AFTER nearly 20 hospital visits in a matter of months, Jayme Turton’s biggest fear was waking up from surgery and being told nothing was wrong with her.
“I started to think I was just making it up in my head because no-one could tell me what it was.
“I just wanted someone to listen to me.”
The 19-year-old is one of the 130,000 women and girls in New Zealand living with endometriosis, a debilitating disease in which tissue similar to that which normally lined the inside of the uterus — the endometrium — grew outside the uterus.
It most commonly covered a woman’s ovaries, fallopian tubes and the tissue lining the pelvis, and could create severe pain, migraines, nausea and vomiting, among other symptoms.
Miss Turton was 12 years old when she started menstruating and experiencing all of the above, however, it was only in the past couple of years it became unbearable.
“People always say, ‘it’s just a bad period’. It’s not, it’s not normal to be that sick.”
Earlier this year, her pain got so bad she was forced to give up working as a caregiver, missed out on socialising as a teenager, and would spend days in bed, unable to function as a result.
“I’ve probably worked five months in total this entire year, if that… you can’t lift someone when you’re doubled-over in pain, I couldn’t even lift myself.”
In and out of hospital and seeing doctors every few weeks, she “couldn’t just be a normal teenager”.
Eventually, Miss Turton was given a Mirena – a contraceptive device used to prevent endometriosis growth.
“After I got it I started vomiting at work and then a few days later I was in agony.”
A doctor then put her on antibiotics which made her even sicker.
Every time she went back to hospital, doctors gave her “mixed messages” and never suggested endometriosis as a potential cause.
“I’d go to the emergency department and they’d just dope me up and then send me home.”
She began to “live off” codeine and other pain medications, and would often spend most of the day in bed to avoid any strenuous activity which could cause a flare-up, she said.
“I was basically depressed. I was either a zombie from the drugs or really moody.”
When a female doctor suggested, for the first time, she get the Mirena removed burst into tears and hugged her.
While it helped, it did not solve the problem.
After searching for answers from medical professionals for months, she was admitted to hospital for the first time in March.
“I told them I wasn’t leaving until they got me sorted.”
However, a few days later, she was sent home with antibiotics which made her incredibly sick, and landed her back in hospital a few days later.
Despite an ultrasound eventually revealing a cyst on her ovary, it took months before she was signed off to have a laparoscopy only way to determine whether or not she had endometriosis.
“I basically ran into the room when they called my name for surgery.”
When she came out, she felt immediate relief and became “quite overwhelmed”.
“I still get pain but it’s not on both sides… I’m so much better now and I can go to work, it feels like I’m getting my life back.”
Now, she was focused on eating the right foods to avoid inflammation and managing her pain.
“I know it could come back but I’m trying not to focus on it.”
Her mother, Fiona Soper, said it was like having “half a person” before her daughter had surgery.
“As a health consumer, she had the right to know what was causing her the pain.”
While she did not want to attack health professionals or point the finger, there needed to be a wider understanding of what endometriosis was and the impact it had on women, she said.
“There are holes in the system but it’s about talking about it and letting other females know they’re not alone and to keep pushing.”
With her daughter not having medical insurance and being unable to work or access a sickness benefit, she was lucky to have her family’s support.
“There’s a whole pile of women out there suffering that won’t have the money, I don’t know how people do this.”
Miss Turton said she was not angry with the doctors but believed it took too long to be diagnosed.
She wanted other women who had been diagnosed with endometriosis or experienced symptoms to “keep pushing and not give up”.