'Low levels of satisfaction' with healthcare in Canberra for endometriosis, menopause, identified in Women's Health Matters survey
A survey of women in Canberra about the state of their health and wellbeing has revealed large gaps in access and affordability, as well as the staggering statistic that almost half of respondents felt doctors didn't take them seriously.
Megan Phipps isn't even the slightest bit surprised.
She was 20, a university student and otherwise fit and healthy when she started experiencing debilitating abdominal pain five years ago.
It was so crippling, Ms Phipps was struggling to eat, sleep or study.
"I couldn't go out with my friends, I had to decline social invitations, I had to withdraw from university,"Ms Phipps said.
"It was just so pervasive."
Ms Phipps was dismissed by her GP when battling debilitating abdominal pain, which would eventually be diagnosed as endometriosis. (ABC News: Ian Cutmore)
Ms Phipps's general practitioner ordered testing for appendicitis, which came back clear.
"When those tests came back fine, my GP told me it must just be stress," she said.
"He said, 'Take a deep breath, you're a young woman — I think you should do some stress management techniques. Try yoga, try journalling. If it's still bad, come back in a month.'
"I was so shocked. It was really jarring to have my experience dismissed."
Own research led to medical diagnosis
The pain did not subside and Ms Phipps spent the month doing her own research.
She returned to the GP's office and asked whether endometriosis could provide an explanation for her symptoms.
It was that point he referred her to a female GP, who then referred her to a gynaecologist.
Endometriosis meant Ms Phipps was in constant pain and made every-day tasks like cooking difficult. (ABC News: Ian Cutmore)
Nine months later, Ms Phipps had laparoscopic surgery, which confirmed the diagnosis of endometriosis and removed the tissue that was causing her severe pain.
"After the healing process from the surgery, it was like day and night," she said.
"I woke up and, for the first time in nine months, I wasn't in pain — I was in disbelief."
The pain returned last year. The endometriosis had spread to Ms Phipps' bowel, causing a partial obstruction.
She was told by three specialists in Canberra that the surgery she needed, which required a gynaecologist and colorectal surgeon, wasn't available in the ACT.
"They basically said, 'We don't have the resources for that. You'll have to head to Sydney'," she said.
"So, I started googling specialists in Sydney."
Loading...Ms Phipps is not alone in her endometriosis experience.
The results of this year's Women's Health Matters survey shows "overall low levels of satisfaction" with endometriosis healthcare in the ACT.
For the survey, 1,319 responses were collected on topics including health services, mental health, sexual health, pregnancy and birth, as well as family and sexual violence.
Among the respondents with endometriosis, 50 per cent said they were either dissatisfied or very dissatisfied with the care they received.
A lonely and unsupported journey
Another area of healthcare that women felt was lacking in Canberra was in perimenopause and menopause treatment.
The survey asked respondents who had sought support, information or healthcare in relation to either condition in the past two years whether they got what they needed.
"A significant proportion — 36 per cent — reported only getting some of what they needed," the report states.
"While 25 per cent reported getting hardly any or none of what they needed."
Felicity Brazil was suffering through a myriad of perimenopause symptoms — night sweats, hot flushes, brain fog and anxiety — in 2020.
Felicity Brazil says finding a GP who specialises in women's health makes a big difference. (ABC News: Ian Cutmore)
"And I'd just find myself crying," Ms Brazil said.
"I'd be at work and be in tears, and I remember thinking, 'This just isn't me'."
The wait for an appointment with her usual GP was longer than Ms Brazil was willing to endure, so she booked in with a different doctor at the same practice.
"It was a younger woman who hadn't been through it and really didn't know much about it," Ms Brazil.
"She was having to look up online how to help.
"It was really hard because I really needed something that would help."
Ms Brazil's dog Bruno became a constant source of support and companionship in what was otherwhile a lonely medical journey. (ABC News: Ian Cutmore)
Ms Brazil walked away from the appointment with a prescription for anti-depressants and a new-found realisation of the importance of seeing a GP who specialised in women's health.
"What I know now — you can't talk about menopause in a 15-minute chat,"she said.
"It's a whole-of-wellbeing discussion because it's physical and emotional."
Ms Brazil turned to a specialist GP at the Menopause Clinic at Sexual Health and Family Planning, which currently has a three-month wait for initial appointment.
That GP recommended a pelvic floor exam, which confirmed Ms Brazil was perimenopausal and also showed an abnormality on one of her ovaries.
"Within six weeks, I had both of my ovaries and my fallopian tubes out, and I also had a total hysterectomy," Ms Brazil said.
"I then went straight into menopause."
Ms Brazil started the Menopause Cafe in Canberra last year after finding a lack of support available for women at that stage of life. (ABC News: Ian Cutmore)
Although she was supported medically, Ms Brazil found herself with little social support to navigate this next phase of her life.
The experience motivated her to start the Menopause Cafe in Canberra, which meets monthly and offers a safe space for women to share their experiences in an effort to destigmatise menopause.
GPs under pressure
Ms Brazil said the cafe has given her the opportunity to hear other women's stories of navigating the healthcare system.
But it quickly made her realise that her journey was among the more positive ones.
"It's heartbreaking," she said.
"The majority haven't had a good experience, especially initially — some have had medical professionals refuse to give them prescriptions that would alleviate their symptoms because they don't believe in it.
"Other women have told me that they've been showing evidence to their GP and gynaecologist of their symptoms and still not being believed."
Indeed, another concerning finding was that 45 per cent of respondents felt doctors were taking them "only somewhat seriously or not at all seriously" when explaining symptoms or health concerns.
The survey results are difficult for Dr Laura Chapman to hear, but not to understand.
Canberra GP Dr Laura Chapman specialises in chronic disease management. (ABC News: Ian Cutmore)
The Canberra GP specialises in chronic disease management, and said women often landed in her office after having disappointing experiences elsewhere.
"Often women will come to see us saying they have felt dismissed or not taken seriously or they've had symptoms that have been really challenging to manage without being offered solutions," Dr Chapman said.
"Sometimes people will come here quite desperate."
The conditions Dr Chapman's patients most commonly complain about have been previously mismanaged or ignored: endometriosis, perimenopause and menopause.
Dr Chapman said the gender split of medical professionals was "still a very real factor" but added that those conditions were also difficult to diagnose and manage in a standard 15-minute appointment.
"The pressure that a lot of GPs are under to get through patients quickly has a huge impact,"Dr Chapman said.
"It means that they don't have the time to do a deep-dive into symptoms and figure out what's going on.
"If a GP is seeing 30 or 40 patients a day, with that volume and the time pressures attached to that, it's really hard for them to know each patient and appreciate what might be a shift away from their baseline."
Affordability also an issue
Chief executive of Women's Health Matters Lauren Anthes. (ABC News: Ian Cutmore)
Lauren Anthes is the chief executive of Women's Health Matters, the independent think tank behind the survey, which was also conducted in 2023.
She said, just as it did two years ago, this year's survey has brought these ongoing issues around affordability and access to healthcare for women into sharp focus.
The survey revealed around one in five respondents went without medical care or medication as a result of not having enough money.
Ms Anthes said that was a really critical piece of information to use when advocating for change.
"It's a hugely significant statistic,"Ms Anthes said.
"One of the key things will be looking at how we work with government and service providers to make services more affordable.
"And how we ensure that we're identifying those people who can't afford services and how we're making them available."
The need for holistic care
The survey also highlighted the prevalence of sexual and family violence in the ACT — 39 per cent of women had experienced some form of violence at some point in their life, 40 per cent indicated they had experienced workplace sexual harassment and 27 per cent reported experiencing some form of domestic violence.
Ms Anthes said those figures should send a strong message to the ACT government about the need to adequately fund "a whole system, not just parts of a system".
Ms Anthes says the government needs to work on providing holistic care across the entire health system. (ABC News: Ian Cutmore)
"We need to make sure we're funding our frontline crisis services and we're doing that adequately while also looking more broadly than that," she said.
"We know that we've got a range of people who experience violence that may not ever go to a crisis service but who will be accessing healthcare services.
"That's why this dataset is so important — because we can actually look at people who experience violence and also their experiences of the health system.
"We really need to focus on a whole system in terms of violence prevention."
When asked what their advice to women would be, Ms Phipps, Dr Chapman and Ms Brazil all said similarly: keep pushing until you get what you need.
"My advice would be to stick by your guns,"Dr Chapman said.
"If you've got symptoms that are causing distress and disability, you are absolutely entitled to have a conversation with a healthcare provider about appropriate, affordable, safe treatment options.
"We as women are entitled to have a voice and for that voice to be heard."