Notebook – Rebekah White

It turned out that I wasn’t making it up

August 29, 2019August 30, 2019 rebekahLeave a comment

A year ago today I had surgery for endometriosis, 15 years after I first saw a doctor to get treatment for it. Surgery erased my pain. I’m furious that other women are being denied it.

If you’re having a hard time with this too, please get in touch with me.

The pain came and went, like hunger or fatigue. Over time, it became worse, lingering at all hours, refusing to budge, whatever I threw at it.

Sometimes, it was a low, persistent ache between my hip bones that brightened and dimmed. Sometimes it was sharper, a hook tugging on each of my internal organs one by one.

Sometimes, when I went for a run or rode my bike, the pain would arrive all of a sudden, as though it was smashing a window to get in, and I’d stop and double over until it eased off, ripples that smoothed into nothing, and then I could keep going.

If I took strong painkillers, I could diminish the pain to the size of a headache, and eventually, the headache almost never went away. Part of my brain was permanently unavailable because it was always thinking about the pain, a gawker at the scene of an accident.

I’ve been telling doctors about this pain since I was 16. These are the things they say to me:

Your pain is normal. Take the pill, it will help. You probably have endometriosis, but we don’t know, and anyway, you’re too young for surgery. Your pain is normal. Take this other pill. You’ve been on the pill for a decade, didn’t you know that’s bad for you? Try painkillers. They don’t work? Try these other painkillers. They don’t work? Take them all at once. How often did you say you were taking them? That will damage your kidneys! Anyway, your pain is normal. Why aren’t you on the pill?

Imagine if eye cells started sprouting on your toes: that’s what endometriosis is, except it involves uterine cells that grow on the rest of your internal organs. No one knows why this happens, and why only these cells do it. Also, the only way to find out if you have endometriosis is to get surgery to remove it.

My boyfriend encourages me to keep trying doctors. Without this, I would have given up. I start doubting the severity of my own problem. I see one GP and then another. I ask to have surgery. I ask again. The GPs are skeptical. They think I’m normal. “No,” says my boyfriend, “you’re not.” I wonder how many other normal women are walking around their life with this level of pain.

Finally, I find a doctor who says, “It sounds like this is really impacting your life,” and she gives me a referral to the public health system.

One of the first things my gynaecological surgeon asks me is if I have a partner.

“No,” I say. Then I add, “We just split up.”

It’s summer, and I moved out a month ago. All my things are in boxes in my parents’ spare room. I feel dizzy all the time, and partly like I’m dreaming, like nothing is quite real, like I’ve strayed into a version of the future that wasn’t supposed to happen.

“We may not find anything,” he says. “A third of women with pain don’t have any visible signs of endometriosis.”

“Oh,” I say.

“Men also have unexplained abdominal pain,” he says.

I don’t know what to say to this. I’m worried he’s going to tell me I can’t have surgery.

“It’s important that you don’t wait too long to have kids,” he says.

“I know,” I say.

He tells my fertility is getting worse by the minute. It’s probably terrible. Almost beyond hope. Endometriosis makes it worse. If I have it, that is. He’s not convinced. But he sees so many women who left it too long. They really struggle, it’s so sad. I wait for him to say that sometimes men wait too long to have kids, but he doesn’t.

Can’t you just treat my physical pain, I think to myself.

I don’t say this to him because I’m paralysed with rage. I go back to work, where I can’t concentrate on anything. My anger is the brittle ice covering a whole lake of sadness, and once I’ve fallen through it I burst into tears in front of my surprised colleagues.

The morning of my surgery, I go for one last run. It’s a clear day for winter, and the bush is so damp that it steams in the sunshine.

“I don’t think we’re going to find anything,” says my gynaecological surgeon.

I am wearing two hospital gowns back to front, I’ve put all my things into a paper bag with a number on it, I’ve just signed some forms my anaesthetist gave me, and my specialist doesn’t think there’s anything wrong with me.

“I’m going to give you something that’ll make you feel like you’ve had a few champagnes,” says the anaesthetist, and I laugh because I haven’t had a drink in months. Too many painkillers.

There’s no drifting, like when you go to sleep. You don’t sense yourself departing. Anaesthesia is a movie cut. I blink and now it’s the scene where they’re wheeling me down the corridor. Everything blurs. I can’t focus my eyes, can’t make out voices.

“Did you find anything?” I mumble.

“Yes,” a voice says. “You had a lot of endometriosis.”

I spend the next 24 hours drifting. This is a public hospital, but they’ve given me a private room. I am the most relaxed I have ever been. No one can expect anything of me! I’m on drugs! I just had surgery! That is a failsafe excuse for not living up to any kind of standard. I can see a square of blue sky through the window. A friend visits me, holds my hand while I doze, and this act of kindness stays in my mind long afterwards.

Nurses are always taking my blood pressure. They comment on the book I brought along with me, Lab Girl.

“What’s it about?” one of the nurses asks me.

“A woman running studies on plants,” I say. “Trying to be taken seriously.”

The nurse rolls her eyes. “Women run everything,” she says. “The husband, the household, the children.” She shakes her head. She doesn’t need a book to tell her the obvious. “Women run everything.”

“It was like someone took a paintbrush and flicked it all around,” says the junior surgeon. She’s about the same age as I am. She tells me I had a membrane in my uterus that split it into two chambers, and she cut it out, because these are linked to higher rates of miscarriage.

“You’ve had quite a lot of surgery,” she says.

She has pictures. I have never seen inside my body before. My internal organs look identical to each other, and all of them look like the underside of my tongue, except for my fallopian tubes, which are white. Scattered across them are flecks of black. It looks like mould.

She tells me that pain is a poor indication of how severe endometriosis is. Someone can have a little pain and terrible lesions all over the place. Someone can have a lot of pain and very little endometriosis. It’s the first time anyone has told me this: up until now I’ve been in a pain competition, struggling to reach the mark whereby mine becomes significant enough for the health system to do something.

“It’ll start growing back in about 18 months,” she says. “But if you take hormonal contraception it slows it down. Are you planning to have kids?”

I still don’t know how to answer this question. Saying yes feels like waving a red cape in front of fate. Saying no feels like childishly slamming a door. Saying ‘I don’t know’ makes me into a woman who has failed to organise the most fundamental part of her life.

In fact, I have organised my entire life around the possibility of having children, something I have never acknowledged to anyone. I chose my profession because I knew I could continue it on reduced hours, and I had good foresight, because most industries have made little progress in enabling this in the decade since I was deciding on a career. But now it feels like I’ve built a house and there’s no one to live in it.

Pregnancy interrupts the growth of endometriosis, my surgeon tells me. But women aren’t getting pregnant in their 20s, and it gives the disease so much more time to grow without being checked.

I have a disease that’s not only part of my body, but drawn from the circumstances of my life, one that depends on the grand lottery of who you meet and who you don’t.

There are four puncture wounds in my belly. When I walk, I shuffle hunched over, like I’m elderly. The nurses encourage me to move around because it makes you heal faster. I think they’re right. I can stand up a little bit straighter every day.

I take their advice seriously. A month after I get home from hospital, I go tramping in the mountains. It’s as though someone has taken my body and exchanged it for a new one.

I write all this down, because I’m worried I’ll forget what it was like to have pain and for people to think I was exaggerating it.

For the first time in longer than I can remember, my body is quiet. Sometimes the stitches in my bellybutton tug against the skin. But most of the time, I can’t feel anything. No ache, just silence.

NB Endometriosis is little studied and not well understood. However, some scientists have researched the attractiveness of women with severe endometriosis compared to women without it. On a more positive note, a scientist at the University of Auckland is now researching diagnostic tests and different treatments for endometriosis.

Six days, 100 kilometres

May 14, 2017 Rebekah

I’d been planning this trip for three years and cancelled it twice—you get marooned if the rivers rise—and when I finally boarded the flight to Queenstown I’d just been given notice to move out of my house. Sitting on the tarmac, I scrolled frantically through Facebook and TradeMe, not knowing where I’d live when I returned.

At Makarora, my phone lost signal. Kate and I crossed a stile and a paddock and set off up the Young River, beside water the same cold blue as the heart of an iceberg. The next day, we crossed the Gillespie Pass in the rain, listening to kārearea calling from within the mist.

On the other side of the pass is a vast meadow where yellow tussock moves gently in the breeze. Tucked into a corner of the valley is Siberia Hut, and the bad weather meant it was nearly empty. Kate and I met a pair of American women, younger than us, who were tramping together but not together; they’d separate during the day so that they could walk alone. I didn’t understand it at the time, but I do now.

The next morning, waterfalls threaded down the valley faces, and we banded together, arms around each others’ waists, to cross the river, still running high with the rain washing down from the ranges. It was the better part of three hours to Crucible Lake, a bright-blue cup of water in the arms of the mountain. We’d been strangers twelve hours ago but now we stripped off and leapt into the water, knocking our breath away.

The next day dawned with low mist and a rose-coloured sky: sunshine. The Americans were going over the pass. Kate and I followed the Siberia valley down to where it met the Wilkin River, and then headed up the Wilkin valley, another rift in the mountains, crossing the braided floodplain of the river under the glare of the sun.

I’ve never hiked for longer than a couple of days. I thought I’d have more thoughts, but the opposite happened: the longer I walked, the less conscious I was, the less I attempted to put what I saw into language. A slow erasure of the brain. By the morning of the sixth day, I was down to pure experience: blue water, indigo shadows of the forest, weight of the sun.

I didn’t have anything to say to Kate, absorbed in the work of uphill, downhill, tree roots, heat, streams, the ache in my feet, the blister on my collarbone.

I return to that week often in my mind. It’s more vivid than any other memory of travelling I have, and I’m not sure if that’s because it was arduous, or because I paid so much attention to the details of the scenery around me, or because I felt so clearly of nothing the whole time. I didn’t care where I’d live when I returned. I couldn’t imagine returning.

The future is Tiritiri

April 20, 2017 Rebekah

When it rains, it’s very quiet on Tiritiri Matangi, except for the white-noise pattering on the canopy. When the shower passes over, there’s a pause in the forest, like a singer taking a breath before her first note, and then it begins: the fluting of korimako, the buzz of a stitchbird, the propeller-like whirr of a kererū flapping heavily through the canopy.

Ahead of me, there’s an unfamiliar chuckling, and a heavy grey shadow on a branch.

I’ve walked hundreds of kilometres through New Zealand’s national parks and visited some of the country’s remotest places, but I’ve never seen a kōkako. There are two right here—a minute’s walk from the wharf, an hour’s ferry ride from the middle of Auckland city—gently murmuring at each other, hopping from tree to tree. The black mask over their eyes makes them look like old-fashioned bank robbers, or guests at a masquerade ball.

I grew up on one side of the Waitematā, and now I live on the other. I’ve spent almost my entire life in Auckland, but this is my first visit to Tiritiri. The island is, according to TripAdvisor, Auckland’s number one tourist attraction.

I’m delighted that it hasn’t been developed by a tourism company, but rather by an army of weekend warriors who have spent the last couple of decades planting hundreds of thousands of trees, transforming the island from empty farmland to a well-stocked bird sanctuary.

Volunteers still do most of the work. The weekend I visit, a group is rebuilding a washed-out trail, and another dozen are tour guides, explaining the ecology and history of the island to small groups of visitors. The tour fee goes towards the island’s upkeep.

Our volunteer guide, Trish, has a demonstration photo book, so that she can show us kororā when the nesting boxes turn out to be empty, kohekohe flowers when the tree turns out not to be in bloom, and a little bag of pohutukawa seeds so that we can see how tiny they are. When my friend asks her about the difference between mānuka and kānuka, she’s thrilled, and whips out a botanical illustration.

Some tourists, she says, book their Tiritiri tour before their flights to New Zealand, and it’s the first thing they do—an early-morning arrival at the airport and they’re on the island by 10.15am. Tiritiri is the first impression we make.

Nowadays we’re used to hearing about the environment in a state of perpetual decline, but Tiritiri is an example of the opposite: we came, we saw, we conquered, we regretted, we restored.

In some places, we’re getting closer to the end of the trajectory than the start. There are so many Archey’s frogs—an IUCN Red List species—in a six-kilometre-square area of Whareorino that researchers have to be careful not to stand on them during monitoring. When urban streams are ‘daylighted’ in Auckland—opened to the air, rather than funnelled through concrete pipes—eels return as the streams’ health improves.

And in those places where restoration and recovery are not within the Department of Conservation’s budget—as Tiritiri wasn’t—they remain within our capability to improve, as Tiritiri was. Someone had to stick the first spade in the ground at Tiri, plant the first plant, release the first bird.