Today a petition with more than 7000 signatures, calling for national diagnostic guidelines to be developed, better treatment options, as well as more government funding, was presented National Party MP Louise Upston on the steps of Parliament.
Those steps were smothered in 182 white crosses - the number of people who died last year of the disease.
Jane Ludemann, who co-organised the petition, was diagnosed in 2017.
"It took over two years for me to get my diagnosis and unfortunately the doctors think that my cancer's not curable."
She said the sector was woefully underfunded.
"At a government level we're not funding anything in regards to awareness and most years we don't fund any research. It's one of our least-funded cancers in New Zealand."
She said unlike Australia, New Zealand had no national framework to diagnose the cancer, meaning the approach from doctors could vary significantly.
Talk Peach Gynaecological Foundation co-organiser and founder Tash Crosby said that was certainly her experience.
"I was diagnosed in 2017 and the only reason I am standing here today is because on the third time getting discharged from the emergency department with a pack of Panadol I begged for further testing and refused to leave.
"Women shouldn't have to beg for their lives."
Ovarian cancer is the least survivable women's cancer and the survival rate is less than half that of those diagnosed with breast or prostate cancer.
"It's just the compounded issues of access and access to screening and access to treatment and the requirements of travel and just the difficulties and the challenges.
"I think the key thing, and with the great work Jane and Tash are doing, is that they're reaching out and wanting to make sure all women have access to information and good support so it's an all-of-women approach."
Turning out to support was Eleanor, a local nurse, who has late stage ovarian cancer first thought to be a stone in her gall bladder.
"It started with having a feeling of bloatedness in my abdomen. I had an ultrasound but it didn't show anything.
"That's why this cancer is detected at a later stage... it's already late.
"I've worked as a nurse, I've seen the effect this disease can have... I've had friends who have family members affected by it, lost to it."
National Party leader Judith Collins was there and said it was not clear why this type of cancer appeared to have been ignored for so long.
"As governments go, you tend to take advice from your ministries and the Ministry of Health should be letting the government know just how serious this is.
"I think this is a failure right through the system."
The Ministry of Health said it was up to the individual DHBs to decide how much was spent on ovarian cancer services.
Te Aho o Te Kahu, the Cancer Control Agency's chief executive, Professor Diana Sarfati said it was important to talk about the disease.
"I acknowledge the stress and heartache experienced by those living with ovarian cancer and their whanau and families.
"It's really important we continue to help raise awareness of the cancer's symptoms and the various challenges people who have been diagnosed face. "
"This give us an indication of the quality of service delivery from detection to treatment and allows us to continue to help service providers improve."
She expected the gynecological cancer QPIs to be ready by next year.
