Key Points
- Alma Silva claims she saw 10 male GPs who did not take her claims of pelvic pain seriously.
- The Endo Help Foundation says women in pain are often not listened to by GPs.
- Federal and state governments have launched inquiries into women's pain with submissions closing in July.
Colombia-born Alma Silva said she had experienced "extreme" pelvic pain since adolescence, which persisted in the decade after migrating to Australia in 2009.
The pain worsened to the extent that she was sometimes forced to take several days off work per month.
At the time, she was unaware that the pain was caused by endometriosis, a disease in which tissue similar to the lining of the uterus grows outside the uterus, which can cause severe pain in the pelvis and make it harder to get pregnant.
Alma's anguish was amplified by several instances in which she was misdiagnosed.
"I went to see about 10 male GPs who told me everything was normal according to the tests they ordered," she told SBS Spanish from her home on the Gold Coast.
"Then they start asking you things like, 'do you have anxiety?' or 'do you suffer from psychological problems?' and you start to doubt yourself and feel like you're not being taken seriously.
"Only one GP, who was female, took me seriously and that's how I managed to get diagnosed [with endometriosis] in 2021."
An estimated and the average delay in diagnosing the condition was more than six years.
"Since my symptoms were neither excessive bleeding, nor more than one period per month, then the urgency for doctors to refer me to a specialised gynaecologist was zero," Silva said.
"Another problem is that there is no simple test for a diagnosis, you need to have a laparoscopy [procedure] and that must be performed by a specialist gynaecologist."
After several interventions and treatments failed to ease her pain, Silva was advised by medical specialists in 2023 to undergo a hysterectomy.
She has been living pain-free for the first time in more than 20 years.
Royal Australian College of General Practitioners President Dr Nicole Higgins said she was very disappointed to hear of Silva’s experiences but that, "a lot was being done to change this".
"There is significant evidence that we have both a gender and racial patient bias in our health systems and, that in the past, there has been deeply entrenched sexism in the medical system," she said.
"However, we can be encouraged by the fact that almost 50 per cent of Australian GPs and 61 per cent of GPs in training are women who bring their own lived experience of pain to the medical system.
Women’s experience of pain has been devalued by some GPs.RACGP President, Dr Nicole Higgins
Women 'feel helpless in the health system'
Kat Stanley, director of the Endo Help Foundation, said women experiencing symptoms of endometriosis simply weren't listened to.
"They feel very helpless in the health system," Stanley said.
Stanley said the stigma around menstruation and female reproduction meant many women didn't even have the language to describe what was happening in their bodies.
"And when you already have the traumatic history of going to get help and not being believed, it's even harder to talk about those personal things that are happening to you."
The Victorian government has launched an with submissions closing in July 2024.
Department of Health Victoria has also noted that the proportion of girls and women who suffer from chronic pain is higher than men, both in Australia and throughout the world.
The research revealed that two in five women in Victoria interviewed for the study lived with chronic pain.
The survey also indicated that half of the participants suffered from painful conditions related to menstruation alone.
Further, one in three women reported health professionals as demonstrating insensitive and disrespectful behaviour towards their requests for help in dealing with pain, which made them feel rejected and ignored.
Dr Susana Cubas, a retired GP who treated patients in Australia for more than 30 years, said the experience of physical pain between genders was often due to biological issues.
...Whether due to periods or after periods or due to prolapse of the genital system, due to repeated births, or difficult births, there is a whole host of pain that is typical to women.Dr Susan Cubas
She added that pelvic pain was another factor that generated discomfort in the lives of girls and women.
It is hoped that research on women's pain will provide a road map for improving support services and treatments, and provide insight into the systemic issues women face when seeking care and support.
'Gender gap' when it comes to treating pain
The Inquiry into Women's Pain was announced at the end of January by the Premier of Victoria, Jacinta Allan, who has endometriosis herself.
During the announcement, the premier said women were less likely to receive the treatment they needed, in part because of the attitude of some medical professionals. who considered female pain, "as something normal in life".
"Many women in our community know that there is a gender gap when talking about pain," she said.
They know their pain is real and they also know that for too long they have not been believed about that pain, nor given the treatment they need and deserve through our healthcare system.Jacinta Allan
The research findings will be published at the end of 2024.
At the federal level, a spokesperson for the Department of Health and Aged Care said the National Women's Health and Advisory Council provided strategic advice and recommendations directly to government to improve health outcomes for Australian women and girls.
"The council is looking at four key areas including safety, research, access, care, and outcomes," the spokesperson 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."
Elizabeth Mazeyko said she was left "despairing and frustrated" during a period of her life 30 years ago when multiple doctors dismissed her agonising body aches as just a "normal" part of premature menopause.
In her late 30s at the time, she claimed GPs incorrectly diagnosed her when she sought help after experiencing intense pain throughout her body as well as profound fatigue.
"They told me that it was just stress, that I had to calm down and lead a more joyful, contented life," she said.
"It's that fight between what the professionals are telling you ... (that) 'you have nothing, it's all in your head' when you know that you can't sleep and that you feel tired, that you have headaches that sometimes even affect your eyesight."
Finally, after finding a doctor prepared to order exhaustive tests and investigations, Mazeyko said she was correctly diagnosed with fibromyalgia, a disorder characterised by widespread musculoskeletal pain accompanied by fatigue and sleeping problems, which impact memory and mood.
While there is no cure for fibromyalgia, she later received assistance from her doctor to help her manage her symptoms, along with a holistic plan of exercise, diet, relaxation, and stress-reduction strategies.
Mazeyko said the ordeal was a catalyst for her work as a women's health educator for organisations such as the Multicultural Centre for Women's Health, Cancer Council of Victoria, Breastscreen Victoria, Diabetes Australia and the Heart Foundation, among others.
Mazeyko advises women to seek multiple opinions from different doctors and also to request interpreters if required.
Elizabeth Mazeyko (C) says her experiences with the healthcare system led to her becoming a women's health advocate. Credit: Supplied
