'It's a disgrace': The Kiwi women being ignored by NZ's health system

From right to left, sisters Lauren and Renee Simons both have endometriosis but differences in their care has resulted in very different outcomes.
From right to left, sisters Lauren and Renee Simons both have endometriosis but differences in their care has resulted in very different outcomes. Photo credit: Supplied

Lauren Simons' pain was sometimes so bad she couldn't get out of bed or go to school, yet for five years her doctors told her she was fine. 

She is one of the 120,000 New Zealand women with endometriosis, a condition that causes tissue similar to the lining of the uterus to grow outside the womb. The illness can cause extreme pain, vomiting, heavy bleeding and lead to infertility. It affects roughly one in 10 women.

Lauren started experiencing pain when she was 12 years old. She was in and out of the doctors regularly with "excruciating pain", heavy bleeding and vomiting. 

However, time and time again, the doctors told her she was fine. They told her everyone gets pain when they have their period, and that it was normal. 

"They gave me panadol and put me on a contraceptive pill that reduces bleeding, but apart from that they never said anything else could be wrong," she told Newshub.

Lauren said endometriosis was never mentioned to her and despite being in daily agony, the teen started to think maybe her doctors were right. 

"I got to the point where I thought maybe I am just a drama queen. Maybe I am just being silly," she said. 

"But then I saw all my friends going through their periods and they were at school and doing PE and they were fine."

When she was 17, the pain became so bad that she was missing around two to three days of school a week.

"It just spiralled out of control. People at school started to talk. They thought I was making it up."

Quick facts about endometriosis.
Quick facts about endometriosis. Photo credit: Newshub.

A diagnosis after five years

She and her family were desperate for an answer, so Lauren took matters into her own hands. She Googled her symptoms and found information about endometriosis. She immediately knew her symptoms matched the descriptions online, but when she told her doctor, he brushed it off. 

However, her mother knew something wasn't right and told the doctor they weren't leaving until they were given a referral to a gynaecologist. Thankfully her doctor referred her and finally, after five years, Lauren was diagnosed with endometriosis. 

However, the gynaecologist didn't specialise in endometriosis and while he tried, he didn't really know how to help her.

Endometriosis care a 'disgrace'

Lauren's story isn't unique.

Endometriosis New Zealand CEO Deborah Bush told Newshub the lack of care for women and girls with endometriosis is a disgrace.

"I think it shameful," she said.

Research shows on average, it takes eight years for women to be diagnosed with endometriosis. Deborah said this often means women go back to their doctor multiple times before being diagnosed.

"It is a major public health issue with a generally disgraceful response from the medical profession."

Endometriosis New Zealand CEO Deborah Bush.
Endometriosis New Zealand CEO Deborah Bush. Photo credit: Supplied

She said women are often fobbed off by their doctors, who tell them the pain is normal or that they are overreacting. 

"We are not just talking about people having a tummy ache. This can be debilitating, incapacitating pain." 

She said the effects aren't only physical with chronic pain and constant doubt often causing women to suffer mental health problems.  

"In the last two months I have personally dealt with two young teenage girls, one was 14 and the other 15, who have felt suicidal, with one writing a suicidal note."

Bush said endometriosis can be well managed if it is diagnosed early. 

For Lauren, the delay in being diagnosed had devastating consequences.

"I have nerve damage, and I've got cystitis of my bladder and irritable bowel syndrome," she said. 

After seeing her first gynaecologist for a few years, she changed to one that specialises in endometriosis. While she is now getting the treatment she needs, Lauren says her daily life will always involve pain. 

For her a good day is one where she can go to work and move around, a bad day could see her hospitalised because she is unable to move. However, she said the bad days are becoming less common.

Renee and Lauren Simons.
Renee and Lauren Simons. Photo credit: Supplied

Lauren's 15-year-old sister Renee also has endometriosis. She was diagnosed early. 

Her mum, Sharon, said because she had been through the process already with Lauren, she immediately noticed the symptoms in Renee. 

"We went to the doctor and he put her on the contraceptive pill. That didn't sort things so we went back and said, 'her sister has endometriosis, she has the symptoms, we want a referral to the gynaecologist straight away'."

Because Renee was diagnosed early, she hasn't developed any other issues and has already had surgery to help with her endometriosis. 

Government support needed

Sharon said there needs to be more information about the condition, so the symptoms are recognised by both doctors and young women with the condition. 

Endometriosis New Zealand and the Ministry of Health are part of a taskforce that has created clinical guidelines to help doctors diagnose endometriosis. 

However, Deborah said it's unacceptable that a charity is driving the change. 

She said she has tried to meet with Women's Minister Julie Anne Genter to discuss funding but was told Genter was too busy.

"This was one of the things she campaigned on before the election, doing something about women's health and doing something about endometriosis, and yet she can't even have a meeting," Deborah said. 

Genter told Newshub endometriosis is a serious issue for many women and girls. 

"I support the good work underway with a taskforce to improve the quality of diagnosis and management of endometriosis and pelvic pain," she said. 

She said she is "always open" to receiving feedback from Endometriosis New Zealand.

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