In Her Head: Women's health - endometriosis surgery wait times up to three years

Paris McNeilage, 20, was declined a specialist appointment at Counties Manukau DHB for suspected endometriosis because of capacity. She spent months in crippling pain. Photo / Michael Craig

In Her Head is a Herald campaign for better women's health services. Health reporter Emma Russell investigates what's wrong with our system and talks to wāhine who have been made to feel their serious illness is a figment of their imagination or "just part of being a woman".

Warning: This story discusses suicide and may be distressing for some readers.

Women are thinking about taking their own lives while waiting for surgery to treat suspected endometriosis, as some experience delays of up to three years.

That's after many women have waited years, sometimes decades, to get a referral to see a specialist, as their disease was often mistaken as "just a bad period" or part of being female.

A Herald investigation has found how long you wait for surgery to diagnose and treat suspected endometriosis - after being referred to a specialist - depends on where you live.

In some regions, the longest a patient waited was seven months, but in other areas it could be up to three years.

Counties Manukau DHB says it is not even taking any referrals for pelvic pain because it only has capacity to treat potentially life-threatening conditions such as cancer.

Endometriosis is a disease in which tissue from inside the womb grows in other places of the body, causing intense pain and heavy bleeding. It affects at least one in 10 people born female.

On average, women in New Zealand wait 8.7 years from onset symptoms to be formally diagnosed. During that time, the average number of doctors they see is five, research by the Medical Research Institute of New Zealand revealed in March.

The delays can be life-threatening, as some women become suicidal because of the pain.

Endometriosis patients the Herald spoke to were left unable to work, socialise or even get out of bed.

"I got to the point where I felt like I couldn't go on, I did start to feel suicidal - not because I wanted to die, but because the pain was so unbearable," Paris McNeilage said.

The 20-year-old had to change her address to be treated after Counties Manukau DHB declined her referral, saying it didn't have capacity. Even then, she waited eight months and it was only when she was on the phone to her doctor crying that she finally got the surgery which confirmed and treated endometriosis.

"A massive component of endometriosis is psychological," said advocate and sufferer Kirstie Klingenberg, a former Olympian who is currently completing her master's on looking into the impact of endometriosis on athletes.

"[Women with endometriosis] don't just need help for their physical symptoms but also their mental state, because people with endometriosis do have really high rates of depression and suicidal thoughts."

A 2019 survey of 13,500 women conducted by the BBC and Endo UK found 50 per cent of those with endometriosis had experienced suicidal thoughts.

Several international studies have reported similar findings. One American study found women with endometriosis were 1.4 times more likely to experience anxiety, 1.5 times more likely to become depressed and twice as likely to harm themselves, compared to those who had never had the disease.

The only way to know for sure if a patient has endometriosis is by a surgical procedure called laparoscopy, which allows the surgeon to examine the pelvic organs.

During this procedure, tissue can be removed for testing, and endometriosis lesions can also be taken out in a bid to relieve pain.

While some patients have dramatic improvements, others, often those who have experienced long delays, require further treatment including removal of the ovaries and/ or their uterus. This means becoming infertile.

Data released to the Herald under the Official Information Act showed that in the year leading up to September, women were waiting up to three years for an operation after being referred to a specialist - and how long they waited could depend on their address.

From the 14 DHBs which recorded the information, women living in Northland experienced the longest waits. It took up to a year to see a specialist for pelvic pain and then up to two years to get surgery for suspected endometriosis after that.

Inconsistencies in the data provided made it difficult to see the full picture. Auckland was unable to provide many of the figures supplied by other DHBs, Counties-Manukau's figures related to endometriosis specifically rather than pelvic pain and Wairarapa supplied data for all gynaecological cases.

Even so, the differences between regions were stark.

The Government this week announced that all waiting lists would be managed nationally under the health reforms.

Northland DHB surgical and support services general manager Mark McGinley declined to comment on why Northland's waiting times were noticeably longer than other DHBs.

However, he said the DHB had opened up additional theatre capacity, which was the "first increase in surgical capacity in over 30 years".

"Additionally, we have increased senior medical officer [SMO] resources in recent years and are also seeking to recruit advanced trainees in order to increase our capacity."

In Wairarapa, the longest wait for a specialist appointment was five months and for surgery it was two months.

Wairarapa DHB chief executive Dale Oliff said some patients who had extensive endometriosis were diverted to other centres if it appeared the bowel or bladder had been affected.

He couldn't comment on why Wairarapa DHB's waiting times were significantly shorter than other parts of the country, but said they did their best to see patients in a timely manner.

Australia had in the past few years taken significant steps to better care for endometriosis, including allocating $16.4 million to set up specialised endometriosis clinics in every state and developing a research programme into the disease, which is now up and running.

Auckland gynaecologist Dr Michael Wynn-Williams - who is also a Endometriosis New Zealand board member - said New Zealand needed to be following suit.

"To do that, we need an action plan and that needs to be part of the women's health strategy. We need to do better for women with endometriosis," he said.

Born and raised in New Zealand, Wynn-Williams has worked in Australia for most of his career but decided to come back, partly to help train gynaecologists to be able to perform advanced laparoscopic surgery.

Wynn-Williams said only 11 gynaecologists in New Zealand had advanced laparoscopic training. There were at least 136 working in the public hospitals across the country.

In September 2020, Prime Minister Jacinda Ardern said, "women shouldn't exist in a life of pain" and more research was needed on the condition.

"I do think that there's often poor diagnosis, that leads to poor treatment, that leads to a huge amount of suffering," Ardern said.

Health Minister Andrew Little also said in 2020 "we must do better" for those with endometriosis - comments labelled "patronising" by Endometriosis New Zealand given the lack of action on treatment since.

Associate Health Minister Dr Ayesha Verrall said the Government was aware of the delays and was working with interim Health New Zealand on developing a comprehensive plan to reduce waiting lists across the country once the burden of Covid-19 started to decrease.

To improve access to services for endometriosis, the best-practice guidance Diagnosis and Management of Endometriosis in New Zealand was developed in 2020 by the Ministry of Health, Verrall said.

"It is expected that this will improve the quality and consistency of clinical practice in the diagnosis and management of endometriosis."

She would not answer whether specialised endometriosis clinics could be set up in New Zealand.

Where to get help:

• Lifeline: 0800 543 354 (available 24/7)
• Suicide Crisis Helpline: 0508 828 865 (0508 TAUTOKO) (available 24/7)
• Youth services: (06) 3555 906
• Youthline: 0800 376 633
• Kidsline: 0800 543 754 (available 24/7)
• Whatsup: 0800 942 8787 (1pm to 11pm)
• Depression helpline: 0800 111 757 (available 24/7)
• Rainbow Youth: (09) 376 4155
• Helpline: 1737
If it is an emergency and you feel like you or someone else is at risk, call 111.

Follow women's personal stories of poor healthcare in our interactive grid below. Click on a face to go to the full story.