Endometriosis call a long time coming
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 noone could tell me what it was.
‘‘I just wanted someone to listen to me.’’
The 19yearold is just 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 lines the inside of the uterus — the endometrium — grows outside the uterus.
It most commonly covers women’s ovaries, fallopian tubes and the tissue lining the pelvis, and can create severe pain, migraines, nausea and vomiting, among other symptoms.
Miss Turton was 12 when she started menstruating and experiencing all of the above, but it was only in the past couple of years they 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 on end in bed, unable to function.
‘‘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 having doctor’s appointments every few weeks, she ‘‘couldn’t just be a normal teenager’’.
Eventually, Miss Turton was given the 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.
‘‘I came home and blood just started pouring out of me.’’
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 that could cause a flareup.
‘‘I was basically depressed. I was either a zombie from the drugs or really moody.’’
When one female doctor suggested, for the first time, she get the Mirena removed, she 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 — a surgery that was the only way to determine whether 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 as best she could.
‘‘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 is 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 private medical insurance and being unable to work or access a sickness benefit, she was lucky to have her family’s support — but not all sufferers do.
‘‘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 told what was going on with her health.
She wanted other women who had been diagnosed with endometriosis or experienced symptoms to ‘‘keep pushing and not give up’’.
‘‘It’s not just bad periods, it’s not just in their head — the pain is real and they deserve support.’’
The Southern District Health Board was approached for comment about wait times for endometriosis surgery, statistics on how common it was, and whether it was equipped to deal with the demand from patients.
However, it was unable to respond by the Otago Daily
deadline.
AUCKLAND: Grey Power has been accused of taking an undemocratic stance in opposing cannabis legalisation.
However, its president says that is not the case, and the ‘‘Yes’’ voters within the association’s ranks are a tiny minority.
Grey Power Otamatea branch president Beverley Aldridge said she supported legalisation.
Her chapter took a petition seeking legalisation to Parliament in 2016, and believed people should be allowed to grow plants at home and consume as they will.
The wider organisation had taken a staunch stance against the referendum without consulting all members, she said.
‘‘We were incensed with it, because to us it was a breach of our right to have a democratic vote . . . They had no right to say: ‘please ensure you vote against this change and encourage anyone else you can to do likewise’. It abuses our right to have a democratic vote,’’ she said.
Ms Aldridge had glaucoma, and had been told she had four years before her vision was gone.
The 79yearold said cannabis could give her extra time in her fight for sight, but medicinal products were too expensive.
‘‘Many of us do not have the funds to buy it, even if it was available,’’ she said.
‘‘The medical profession, most of them will not supply cannabis. I can’t get a prescription for cannabis for my glaucoma.’’
Grey Power president Mac Welch said Ms Aldridge’s group had been sent legal threats for its cannabis stance, and for bringing the organisation into disrepute.
He said the decision to oppose cannabis legalisation was a democratic one, made at two AGMs.
From Grey Power’s 65,000 members, Mr Welch said he had had just two complaints, one of which was Ms Aldridge’s.
Victoria Davis said she quit the organisation because of the move, and agreed with Ms Aldridge that the decision was not democratic.
‘‘Many of our members could not make it to the AGM, but the membership itself was never consulted, and yet the president uses very strong language,’’ she said.
‘‘He says Grey Power members totally oppose any legislation. Now that kind of means totally, doesn’t it.’’
Ms Davis was caught growing 62 cannabis plants at her Golden Bay home in 2012, which she said were to help treat her husband, who suffered phantom pain after a double amputation.
A judge discharged her without conviction, but ordered her to pay $300 to a local drug and alcohol clinic.
Mr Welch said members were canvassed at zone meetings, and that was then taken to the AGM for a vote, which was clear in opposition to the referendum.
The organisation supported medicinal cannabis being freely available, but did not support private use, he said.
He refused to explain that position. — RNZ