A 16-year-old student with endometriosis is urging New Zealand schools to take the disease seriously after struggling to get support.
Leila says she battled with her school for months before they finally agreed to help her. Now, she is encouraging other women with endometriosis to make their voices heard.
Around 120,000 women in New Zealand have endometriosis. The condition causes tissue similar to the lining of the uterus to grow outside the womb. It can cause extreme pain, vomiting, heavy bleeding and lead to infertility. Endometriosis affects roughly one in 10 women.
Leila, who didn't want her last name used, was diagnosed with the disease at just 14 years old after suffering from painful periods for more than a year.
At first, her illness was manageable. She was getting good grades and attending school regularly. However, in 2019, she was very sick, so her doctors put her on a medication that mimics menopause. While this has helped with pelvic pain, it came with extreme fatigue and bone pain as a side effect. As a result, Leila has missed significant amounts of school.
In an effort to keep up with her studies, Leila met with her school leaders multiple times asking for help, however, until November, she said they never offered her any.
At one point the school agreed to speak with her teachers and come up with a plan for her, but never followed through, she said.
"They would also make promises saying, 'Oh we will get all the teachers together and get me some assistance', but then we would ask them about it because it hadn't happened, they would say, 'They aren't obligated to do that'."
"They just started to give me the cold shoulder and I became a bit of a burden to them."
Leila felt like they were "setting her up for failure" and ignoring how much she was struggling. "I would have loved their support."
She said the disease isn't easy to live with and more awareness is needed over how incapacitating it can be.
"It's something that is kind of brushed under the rug because it's not recognised as a debilitating disease."
"Even when you're off school they [her school] expect you to be mentally okay and able to do work at home, but I feel really nauseous and dizzy and I don't really feel up for anything. That's why I am off school, because I can't perform how I normally would."
People with endometriosis are eligible for special assessment conditions, according to the New Zealand Qualifications Authority (NZQA). For someone with endometriosis, special conditions may include taking assessments in a separate room or more frequent bathroom breaks.
An NZQA spokesperson told Newshub students with endometriosis are also eligible for derived grades, which is where the school gives a student who has missed significant amounts of school a grade based on pre-existing tests, exams and work.
Leila said her school never made her aware of the support that was available and only offered help after her mother got "upset" and confronted them.
While things aren't perfect, the school is now helping her in certain classes and making more allowances for her.
Leila is urging other students with endometriosis not to give up and to make sure they get the support they need. Although, she admitted it's frustrating fighting to receive the help you are already entitled to.
"Reach out to as many people as possible for help. Make sure you're heard by your school, so they know how important education is to you, but [let them know] you may need some allowances made for you due to the symptoms of endometriosis."
When Leila first started asking her school for help, it felt like her illness wasn't being taken seriously and it seemed like they were trying to brush her off to avoid extra work.
This was especially upsetting for the 16-year-old because her school regularly had endometriosis awareness talks. But she kept fighting and is encouraging anyone else going through something similar to do the same.
Ministry of Education deputy secretary sector enablement and support Katrina Casey told Newshub Leila's situation "appears to be unusual".
Casey said schools take the health and safety of their students very seriously and the Ministry expects students with health conditions to be helped.
"We expect schools to support children and young people with health conditions to have the same opportunities to participate in education as their peers. We recognise this can be challenging for schools and have prepared guidelines to help them do that."
"The guidelines include information about drafting health care plans, handling medications and where to go for more information on specific conditions."
Endometriosis New Zealand
However, Endometriosis New Zealand CEO Deborah Bush said Leila's struggle isn't unique and is something girls all over the country are dealing with.
Bush told Newshub endometriosis isn't taken seriously across the board, with family members, schools and workplaces often failing to appreciate the severity of the disease.
"The general response to endometriosis might be to roll your eyes and say, 'Suck it up and get on with it, many women before you have dealt with period pain' but it's actually so much more."
"The impact on quality of life...one very common effect in young people is extreme fatigue and tiredness, so they don't have to have advanced-stage disease to struggle with the challenges."
It is very common for women with endometriosis to miss school because of their illness, which can have serious impacts on their studies and careers.
Bush said it is crucial that schools are aware and supportive of young girls who have endometriosis.
Newshub didn't approach the school because Leila wished to remain anonymous and was worried it would interfere with the positive progress she has made.
