HAS POOPED HER PANTS!”. I turned back, realised I had leaked through completely all over the back of my ¾ jean shorts and partway down my leg. I fled to my bedroom, ripped off the offending clothes, tidied myself up and holed myself up in my wardrobe. I’m not sure I’ve ever been so embarrassed in my life! My Step-Mother told me “It was god's way” of telling me I needed to use heavier pads… being agnostic I didn't believe her for a second, but I also didn't know that passing clots and heavy bleeding were not normal. Its not something they covered in sex ed back in my day.

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

Females have an inbuilt intuition when it comes to our bodies. We know when something isn't correct, however we are constantly told to grin and bear it, stop being a sissy, or that it’s all in our heads. If I had listened to my inner voice as a teenager instead of letting myself be gas-lit, I could have saved myself years of pain.

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

I have been diagnosed with Endometriosis, Adenomyosis, and PCOS. I’ve always known something wasn’t right, but I had GP’s and whanau alike assure me that “period pain is normal”, “you don’t need to make up being sick for attention”, “you’ve had a miscarriage”, or my fave “your pill is clearly too strong, we’ll weaken the dose”. It took a very understanding boyfriend (with 3 sisters and who I am now happily married to) to convince me to self-refer myself to a Gyanaecologist. With a helping hand from the team at Endometriosis NZ, I went in fully prepared and was in surgery within 3 weeks diagnosed stage 3 Endo with deep infiltrating endometriosis, multiple adhesions, and a near-organ-removing-sized chocolate cyst on my right ovary. I nearly lost that ovary, and it took me over a year to recover from the surgery. I always look back on my journey, not with rage, but outrage. Outrage for girls like me, and wanting more than anything to see that narrative improved.

4. What was your diagnosis experience like?

I fought for years, knowing something was wrong. Other teenage girls didn't blow up like balloons and get asked by strangers when their baby was due. Other teenage girls didn't get constipation, debilitating migraines, spotting, and pain down their legs so bad they couldn't walk. Other girls could happily eat without fear of vomiting and living with constant nausea and brain fog. In retrospect it was horrifying. Being gaslit by person after person, doctor after doctor, and finally feeling SO validated it shocked my own family. I’ll never forget my fathers face when the surgeon explained how extensive and complex the surgery ended up being. My [now husband] was cool, calm and collected. He had expected it to be that bad as he had believed me every step of the way. The diagnosis once I was referred to a specialist gynaecologist was technically instant, but the year prior was a 14 year long journey I'd not wish on anyone. 

5. How has your condition changed your daily life?

There is no easy way for me to answer this question. I have the type of endometriosis that grows back, and as expected it's now infiltrated my uterus (Adenomyosis). It lowered my immune system, and that plus Complex Post Traumatic Stress Disorder (CPTSD), meant that when I caught Covid, I caught it badly. I experienced a full-on neurological assault on my body with the outcome being Long-Covid, and Functional Neurological Disorder (FND). This was the final straw for my body, and I was forced to quit full-time work and take a good 8 months off to let my body try and recover. I have slowly built myself up to 4 usable hours a day, but live with chronic pelvic pain daily affecting everything from my physical abilities, to my relationships with people around me. It affects my relationship with my husband and we are constantly working at our marriage to ensure this doesn't get in the way or become a roadblock. Communication is key and our foundation. I’m not always “well” and can come off “flaky” cancelling plans last minute - but all the friends and whanau who matter most to me understand that. They know it can happen, and I know it's ok. It's admittedly taken a lot of therapy and develop advanced communication skills to get to that stage! 

It's also made me infertile. I was infertile at 30, and now at 33 I’m preparing for a hysterectomy. I’ve never, ever had any inclination to wanting children. I worried I didnt have a maternal bone in my body as I never like playing with babies as a child and the thought of being pregnant draws out a visceral physical reaction of disgust. Maybe I watched the Alien franchise movies a few too many times. I surprised myself and debunked this narrative when I got my fur-baby Theo (cat, 11) and with the arrival of a niece and nephews in my life. Even when I was holding them as newborns, I still knew that this was just not something I wanted for myself. I would rather live pain-free than put myself through further pain, especially with post-natal depression running in the family. I fought for years and am so excited that I've been approved for this hysterectomy. No more mirena, no more periods. Maybe perimenopause (they are leaving 1 x ovary in to try and curb this), but I feel like it will be completely life changing for me.

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

There were so many signs I ignored in the beginning or had dismissed as being dramatic. I’ve never had a medically normal period - ever. It's suspected I had endo prior to actually getting my first period… because my “normal” in itself was a medically normal person’s something wrong. During my period my immune system became completely lowered and little things could set it off. Allergies, a small head cold, what I thought may be food poisoning… What started in my teens as headaches became migraines in my adult years. What started off as bad cramps, became feeling like I had a hot iron stuck up my bum, or pain so debilitating I’d be crying as it hurt to walk. What started as minor bloating in my teens, in my late teens became so bad I felt like an actual beached whale. I remember being asked by colleagues if I was pregnant as I would change an entire pant size when I was menstruating. What started as heavy, and I mean HEAVY periods in my teens quickly developed into passing clots in my late teens. I became so self conscious as I was studying musical theatre at University that I would be changing my tampon in between every class as I feared being smelly or bleeding down my ballet tights from my leotard. I was constantly sucking in my tummy which affected my breathwork for dance, singing, and even movement in acting. People just thought I was bitchy, private and stoic. I was actually undiagnosed autistic, and horrifically anxious but hey. In my early 20’s I even passed a clot during sex once.. on my ex’s WHITE SHEETS. He insists he can’t remember it, and his mum just politely dealt with it without saying a word after I scrubbed the sheets as best I could at 2am putting them in a bucket to soak, knowing I had some “period problems”. I always thought I'd had a miscarriage any time I passed a clot.

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

Learning to manage my symptoms has been a wild ride. The most important thing is what works for you as an individual, meaning you kinda have to try everything at least once to discover what's suitable, fits in with your lifestyle and is financially viable. I have quite literally tried everything. Exercise exacerbates my inflammation (and pain), medication works to a point, wheat bags and Tens machines are my bestie for restie’s, and taking back control of my nervous system. Somatic exercises such as meditations are great when you can feel something coming on, but useless if you are in a full on flare up. I sleep a lot - which is a catch 22. It makes me feel at my best, but I also feel like i’m missing out on life a little at times - especially as i’m a night owl. I’ve heard krill oil is a game changer - but my liver isn't great at breaking down oils/absorbing omega vitamins. Pure bovine collagen helped immensely, as well as magnesium, b12 injections, folate, and top ups of Vitamin D in winter. Every few years I get a specialist surgery privately that includes botox injections into my pelvic floor (this stops spasming and helps it relax), nerve block injections to 8 pelvic nerves, and dissemination of some long-lasting anaesthetic into my uterus. During this day-stay surgery they will often swap out or maintain a mirena for me. I don’t have a mirena as a contraceptive, but as an endometriosis treatment… it lasts me 2-3 years where in the average person it's around 4-5 which I think says a lot. I think what has ultimately made the biggest difference to helping me manage things is having a support network around me, including building a medical team that actually communicates with each other, that I know are there, on my side, and that I can call on for when things are bad. If I'm in desperate need of pain medication or think I need a blood test - my GP will prescribe remotely without question and put the order through. If I feel like it’s time for a botox injection to my pelvic floor, my Gynecologist trusts me implicitly that it's the right call for me. If I feel like shit and need to stay in bed all day and be fed chocolate and orange juice through a hole in the blanket or need the comfort of someone gently rubbing my back, my husband is right there - no matter what kind of day he’s had. That man really deserves a medal. 

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

Most medical studies have been completed on men. White men. There is not enough diversity historically in medical research therefore not everything out there takes into account women's or trans health. My advice would be to get yourself at least a GP who stays up to date with the latest education around women's health. Fight for it. Get a specialist to write to your chosen GP about why they need to take you on. It’s worth it.

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

You are right. They are all wrong. You know your body as you are the only one who lives in it.

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

What works for me is creating a feeling of safety. It's almost child-like and primal. Think the feeling of putting on cosy socks, crawling into bed with the curtains drawn, wrapping up tight in a blanket, noise cancelling headphones on, fetal position, having someone hold you. That almost “womb-like” comfort. It's highly underrated and I recommend it thoroughly. It’s excellent at calming your nervous system down from a state of panic and pain (in conjunction with relevant medication ofc) and is my go-to “First-Aid” for when the going gets unbearable. There’s no shame in hiding from the world to look after yourself for an hour or two.