Exhausting sick leave, forking out for private medical procedures and being told outdated information by health professionals are just some of the ongoing challenges that women with endometriosis face.
Endometriosis is an inflammatory disease, with symptoms including period and pelvic pain, subfertility and infertility.
Despite the disease estimated to affect one in 10 women and those assigned female at birth, it takes eight years on average to be diagnosed and there is no cure.
Awareness around endometriosis and that it is not normal to have severe pain with your periods is growing.
However, gynaecologist and endometriosis specialist Dr Michael Wynn-Williams said some medical myths like prescribing pregnancy as a treatment or cure are hard to shake.
"We know from research that's been done in Australia that many women get told 'you've got endometriosis you need to get pregnant, and you need to get pregnant straight away.'
"That's often by family members who have experienced endometriosis and have been told the same thing, but also by health professionals and that's really difficult," he said.
One person who received such advice was Caitlin.
When she said to the specialist she did not want children, she was told to wait a year on the birth control, Mirena, before they would even consider surgery to treat her endometriosis.
The specialist informed Caitlin her decision not to have children made them reluctant to operate.
"It kind of felt like a bit like I was being treated like a uterus, like the rest of me didn't matter," she said.
Unhappy with that answer, Caitlin went to a private surgeon in Christchurch who confirmed she had severe endometriosis.
Caitlin had to take a week annual leave to receive her surgery, because thanks to her endo she had already exhausted her sick leave.
Chief Executive of Endometriosis New Zealand Tanya Cooke said there is still a lot of stigma around the condition in the workplace.
"We know that from research conducted last year in New Zealand that 75 percent of the participants were scared to tell their employer or their bus that they have endo.
"We also know from research in Australia that one in six people with endo have actually lost their job," she said.
However, work is under way to improve the lives of those with endometriosis in this country.
"We've been working on the Women's Health Strategy submission, and we've done a lot of work around completing that submission.
"And as an organisation we would like to see the New Zealand government develop an endometriosis action plan.
This is something Dr Wynn-Williams has experienced first-hand whilst working in Australia when they introduced their national action plan.
"I saw the difference that that made to education to patients, to health practitioners, to improvement in clinical practice and guidelines, but also funding to research," he said.
That submission is now in front of the Ministry of Health.
RNZ
