For women who have endometriosis, finding a doctor who can correctly diagnose and treat the disease can be difficult, and private specialist care is costly. It takes an average of eight years to diagnose, by which time young women may have experienced impacts on their education or career, problems with fertility, and many years of excruciating pain.
“A lot of doctors don’t see endo as a ‘real’ disease that is debilitating to the sufferer,” says a woman who participated in research by the Women’s Centre for Health Matters in 2017 into ACT women aged 18 to 50 years with chronic conditions.
“It took 23 years for a doctor to believe my symptoms were not normal and resulted in a diagnosis at age 34. I regularly miss work due to pain and for 23 years I doubted my pain threshold and work ethic,” another woman said.
In addition, many women with endometriosis have trouble maintaining employment, continuing their education, and face discrimination or the fear of discrimination at work, all of which can lead to unemployment or barriers to career progression.
“As a young woman with a chronic illness, the biggest issue I faced is wanting to hide it for fear of being unemployed as a result. Many of the women I initially met felt nothing but regret at owning up to their illness, and all struggled with work as a consequence. As such, I have since stopped seeking support for fear it would circulate and get back to me and discriminate me from a job,” one of the women participating in the Women’s Centre for Health Matters research said.
Impact on relationships and family
“I had to quit my job, lost my partner due to being unable to commit to fast tracking being a parent and unable to cope with having me as a sick partner, it was too hard,” a woman said.
Combine the high costs of treatment with reduced income, and it’s understandable that some women struggle to find affordable, accessible treatment.
“Have had to undergo surgery, the pain keeps me from taking care of my family. Puts my husband under pressure and this affects our mental health and all our relationships. Also doesn’t allow me to work so undue financial pressure. But because it isn’t constant or significant, no support [is] available,” said a woman who participated in the research.
Another woman said that “it’s been a lot of grief and a lot of specialists of all kinds and a lot of money. I have no savings as all money goes to medications, specialists and doctor appointments. Social life is minimum due to money constraints, and being physically unable to go due to pain or fatigue.”
World-class research in Canberra clinic
Many people don’t know that we have an innovative treatment clinic with world-class research right here in Canberra. The Canberra Endometriosis Centre provides diagnosis, treatment, and long-term management of endometriosis through services delivered at The Centenary Hospital for Women and Children.
The Canberra Endometriosis Centre was launched in 2007, with research into endometriosis having commenced in 2005 on a Menstrual Disorders of Teenagers study. Melissa Parker, Endometriosis Researcher and Coordinator at Canberra Endometriosis Centre, says that this study is still the largest study of its kind in Australia, and has led to many similar studies around the world with over 130 citations.
The study was recently replicated with an additional 1,066 teenagers, from which the researchers were able to develop a Period Impact and Pain Assessment tool (PIPPA). They hope to make the tool widely available through schools and online, so that young women can screen themselves and treat endometriosis earlier.
The PIPPA tool and Canberra Endometriosis Centre’s innovative nurse-led public health care have been recently mentioned in the first draft of the National Action Plan for Endometriosis.
One of the factors in having successfully established and maintained the Canberra Endometriosis Centre has been the high level of support it has from people who are in a position to speak about its benefits to the local community, and international knowledge about the disease.
Community support for local endometriosis clinic
A recent local fundraising event resulted in a cheque for almost $3,000 presented to the Canberra Endometriosis Centre on Wednesday 11 April. Fundraising organiser and artist Margaret Kalms said that when she looked around the room at the art exhibition and charity auction event last month, she wasn’t sure she would be able to reach her target. “But people opened their hearts,” Margaret said, and outbid each other on donated auction prizes to support treatment and research for women with endometriosis.
Speaking at the handover of the cheque, Member for Canberra Gai Brodtmann talked about the physical and emotional trauma of the disease, and the financial burden on women and their families.
“I’ve heard from hundreds of women, mothers and fathers, who bravely shared their heartbreaking stories – stories that seemed to be unleashed for the first time. The misdiagnosis. The myths. The operations. The hysterectomies. The endless operations. The lost opportunities. The cost. And the pain, the dreadful pain. The daily struggle to take control of their lives,” Ms Brodtmann said.
As the Co-Chair of the Parliamentary Friends of Endometriosis Research, Ms Brodtmann has spoken at many events and advocated for funding for endometriosis research. Her efforts culminated in the announcement of a First National Action Plan for Endometriosis by Federal Health Minister Greg Hunt.
Ms Brodtmann spoke about the ability of art such as Margaret’s to create empathy in people who haven’t been on the endometriosis journey. “EndoWomanArt’s Margaret Kalms has been behind these support services all those years. The donation of $3000 from the sale of her powerful pieces and the generosity of Canberra businesses and Canberrans will help women suffering from endometriosis through their physically and emotionally challenging journey,” she said.
“The journey of the Canberra Endometriosis Centre research and clinical work has not been without champions,” Melissa Parker said.
“At the national level, Gai Brodtmann has just been amazing,” Melissa Parker said. She also recognised the work of Anne Sneddon and David Ellwood, Omar Adham, Alison Kent, Women’s and Children’s Health/Liz Chatham, her past and current bosses, nursing and midwifery colleagues and the Private Practice Fund. “The Women’s Centre for Health matters has always been there in the background, providing support at different times starting way back when we were running a support group for women with endometriosis in the 1990’s,” she said.
Giving a voice and support to women with endometriosis
Also present at the event was Jess McGowan from the Canberra Endometriosis Network. The network provides support to women experiencing endometriosis and their families in Canberra and the surrounding area. The network now has over 600 members, and provides social events and hospital support visits to women receiving treatment. For women with this disease, being able to talk to other women about their experience can help in managing the emotional trauma, as well as sharing information about managing the disease.
“Endometriosis isn’t spoken about… no cure, no support other than what people find. Doctors and staff are ill-equipped to support women in such intense pain,” said one of the women who participated in the Women’s Centre for Health Matters research.
“I’ve been confronted and deeply moved by the tragedy of this disease,” Ms Brodtmann said. “That so many women feel so alone and so frightened. Voiceless. Powerless. Hopeless.”
“The Canberra Endometriosis Centre and the Canberra Endometriosis Network give these women a voice. They empower women and support women in helping to manage this insidious disease. And they’ve been doing that for years,” Ms Brodtmann said.
Ultimately, the final say on what should be done for women with endometriosis should come from a woman who has the condition. In the words of one of the research participants, “more funding for the Canberra Endometriosis Centre would help raise awareness in the hospital environment so women are treated consistently and with dignity.”