The woman's surgery took place in October 2022, removing a 10cm by 8cm tumour.
A woman facing the likely removal of her reproductive organs and bowel believes if her GP practice had acted on her lengthy fertility problems she might not have needed such drastic action.
Sarah*, who did not want her real name used, said she begged Health Hub Project in Palmerston North for help, but it was only when she moved to another practice that health providers discovered tumours growing on her organs.
The Health and Disability Commissioner (HDC) is investigating Health Hub Project’s handling of the case.
“I did go to the doctor. I did the right thing ... and I was just gaslit the whole time,” said Sarah, who only wanted her first name used.
In 2019, Sarah, 22, had been struggling to conceive. She went to the newest local GP with the shortest wait time.
“We got in nice and easily there, just to find out that it was probably the worst decision we’d made,” she said.
Here began a four-year-long wild goose chase, with Sarah claiming she waited months at a time and regularly tried to chase up blood test results, ultrasound referrals, and Fertility Associates referrals.
Eventually, Sarah claimed she was told she’d need to try to naturally conceive for five years before she could be referred to the Fertility Associates. Without a referral, just the first doctor consultation with the Fertility Associates is $380.
By the start of 2022, she had moved to Taumarunui in the King’s Country, but she was hesitant to transfer doctors and lose progress.
About April 2022, she moved to a new doctor, who was “absolutely appalled” and “upset” by her experience.
The doctor sent the referral to the Fertility Associates “while I was sitting there right next to her”.
“I didn’t realise that everything was as bad as it was. I thought this was normal processes because that’s what they were kind of saying to me.”
Fertility Associates contacted her immediately and pointed her towards IVF, saying she had waited long enough without conceiving. She was also finally given an ultrasound.
“It was during that, they couldn’t find my reproductive organs because there was this mass in front of it.”
The mass was a 10cm by 8cm tumour, so big it protruded from her stomach, and could be felt and moved around by hand.
Within a month she went into surgery.
“As I was being wheeled into surgery, they wanted permission to take my uterus as well as both the ovaries,” she said.
Sarah didn’t want to lose her reproductive organs and all her chances of getting pregnant, so kept everything she could, and allowed them to do 15 biopsies and a laparotomy.
One ovary was taken out with the large tumour attached to it, leaving behind her other ovary and bowel, both with small tumours that shouldn’t have affected their functioning.
While her tumours were not cancerous at the time, Sarah must now have MRIs every six months to watch for cancer development.
The only treatment will be eventual removal of all infected tissue - losing all reproductive organs and a bowel resection.
Sarah will then need to wear a colostomy bag and take hormones.
For Sarah, stalling the removal of the affected tissue and organs was a risk, but the alternative of not having kids felt worse.
At that point, the option of IVF was unavailable as her tumours were hormone-sensitive, and surrogacy was her final option.
One month after the surgery she fell pregnant naturally.
“It felt great. I cried so much when I got that test.”
It turned out the large tumour was putting so much pressure on her uterus that nothing was able to live in it.
Sarah was able to conceive her second child quickly as well.
“My children are miracle babies,” she said.
On the late nights when the kids were up and crying, she remembered the times when she would cry in the shower about not being able to have kids.
“Even the worse times now, are better.”
Sarah said an advocate from HDC had asked what she wanted the outcome of the investigation to be - but she struggled to know if anything could make up for the damage caused.
“The only thing that would make it okay would be for my health to be okay, but it never will be.”
Health Hub Project said that prior to the Herald’s inquiry, they had not had direct contact with Sarah since she transferred practices in 2022.
Executive director Andrew Nolan said it would not be appropriate for them to comment until HDC’s formal investigation was complete.
“All matters of this nature are taken seriously and are managed through established clinical governance and complaints processes.”
Nolan said the investigation included reviewing clinical and administrative records, and deciding next steps that may help in “resolving the matter or mitigating any potential adverse health consequences”.
An HDC spokeswoman said they were awaiting more information to progress Sarah’s complaint.
Sammy Carter is a journalist for the New Zealand Herald covering news in the Wellington region. She has previously worked at the Rotorua Daily Post.