It’s estimated that 120,000 Kiwis are living with endometriosis. So it’s likely you know at least one person who has it, whether it’s a family member, friend, or colleague.

Less well-known is the day-to-day reality of managing it in a country where it can take some a decade to get an official diagnosis - from the endless appointments to the time and money spent on pain relief, missing out on physical activity and hobbies, and uncertainty around your reproductive future.

Endometriosis is an inflammatory disease where tissue similar to the uterine lining is found outside the womb, with symptoms including painful or heavy periods, fatigue, and bowl or bladder issues.

Hannah Rae, an engineer turned resilience coach from Manapouri, is yet to get a diagnosis at 36, though she’s been experiencing symptoms of endometriosis since she got her first period.

“I remember them being heavy, but for so long, I didn’t know that that wasn’t normal. When I was at university, I have clear memories of [my periods] being really painful, just hunched over in lectures, just trying to get through the day,” she tells the Herald.

Hannah Rae, 36, is an experienced endurance runner. Photo / Francine Boer

“I think probably for some years after that, it was kind of muted from being on the pill – but then when I came off it in my mid-20s, that pain really escalated.

“I didn’t go to the doctor because everyone says that their period is annoying, so I was like, ‘Oh well, the pain and the heaviness is just part of it’ – which seems crazy now.”

For Rae, the wake-up call about her own health came when she hit 30 and “three people really close to me died in a really short space of time”.

While processing her grief, she came to a realisation about her physical symptoms. “I was like, ‘Hold on, this isn’t normal. Actually, I shouldn’t have to put up with this and I don’t have the energy to put up with this’.

“I was like, ‘I cannot do this anymore’.”

Then came an exciting opportunity - Rae, an endurance runner, won an entry to a five-day ultramarathon in Jordan’s Wadi Rum desert.

Running was “something to get me out of the door and out of bed” amid her grief, she shares.

Before she left, she told her GP about her symptoms, which included low energy and low iron. Her doctor said her running was likely to blame - which “was just crazy to me”, Rae says.

“There was no conversation about my lifestyle, my stress factors, how heavy my flow was, what I was eating, and at that time I was just so shocked for a start, but I also didn’t have that educational awareness to push back, to better advocate for what I really needed and to get some more testing.”

Hannah Rae completed a five-day ultramarathon in the Wadi Rum desert in Jordan. Photo / Benedict Tufnell

Over the next few years, Rae saw a private gynaecologist who did not believe she had endometriosis and a women’s health specialist, naturopath and nutritionist who did - and helped treat her symptoms.

Despite paying privately for an ultrasound in March last year, she was pushed back twice in the public system for a laparoscopy, an operation to diagnose endometriosis and remove endometrial tissue.

Finally, she and her partner decided to fork out up to $45,000 to get the surgery, set to take place next month.

“We don’t have heaps of money to spare, but we have been saving up to move to a slightly bigger property. I know there’s privilege in that itself, but you know, when you’re making calls between a long-term future together versus your health, it’s really tricky,” she admits.

“Initially, I was pretty reluctant to go privately because I know that there’s no guarantee, you know, it’s not a long-term fix for endo, it just might alleviate the symptoms for a while, but I’m hoping that with everything else that I’m doing that will prolong that period.”

But compared to what she’s spent on pain relief so far, it might just be worth it in the long term. Rae estimates she spends around $300 or $400 a month on acupuncture, supplements and osteopathy to help manage her symptoms.

Hannah Rae estimates that she spends up to $400 a month on different therapies and pain relief. Photo / Jemma Wells

“And then being dedicated to an anti-inflammatory diet, you know, making those choices is more expensive than having ‘normal person’ food.

“When you’re in that amount of pain, I’d literally do anything – but it’s a huge opportunity cost for both me and my partner. Not that we eat out or go out heaps, but just other things that we value like travel, outdoor trips and adventures – definitely put that on the back burner."

The couple have also had to think about whether children are in their future, as endometriosis can cause infertility.

“I’m pretty much at the end of my tether. My thinking has been, ‘What’s the point in trying if my body’s in this much [pain]?’ I just don’t know if my body could hack what motherhood demands of a woman,” she shares.

And while having children is “something that we still want to be in a position to be doing”, Rae can’t help but wonder whether: “If I had not had this, then we would have had children much earlier.”

Looking back, she wishes that she could have had her concerns heard by a doctor at a much younger age.

“If I had been a teen, if I’d just been in for a normal checkup or for anything else and the GP had asked me, ‘How are your periods?’ And if I felt like I could be honest and open with that doctor, then holy s***, this would have been different.

Hannah Rae hopes that once she's recovered from surgery, she can get back to outdoor adventures and endurance sports. Photo / Jemma Wells

“Same with the doctor I saw when I was 30 – there were no questions about my period, and that’s ridiculous when for a female that’s the number one cause of low iron, so it seems crazy that I wasn’t asked that question."

Rae’s message to other women who think they might have endo is, “If something’s wrong or off or not quite right ... you’ve just got to keep pushing.”

In an ideal world, her symptoms would ease to the point where “I can carry on with my day rather than, I have to go to the ground and take all the painkillers I can get hold of and not see anyone for three days.

“I have so much that I want to do – business-wise, personally, outdoor adventures – and I’d love to get back to racing as well. I just feel like I’ve been hibernating. I’ve had to be kind of removed from society for 25% of my reproductive years.”

Endometriosis NZ CEO: Action plan needed to tackle the condition

In New Zealand, there is a shortage of specialists to treat endometriosis, meaning it can take up to 10 years to get an official diagnosis.

CEO of Endometriosis New Zealand Tanya Cooke says “New Zealand needs to do better”.

“We need to be really aware of the symptoms of endometriosis and the impact that has on an individual,” she tells the Herald.

“As a young woman, not knowing the impact that it may have had on your reproductive system and therefore not knowing if you’re going to be able to have a family because of this in the future - that burden is a lot to get your head around.

“I would like to see New Zealand in general create a better environment for people with this condition which hopefully in the future will promote earlier diagnosis and lead to better management of the condition.

“If your GP is accepting that you may have endo and puts a referral in, depending on where you are in the country, you may not get access to a gynaecologist in the public health system. It’s very much a postcode lottery,” Cooke says.

The organisation is calling for a national action plan to improve access to education, treatment, faster diagnosis and research into the condition.

“In other countries, particularly Australia [they] have action plans in place and that’s what we need to see here in New Zealand. There needs to be a framework to ensure that there’s a bit more support.”

Endometriosis Awareness Month takes place in March each year. This year, the theme is Let’s Talk, with online and in-person events planned around the country.

“We’re encouraging people to be open around this condition,” Cooke says.

“I think we’re heading in the right direction, but I think for us it’s just to continue those conversations where you can make an impact.”

You can find more information about the condition, Endometriosis Awareness Month events, resources, or donate to the organisation here.

Bethany Reitsma is an Auckland-based journalist covering lifestyle and entertainment stories who joined the Herald in 2019. She specialises in telling Kiwis’ real-life stories, money-saving hacks and anything even remotely related to coffee.

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