Middlemore Hospital: Women with endometriosis living in extreme pain; top doctor says 'we don't have enough' to help

Justine Swainson: "I wouldn't wish it upon my worst enemy." Photo / Michael Craig

Women with conditions so painful they struggle to walk, eat and sleep cannot get life-changing operations because one of New Zealand's major hospitals lacks the money for surgery.

Middlemore Hospital has the country's busiest women's health service, and has had to prioritise surgery for the critically or acutely ill, or those with life-threatening conditions like cancer.

Others are sent back to their GP and told to re-refer if things get worse. They include women with "non urgent" but nonetheless serious and often debilitating gynaecological conditions, including suspected endometriosis, incontinence, pelvic pain and prolapse.

The Weekend Herald has spoken to women caught in a crisis that the service's own clinical director describes as heartbreaking, and a result of prolonged underfunding.

Justine Swainson had surgery in 2016 for endometriosis, an inflammatory disease where tissue similar to the lining of the uterus is found outside the womb. The 29-year-old's GP referred her back to Counties Manukau DHB after her pain worsened and became daily.

"It's like a shooting, twisting - like someone is using a cheese grater on my insides," she said of the most intense pains. "I would be throwing up all the time. I would get migraines. I couldn't eat for days - I couldn't keep anything down."

Swainson was referred for physiotherapy and had scans. More than a year went by. She missed so much work as an office administrator that she feared she'd have to quit, and when not working she was mostly in bed.

At least once a month she'd be rushed to the ED for morphine. Antidepressant and anxiety medication was added to heavy-duty pain killers.

A specialist agreed surgery was needed in November last year. It would be within four months, Swainson said she was told. In the New Year and having heard nothing she made calls, and in March was finally told it would likely be another nine months wait.

"They said, 'We've got a real backlog and yours is not classed as urgent' ... I mentally broke down. I thought, 'I can't live like this any more.'"

Swainson borrowed $21,000 for private surgery in June. Endometriosis and adhesions were removed, and her left ovary relocated because it was stuck to her uterus. She'll need to find at least another $10,000 for a follow-up operation in November. It's caused financial stress, but her life has been transformed.

"So many people have said to me, 'You just seem so much happier, you're like a different person now'," Swainson said of the change. "It makes me so upset I lived like that for so long, and no one wanted to know about it.

"Some people are in a position where they can't [borrow money]. It breaks my heart. I count myself as one of the lucky ones. I wouldn't wish it upon my worst enemy."

Counties Manukau DHB serves a population with the most complex health needs in the country. Photo / Dean Purcell

Other women told the Weekend Herald of battling to get specialist appointments, and having surgeries delayed, despite pain so bad as to make walking difficult. One patient, who asked not to be named, lodged a formal complaint before surgery was agreed to - and then waited another nine months.

"Your average GP isn't going to refer someone for mild period pain or something like that - it's actually debilitating," she said.

"I've seen a lot of women [online] saying their referrals have been rejected and they don't know what to do. I will always comment and say, 'You need to advocate for yourself really strongly - go back to your GP and make sure they're really fighting for your appointment.'"

An ongoing Weekend Herald investigation has detailed how Middlemore women's health services have struggled to cope with growing demand - often linked to poverty and obesity - including in maternity, where the death or stillbirth of babies in 2016 and 2017 were linked to problems such as a lack of staff and bed space.

Turning away needy patients took a toll on staff. An independent review, delivered in March and obtained under the Official Information Act, found morale low and gynaecologists "concerned about the unmet need for patients with pelvic pain and uro-gynaecology".

One problem is a lack of operating theatre capacity. The DHB has started outsourcing some procedures to private practices, including 150 hysteroscopies, with more to follow.

Dr Sarah Tout, Counties Manukau's clinical director of women's health, acknowledged Swainson and other women's stories "describe the impact of prolonged waiting for surgery". Theatre waiting times were decreasing and more women getting surgery, she said. About 80 to 100 cases are declined each month, roughly 8 per cent of referrals.

"It is important that we accept referrals only for women we have the capacity to treat. All women with possible gynaecological malignancies, those with urgent gynaecological conditions and those who present when acutely unwell are currently accepted for assessment and treatment."

Tout said that all public health services have cases or conditions that "would/may benefit from treatment but that our limited public health resource must prioritise the most urgent cases to be seen".

Associate Health Minister Julie Anne Genter: "We may need to do more." Photo / Mark Mitchell

"With unlimited resources we would be able to provide assessment and treatment to everyone regardless of their clinical priority. We do not have unlimited resources therefore we have a responsibility to triage our work to those with the highest need. We will slowly and responsibly be opening the door to see Priority 3 graded gynaecology patients as we increase our capacity to treat these women."

In a recent interview, Tout called on the Government to help, saying, "everyone is trying to do the best with what they have. But we don't have enough to do what we want, or need, to do".

"The DHB needs more funding to expand its theatres. That won't happen overnight, but if there was more funding then we could [outsource] more to private ... it breaks [doctors'] hearts that we cannot see women ... we know we can help with surgery, but we don't have the capacity."

Endometriosis NZ has worked with medical colleges to approve a clinical pathway for treatment of the disease in December 2018, setting out when and how care should be provided.

"There is no indication on the part of the ministry to progress things," said the charity's chief executive Deborah Bush. "There are 130,000 girls and women with endometriosis in New Zealand - this is absolutely calculated neglect."

Associate Health Minister Julie Anne Genter, who has responsibility for women's health, said her understanding was that work was near completion and would be rolled out. She said her heart went out to women affected by delays.

"Counties Manukau did receive an extra $83 million in Budget 2019. But we may need to do more, and I will be asking questions to ensure that the increase in funding is also getting through to women's health ... we can't make up for underfunding in just one or two years."

Dr Mark Arbuckle, a GP at Otara Family and Christian Health Centre, warned of the delays last November. Gynaecologists were doing all they could, he said: "The DHB and government should have provided more support long before this time."