Amanda Giddens went from running a marathon and hiking in Nepal to being dependent on ACC after surgeries, including the removal of her ovaries.
As the health watchdog publishes a critical report, Nicholas Jones finds women are more likely to undergo procedures without being able to properly consent.
The surgeon was sure: her ovaries would need to come out, along with the tumour.
“He said, ‘Your left ovary is squashed and completely damaged, and your right ovary is damaged as well,’” recalls Amanda Giddens.
Afterwards, the 47-year-old went into surgically-induced menopause.
She was shocked by the severity of her symptoms, and again when she read in the post-operative report that her ovaries were “normal”, and separate from the mass.
Giddens complained to the country’s health watchdog, the Health & Disability Commissioner, and in March it released a decision that criticised the surgeon involved, for not obtaining her informed consent.
Names were redacted, but Giddens is speaking about her ordeal - a domino-effect of concerning treatment spanning a decade - to protect others, particularly women.
“I signed the consent form, because that is what I believed, because that is what I was told.”
A former life
Giddens grew up in Glenfield on Auckland’s North Shore, the youngest of eight (four boys, four girls) born to her South African mother and English father.
She left for Australia at 18, and at 21 moved to the UK, where she trained in fitness and nutrition, and worked as the training manager for Reebok Fitness Equipment, which took her around the UK, Ireland and Europe.
Life outside work was active, too; rock-climbing, white-water kayaking, cycling and mountain biking were hobbies, and Giddens raced the London marathon and triathlons. Her choice of holiday was a month hiking Nepal’s Annapurna Circuit.
After more than two decades away the shock of her father’s death brought her home.
She returned to university, studying outdoor recreation and leadership, and felt her 40 years among younger classmates.
“I went to ten 21st parties, and was in the kitchen with the parents and the aunties.”
A dream job with outdoor activities company Bigfoot Adventures followed, based in beautiful Raglan. The midlife gamble to return home was paying off, until an afternoon in March, 2013.
“I was talking to the neighbour, and thought, ‘I don’t feel great’, and went upstairs and had this massive attack of pain,” she recalls.
“When the ambulance arrived I was unresponsive.”
Tests at Waikato Hospital found gallbladder disease. After another attack of pain, keyhole surgery was booked for March 22, 2013.
It should have taken an hour. Giddens went under about 9am, and regained consciousness in the early evening.
The mistake was a junior surgeon’s. He made a small incision below her belly button but pressed too hard (about 4cm too deep).
That nicked the junction where the largest artery in the body branches into the left and right vessels that carry blood to the legs.
Her stomach filled with blood. The supervising surgeon cut her open and, feeling blindly, clamped his fingers down.
A theatre full of medics battled for hours to save her.
In the days afterwards, she lay in bed covered in tubes and equipment.
A tube down her throat made her panic, and she vomited the heavy hospital food. Her stomach drain was roughly and painfully removed by a nurse. The room was baking hot.
After 12 days in hospital, she insisted on going home, against medical advice.
No verbal or written advice was given about the recovery ahead, she says, and she wasn’t warned about the risk of deep vein thrombosis (commonly called DVT, a condition where a blood clot develops in a deep vein), despite being noted in her hospital file as at high risk.
Her stomach soon felt increasingly bloated. A CT scan done at Waikato Hospital on April 11 2013 showed a large mass in her pelvic region.
Giddens didn’t see the results but was told she had hematomas, which are pools of clotted blood usually caused by a blood vessel broken by surgery or injury.
They would disperse by themselves, she was assured.
On April 21 she woke to what felt like a pulled muscle in her left leg, which by evening was swollen, painful and purple.
Her partner Brigitte wanted to drive to hospital, but Giddens resisted, given the late hour and storm raging outside.
Brigitte’s insistence saved her life - she fetched an orthopaedic surgeon holidaying two doors up, who took one look and ordered them to hospital, “or she won’t be here tomorrow”.
Giddens had a blood clot from her knee to above her belly button.
An incision was made in her thigh and a tiny tube with a device on the end (“like an egg beater,” Giddens says) was threaded up her blood vessel, to clear the path.
The procedure was incredibly painful and took more than an hour.
The vein re-clotted twice more in the following days, and Giddens was told nothing more could be done - she’d go on blood-thinners for 9-12 months, and have twice-weekly blood tests.
She left on crutches, and with Class II compression stockings from her toes to her groin, to be worn during the day and so tight it was an ordeal getting them on and off, even with help.
It soon became impossible to lift up the front part of her foot, a condition known as foot drop.
Work was out of the question, and Giddens needed help for even simple tasks. She spent time at her sister’s in Auckland, and her relationship and mental health suffered.
“We both changed a lot during that time. I was just waiting for the next thing to happen. She was waiting for the next thing to happen,” says Brigitte, who remains Giddens’ close friend despite their eventual break-up in August 2013.
“It was hell. And yet she was amazing - so positive for so, so long. She was more worried about everybody else. But I guess by doing that, wasn’t looking after her own feelings.”
Over this period Giddens’ stomach discomfort worsened - “like I was five months pregnant,” she says. She constantly had to go to the toilet and suffered shortness of breath and chest pains.
Her GP sent her to Waikato Hospital repeatedly, where on May 31 another CT scan was done, which showed a large mass, noted to be largely unchanged since the previous scan.
Staff told her the results showed a single remaining hematoma, which would disperse - assurance repeated after another CT scan on August 20.
Finally, her worried GP sent her for a private ultrasound. Giddens’ phone rang right afterwards.
“My doctor said, ‘You have a massive tumour. We need to sort this out right now.’”
‘Undoubtedly ovarian in origin’
The growth of smooth muscle measured 15 by 10cm.
It was likely it had been present in some form since before her botched gallbladder operation, a sceptical Giddens says she was later told by the surgeon who removed it.
That is at odds with assurances from Waikato Hospital to Giddens that “pre-procedural scans did not show any evidence of masses in your pelvis which ruled out a pre-existent lesion”.
Regardless, the mass wasn’t diagnosed in the months following the gallbladder surgery, because her scan results and symptoms were wrongly attributed to the haematoma in the same area.
Despite this oversight, Waikato told her GP that a specialist appointment about removing the tumour wouldn’t be possible for at least 2-3 months.
Giddens had recently taken out health insurance, so was soon under the care of Dr Andrew Mackintosh, a senior gynaecologist and obstetrician who was, at the time, director of Ascot Central Women’s Clinic, a major private provider in Greenlane, Auckland.
The ultrasound report had noted Giddens’ ovaries were of normal appearance, and separate from the mass.
However, Mackintosh wrote to her GP, saying the large mass “is undoubtedly ovarian in origin but I will review that MRI [done earlier in the month] with our radiologists before she has surgery”.
“She needs the mass removed,” Mackintosh wrote. “It would be best to remove both ovaries and take an omental biopsy at the same time.”
Testing after the October 8 2013 surgery confirmed the fibroid (leiomyoma) tumour was benign.
Mackintosh wrote to Giddens’ GP, noting, “Both the ovaries were normal but they have been removed”.
“Her uterus has been retained but she is now menopausal.”
That change was severe, and something Giddens says she is still greatly affected by.
Most nights she goes through a cycle; a feeling like electric shocks running down her legs, terrible nausea, then extreme thirst, followed by hot flushes.
“Any one of those will wake me up, and I have to wait for it to go,” she says. “And that could happen three, four, five times a night.”
A good night is two hours of uninterrupted sleep.
She cannot have hormone replacement therapy, because of her history of blood clots, and has been advised she’s at greater risk of heart disease (worrying given her father died from a heart attack and her brothers have had major cardiac surgery) and other problems including osteoporosis (she’s had a shoulder replaced, joint pain and below-average bone density.)
After receiving the post-operative report Giddens consulted a lawyer, who dissuaded further action.
Life continued to unravel. The home she shared with Brigitte was sold, and Giddens sent her Golden Labrador, Indie, to friends while she moved around, eventually living in a 1970s caravan on her sister’s land at Matarangi.
“I lost hope. I didn’t want to be around anyone, including my family. I was so very low.”
Her foot drop, swollen leg and pain affected her gait, leading to knee damage that required surgery.
On top of everything else, the wound from the gallbladder operation and aorta injury kept getting infected, and spread and thickened, leading to numerous surgeries, one of which removed her belly button.
These came with new complications, including internal bleeding.
Last year was the first since 2013 when she didn’t go under the knife - a physical ordeal of 13 surgeries matched by the mental toll of having those dates loom in her diary.
In July that tally increased again, when she had more knee surgery.
“Once I know a surgery date, that’s it - what little sleep I’m getting is gone, I have panic attacks, I feel sick leading up to it, I lose weight,” she says.
“It plays on my mind from the time I get a date for the surgery until I wake up in post-op, and check myself straight away for extra or unexpected equipment.”
Giddens can manage two days a week of work for Bigfoot, covering less-physical roles including bike skills instructing and mentoring.
ACC pays 80 per cent of her wage to cover the remainder. She’s periodically returned to full-time hours but has always burnt out within a couple of months.
“Even with the recent knee surgery, she’s just keen to get back out there,” says her boss, Kris Bartley. “It’s a constant battle for her.”
ACC and impairment
Giddens has fought ACC over her support, including its April 2015 decision to decline cover for the loss of her ovaries.
She challenged that stance in 2017, and ACC got expert opinion from obstetrician and gynaecologist Dr Digby Ngan Kee.
“In the absence of histology indicating a malignancy, or any clear indication that the mass was arising from the ovaries, bilateral oophorectomy [removal of both ovaries] was not required as primary treatment for this mass,” Ngan Kee concluded.
“Dr Mackintosh may have been trying to save Ms Giddens from a further operative procedure, but the benefits of this needed to be weighed up against the risks of bilateral oophorectomy at Ms Giddens’ age. These risks relate to causing a premature menopause, resulting from the removal of ovarian hormone production.”
Recent research has found that ovaries have significant endocrine function (creation and release of hormones, which regulate a range of bodily functions) after menopause, he advised.
Removing them may increase the risk of cardiovascular disease and osteoporosis, Ngan Kee advised, something noted in guidance from the College of Obstetricians and Gynaecologists (Ranzcog).
“Overall, there is an increase in all-cause mortality if ovaries are removed prior to the age of 55 years,” Ngan Kee wrote.
“Most gynaecologists are reluctant to remove normal ovaries before the age of 55 years without careful discussion regarding the risks and benefits to that particular individual.”
ACC overturned its decision, which increased Giddens’ “impairment rating”, which is periodically assessed by an occupational physician and runs from 0 per cent (normal mental or physical function) to 100 per cent (total loss of function).
The loss of her ovaries equated to 5 per cent impaired. Together with her other injuries she has a total impairment rating of 29 per cent - worth $15,342 in compensation, spread over the past 10 years.
That includes for mental injury, some of which (ACC wouldn’t say how much) relates to the bilateral oophorectomy.
The process is dehumanising - assessors measured her abdominal scar and the circumference of her swollen leg to determine impairment - and the compensation was inadequate, Giddens says.
ACC’s deputy chief executive of service delivery, Amanda Malu, told the Weekend Herald the corporation was constrained by legislation when considering permanent injury compensation.
She acknowledged Giddens’ frustrations with that process, which considers only impairment, and/or the loss of function of a body part or organ.
“Pain, suffering, or trauma related to the injury that occurred are not part of this assessment,” Malu says.
An explanation, and apology
Giddens complained to the HDC in May 2019.
Mackintosh submitted that the “prime drivers” for removing her ovaries were his view that the mass shared a blood supply with the right ovary, and it possibly being reliant on estrogen to grow.
Ovary removal may also have been necessary for histological examination (testing of tissue including for malignancy), he stated.
If the tumour was found to be malignant, re-operating could be lethal, he told the HDC, “so it would be very unwise to leave a surgical situation that risks another operation.”
“The uninvolved ovary would have some chance of containing similar pathology to the left ovary. It was important to perform the appropriate surgery to avoid a second operation if the mass was malignant or hormone dependent.”
The interpretations of the various scans performed varied considerably, Mackintosh said, from a hematoma to “malignancy cannot be excluded”, and his physical examination led him to believe the mass was likely ovarian.
This reasoning was explained to Giddens, he stated. However, there is no official record of exactly what was discussed, including the possible health effects of losing her ovaries.
In earlier comment to ACC, Mackintosh stated that Giddens was told of the risks of removing her ovaries, including possible menopausal symptoms of hot flushes and mood changes, but at her age (47), “I do not know of any particular risk to her long-term health”.
(Giddens claims his only comment on this subject was, “You may bleed [menstrually], you may not.”)
Mackintosh discussed the case with a multidisciplinary team on the morning of the operation, and with another doctor who supported his planned approach.
During the operation, he noted the ovaries were “separate from the mass and normal”.
“The right ovary was removed due to it sharing a blood supply with the tumour, and the histological sample required (wide margins, ideally clear of microscopic malignant deposits),” he later reiterated to the HDC.
“The left ovary was removed to prevent oestrogen production that may contribute to the development of disease (if present).”
When testing later confirms a tumour is benign, “it is understandable that a person may not fully comprehend the necessity of their surgery,” Mackintosh stated.
“This risk must be balanced against inadequate and potentially dangerous limited initial surgical management in the case of malignancy.”
Deputy Health & Disability Commissioner Rose Wall sought expert advice from obstetrician and gynaecologist Dr Ian Page.
“There is nothing in the documents supplied to explain why Dr Mackintosh felt the mass was ovarian, when the ultrasound and MRI were quite clear that both ovaries were normal and the mass was arising from the myometrium [the muscular outer layer of the uterus],” Page wrote.
“I cannot understand where that belief came from, given the MRI and ultrasound reports both said the ovaries had been identified and were normal.”
In his view, the surgical options that should have been carefully discussed were:
* Simply removing the mass.
* A total abdominal hysterectomy, to remove the mass and the uterus from which it was arising (including the cervix).
* A total abdominal hysterectomy, and bilateral salpingo-oophorectomy (removal of ovaries and fallopian tubes), to stop further periods and reduce the risk of developing ovarian cancer in the future.
Most gynaecologists would have suggested removing the whole uterus, Page submitted, because Giddens was unlikely to try to have a child.
“I therefore believe that Dr Mackintosh made a severe departure from the accepted standard of care in this case, which would be viewed with severe disapproval by his peers,” Page advised.
In Page’s opinion, Mackintosh “proposed the wrong operation, and even when he saw the ovaries were normal carried on with their removal.”
In further advice, requested by Wall, Page stated: “I accept the rationale Dr Mackintosh has given for the removal of Ms Giddens’ ovaries, but that rationale would then require (as I noted previously) the removal of the uterus in its entirety.”
Page was also asked to comment on the long-term health effects of a bilateral oophorectomy, something he was equipped to do, as a member of the Ranzcog committee that wrote the official advice.
The evidence is conflicting, Page told the HDC; one large study suggested the loss of ovaries is associated with “an increased risk of all-cause mortality along with fatal and non-fatal coronary heart disease”, but another found no link with increased risk of coronary heart disease, hip fracture or death.
The Ranzcog guidance is, however, “quite clear” that removal of the ovaries before menopause is associated with more severe and prolonged vasomotor symptoms (including hot flushes and night sweats) than those seen in natural menopause, as well as reduced libido and more sexual dysfunction.
Deputy Commissioner Wall was not critical of Mackintosh’s decision to remove Giddens’ ovaries.
“Guided by Dr Page’s advice, I accept Dr Mackintosh’s rationale … given the perceived risk of malignancy and of re-operation if the mass was not removed in its entirety.
“However, I am concerned that Ms Giddens was not provided with the information that she could have expected to receive to enable her to make an informed decision on whether or not to consent to the procedure,” Wall wrote.
“I consider that Dr Mackintosh should have explained the lack of clarity around the origin of the mass and the other options available.
“Ms Giddens was not in a position to make an informed choice.”
That failure related “solely to individual clinical error”, concluded Wall, who found no fault with the systems in place at Ascot. Mackintosh, who is now retired, in March provided a written apology to Giddens, something recommended by the HDC.
“I have reflected on events and the report and understand that in providing care to you, I did not provide you with adequate information to allow you to make an informed decision and provide your informed consent,” he wrote.
“I understand that more thorough discussions could have taken place … I have read of the distress you suffered following the procedure and that you feel you received very little information with respect to the surgery.
“For this, I am truly regretful, and I offer my sincere apologies for my failure to provide more detailed information to you.”
An issue of consent
Under the law, somebody receiving a health service has the right to be fully informed, which includes an explanation of their condition, the treatment options available, and the expected risks and side effects.
The Weekend Herald has reviewed HDC decisions released in the past five years, and found women account for 49 of the 69 cases where this right was breached.
That includes another case where a woman’s ovaries were removed.
Thirty minutes prior to the August 2020 surgery to remove her uterus and fallopian tubes a Palmerston North Hospital consultant recommended taking out her ovaries, as well.
“The woman felt pressure to go along with that plan. It was not appropriate to introduce such changes to the woman’s surgery so late in the process,” concluded Morag McDowell, the Health and Disability Commissioner.
Other cases include:
- A woman with recurring UTIs, bleeding and pain underwent surgery and had a catheter inserted. She died of sepsis soon afterwards, and the HDC found she wasn’t properly informed of the possibility a catheter would be used, and the associated risks.
- Multiple women suffered severe pain and complications after their gynaecologist used surgical mesh, without explaining the risks or alternatives.
- A medical student helped insert an IUD for long-term contraception, watched by other students - but the involvement of medical students was unconsented. In another case, a GP took an unnecessary and unconsented biopsy while inserting an IUD.
- In two cases, women weren’t warned medication could cause severe birth defects, and they subsequently became pregnant. One underwent terminations as a result.
- Pregnant women weren’t told critical information, including that monitoring showed their baby was in distress. During her first pregnancy a woman wasn’t properly told of her options when she needed a growth scan, and her baby was later stillborn. Another woman wasn’t informed of the option of active treatment until she was in advanced labour at 23 weeks gestation, and unable to engage in conversation. Her baby lived for five hours, but wasn’t reviewed by a doctor until after his death.
- A midwife told a woman in labour that she’d given her pain relief, when it was saline.
The creation of the HDC to investigate such cases happened after Judge Silvia Cartwright’s 1987 inquiry into the “Unfortunate Experiment” at Auckland DHB, in which women with cervical abnormalities were studied without knowledge, consent or proper treatment.
University of Auckland law professor Jo Manning is in the Cartwright Collective, a group committed to ensuring the inquiry’s lessons remain at the heart of the health system, including patients’ right to the high-quality information needed for informed decisions.
Things have come a long way, she says, but under-staffing in the health system is concerning.
“Sitting with a patient and going through the risks and benefits of the recommended course of action, discussing the alternatives - it all takes time.
“When you have scarce resources, the risk is that those conversations won’t be had.”
‘She just wants to get on with it’
Giddens, now 57, believes her story highlights other systemic problems, including patients not being listened to.
“They knew my body better than I did. But I’ve spent 50-odd years in this body - I kind of know it.”
The past 10 have been a nightmare, survived with the love of family and friends who marvel at her resilience but know the cost.
“I see the anxiety,” her older sister, Jill Harvey, says. “The tiredness. But her positivity, and wanting to live life to the fullest - that’s even more pronounced.
“She doesn’t feel sorry for herself.”
The sisters both live in Ōrewa, where Giddens and her partner, Dr Kathy Ruggiero, a senior lecturer in statistics at Auckland University, recently moved.
The couple’s bond was instant, but Giddens hesitated.
“Amanda kept saying, ‘Look, I’ve got a lot of medical issues and a lot of people would find it difficult being in a relationship with me,” Ruggiero recalls.
“We’ve been together two years, she’s already had three surgeries. [In the months before] her anxiety is through the roof - she doesn’t sleep.
“But she doesn’t want to show it, she just wants to get on with it. She loves life in a way I’ve never known. She’s a pretty amazing soul.”
Nicholas Jones is an investigative reporter at the New Zealand Herald. He won the Best Individual Investigation and Best Social Issues Reporter categories at the 2023 Voyager Media Awards.