TRANSCRIPT
Women generally experience more recurrent, severe and longer lasting pain than men.
That's according to an inquiry into women's pain led by the Victorian Government Department of Health.
And yet, at nearly every level of healthcare, research suggests girls and women's claims of pain are often viewed as atypical, exaggerated and even completely fabricated, while men's health claims are treated as the default.
Patricia, not her real name, has confronted numerous barriers in her long journey dating back to pre-puberty, battling menstrual and pelvic-related pain, as well as reproductive issues.
It started as a 15-year-old with ovulation pains, as well as painful periods, before polycystic features were identified in her ovaries.
Patricia went on the pill but says it definitely didn't solve the issue, with ongoing intense pain both during and outside of her menstruation, before undergoing ovarian drilling when she was 19 years old.
She says it felt like pain management wasn't the priority of health practitioners.
"At that time, the gynaecologist I was referred to, he was quite an older gentleman. And he actually said, 'well when do you want to have babies?' And I was like 19 and I was kind of going like well that's not... everything. It was less about symptom management and it was all more about preserving fertility, you know. So anyway he had sort of said we can do this procedure called ovarian drilling, and what we do is we use like a laser and essentially poke a whole pile of holes in that polycystic ovary, which will kind of reduce the size and it can preserve fertility for later, and it should give you some symptom control. So it was like the comfort was secondary to the baby factory."
While Patricia's health was stable for a while, the pain started to increase again when she was around 24 years old.
She says she felt very comfortable with her female gynaecologist at the time, who seemed to prioritise pain management.
The exploratory laparoscopy her specialist performed also involved reducing some of the thickness in the lining of Patricia's uterus, which she says helped minimise her period pains temporarily and also likely meant she didn't have to use IVF to have her children, despite confronting two miscarriages alongside her healthy pregnancies.
Following the birth of her first child, Patricia experienced severe pain once again.
And with that came a similar sense of dismissal, even causing her to question her own experiences.
"And I found the sonographer there very dismissive, very challenging. She was like 'nah everything looks fine, your ovaries aren't even that bad'. You know, I just grinned and bore it, and then it just got worse and worse and then stopping breastfeeding changed it again. And you know I work full time, I study full time, so a lot of the time I'm like, 'it must be stress'. So you just gaslight yourself a bit."]]
The insights prompting the Victorian inquiry came from the experiences of over 1,700 respondents who participated in the Women's Health survey in 2023 - spanning areas from sexual and reproductive health, mental health, pregnancy and birth, menopause and pain.
It found that 46 per cent of participants mostly or did receive the care they needed, but one third of participants also expressed concerns around service delays and a lack of connected care.
And when it comes to chronic pain - a staggering two fifths of women reported this experience.
Kate Seear is a Professor at the Australian Research Centre in Sex, Health and Society at La Trobe University and Deputy Chair of the Victorian Pain Inquiry.
She says an intersectional approach is very important to represent women from all backgrounds.
"So while for instance I mentioned that finding that two fifths of women live with chronic pain which adversely affects their wellbeing, we know that there are also often differences for women who might be Aboriginal and Torres Strait Islander, women from LBTQIA+ populations, trans women etc. And essentially one of the things we need to look at through this pain inquiry is not just the experiences of women but look at them through this inter sectional lens. So to look at how experiences might be different from people of different ages, racial and ethnic backgrounds, sexualities and so on. And then try and generate a set of recommendations for how we might address all of those women's needs."
People suffering from chronic pain were almost twice as likely to have their capacity to work reduced than those who did not.
Dr Adele Murdolo is the Executive Director of the Multicultural Centre for Women's Health, and is on the Women's Health Advisory Council for the inquiry.
She says women from migrant or refugee backgrounds are less likely to use services at an early point for whatever conditions they have and are therefore over-represented in the acute sector, which is generally short-term treatment for a more severe injury.
This pattern of behaviour is clearly demonstrated in antenatal care, with Dr Murdolo describing how fewer women seek ante-natal care early and then witness poor outcomes in birthing.
One significant barrier in this is women on temporary visas being unable to access Medicare subsidised services.
"Because as we know, visas are the responsibility of the federal government. So making any changes to that eligibility for Medicare is a federal government responsibility. Having said that, it could be well within one of the outcomes of this inquiry to make a recommendation to the federal government, that health services are available to all women regardless of visa category. Those recommendations that we do stop discriminating against women on the basis of their visa category in terms of access to health."
In response to state intervention to address issues of visa discrimination, the Victorian Minister for Health Marry-Anne Thomas told SBS she would need to understand the specifics of the issue at a federal level but insists their government is committed to providing quality health care for all women.
Even with her medical background, Patricia says she was dismissed at every step of the way.
It was this knowledge that she describes was even used to undermine her.
She says health practitioners claimed she knew too much and was essentially over-diagnosing herself.
"Oh you know too much, therefore you're looking for abnormal where there's normal. So you can't win. You go in with not enough knowledge and you're treated that ‘I'm the expert you're the lay person, you don't have the knowledge to understand what I'm explaining to you’. And if you go in with a high level of knowledge you're treated as if you know too much."
Around 50 per cent of women surveyed reported that sexual and reproductive health conditions, like endometriosis, and other menstrual-related conditions affected their health and wellbeing.
Kat Stanley is the director of EndoHelp Foundation, and also a member of the Council.
She says women presenting with endometriosis are simply not heard in the health system.
"Endometriosis is a 6 and a half year diagnosis delay. You can imagine how many doctor visits that would be, not only are they not heard, but they also feel very disempowered in the health system. They talk about going in and having invasive tests and not really feeling like they have power or autonomy over what's happening in there. There's a language issue because we have so much stigma. We're currently changing that you and I having this conversation, but there's a lot of stigma around menstruation and women's reproduction, and that means lots of people don't even have the language to describe what's going on in their own bodies. And when you already have the trauma history of going to get the help and not being believed, it's even harder to discuss those personal things that are going on for you."
Issues for women in the health system have historical roots, dating back to the very concept of a hysterectomy, as Professor Stanley explains:
"I mean the history of the word hysterectomy is that we used to remove the womb of women who were hysterical and it wasn't that long ago that we were doing that. So I think it's going to take a long, long time for that deeply-entrenched sexism to be removed completely form healthcare. So there's still that idea - it's not just conditions like endometriosis. We know that women with cardiovascular symptoms are less likely to be heard or seen or believed as well, and they're more likely to die. So you know we do have a deeply entrenched sexism in our healthcare system. And I'm hoping this inquiry is the beginning of really making some changes to that."
Patricia, who has considered the option of a hysterectomy to no longer experience constant pain, says it's often seen as a last resort by health practitioners.
She says giving birth is still prioritised over women's own health and wellbeing.
"But then the only reason they can give me for not offering that is the chance that I might possibly want another child, okay here comes the prepared speech. I'm not going to be in pain every single day to overburden a population just because you think I might want one, and I don't want another pregnancy, I'm really sick in my pregnancies. But there is a lot of reluctance to do things because of the thought that women might change their mind about where they stand. Yes, it's a huge operation, yes there are inherent risks associated with it. But you are asking people to live in significant volumes of pain every day, in the off-chance that they might change their mind."
Women with disabilities confront added barriers relating to accessibility and exclusivity when navigating the health system, as the chief executive officer of Women with Disabilities, Nadia Matiazzo, explains.
She says one of the key issues is ensuring health care is provided that doesn't undermine the experiences of women with disabilities.
As a member of the Women's Health Advisory Council, she says she hopes the inquiry will encourage a more holistic approach to how the health of women with disabilities directly affects other aspects of life.
"Often, health conditions go undiagnosed because they're seen as part of their overall disability. Often they can't physically access the health service. You know this is not just about someone who is in pain, this is about the things that chronic pain impacts on, which is pretty much access to daily life. Access to employment, access to community, getting out of bed can sometimes be a really huge barrier. And if you can't get out of bed you experience a lot of isolation."
Dr Murdolo is also calling for recognition of the link between traumatic experiences and pain, which she says refugee women in particular often confront.
This all ties into calls for broader research and education around the links between pain and culture.
"Because pain is a really cultural experience. We talk about it in our languages, we talk about it in the cultural context that we experience. So I think we really need to understand in this inquiry what that means and how then we can deliver treatments that take into account the cultural contexts that women experience their pain in."
Victorian Health Minister Mary Anne Thomas told SBS the pain inquiry is part of a $153 million commitment the state government made to women's health at the last election.
"It was certainly our view that women's pain was not getting the attention that it deserved, nor was it getting the funding that it needed. And this is of course informed by our own experience e as women. And the fact that our caucus is now more than 50 per cent women, our cabinet is now more than 60% women. We bring our own life experiences to the policy-making table. But certainly we have listened to women in Victoria tell their own stories. And what we have done in Victoria with the pain inquiry is that we have surveyed women to really understand what is going on for them."
In a statement, a spokesperson attributed to the Federal government's Department of Health told SBS the National Women's Health and Advisory Council is providing strategic advice and recommendations directly to Government to improve health outcomes for Australian women and girls.
It said the Council is looking at four key areas including in safety, research, access, care and outcomes.
It also said the Government has invested $537 million over the past two budgets in measures that support women's health outcomes, particularly referencing funding and clinics for endometriosis and pelvic pain.
For women like Patricia, urgent change is called for.
"The fact that this inquiry is happening, the fact we also have the birth trauma inquiry happening, I think we're in this day of reckoning where women are just like, this is enough. There's a reason why you're hearing frequently this medical misogyny coming up, obstetric violence coming up. All of it is coming from treating women and their experiences as lesser than everything else when they are actually the key to it. If you want your babies to be safe, keep your women safe. I think we are in a stage where the reason we have so many inquiries happening, with so many things that purely affect a women-based population, is because we are saying it's enough."
