No end in sight: The reality of having endometriosis in New Zealand
Originally published by Woman Magazine. Written by Sasha Borissenko
Endometriosis affects an estimated 10 to 11.7 percent of people assigned female at birth. Research and funding is lacking in New Zealand, there are barriers to getting a diagnosis, and testing can be extreme. Is this a newfound illness or a history of silence?
Tara Forde, 34, once taped four boiling hot water bottles around her abdomen to cope with her period pain. She thought she'd wet herself, only to find that one of the water bottles had burst. The third-degree burns were no comparison to the pain of the suspected endometriosis.
Endometriosis is a chronic inflammatory disease in which one's uterine lining, or endometrium, grows outside of the uterus to the point where it can reach the sufferer's ovaries, bowel, diaphragm, scar tissue, belly button, and even lungs, often fusing organs together. Research has shown that the lifetime effects on a person's work, education, and fertility can be just as destructive as cancer.
Despite two laparoscopic surgeries at 19 and 28, doctors couldn't find anything so Tara has never had a formal diagnosis. Doctors equally haven't ruled it out. She was on waiting lists for almost a decade. Globally, delays in diagnosis range from seven to 12 years. In New Zealand, a recent EndoCost study found patients experienced a delay of eight years and seven months.
Tara Forde, 34, was frequently told by doctors that having a baby would "cure" her endometriosis, but there is no real evidence behind this claim.
Exploratory keyhole surgery is one of the only ways to get a formal diagnosis. If endometrial tissue outside of the endometrium is found on other parts of organs it can be cut out or burnt off.
The results of the surgeries were a relief at first for Tara, but nothing has been able to explain the pain that's continued into her adult life. "I had about seven hospital admissions and I'd be screaming to the point where they'd have to sedate me. Because there's no testing, you start to think that you're crazy and it's all in your head."
Even if doctors were to find endometriosis and cut or laser it out, it can grow back. Research from the UK suggests 60 percent of people who have surgery will go on to have another. Half of those will have surgery within five years.
The "walking womb" effect
Doctors have regularly told Tara to have a baby for pain relief. "Choosing to have a baby is a pretty life-altering decision. You should want to have a baby not just to alleviate your period pain but because you're in a good position to do so."
One of the problems is that endometriosis is seen as a fertility or "women's issue", she says. "It feels like no one really understands what's going on and there's no one to really help you navigate it. The lack of research and support seems like it's just another way of controlling women's bodies."
Dr Michael Wynn-Williams, a leading gynaecologist in New Zealand and Australia, says it's important to inform patients of their fertility options, but pregnancy has never "cured" endometriosis. Rather, it's more likely that vaginal childbirth, which affects nerves and the pelvis, will alter the way people experience pain.
The gender pain gap
Endometriosis is an enigma and there are many things the scientific community still doesn't understand, says Dr Wynn-Williams. It stems from misogyny in medical research. "The majority of research has been done by men on men, particularly around pain. It's why we don't know a lot about women's bodies. It's historical, but it's changing."
Coined "the gender pain gap", studies show men wait an average of 49 minutes before receiving pain medication in instances of acute abdominal pain. Women wait an average of 65 minutes.
While there are increasingly strong theories around genetics, immunological and environmental factors abroad, there's virtually no New Zealand based research or funding for research, Dr Wynn-Williams says.
"We need to know about our own population, particularly in terms of equity and accessing services. We also need long-term data where we look into lots of patients – collect their data and histories, and learn what happens to them long-term.
"When patients come to us we're essentially the ambulance at the bottom of the cliff. Investing in research would eradicate this issue."
Barriers to healthcare
Tara has found solace in wraparound services, including physiotherapy, a nutritionist, counselling for pain management, exercise services, and fertility specialists. She says they should be available to and embraced by all endometriosis sufferers because "there's nothing to lose by doing all of the things to take care of yourself".
Equally, the costs are a barrier, she says. The public health system may be free but the waiting times and referrals are tedious, and there are costs associated with going to multiple GPs, childcare, ambulance fees, taking time off, travelling to appointments, and annual leave when you've surpassed your sick leave entitlements.
"It's too easy for people to fall through the cracks. You're either engaging with the hospital system or waiting for specialists that are impossible to access. Then there still aren't any answers. You just kind of get kicked around until it resolves itself, you keep trying, or you give up and spend your life on opioids."
Dr Wynn-Williams conducted a survey that was sent to the clinical directors of obstetrics and gynaecology departments in 2020. It found that 80 percent of District Health Boards didn't have a dedicated endometriosis clinic; 35 percent of stage four patients would be referred elsewhere; and only 30 percent of DHBs had multidisciplinary pelvic pain clinics. There are just 21 public gynaecology surgeons who specialise in advanced endometriosis surgery in New Zealand; most of them are based in the North Island.
Working in Brisbane, he had patients coming from all areas of Queensland. Their flights and accommodation would be paid for; the same needs to happen in New Zealand for patients who need that level of care, he says. "At the moment there's no coordination around the country; it means we've got a postcode lottery system."
Ministry of Health chief medical officer Dr Robyn Carey says DHBs are responsible for assessing the health needs of their local populations and making decisions about the level and mix of services to provide to meet these needs.
Patients who are referred to a DHB service are assessed and prioritised by clinicians to ensure those with the greatest need and potential to benefit from treatment receive the highest priority, Dr Carey says.
"The Ministry of Health is working closely with DHBs to support them in managing hospital treatments and increase people's access to surgeries and consultations that may have been delayed."
Sweeping health reforms were announced last year to address equity issues in the sector. The Pae Ora (Healthy Futures) Bill passed in June, and as a result, the 20 DHBs were replaced on July 1 by Crown entity Health New Zealand, which will work in partnership with the new independent Māori Health Authority.
The legislation specifies that there will be a Women's Health Strategy. Associate Minister of Health Dr Ayesha Verrall says, "There will be opportunities for women and for those involved in women's health to contribute to the development of the strategy."
Associate Minister of Health Dr Ayesha Verrall: "It's important we act now."
Money wasn't specifically allocated in Budget 2022, and work to develop the strategy is being funded out of the Ministry's baseline. The Gender Justice Collective – a non-profit – has estimated the strategy could cost $6 million. However, it's important we act now, Dr Verrall says, rather than wait for a strategy to be in place. She's fast-tracked initiatives such as breast and cervical screening, contraception, maternity services, maternal mental health, abortion services, surgical mesh, endometriosis, and sexual and reproductive health.
Medical trauma
Lydia Cole, 34, has experienced terrible periods since she was a teenager. But it was only in 2019, when she stopped working as a result of chronic fatigue and burnout, that she sought help from a GP. She was referred to a gynaecologist and was formally diagnosed after the exploratory surgery six months later.
"I felt like I was one of the lucky ones because I wasn't told I was imagining things – I wasn't gaslit like I know other people have been," she says. "It was good news to wake to – that there was a diagnosis of endometriosis and it had been taken care of. But I was sent home with only Panadol because my stomach issues meant I couldn't take anti-inflammatories, and the pain was unmanageable. I couldn't sleep for three nights. I was in a really bad state."
Lydia went back to the hospital and was told everything was fine as she'd just had surgery. The following night her body started convulsing as a result of a panic attack triggered by the unbearable pain, sleep deprivation, and anxiety around what felt like a lack of post-op care.
Musician Lydia Cole experienced medical trauma because her issues with endometriosis were handled so poorly, she says.
"I was terrified and I freaked out," she says. "You have this huge surgery, you come out with a diagnosis but you still have pain and you're left out in the cold."
Months after the surgery, Lydia went to the hospital for an unrelated procedure and found herself in tears being back in the hospital environment. She had experienced medical trauma. Had there been another avenue to diagnosis other than surgery, she would have taken it.
Surgery isn't always the answer
Dr Wynn-Williams says having a diagnostic laparoscopy to diagnose endometriosis isn't the be all and end all and the medical community needs to move away from it. Radiological procedures such as ultrasounds and MRIs pick up 20 percent of advanced endometriosis cases, but New Zealand lacks experienced operators. "Standard operators will see a uterus, ovaries, and cervix but you need to know what to look for. It's why we need to develop specialist radiology imaging centres around the country."
A gentle vaginal examination and careful analysis of a person's medical history can also lead to a diagnosis, he says. "It can be a big advantage to patients because you immediately can tell them about endometriosis and validate their symptoms. And you'll often have patients crying on the end of the bed because they're confirming immediately without having to do a laparoscopy."
After the surgery, Lydia had to start from scratch. "Every doctor says I should go on birth control and every time I tell them, taking hormones makes my life feel not worth living. At no point have they thought, 'maybe I should put that on her file.' Being repeatedly recommended a treatment that threatens my mental health makes me feel invisible and unsafe in their care.
"It all feels like a big mess in my head because I still don't have a clear path forward, I still feel pretty lost. It feels like the health system is trying to appear as though it is treating us, rather than actually acknowledging the gaps and treating us with respect and the latest information."
Her issue is with the system, and not the people working in it, she says. "It just feels like the system is not set up to help them help me."
Dr Carey says the best practice guidance around diagnosis and management was developed and launched in 2020. They help to focus support, improve consistency, and reinforce a standard approach. They were distributed to all DHBs and have since been marketed accordingly.
"The Ministry strongly encourages all relevant healthcare professionals to familiarise themselves with the guidance so they can incorporate them into their care," he says.
The Ministry also produced a webinar addressing the disparities in care, the latest evidence, updates in management, and how this impacts general practice, Dr Carey says.
Compounding issues
Rimu Bhooi's life has been hugely impacted by endometriosis. The 22-year-old was studying a Bachelor of Arts but took a year off to recover and investigate what is going on with their body.
Five different GPs told them, "It's just a painful period. It's pretty normal. It's pretty common. Just take some Panadol or ibuprofen and you'll be fine". After years of severe pain, they were referred to a specialist and had their first laparoscopy surgery within a year in 2020.
Rimu Bhooi had to take a year off uni due to the severity of their endometriosis.
Being non-binary, Rimu has experienced gender dysphoria as a result of constantly being misgendered by hospital staff.
"It's been quite upsetting to have to explain to people, 'this is the way that I want you to address me and these are my pronouns.' Don't call me a female or a woman, I'm not those things. I understand I have those organs. But that's not the entirety of who I am."
The endometriosis was taken out, but since the surgery they've been to A&E clinics, emergency departments, and gynaecology appointments more than 20 times. They're awaiting another laparoscopy. Until then, they use aids such as a walker and shower stool when the pain limits their mobility.
"My life has become significantly smaller. I can't walk around town for very long. I can't hold onto a job. I'm home a lot of the time. I maintain relationships online and friends over for dinner but that's been the extent of my social life. "I don't want to understate how debilitating this life-changing condition can be for people. But at the same time I've found incredible friends who have similar experiences and my worldview has changed. There's a great deal of joy in my life."
Rimu also has adenomyosis, which often occurs with endometriosis – but unlike endometriosis it's treatable by way of a hysterectomy. "I have one disease that's curable and one that isn't but at least I can cut out one source of pain."
They won't be getting a total hysterectomy if their ovaries aren't too damaged by the endometriosis, which will keep their options open to have children. "But I think it would be really traumatic for my body to go through a pregnancy."
About a third of patients with endometriosis may experience fertility difficulties, according to Endometriosis NZ.
"I think the chances are a bit too high for me, personally, for my mental well-being," Rimu says. "There's a whole lot of reasons that contribute to me wanting a hysterectomy, but it's my choice."
Dr Wynn Williams says hysterectomies are an option for endometriosis sufferers, but it is important to recognise it's not a cure.
"It's important for doctors not to be paternalistic. We see a lot of people who have been denied a hysterectomy but they don't realise these people have spent a lot of time weighing up their options."
The impact on work
After having to take several days off a month due to pain, Mal Booth, 32, nearly lost her job. Despite having a medical certificate, her employer's human resources department didn't believe someone could be sick so often. She eventually resigned.
"It had a huge impact on me. I was so scared to tell potential employers why I had left my last job and why there were gaps in my CV in interviews. You don't want to say that you actually have been so sick you haven't been able to work."
Mal Booth nearly lost her job because her employer didn't take her pain seriously.
She had her first surgery in 2016. She'd been told she had irritable bowel syndrome and an intolerance to alcohol but the exploratory surgery revealed endometriosis had attached to her bowel.
"Every time I'd go to the toilet I would be crying. The pain was so immense, it would bring me to my knees. Imagine period cramps but on steroids."
In 2019, after trying to get pregnant for a year, Mal was told she would need another surgery to get rid of the endometriosis. In what felt like a miracle, she fell pregnant. Her son is now two.
The endometriosis went into remission for a year following the birth but it came back. A second surgery in October last year found internal scarring on her bowel and uterus. She's been on morphine tablets up until May this year, and is now trialling a chemical menopause implant.
After three years of being unable to work, Mal is now working full-time.
Ministry of Business, Innovation, and Employment labour inspectorate national manager Stu Lunsden says an employee is entitled to take 10 days' sick leave if they have health-related symptoms and are unable to work.
The legislation doesn't prescribe what "sick" means. An employer can't force an employee to have a medical examination but if there's good reason to believe an employee is impaired, they may suspend an employee.
Businesses can develop their own policies and initiatives above those needed to comply with their legal obligations to better support their workforce, he says. Employers cannot discriminate against workers on the grounds of sex, age, and health.
One of those businesses is Hello Period, which employs a "Duvet Day" policy that allows employees to take five additional days of leave a year, as needed.
Founder and marketing director Robyn McLean says that unlike sick leave, "Duvet Days" don't need to be justified. The policy wasn't limited to menstruation because menopause is a big issue too.
"We are a start-up so our staff work extremely hard and we want to look after them as much as we can. Obviously, on the flip-side, start-ups have less money and 'leave' costs businesses money.
"However, we'd be nothing without our staff so whatever we can do within our means to support them is important for us to do and in return we get staff who are loyal and work hard. It's a win-win."
Do staff abuse the policy? "Absolutely not. I know they appreciate it – and we appreciate them."
A (sort of) success story
Radio New Zealand's Susie Ferguson spent much of her 20s in the UK skipping her period while on different forms of the contraceptive pill and taking heavy-duty pain medication.
Although she's always had a high threshold for pain, she's had to miss school, important events, and sometimes work because of painful periods. She'd use reusable instant heat-packs and stuff them into the front of her underwear when the pain was severe.
After suffering from endometriosis for years, Susie Ferguson had no qualms about having a hysterectomy.
As a war correspondent, Susie wouldn't know how long she'd be away for, what situation she was going into or whether she'd ever come back. It meant she'd pack what felt like a backpack-full of pain medication in advance. She had a typical endometriosis diagnosis journey, she says, but it took far too many years to get there.
"You go to various clinicians who tell you, 'This is just part of being a woman' and 'You need to just get on with it'. Then you start to question yourself; this is normal, are you wasting resources and what are you complaining about? Is it really that bad? Am I imagining this? Do I really need to be taking so much codeine?"
After being on a waiting list for four years in the UK, she was formally diagnosed after a laparoscopic surgery. She was frightened to go under the knife for fear the surgeon wouldn't find anything. Then, like a light switch, she came out with a diagnosis and the pain was gone, she says. "It was fabulously liberating."
She stopped taking contraceptive medication to have children. After two miscarriages she fell pregnant with her son at 31 and then her daughter at 35. She had an IUD inserted between her two pregnancies and after.
The endometriosis came back when Ferguson's daughter was four. The pain was searingly painful to the point where she'd be sweating while presenting the Morning Report, she says.
"It was as if I was six centimetres dilated. I can use this terminology as a yardstick because it was at six centimetres when I was giving birth to both of my babies and I'd start sweating from the pain. It would be much harder if you were younger and didn't have access to such a reference."
After jumping through various hoops, the doctor gave her four options: do nothing; continue hormone treatment that was no longer working; have another laparoscopy; or have a hysterectomy. None of those options would guarantee it wouldn't grow back.
"I've had an extremely good experience with New Zealand's public health system. It was like being hit in the face but in a good way. I'd expected to be given the same treatment that wasn't working or that I was crazy, which was the case in the UK."
Two months later, she had a hysterectomy. "I had no qualms about it. I didn't want any more children. It was an easy decision because I didn't have a sense of needing to hang onto [my uterus]. I am not sentimental about my body. It was a part of my body that had given me years of pain so if I had a shot at sorting it out, I was willing to take it."
Nearly five years later, Susie is pain-free.
The Facts:
Endometriosis is estimated to affect 176 million people worldwide and 120,000 in Aotearoa alone. According to a recent Endometriosis NZ study:
Respondents required five visits to the doctor before receiving a diagnosis.
67 percent of respondents said their pelvic pain caused significant problems with their partner.
81 percent of respondents avoided sex because of chronic pelvic pain.
32 percent of respondents said their pelvic pain prevented them from attending work and carrying out basic life tasks in the last three months.
73 percent of respondents were scared to tell their employer about their pain for fear it might affect their career prospects.
Disclaimer: Whilst Endometriosis New Zealand was consulted for this article and provided material that represents the organisations views, the final article is written by Woman Magazine and opinions expressed within the content are solely the author's and do not necessarily reflect the opinions and beliefs of Endometriosis New Zealand.