Rimu Bhooi was around 10 years old when their endometriosis symptoms began.

But they didn’t have the resources to know that the fainting, bloating, and pelvic pain they were experiencing were the beginnings of the disease.

As chronic headaches and painful periods with heavy bleeding joined their list of symptoms, Rimu says it took seven years of asking their GPs for help before getting any kind of answers.

“I was really confused how other people were able to manage their periods when I couldn’t,” the 23-year-old says.

Rimu finally got a gynaecology consult and was put on the waiting list for surgery when they were 20, but their symptoms became worse and began to take over their life.

“I kept getting hospitalised because of how unmanageable the pain was,” they say. 

There were also increasing symptoms like bladder pain, pain with bowel movements, and chronic fatigue. 

Rimu eventually had surgery to find and remove their endometriosis, with an IUD put in as part of the management of the disease, but there were complications from that, too. 

“I kept being hospitalised, about 30 times over two years, so I’ve had a particularly bad experience.”

A common tale

Unfortunately, Rimu’s experience is one that many people face.

Research shows that one in 10 New Zealanders who menstruate have endometriosis, although advocates believe that number could be even higher. 

Endometriosis is when tissue that’s similar to the lining of the uterus grows in other parts of the body, causing pain and other serious issues, including infertility. 

It often starts in teenage years and getting a diagnosis is difficult, according to Jess Sandoval, founder of Endo Warriors Aotearoa (EWA).

“They say it takes an average of eight years from the first day you go to your doctor and say, ‘I'm having all this pain, something's wrong,’ until you actually get taken seriously and see a [gynaecologist] and be diagnosed. There's just not enough knowledge.”

Fighting like hell for a diagnosis

The push to recognise and support those with endometriosis is getting an extra boost this month with HELL partnering up with Endo Warriors Aotearoa to raise $66,666 for the cause.

The pizza chain is selling more than 4,400 specially designed “Undies for Endo” as part of its Fight Like Hell collaboration, with all proceeds going directly to Endo Warriors and helping people with endometriosis. 

The funding is vital because endometriosis is often misdiagnosed, Jess says.

“I was told that I possibly had IBS (irritable bowel syndrome) - that’s quite a common one,” she says.

“Others get told they have things like polycystic ovaries … or they just get told ‘change your diet, lose some weight, you’ll be fine.’”

Some doctors also tell people the pain is just in their heads, Jess says.

“Quite often, people with endometriosis are called drug seekers, because Panadol and ibuprofen just don’t help you, so you need something more, and the doctors are like, ‘Well, you're just addicted, you’re just a drug seeker.’

“I've been called a drug seeker many times over the years.”

Identifying the symptoms of endometriosis

Jess says there’s a big myth that endometriosis just causes a bad period, but the condition is much more than that. 

As well as heavy, painful periods, younger people with endometriosis may also notice other symptoms. 

“They’re also having spotting, and having more pain when they’re not [menstruating], kind of really sharp, sudden pains. Sometimes it can feel like someone’s just got a knife and stabbed you right in your vagina.”

Jess says it’s tricky, because endometriosis can present in different ways for different people.

“Someone that’s diagnosed with stage one endo might have so much more pain than someone that's diagnosed with stage four,” she says.

“[So] it's really hard to say [what the symptoms are], but the general symptoms are nausea, bloating, internal swelling, just pain that you can't manage with your everyday Panadol or Nurofen.”

How to get the help you need?

Rimu says one of the biggest misconceptions about endometriosis is that it’s something that people can just learn to live with.

“[But] that’s not true at all,” they say. 

If you have pain with a period that is preventing you from living your life or making things like school or work really difficult, that's not normal, and you should seek support, you should seek health care treatment.”

If someone suspects they have endometriosis, Rimu says they need to find a way to advocate for themselves.

“For me, that was taking along a support person to my appointments. I made sure that it was someone that medical professionals would be likely to listen to,” they say.

Jess also suggests people start keeping a journal of their symptoms and pain. 

Work out your own pain scale between one and 10 and work out what your pain is on that day and write where you are feeling that pain,” she says. 

The journal can also be used to keep track of how many days of school and work are being missed due to the symptoms. 

Jess says this can help pinpoint any patterns in symptoms and also serve as a document to show doctors. 

“Then I would get a doctor that will listen to you,” she says.

“A lot of people come to me and say their doctors just won't listen, they won't do this, they won't do a referral. Stop wasting your time and just get a new doctor, because you're not going to change their mind.”

Both Jess and Rimu recommend finding online support groups, too, which can also be a source of recommendations for good, supportive doctors in local areas. 

“Make sure that you're armed with the best information,” Rimu says.

“Part of that is learning and speaking to people with endo and reaching out to support workers in organisations like EWA or Insight Endometriosis. There [are] opportunities out there to get the support that you need.” 

This content is sponsored by HELL. You can buy their endo undies, which cost $12 and $15, from fightlikehell.nz.

More stories:

NZ’s first queer kids show: Why these characters need to be centre stage

This local show is making sure queer characters take centre stage as complex, relatable heroes.

Pay secrecy is hurting Pacific and Asian women the most

Māori women can miss out on more than $400K compared to Pākehā men over a 40-year working life.

We built an off-the-grid life but it took a lot of privilege

“I'm trying to do things now that are going to be helpful for our descendants in, like, 200 years."