Years of waiting for diagnosis causing mental distress for women

Women with female-specific health conditions experience higher rates of psychological distress In short: Women with medical conditions such as endometriosis experience higher rates of mental health issues, a report has found. There are additional barriers for women in remote and regional Australia when accessing health services. What's next? The report calls for greater investment in women's health care, and women are being urged to be strong advocates for their own health. It took almost two decades for Samantha Banton to receive an endometriosis diagnosis, after years of pain that began as a teenager. "The few days leading up to my period were really awful, lots of cramping, lots of pain, headaches," she said. "Then when my period would actually start it would be excruciatingly painful." Visits to multiple GPs in Geraldton, 400 kilometres north of Perth where she grew up, did not give Ms Banton any answers. "I was always told that I was being dramatic and that it was normal because my cycle was 28 days," she said. "I was told that it was pretty much life, and just to get on with it and find a way to deal with it." After difficulties falling pregnant, a laparoscopy finally provided Ms Banton with a severe endometriosis diagnosis. But the years of uncertainty around her physical struggles took a significant toll on her mental health. "The amount of searching up symptoms and also gaslighting yourself," she said. "You do start to fall into rabbit holes where you just re-evaluate your entire life and try to work out what you're not doing enough of because you still have these symptoms." Link between mind and body A recently released study by Women's Mental Health Australia has found Ms Banton is not alone. The Beyond the Surface report showed women living with female-specific physical conditions like endometriosis experience greater psychological distress than women with conditions impacting both sexes. Neuroscientist and report co-author Bronwyn Graham said there were different factors at play when explaining the connection. "I think the biggest issue is that these conditions are under-diagnosed … so women are spending many years with undiagnosed discomfort, pain, other symptoms," Professor Graham said. "The symptoms themselves are going to be causing mental health distress, but then the way that they are received within the health system causes secondary distress … which elevates those symptoms." Professor Graham believed one of the biggest barriers to women seeking mental health support was service availability, particularly in regional and remote areas. Regional women face added challenges The report found women living outside metro areas had significantly higher rates of mental health issues, including depression, anxiety, and post-traumatic stress disorder. Isolation, limited service providers, and long appointment waiting times are just some of the challenges regional women face. Samantha Banton's experience of now living more than 1,000km from Perth meant the cost of medical treatment was an added burden. "You don't like to count costs, but sometimes you keep a running total in your head about what you have spent in order to get answers,"she said. A desire to fight the sense of isolation inspired Dee Van Beek to start Karratha Women's Place. The not-for-profit organisation provides free health programs and activities, with Ms Van Beek's daughter, Fern, a provisional psychologist at the centre. Fern Van Beek said getting help to deal with physical health conditions could add to mental health strain for women living in the regions. “Being away from family and friends, support networks, you also have that social isolation," she said. "Then the lack of services and options for support here … also creates additional stress and anxiety." More integrated health care The report's recommendations include a call for improved "wrap-around" care, with mental health support integrated into more routine healthcare. Professor Graham said fragmented service delivery failed to reflect the complex requirements of modern healthcare. "People may be going to get their symptoms of pelvic pain treated," she said. "But actually the thing that's most bothering them is the mental health side effects of that, and there aren't clear referral pathways." She also urged women to advocate for their own healthcare and treatment needs. "You know your body, you know when something is not normal." For Ms Banton, after years of pain and treatments, she experienced joy with the birth of her two children. Looking back, she still remembered how it felt when she was finally diagnosed with endometriosis. "Euphoric and really saddening because it was nice to have an answer, but it was sad at the same time," Ms Banton said. "It meant that it hadn’t all been in my head for many years; there was actually a reason."