Endometriosis: Kiwi engineer’s diagnosis inspires her to create app to help sufferers

Juliet Oliver used her own experience of endometriosis to create an app to help others living with the condition.

Endometriosis affects an estimated 120,000 Kiwi women — 1 in every 10 — and 176 million worldwide. Symptoms of the disease left award-winning engineer Juliet Oliver with “nothing in the tank”. Years later, she drew on that experience to create an app called Endo45, designed to help those living with the disease take back control of their health. It launched just as Endometriosis Awareness Month begins in New Zealand, and here Oliver shares the story behind it.

Turning 30 is a milestone most of us think of as the prime of life — in our careers, our relationships or our health. But for Taranaki engineer Juliet Oliver, it marked the beginning of a “rollercoaster” of endometriosis symptoms that took her by surprise.

After coming off the pill, she started experiencing pain, bloating, known as endo belly, fatigue and “weird” skin rashes — “the works”.

“I was just a complete zombie — I had nothing in the tank,” Oliver, now 37, tells the NZ Herald.

“During that time my relationship completely broke down and ended, and I had just taken on a massive career break as well.”

She’d just moved into a new upper-management role at Todd Energy, tasked with leading a team to create an innovative operations centre to tackle emissions. The project eventually earned her the Young Energy Professional of the Year award at the 2021 New Zealand Energy Excellence Awards, as well as accolades for her team.

But, behind the scenes, Oliver was at her lowest as she battled the effects of the disease.

“I was trying to block out the loneliness and the pain from having lost my relationship, and my symptoms, and really just trying to keep moving forward,” she recalls.

While working in a male-dominated industry was pretty tough, Oliver now counts herself lucky to have had an understanding boss — who is now the co-founder of the app — and health insurance, which enabled her to get surgery, though the path to diagnosis was far from straightforward.

The first gynaecologist she saw told her she had polycystic ovarian syndrome (PCOS) and to “take the pill and go home”, she recalls.

Oliver wasn’t convinced and didn’t want to go back to birth control. She went to several other gynaecologists, none of whom could figure out a diagnosis. Eventually, her GP referred her to a PCOS specialist at Fertility Associates in Auckland, who took one look at symptoms and blood tests and told her she had endometriosis as well as PCOS.

Endometriosis is a disease that causes the uterine lining, or endometrium, to grow outside the uterus, commonly affecting areas like the fallopian tubes and ovaries. It can cause intense pelvic pain, heavy bleeding and sometimes affects fertility.

Oliver was referred to a surgeon and had an operation a year and a half into experiencing her symptoms that she’s especially grateful for, because most people in New Zealand wait up to eight years for a diagnosis, let alone surgery to remove the endometriosis itself.

Eager to prevent her endometriosis from growing back, Oliver then “lost herself” to research and various approaches to treatment, including naturopathy and lifestyle changes such as diet and exercise. She dropped coffee, alcohol and red meat for a time, tried a plant-based diet, and soon felt the health benefits.

Juliet Oliver's app Endo45 launches this week.

The idea for an app was born after Oliver realised there was no single resource that could offer advice on a non-medical approach to living with endometriosis.

“We do touch on the medical journey in the app and help people to navigate through that,” Oliver explains. “But on top of that, there are all these things that are within your control to help slow the disease, and all the new science and research is there to prove that.

“I asked, where is the boot camp for your endo?”

It was her former boss and now co-founder Justin Post who suggested she should create an app, and nearly seven years later, she’s now working on it fulltime.

Oliver cross-checked her research and took advice from health experts, from holistic practitioners to fertility specialists and gynaecologists, one of whom is coming on as an adviser for the app.

“They resonated with what I was saying I found to work and then reiterated that science does support that,” she says.

It took the help of James Donaldson — now CEO of Ideally — to turn the app idea into reality, as well as feedback from testers and endometriosis sufferers. It works by offering personalised recommendations for each user depending on their stage of the disease and severity of symptoms.

“We try to craft it a little bit so that you go on your own personal journey towards a state of becoming endo fit and achieving a particular goal, whether it’s reduced pain, enhanced fertility, better quality of life, improved mental health,” Oliver explains.

The Endo45 app works by offering users personalised recommendations for lifestyle changes.

“If you really want to understand what’s driving each of these things, what drives your fatigue, what drives your endo belly, what they don’t tell you about your hormones, then these topics are there for you to digest.

“It’s also a habit tracker, so you can set a goal for yourself and then track your way through these different habits. The idea is that you track your symptoms every day, your periods, your cycles, when you’re feeling better than your worst, when you’re at your worst, and proportionally how much time you spend feeling better.”

Endo45 has now launched, coinciding with Endometriosis Awareness Month in March — an annual campaign to raise awareness and funds for those living with the disease — and Oliver hopes it can help sufferers take back control of their lives.

“At one end of the spectrum, that’s for some people putting the endo fully into remission and for others, that’s being able to get out of bed, get to work, get to uni for most of the month, socialise, get back to normalcy, not have to cancel plans and feel like they have more control over their life and their body,” she says.

“While the medical system may be slow, your response to endo doesn’t need to be — there’s so much you can do. And on top of that, when you do go through the medical system and when it is right for you to have surgery, if you choose to have surgery, to make that surgery the best thing for you and last the longest, you need to put your body into a state where it’s healing from endo.”

For Oliver, having her symptoms effectively go into remission has meant “so much”.

“I’ve had my beautiful son. I feel like I have my health. And when you have your health, it’s everything, and nothing holds me back.

“It’s enabled me to do the things I love without burning out.”

Endometriosis in New Zealand

In Aotearoa, most people with endometriosis symptoms wait an average of eight years or longer to get a diagnosis, and up to three years for surgery.

The theme of this year’s Endometriosis Awareness Month in New Zealand is Living Well Together, with Endometriosis New Zealand running several events to raise awareness and funds, from an online auction fundraiser to speakers and the 120 for 120,000 challenge. People can participate in a challenge of their choosing, whether it’s a 120km walk or a 120-hour digital fast, to raise funds.

“Our objective is to foster a supportive and understanding community for those affected by endometriosis,” Endometriosis New Zealand CEO Tanya Cooke says.

“Endometriosis is a complex and often misunderstood condition that can cause a number of debilitating symptoms for many individuals. Our aim is not only to raise awareness of endometriosis, but also to inspire a collective commitment to improving the lives of individuals living with this condition.”

Endometriosis symptoms

Symptoms can include painful or abnormally heavy periods, bowel problems, pain during sex, infertility, fatigue, and lower back pain, and can trigger mental health issues such as anxiety.

An Endometriosis New Zealand spokesperson says there are several misconceptions about the disease.

“One [of those] is that symptoms are always present. Some experiences may be milder, some may be more severe.

“Somebody could have stage one endometriosis and have severe symptoms that significantly impact their quality of life, whereas somebody might have a more severe endometriosis and may not suffer any symptoms.”

Another myth is that getting pregnant can “cure” endometriosis — you can still live with symptoms beyond pregnancy. But perhaps the most common misconception is that extremely painful periods, often a symptom of endometriosis, are normal.

“Discomfort with periods is often normal, but distress is never normal. If a period is interfering with your life, such as going to school, work, or your ability to socialise, then it’s always worth it being investigated by a doctor.”

If someone in your life has endometriosis, it’s important to listen and to validate their experience, the spokesperson adds.

“Acknowledging the condition and acknowledging their experience can help reduce stigma around endometriosis. Sometimes it is a more personal condition to one person versus another person who’s willing to share.”

For more information and resources, go to the Endometriosis New Zealand website 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.