It took me 8 years to get an endometriosis diagnosis

Originally published on 1 News
March 29th, 2023

By Zoe Madden-Smith of Re:News

Content warning: This article features a graphic image of Amy’s stomach after surgery. 

Amy Prescott wakes up one morning in so much pain she can barely walk – she’s had painful periods since she was 12 but this sharp, agonising feeling is different.  

Her stomach is so swollen and firm that when she gets to the hospital, doctors check to see if she is pregnant.

It isn’t long until a doctor comes into the room to tell Amy she isn’t pregnant and her bloods are normal so there’s no need to do any scans. 

“He told me that it was just my period and I should go home and take some Panadol,” Amy says.

“I listened to him even though I knew this amount of pain wasn’t normal.”

One week later, Amy was admitted to hospital again and within an hour of being there, she was being prepped for emergency surgery. 

This time the doctors did do a scan and they found a 7.5cm cyst – about the size of a large orange – strangling her left ovary.

“I was given 20 minutes to consent to surgeons potentially having to remove my left ovary because the cyst was cutting off its circulation,” she says. 

Amy was able to keep her ovaries intact but she says the normalisation of painful periods got in the way of her getting the urgent care she needed.

And as a result, she says her left fallopian tube was permanently damaged from the cyst.

“It makes me furious.”

It took me eight years to be diagnosed with endometriosis

Endometriosis is a painful condition where cells similar to the lining of the uterus grow outside of the uterus. 

Roughly 1 in 10 people with uteruses in New Zealand will have endometriosis. But despite being this common, it takes an average of eight years to be diagnosed with the condition.

Amy Prescott’s stomach post surgery. 

Amy says she has spent roughly $6300 over eight years to get her diagnosis. 

Between 2016 and 2017 she says she saw her GP 35 times because of her unexplained pain. 

She says after five years of experiencing painful symptoms, she was incorrectly diagnosed with Irritable bowel syndrome (IBS) and a gluten intolerance. 

It took another two years, she says, until her GP finally referred her to a gynaecologist – seven years after she first told her GP about her symptoms.

“I nearly lost my job because of how sick I became. I failed university papers and had to drop out of my degree for a year,” she says.

Life after an endometriosis diagnosis

Not much has changed since Amy finally got her diagnosis. 

When she gets flare-ups, her doctor prescribes more codeine for the pain and tries to change her contraception. 

“I’ve now been on eight different contraceptives,” she says. 

“I’ve been on a waitlist to see a pelvic physiotherapist for more than a year. And even though I’ve been in and out of seeing my doctor for the last six weeks because I have had severe flare-ups, I’ve just been told my pelvic ultrasound has been declined by the public health system because my pain doesn’t meet the criteria threshold.”

“There’s just not enough access to help. I don’t even know who to speak to anymore,” Amy says.

The call for a nationwide endometriosis strategy

“I’m pretty confident that if men had to live with endometriosis we would have probably found a cure by now,” Endometriosis New Zealand’s chief executive Tanya Cooke says.

“But painful periods have been normalised for too long.”

Endometriosis New Zealand, an advocacy organisation for people with the condition, is calling on the Government to introduce a national wide action plan for endometriosis.

Despite the fact endometriosis is estimated to affect 120,000 New Zealanders, the health system has long failed those with endometriosis, she says.

“There’s a lack of endometriosis education in primary healthcare, there is limited access to publicly funded ultrasounds, MRIs, and hormonal treatment options, and there is no New Zealand network of tertiary referral centres for complex endometriosis surgery.” 

A national-wide action plan would mean a pool of money would be dedicated to increasing awareness of endometriosis within the health sector, investing in research, and improving clinical care across the country. 

“Endometriosis care, as it currently is, is just not acceptable,” Cooke says. 

“What really horrifies me is that [Amy] went to her GP that many times. Why didn’t they escalate her to a specialist right away? Why did they dismiss her symptoms as ‘normal period pain’ when she had visited her doctor 35 times in one year? That is not normal.”

Cooke says educating primary care workers like GPs is crucial because they are the easiest and most affordable option people can afford – so they need to have the training to be able to spot endometriosis early on and refer people to specialists.

“Endometriosis is not just about having surgery and you are cured,” she says. 

“There is no cure so it’s about taking a multidisciplinary approach to care. So working with a dietician, because we know the bowel can play a key role in endometriosis, working with a physio and a psychologist.”

But waitlists for these services are long and vary significantly depending on where you are in the country, she says.

Cooke calls this “postcode lottery” and says that’s why a nationwide strategy is urgently needed.

“We need consistency across the country so that people are not disadvantaged because of where they live, which happens a lot with rural and smaller communities.”

Australia launched the first National Action Plan in 2018 which pledged to increase awareness and understanding of endometriosis, speed up diagnosis to four years or shorter by 2025 as well as develop better treatment options and ultimately find a cure.

A Manatū Hauora, Ministry of Health spokesperson told Re: News it is “currently developing a Women’s Health Strategy as one of the Pae Ora strategies that set the direction for health system transformation, and Endometriosis New Zealand has provided a submission for consideration as part of strategy development process.”

“We are grateful for all submissions received on the Women’s Health Strategy and are in the process of reviewing submissions to inform strategy development.”

The fight for paid menstrual leave 

In the wake of Spain passing a law to allow people with especially painful periods to take three days of paid “menstrual leave” from work, Amy is calling for New Zealand to do the same here. 

Her petition to the Government says not having menstrual leave “means people choose between getting paid, risking their health, or suffering through illness, disease, discomfort or pain”.

She says the initiative would also provide an opportunity to start a conversation about menstrual and destigmatise periods in the workplace. 

“I’ve used up all of my sick leave for my endometriosis, so now if I am sick, I don’t have anything to fall back on.”

Amy says there are concerns people will take advantage of this leave and use it incorrectly, but she says safeguards could be put in place like needing a doctor’s certificate to prevent this from happening.

“I just want people to realise that we are in no way getting off work scot-free. We are in serious pain and are not fit to work,” she says.

“I would much rather be able to work 100% of my time than be dealing with endometriosis.”

Where to get help:

Endometriosis New Zealand provides information, advice and can help connect you with endometriosis support networks. They also provide free phone sessions with specialised endometriosis advisors that can help you find the right treatment or equip you with the tools you need to get a diagnosis. Freephone 0800 733 277.

Insight Endometriosis also provides education and guidance on endometriosis. Phone (07) 8555 123.

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