Endometriosis Awareness Month: Northland woman tells her endometriosis story to raise awareness

Originally published by NZ Herald
March 29th, 2023

By Jaime Lyth

Endometriosis is a condition endured by up to one in nine women and girls and is suspected to contribute to issues such as truancy, infertility, career inequality, whānau relationships and mental illness. Advocate reporter Jaime Lyth talks to a Far North woman about her decades-long endometriosis journey.

Ashton-Lee Phillips has been experiencing painful periods since she was around 10 years old.

The 30-year-old is still in pain from her endometriosis symptoms and has been off work since September at her Far North home in Ahipara.

Phillips was put on birth control at a young age because at age 11, she began to experience issues with her cycle – such as irregular and extremely painful periods.

“I would be at school, and all those lovely things that you really don’t want to happen, happen while you’re a teenage girl in front of your peers,” she said.

Doctors expected Phillips’ issues would settle down on their own and prescribed many different medications for her to take before her cycle.

Her periods would come unexpectedly and last unpredictable amounts of time, making it hard to engage in school work and sports.

Phillips was first referred to a gynaecologist in Whangārei when she was 16.

After a six-month wait for an appointment, she was told the only way to get a diagnosis for endometriosis was to do a laparoscopy surgery and there would be a long delay if she went through the public system.

“The other thing that [the gynaecologist] had said to me was, ‘Well, one way to stop your periods is to get pregnant’. My mother was horrified.”

The comment left the then-teen dismayed and feeling alone in her pain.

“I was still a child myself. I just thought, ‘Well, there’s really nothing else I can do’.”

From 2008 to 2015, Phillips had multiple visits to the doctor and time off school. She was constantly medicated to try to reduce pain and manage her symptoms, and she stopped playing sports because she constantly felt bloated.

“I became extremely reliant on those painkillers.”

She said the relationships in her life were also impacted.

“… it was quite difficult as a young woman trying to navigate that.”

Endometriosis at a glance. Photo / Endometriosis New Zealand.

She had since learned her experience with the public health system was one faced by many other women.

“It is already such a heavy journey and a tough road to navigate. To be constantly made to feel like it’s normal to experience the level of pain and everything else that is attached to endo was discouraging and really made me feel like it was all in my head.

“I was left feeling alone and, in a way, more of a nuisance, or [like] I was wasting people’s time.”

Phillips moved to Auckland in 2015 and, after multiple GP visits to manage pain, was referred to a private gynaecologist and then to a fertility specialist.

She had her first laparoscopy and hysteroscopy the following year, which confirmed her diagnosis of Stage 3 endometriosis and adenomyosis.

“With Stage 3, [there are] a lot of lesions, there are the endo nodules and cysts – I had a combination.

“There was also some deep scar tissue around my uterus as well. One of my ovaries was covered to the point where he did actually think that we may have to remove it due to the damage. He also found a lot on my bowel as well.”

The discovery of the hidden damage done to Phillips was mentally draining for her.

“The diagnosis came after years of being palmed off by the public system and given birth control and other medications to assist with pain, excessive and lengthy periods as well as other issues with my bowel.”

Phillips had a second surgery in March 2020, but in the time beforehand had experienced a miscarriage.

A 2016 study found up to a 67 per cent increased risk of miscarriage for patients with endometriosis who did not already have a diagnosis of infertility.

“It’s hard because people don’t see it,” Phillips said.

“They don’t see when you wake up when you’ve had a whole night of spewing on the toilet, or having just constant diarrhoea and also having to deal with your cycle, and they don’t see the struggle to try to get pregnant or to keep a pregnancy.”

Two decades on, Phillips still has days where she is unable to get out of bed and day-to-day tasks are challenging.

“I am completely not in control of it. So it makes leaving the house very, very difficult, and also brings about a just a real huge lack of confidence.”

The battle isn’t over. In the next couple of weeks, Phillips will go to Auckland for a colonoscopy and gastroscopy, and at the end of April, she has another appointment with her specialists to look at having a third surgery.

“I do consider myself extremely fortunate that I had private health insurance to assist with being able to be seen by a specialist.

“It makes me sad that the majority of women do not have the ability to access this and have to wait extremely long timeframes to even be seen for an initial consult.”

Phillips has a friend group of strong women who support each other and speak openly about their bodies, but she said she wants to see more help and education for younger women.

“I’m very much an advocate for saying: if you don’t feel something is right, even if it is so minuscule, one little change, do not be scared to just go and get it checked out.”

Help and support:

Endometriosis New Zealand: https://nzendo.org.nz/.

If you or someone you know is in need of information, advice, and support, you can book an endo-help appointment with NZENDO.

Insight Endometriosis: https://www.insightendometriosis.org.nz/.

Endo Warriors Aotearoa: https://www.endowarriorsaotearoa.com/.

Health Navigator: https://www.healthnavigator.org.nz/health-a-z/e/endometriosis/.

Talk Peach: https://www.talkpeach.org.nz/.

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