Christchurch endometriosis patient ‘rejected’ by public health system

A Christchurch woman with debilitating endometriosis says she has been repeatedly declined specialist treatment, told she cannot get any further medical help under the public health system unless she “is dying or has cancer”. Tory McArthur purchased health insurance in a bid to access specialist care, but has a three-year standdown because her condition is pre-existing, and her premiums have just risen by $40 a month. So for now, she has no option but to live in pain. She speaks to senior journalist Anna Leask about New Zealand’s “disappointing” attitude to women’s health.

“I was diagnosed about seven years ago after surgery, but only after having probably two to three years before that of debilitating pain and terrible periods, McArthur, 32, told the Herald.

“I was having fainting spells, passing out. I was iron deficient, and I ended up hospitalised four times in a year.

“The first three times they thought it was my stomach – they were saying ‘you’ve probably just got irritable bowel syndrome’ or ‘you’ve probably just got gas that you can’t get rid of’.

“Then a friend said my symptoms sounded a lot like endometriosis, and the fourth time I went to the hospital, I asked the doctor if it could potentially be that. I have notes from that doctor saying basically, there’s no way that this person has endometriosis.

“But of course, later, when I ended up having the surgery, I was actually diagnosed with endometriosis.”

Tory McArthur has been trying to get treatment for endometriosis for many years. Photo / Supplied

McArthur was having pre-cancerous cells removed through a series of biopsies when the endometriosis was finally discovered.

“The specialist advised getting a second opinion about endometriosis because of the intensity of the pain of the procedures,” she explained.

“I had an internal ultrasound where they could see my ovary wasn’t moving so was then referred back to gynaecology as they believed then that something wasn’t right.”

McArthur underwent surgery, and widespread endometriosis was finally confirmed.

It was removed, and McArthur had a hormonal intrauterine device implanted.

IUDs – like the Mirena – is a long-acting, reversible form of contraception that can be an effective treatment option for endometriosis, primarily by reducing pain and heavy bleeding associated with the incurable condition.

Photo / Endometriosis New Zealand

It took about 10 weeks for McArthur to recover, but afterwards she was “relatively pain free” for three years.

“And then I had another bout of pain where I had to go to the hospital. I couldn’t deal with it. I sat in the waiting room for about six hours,” she said.

“I was in excruciating pain. I was on the floor and I was crying and trying to hold my s*** together, because I didn’t really want to make a scene – but in the end I wasn’t able to hold myself up and I just keeled over.

“A doctor gave me a Panadol and said to ‘wait it out’ until someone was able to see me … I was sent back to the waiting room. The pain was an 11 out of 10 – I felt like my insides were ripping themselves out.

“It got to the point, at about 4am, where I said to my partner, ‘Just take me home, we’ve been here for hours and no one’s coming’. I ended up dealing with it at home by myself, taking Panadol.”

McArthur at her last hospital visit, where she waited for more than six hours before her partner took her home without being seen. Photo / Supplied

Since then, McArthur has been “back-and-forth” with her GP, trying different pain management options. She is allergic to some medications, and others have not worked or made little difference.

“Three or four times over the last 18 months, I have tried to get a specialist appointment, but every single one has been declined,” she said.

“My GP refers me, and they say no. They say that, basically, I’m not dying and I don’t have cancer, so I am not a high-priority person even though I am in so much pain.

“The last time I was hospitalised, over about four or five hours, I was given all up around six to seven doses of fentanyl and five to six doses of morphine to try and get the pain eliminated.

“They did send a couple of gynaecologists in to ‘once over’ me… one of them said to me that healthcare is the worst she’s seen in 30 years, and that there was nothing they could do for me.

“For me, surgery is the only fix ... There is medication, but not every medication works for everyone. I’ve had my IUD for seven years, and it’s great at masking some of the pain, but it’s not great.

“And nothing stops endo from growing and spreading … and contraception is meant to slow it down, but I’m unsure what pace."

McArthur says she has missed work because she is not well enough to function - but cannot get the medical help she needs. Photo / Supplied

In June, McArthur’s GP referred her again. Just last week a specialist appointment was confirmed but it is not for months and there is no guarantee of actual treatment.

McArthur, a media coordinator at NZME and photographer, cannot afford private medical care at this point in her life. A single appointment with a gynaecologist costs upward of $400.

She purchased health insurance so she can get treatment in future.

“But because the endo is a preexisting condition, I have to wait until a three-year stand-down period is up. I am one year into that and they have just put my premiums up $20 a fortnight,” she said.

“So I am paying tax for a public health system I can’t access and a s*** load more for private care I can’t use yet.

“I feel incredibly let down. I know that there are always people worse than me, but I contribute to society, I pay my taxes and being rejected by the public system ... it just sucks.”

McArthur said her endometriosis was more than just pain - it has also impacted her mental health, and tests showed her capacity to have children has been reduced because of the condition.

“My fertility level has dropped a lot. I’m not infertile, but it’s not the greatest ... I was told by my doctor last year that I should be trying to have children now if I want them,” she said.

“Pregnancy can improve endo symptoms, but there is no guarantee ... It’s not healthcare to be told to ‘have a baby’. And, it is basically pushing me into a corner to have to make these decisions before I am ready. Having a baby is not where we are at this present point in time.”

McArthur shared her experience because she wanted to highlight the “inadequate” health care for women in New Zealand.

She knows a lot of other women living with crippling endometriosis and wanted to raise awareness around the issue.

“A lot of people are just like ‘oh, it’s just bad periods. But it’s not just bad periods – endo is an all-over-body chronic illness. It has been found on every major organ in the body – it’s not just your uterus, it can grow on your pelvis and bowel. It can also spread to other organs around your body – they have even found endo near the brain before.

Tory McArthur and her partner Ben Hibbs. Photo / Supplied

“People need help. Seven years ago, I got the surgery I needed with no qualms, and it helped. For many of us, at the moment, surgery is the only thing that can kind of remove the scar tissue you have.

“I don’t want to be in the emergency department, I don’t want to be off work ... I want to have this issue fixed and not to have to worry about it.”

McArthur could not remember the last day she was pain-free and comfortable in her own body.

“I operate at a pain level of anywhere from three to five every day. I’m always cramping, and I’m always bloated. It doesn’t matter what food or drink I eat, and it doesn’t make a difference if you diet. Last year, I lost 15kg and I was still in excruciating pain,” she said.

“I cut out caffeine for a year. I cut out alcohol for a year and a half. I went vegetarian for six months. I felt no difference. People have said ‘go vegan’ – I’ve done it all.

“I did pelvic floor appointments where they have to go basically inside you and massage your pelvic floor, and that is beyond excruciatingly painful – and it feels deeply violating and each appointment I left in tears.

“I also did endo cupping which is where they use the same cupping technique on athletes but on your lower abdomen to try to get the tissue layers to separate to loosening adhesions. It is still a freaking insanely painful process too as they not only apply the cups to your lower abdomen but also drag them back and forth trying to release scar tissue physically. I did that like 7-8 times.

“I’ve done so many different things and looked into so many different avenues of healing to try. I take antidepressants, I do therapy.”

Endometriosis is the presence of ectopic endometrial tissues outside the lining of uterine cavity. It is a well known cause of chronic pelvic pain and infertility in females. Endometriosis of the appendix is rare and may present with acute or chronic abdominal pain.

McArthur said there had been many times she felt people thought she was a “hypochondriac” or was being dramatic about her pain.

She felt that people dismissed women with endometriosis and thought they should “just get over it”.

“People don’t realise, it can be so debilitating. And for so long I haven’t been listened to ... It’s so infuriating. It’s disappointing.”

Endo care in NZ ‘inadequate’ - advocate

Endometriosis New Zealand chief executive Tanya Cooke said the level of care for Kiwis with the condition was “inadequate”.

“People with the condition face long diagnostic delays, on average nearly 10 years. There are also major barriers to accessing timely, effective treatment and specialist care,” she said.

“There is a severe shortage of endometriosis specialists, and a lack of awareness and education in primary healthcare. This often results in symptoms being dismissed or misdiagnosed, and even once diagnosis has taken place, a long wait for treatment.”

Cooke said McArthur’s experience was common.

“Sadly, this is a reality we hear all too often. With at least 120,000 people in New Zealand living with endometriosis, far too many are being left to manage debilitating symptoms without proper support or care,” she told the Herald.

“We need a National Endometriosis Action Plan, similar to Australia’s, that can provide a coordinated response to endometriosis in New Zealand.”

Tanya Cooke, chief executive at Endometriosis New Zealand.

Cooke said a national plan would improve diagnosis through the implementation of standardised care pathways and better GP education, while developing improved access to treatment and support.

“It would also drive public awareness, help fund much-needed research, and ultimately improve health outcomes and the quality of life for the 120,000 or so New Zealanders with endometriosis,” she said.

“Endometriosis is a serious and under-recognised health issue with major personal, social, and economic impacts, this includes significant impacts on productivity and healthcare costs. It’s time for meaningful, coordinated action to address it.”

She urged people with the condition to learn as much as possible so they could strongly advocate for themselves.

“Including how to interact with your GP and the health system,” she said.

“Know that your pain and what you are experiencing is real, trust your instincts and have courage and confidence to advocate for yourself, and don’t give up.”

‘Significant pressure’ on Health NZ services

Health New Zealand chief medical officer Professor Dame Helen Stokes-Lampard acknowledged “current wait times” were causing people with endometriosis “distress”.

“Our health services continue to experience significant pressures due to sustained high levels of acute demand and workforce shortages, and this is having an impact on planned care,” she told the Herald.

“Our immediate focus is on urgent patients and those who have been waiting the longest for treatment. We continue to work hard to put in place systems and processes so improvements to waiting times are made.”

Health New Zealand chief medical officer Professor Dame Helen Stokes-Lampard. Photo / Health New Zealand

She did not respond to questions about what the agency would do in future to help patients.

She referred to a “best practice guidance” published in March 2020 that was “developed by a taskforce” of health professionals, Endometriosis NZ and “those who live with the condition”.

“It has been made available via the Health Pathways programme to all clinicians working in the community and focuses on early presenting symptoms and investigation,” she said.

“Health Pathways is a ‘one stop shop’ for best-practice, condition-specific guidelines and associated information. The online resource is designed for primary health care practitioners to use during consultation, helping them manage and refer their patients to the most appropriate specialist, hospital or community-based services.

“In general, the guidance aims to support early recognition of symptoms and empower primary health care practitioners to make a diagnosis and commence management. Referral to secondary care gynaecological services is only advised if the patient has uncontrolled symptoms that have not responded to treatment options in primary care.”

Stokes-Lampard did not have any advice for people struggling to get treatment, nor could Health NZ provide any data on the number of people waiting or declined for specialist care.

Endometriosis - the facts

• Endometriosis is a common inflammatory disease estimated to affect 176 million individuals worldwide in their reproductive years.
• It affects at least 120,000 New Zealanders - roughly 1 in 10 girls, women and those assigned female at birth.
• Endometriosis occurs when tissue similar to the lining of the uterus (endometrium) is found in places outside of the uterus. It can be also be found on the pelvic ligaments, ovaries and bowel.
• In most cases, there can be symptoms including period pain, pelvic pain and sub-fertility or infertility.
• The cause of endometriosis is not fully understood, though it is generally considered multi-factorial with a strong genetic link.
• Endometriosis seems to run in families, so you are more likely to have it if there is a family history.

What are the symptoms?

• Pain with periods (dysmenorrhoea) is often the most common symptom.
• Bowel problems like bloating, diarrhoea, constipation, pain with bowel movements, painful wind - sometimes diagnosed as IBS.
• Painful intercourse (dyspareunia).
• Sub-fertility or infertility.
• Tiredness and low energy.
• Pain in other places, such as the lower back.
• Pain at other times, eg with ovulation or intermittently throughout the month.
• Abnormal menstrual bleeding.
• Bladder troubles like interstitial cystitis (IC).

Source: Endometriosis New Zealand. For more information, click here.

Anna Leask is a senior journalist who covers national crime and justice. She joined the Herald in 2008 and has worked as a journalist for 19 years with a particular focus on family and gender-based violence, child abuse, sexual violence, homicides, mental health and youth crime. She writes, hosts and produces the award-winning podcast A Moment In Crime, released monthly on nzherald.co.nz.