It’s a chronic condition with has the same prevalence, in females, as diabetes, and yet, there is no known cure. Even in 2020, the chronic condition of endometriosis – which effects approximately one in 10 New Zealand women – is still far from receiving the recognition it requires.
Endometriosis is a health condition where tissue, similar to the lining of the uterus, grows outside of the uterine wall. The condition can cause severe pain due to the abnormal tissue creating lesions, nodules and cysts in the areas surrounding the uterus. Endometriosis can also result in sufferers feeling pain during intercourse, excessive pain during the period or premenstrual stage, excessive bleeding during menstruation and can even result in infertility.
Research into the symptoms and treatment of endometriosis is scarce and the media representation of the condition is equally as limited.
Madison Randall, a third-year medicine student at Auckland University, has been living with endometriosis and experiencing period dysmenorrhea and chronic pain for approximately five years.
Madison was genetically predisposed to the condition, as both her mother and aunt had been diagnosed with endometriosis. Since receiving her diagnosis, Madison has been actively working to raise awareness of the condition through her social media platforms. She intends to break down the stigma surrounding women’s gynaecological health by showing her audience the realities of living with endometriosis.
Madison’s passion for supporting women with endometriosis even extends into her career choice.
“It’s why I am in med school!” Madison exclaimed. “I want to change the course of prognosis for women in the future.”
A second-year psychology student also shared her experiences with the condition. She was diagnosed when she was 15-years-old after living with symptoms for approximately four years.
“My period would last around nine to 11 days, which is an unusually long amount of time,” she stated. “My cramps would be so unbearable that I used to faint and then be bedridden for the duration of my period.”
Endometriosis would negatively impact this student’s everyday life. Her condition made focusing in class and participating in sports or extracurricular activities a living nightmare.
“I would try to listen to my teacher talk about the Cold War in history class whilst clenching onto the desk,” the psychology student elaborated. “My insides were burning to the point of me trying to focus on not fainting.”
Both women were emotional yet relieved to receive their medical diagnosis. While they were glad to know that there was a physical cause for the crippling pain that they had been experiencing for years, they were also confused about what living with endometriosis would mean.
“I did not know what it was when the doctor diagnosed me,” the Massey University psychology student confessed. “It’s never taught in schools and I’d never really heard about it in the media or on the news.”
Both women also acknowledged that while they received support from family and loved ones, there are a lot of women in New Zealand that are too scared to speak up about their experiences with endometriosis, out of a fear of receiving backlash.
“I know of so many people who can’t talk about endometriosis and my heart breaks for them,” Madison stated. “I want to raise awareness about this condition specifically in our Polynesian ladies. We need to raise awareness so our fellow wahine can feel safe to speak up.”
Nikita Devi, a fashion design graduate and model, has been battling endometriosis for over six years. With all her experience, Nikita has learnt various strategies to minimise the symptoms of endometriosis but living with the condition hasn’t got any easier. Nikita recognises that endometriosis presents itself differently for every sufferer, however, she found that a change in diet has had a huge impact on her symptoms.
Nikita is gluten-free, dairy-free and has recently embraced a pescatarian diet (eating meat-free with the exception of seafood). Removing food groups that are known to cause inflammation has worked wonders for Nikita’s stomach and bowel pains. Nikita was shocked by the lack of information she had received from medical professionals about the benefits of making diet and exercise alterations to minimise symptoms.
“I didn’t know that gluten and dairy could influence so much in your life when you have endometriosis,” Nikita said, “I was bloated all the time. I was vomiting all the time. I was constipated all the time!”
Like Madison, Nikita uses her social media accounts to draw attention to endometriosis and its symptoms. She believes that the condition demands awareness. Both girls see a gap in a lot of their followers’ knowledge and a lot of ignorance around what the chronic condition of endometriosis looks like. Many people are ill-informed on the specifics of endometriosis and see that name as synonymous with mere period cramps. This misinformation unfortunately extends into the medical field as it is currently estimated to take eight years for someone living with endometriosis to be diagnosed.
“There are so many girls and women in New Zealand who are in pain almost every day and being neglected by their doctors,” Nikita stated. “They have no idea what’s wrong with them.”
Endometriosis can often be linked to mental health problems, such as depression or anxiety due to the consistent pain caused by their disorder and the fear of experiencing that pain when in an unknown or unfamiliar environment. Other side effects of endometriosis, such as the heightened chances of infertility, can also be devastating for many women.
Women with endometriosis often look to each other, both in face-to-face interactions and online, in order to receive support. By bridging the gap in people’s knowledge of the condition, this support would be more accessible.
Please visit the Instagram accounts of Madison Randall (@madi.randall) and Nikita Devi (@officialnikitadevi) for personal anecdotes of living with endometriosis, or visit nzendo.org.nz for further information.