0 months since symptoms started
Onset
At age 14, Jade got her first period. Within just a few cycles, she began experiencing severe pain that went beyond what she had been told to expect.
When she first sought medical advice, her symptoms were dismissed as “normal period pain.” There was little investigation into the cause, and the focus was placed on managing symptoms rather than understanding them.
In the adolescent developmental period, dysmenorrhea is often falsely considered physiological. This frequent underestimation and normalisation of pain leads to systemic delays in diagnosis - thereby preventing timely intervention (Cauchin et al., 2026)
3 months since symptoms started
Managing, not investigating
Within months of Jade's symptoms beginning, she was prescribed a contraceptive pill. As a competitive swimmer, the goal was to suppress her periods entirely to avoid pain interfering with training and competitions.
While endometriosis was mentioned as a possibility around a year later, she was told that diagnosis wouldn't be considered until she had experienced symptoms for several years. In the meantime, the pill was introduced as the only viable option.
This reflects broader patterns in care, where pelvic pain and endometriosis symptoms are often managed with short-term hormonal treatment and pain relief rather than investigated further, contributing to delays in diagnosis (Fernley, 2021)
12-60 months since symptoms started
Escalating symptoms
“I went from having painful periods to constant pain, and no one could explain why.”
Rather than improving, her symptoms worsened significantly, both on and off her period. She began experiencing persistent pain that interfered with daily life.
Instead of further investigation, the response was to repeatedly change her birth control. Every 8-10 months, Jade was switched to a different pill as symptoms continued to escalate. This cycle continued throughout her teenage years, with no referrals to specialists and no exploration of underlying causes.
Hormonal medications are frequently offered as the first or only option, despite many patients finding them ineffective. Research from Aotearoa noted that only 25% of patients using combined oral contraceptive pills found them effective for symptom management. This perpetuates cyclical iterations of birth control treatments (Ellis et al., 2022)
60-72 months since symptoms started
Living with uncertainty
By age 15, Jade suspected endometriosis herself and began researching the condition. Although her GP acknowledged it as a possibility, no action was taken toward diagnosis or specialist care. At the time, both she and her family trusted medical advice and did not push further. Looking back, the severity of her symptoms was not fully recognised.
The lack of answers, combined with ongoing pain and constant medication changes, began to take a toll on her mental health. She describes the experience as isolating and frustrating.
A brief acknowledgement of endometriosis by practitioners followed subsequent dismissal or lack of further investigation or referral often reflects a lack of confidence in managing the condition (Fernley, 2021)
108 months since symptoms started
Diagnosis at last
“Being diagnosed was validating. It was emotional, but also a relief to finally have answers.”
Within months of her first specialist consultation, Jade underwent laparoscopic surgery. She was diagnosed with stage 2 endometriosis, with lesions and cysts found across her pelvic floor, explaining the severe lower back pain she had experienced for years. During the procedure, a hormonal IUD was also inserted to help manage the condition.
Upon receiving a definitive diagnosis, the most common emotion reported by endometriosis patients is relief (86%). This reaction is in no small part a result of the difficult journey to diagnosis (Ellis et al., 2022)
109 months since symptoms started
Post-surgical complications
“Go home, there isn't much we can do.”
Just three weeks after surgery, Jade experienced severe pain caused by two ovarian cysts that ruptured.
When she sought emergency care through the public system, her pain was dismissed. Jade and her family were told it would be better to go home because there wasn't much they could do for period cramps.
The following morning, scans at the private hospital confirmed the ruptured cysts. She was prescribed additional hormonal treatment to suppress ovulation, now managing her condition with both an IUD and birth control.
Endometriosis patients frequently encounter dismissal and trivialisation of their pain in emergency settings. Signs of distress can be misinterpreted as anxiety and exaggeration, inflicting medical trauma and a fostering distrust of the healthcare system (Biddick, 2024)
114 months since symptoms started
Lack of follow-up care
Jade was scheduled for a six-month post-operative follow-up, but was never contacted. This lack of continuity left her without guidance on long-term management or reassurance about her recovery after major surgery.
This reflects broader limitations in endometriosis care, which is often oriented toward short-term, procedure-based treatment rather than sustained, coordinated management, contributing to gaps in follow-up and continuity of care (Agarwal et al., 2019)
Living with the outcome
“Accessing another surgery could take years. Most people don't even get the chance to have one.”
Despite initial complications, the IUD has significantly improved Jade's quality of life. She hasn't experienced an agonizing period in over a year and rarely bleeds. However, her experience has highlighted a major contrast in care. From ages 14 to 20, her symptoms were managed but never investigated. It was only through private healthcare that she received answers and treatment. Now without health insurance, Jade is uncertain about what access to future care will look like.
There are significant and increasing disparities in Aotearoa's healthcare system - public capacity deficits often prevent timely access to care, leaving those without private health insurance barriers to adequate treatment (Biddick, 2024)
