Endometriosis: Tauranga woman who lived in ‘constant pain’ speaks out about diagnosis

Originally published on NZHerald: 29 Mar, 2024

Tauranga’s Lucy Cooper first knew something was wrong when she experienced “extremely bad” periods in her teenage years.

The 22-year-old couldn’t attend school and would “bleed through everything”.

When she spoke to her friends about her symptoms, nobody could relate.

This marked the start of Cooper’s battle with endometriosis – a condition where tissue similar to the uterus lining is found outside the uterus.

The tissue can form nodules or plaques and cause extreme pain during periods and/or ovulation, tiredness, abnormal menstrual bleeding, infertility and bladder or bowel problems.

Endometriosis affects an estimated 120,000 people in New Zealand, about one in every 10 females.

Living in ‘constant pain’

Cooper told the Bay of Plenty Times she was 13 when she got her first period and symptoms started.

Cooper said her doctor prescribed her birth control pills.

“It does put a Band-Aid over it for a while but then I started to get a constant pain every day.”

After two years of being on the pill and worsening symptoms, she was referred to a gynaecologist, who believed Cooper had endometriosis.

However, surgery was required to diagnose it.

According to Endometriosis NZ, laparoscopic surgery is the only definitive way to diagnose endometriosis. The surgery also aims to remove endometriosis tissue, cysts or adhesions.

Tauranga woman Lucy Cooper has had two laparoscopic surgeries for endometriosis.
Tauranga woman Lucy Cooper has had two laparoscopic surgeries for endometriosis.

The surgery revealed Cooper had endometriosis, and the surgeon removed what they could find.

“I couldn’t believe how I felt after my surgery, I felt so … normal.”

Cooper said symptoms, however, would “slowly come back again” after a couple of months.

On her gynaecologist’s advice, Cooper has a Mirena – a T-shaped plastic frame carrying a contraceptive hormone inserted into the uterus – to alleviate her symptoms.

“Luckily it has just suited my body … I don’t bleed as heavily anymore which is a big part of my pain.”

Surgery the ‘only option’ to treat pain

Cooper said she often got “flare-ups” of “really strong” pain.

“It can get to a point where your pain is too consistent and too strong that the only kind of option is to go in for another surgery and they remove the endo that they can find.”

Lucy Cooper's symptoms of endometriosis started when she was a teenager. Photo / Alex Cairns
Lucy Cooper’s symptoms of endometriosis started when she was a teenager. Photo / Alex Cairns

Cooper, who has had four endometriosis-related surgeries, considered herself “lucky” to have health insurance.

“There are so many people who do have to wait in the public health system that can’t get a diagnosis, let alone get their first surgery.”

‘Horrific’ bleeding and passing out

Hamilton woman Alex Haskell, 27, also had “really bad” periods at high school and was prescribed the contraceptive pill to skip her period.

“I would still have horrific bleeding – like, would pass out, would have to stay at home from school.”

By the time she was 16: “I would pass out so much that I actually would have lack of oxygen to my brain and seizure or fit”.

Haskell had laparoscopic surgery at age 19 and was diagnosed with endometriosis.

At her post-surgery gynaecology appointment, she was told surgeons could not remove all the endometriosis because it was so “deep-rooted” and she would need to learn to live with it.

“It was a big mental shock.”

Alex Haskell has had three surgeries relating to endometriosis.
Alex Haskell has had three surgeries relating to endometriosis.

Her most recent surgery in 2022 revealed she had “severe” endometriosis.

“I had 31 adhesions removed and my ovary had attached to my bowel so they had to remove part of my ovary.”

While the pain was more manageable after surgery, there were days when it was difficult to get up and go to work, she said.

Haskell focused on the “small things” that improved her quality of life, such as doing pilates, walking around the lake with friends and being mentally kind to herself if she was having a bad day.

Bungy jumping for endometriosis

Cooper and Haskell are bungy jumping in Taupō on April 11 to raise money for Endometriosis NZ.

They are doing the organisation’s 120 challenge – representing 120,000 people with endometriosis in NZ – and doing a 47-metre bungy jump three times.

“I am extremely scared of heights. It’s about doing something that scares you because living with endo is scary,” Cooper said.

Haskell, who is head of creative at a digital marketing agency, said she had “quite a senior role for my age”.

“I manage a team of seven, including Lucy, and I want to spread awareness that endometriosis doesn’t have to stop you from doing the things that you want to do.

“A lot of people feel like they can’t have big goals because they’re going to have sick leave with their endo.

“It’s to show young girls that even if you have endo you can f***ing smash it out and talking about it with people in management can be scary, but it also can help get you places.”

Early diagnosis can be ‘life-changing’

Endometriosis NZ chief executive Tanya Cooke said an early diagnosis could be “life-changing” as it meant people could treat and manage the condition.

“For those living with symptoms of endometriosis without the access to care they may need, there may be a significant reduction in their quality of life.”

Cooke said there was a “pressing need” for enhanced research on endometriosis as it was a “very complex and poorly understood condition” in NZ and around the world.

Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.

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