My fucking period

Endo is a goddamn thief that steals precious things from me.

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Carolyn Wadey-Barron is a regular contributor to Ensemble who lives in a hidden valley on the Coromandel Peninsula.

March is Endometriosis Awareness Month, although most sufferers are acutely aware of endo every month, often suffering pain, discomfort and fatigue every day.

For the last 30 years, endo has been a cruel shadow that follows me wherever I go, perpetually waiting for its next chance to wound me. I am Persephone, dragged back down to the underworld just as I feel the sun on my face. The myth of Persephone has always felt like an apt analogy for endo – the scarlet seeds of the pomegranate, the cyclical descent into the underworld and the way with which the chthonic deity merges fertility with death. Each month I am pulled apart and shattered, and only just have time to glue myself back together before the blow comes again.

When I first got my period at age 11, I could not fathom how my life could continue. I would lie in bed weeping, while imagining my ovaries were two rocks grinding together. I would spend days and days in pain, feeling so confused and alone as none of my friends or my sisters were ever cut down the way I was. When my worried mother took me to see our ornery family GP to ask for advice as I was missing a week of school each month due to pain, his face screwed up into a look that was as exasperated as it was irritated: “Painful periods are just something that women must go through,” he said, before writing a prescription for the pill.

By that time I was 12.

Encountering medical misogyny before you’ve even hit your teens means that for the rest of your life whenever you see a doctor, your default thinking is, they won’t believe me. It took moving cities and changing to a new (woman) GP for my symptoms to be believed. Even though my mum was witness to my monthly pain, often so bad I would vomit or pass out or both, her word was not good enough for the family GP either.

My first laparoscopy at age 17 revealed I had Stage 4 endometriosis with ‘chocolate’ cysts on both ovaries and scarring and adhesions all over my uterus, bowel and bladder. (The term ‘chocolate cysts’ is disgusting and should also be eradicated – don’t come for my only comfort!)

Hearing how advanced and widespread the endo had been was momentarily good for my mental health – here was proof that there had been something terribly wrong – but any good feeling passed pretty quickly when there was no change to my pain post-op.

I have now had four endo surgeries in total, as well as hormone therapy (which did nothing except give me a hairy chin at the age of 20). I have tried every diet under the sun and every exercise regime. I’ve been to far flung countries to consult healers, and have tried every supplement recommended. And yes, I’ve tried fucking yoga.

I can’t think for too long about what endo has taken from me because to do so starts to show a corridor of more and more closed doors.

If I didn’t have endo I would likely have children – a first round of IVF was unsuccessful and my husband and I could not afford a second round.

I would likely be wealthier and would have had more success in my career without the constraint of fatigue and days off work. What if I had been fine on those days I had to call in sick, or if I hadn’t had to bolt from so many meetings to be sick or to gobble down painkillers.

Maybe I would have more friends as I would not have had to cancel so many plans. I would have better self-esteem as how can you really like yourself when you despise your body and the things it puts you through.

Adding up all the days and weeks and months that endo has taken from me by throwing me into the underworld of pain becomes staggering mathematics after 34 years of menstruation. Roughly though, I would say that endo has taken away from me a quarter of my life as each month I have one okay week, two not great weeks and one hellish week.

My grief over not having children is so vast and overwhelming and leaves me in a constant state of mourning for a life I can never have. I know this grief will never go away and in fact will only grow. There is that thing that people say about women’s bodies being the most magical thing because they produce life. My body can’t do that. I am so angry with my body all the time and sometimes think that I truly hate it.

In November of 2023, my appendix burst. My nearest hospital is a rural one with no surgical facilities and due to it being frighteningly understaffed, by the time I was finally taken to Waikato Hospital in a speeding ambulance for surgery, I was pretty close to not making it. Surgeons roughly slashed into my stomach to remove the now gangrenous appendix.

Despite doing their best to wash out all the bits of my exploded insides, after recovering from the surgery and being discharged, I quickly ended up back in hospital with an infection. For five weeks I lay in a hospital bed with a drain coming out of my back, like the world’s least cute tail, slowly draining poisonous muck out of my insides and my tummy swathed in bandages from the surgery. I was unable to lie on my back, front or sides so I had to create elaborate pillow structures with cavities for all the parts of me that couldn’t make contact with the bed. I was the star of my own body horror and it was the most frightening and painful thing I have ever been through but, I thought at the time, at least it wasn’t endo for once.

But I was wrong.

Weeks after being successfully discharged, the hospital called with the histology report from my appendix tissue. The doctor delivering the news was astounded to tell me that my appendix had been riddled with, you guessed it, endometriosis. This is apparently a very rare place to get it but I’ve always been something of a medical… whatever the opposite of marvel is.

The scar from the appendectomy is huge and runs from above my belly button down below the pubes line. It is not the usual thin, neat surgical scar but is thick and jagged and my belly button is now mostly hidden under scar tissue. It is the result of a surgeon swiftly cutting through layers of tissue and fat and muscle to slice me open and save my life.

I used to cry every time I saw it, not because it meant my Sports Illustrated swimwear career was over but because it looks so violent, more like the result of a knife attack than from a surgeon’s hand.

I couldn’t touch it for months, and when I finally became brave enough to start putting scar-minimising cream on it, every cream I looked at suggested its use on Caesarean section scars. Now every day when I apply creams or oils to the scar, smoothing them on in vertical strokes, I try not to think how much I wish it was a horizontal C section scar. There are so many things that endo has done to my life that feel unfair, but this mocking scar is the biggest.

Endo is my dark twin, always waiting in the shadows to take things from me. It’s the jumpscare, it’s the scary face behind the dumpster, it’s a goddamn thief that steals precious things from me.

The pain of endo has been likened by doctors to that of a heart attack, so I and one in 10 other women assigned female at birth each month endure the pain of a heart attack over days while having to keep their lives moving.

There is also the little talked about symptom that my best friend and I (a fellow sufferer) call ‘knife ass’ which feels like (you guessed it) being stabbed repeatedly in the ass.

Endo Warriors Aotearoa, at the start of March, posted an image of how endo might look if it was visible. I cried when I saw it because I had never seen a representation of endo that felt so real. The image is blurred out, like all violent images on Instagram, so you have to do the second click through to see it.

If you know anyone with endo, I suggest you take a look to get an idea of how it feels. And if you have endo, you’ll see that others also understand what it feels like to be pulled down into that darkness, every month.