March is Endometriosis Awareness Month, the perfect opportunity to publicly welcome Donna Ciccia to the Chronic Australia Board and introduce her to our members. She recently sat down with us to share her story of founding and growing Endometriosis Australia and provide her insight on the challenges people with endometriosis face today.
We are thrilled to welcome Donna Ciccia, director and co-founder of Endometriosis Australia, to our Board at Chronic Pain Australia. Not only does Donna have personal experience living with chronic pain from endometriosis, but she also brings incredible insight as someone who built Endometriosis Australia from the ground up and has dedicated the past ten years of her life to the organisation.
Prior to 2012, Ms Ciccia remembers that a small Facebook group with fewer than a dozen members was one of the only places where people could connect to learn about endometriosis. Today, Endometriosis Australia has grown to represent the over 830,000 people with the illness nationwide. The organisation makes an impact by providing endometriosis education programs, engaging in numerous awareness campaigns, and supporting research.
Founding Endometriosis Australia
Though Endometriosis Australia has grown and achieved a lot over the past ten years, the process of founding it was much more difficult than she could have imagined. It started with her own journey of receiving an endometriosis diagnosis.
Endometriosis is a disease where tissue similar to the lining of the uterus grows in other parts of the body outside the womb, which can cause symptoms such as pelvic pain. It impacts 1 in 9 Australian women and those that identify as gender diverse.
“For about three years prior to my diagnosis, I knew I probably had endometriosis, but I was in denial about my symptoms and hoped they would just go away,” Ms Ciccia said.
It was only out of luck that someone got her in touch with a specialist. Soon after, she had surgery and was diagnosed with endometriosis at age 31. As is often the case for people with endometriosis, even after receiving diagnosis and treatment the disease continued to impact her life, including her ability to work.
“I was thinking, if I can’t do that job because of my endo, and I can’t do that job because of my endo, then you know what? I’m going to put all my energy into raising awareness for endometriosis,” Ms Ciccia said.
At the same time, she wanted to be able to spend more time at home with her young son, who was born on the autism spectrum. It was under these personal circumstances that the idea of Endometriosis Australia was born.
Looking back on her decision to found the organisation, Ms Ciccia said she had no idea what she was getting herself into at the time.
“I’d never built a nonprofit, so I went in bright-eyed and bushy-tailed without the reality of how hard it would be having dawned on me yet. I was completely naïve about all the work involved, but I think that was a good thing. If you know all the mundane stuff you have to do behind the scenes to raise awareness, not many people would jump in and do it,” Ms Ciccia said.
It wasn’t easy, but these challenges didn’t deter Ms Ciccia from her mission. She was determined for more people to understand what endometriosis is and its impact on peoples’ lives.
What has changed for endometriosis over the past ten years?
Ms Ciccia continues to be motivated by hearing people’s stories and seeing the difference her work can make. One difference she has noticed over the past ten years is a big increase in awareness of endometriosis.
“I know on the ground it doesn’t feel like a lot has changed for patients in terms of treatment and diagnosis, but we have succeeded in changing the narrative. I was considered the hypochondriac of my family, as if I was making my symptoms up. Today, many more people are having their endometriosis validated,” she said.
Ms Ciccia recognises other achievements that have been made, including gaining government support through the launch of the National Action Plan for Endometriosis and increased funding. However, she also pointed out that funds are still not proportionate to the impact of the disease or the amount of people who have it.
“When I first started Endometriosis Australia, there wasn’t even a million dollars’ worth of funding per year for the disease. It’s a big milestone that 80 million dollars was recently poured into the sector, even whilst it’s not directly related to patients on the ground,” Ms Ciccia said.
The little known struggles behind running a nonprofit
In the ten years since founding Endometriosis Australia, Ms Ciccia says that her passion for her work never once wavered. However, the effort required to make progress has been enormous.
“For the past decade, I have essentially volunteered full-time to Endometriosis Australia. While many people think it’s this massive organisation, if you peek behind the curtains you’ll find that it has been one, two, three people at the most working behind the scenes as employees of the organisation,” Ms Ciccia said.
She considers the organisation very lucky to have a plethora of volunteers willing to support its mission. In fact, Ms Ciccia views the community that has grown around endometriosis to be one of the most valuable things that has evolved as part of her work.
“I can’t remember a day when I didn’t have pain. I don’t know what that would ever feel like. But then I hear someone’s story and I think, ‘I’ve got nothing on them’. I am in absolute awe of people that can still volunteer their time and be so generous to others around them, despite going through so much,” Ms Ciccia said.
The biggest challenges today for people with endometriosis
While much has been accomplished, Ms Ciccia is further motivated by seeing how much work is still left to be done. She describes endometriosis as a problem the size of Mount Everest, and we’re still just moving one pebble at a time.
One of the biggest challenges she says exists for people with endometriosis today is the significant delay in diagnosis.
“It takes six and half years on average to receive a diagnosis. This is an improvement since it used to be seven to twelve, but it’s still ridiculously long,” Ms Ciccia said.
She says that what’s needed is a streamlined way for patients to identify the right specialists. Specifically, establishing a sub-specialty for complex gynaecology like endometriosis and adenomyosis would enable patients to easily identify qualified medical professionals.
The work that remains to be done
According to Ms Ciccia, serious investment in research is one of the most important things that must be done to improve lives and outcomes for people with endometriosis, adenomyosis and related conditions. She admits that it is a challenge to make change without money.
“There’s a lot of researchers out there who are endo warriors themselves, and that leads them into the area of endometriosis research. We need investment so that these people aren’t looking for crumbs to fund their work,” Ms Ciccia said.
There are significant gaps in endometriosis research that still need to be filled. Today, Ms Ciccia says that many things are still anecdotal, but new research into FODMAP and diets prove promising in relation to the disease management.
“If there were evidence and structure, it would save people with endometriosis a lot of money at the other end. We wouldn’t just be grasping at straws hoping this might be the thing that helps us,” Ms Ciccia said.
Visions of a better world for people with endometriosis
When asked to share something she wished more people knew about endometriosis, Ms Ciccia said that her goal is for the disease to be understood enough by society that people diagnosed with it are offered more compassion and support.
“My goal is that if someone walked up to you in the street and said, ‘I’ve got endometriosis, I have to have X, Y and Z done’, the first thing someone’s going to say is, ‘I’m so sorry to hear that, what can I do to help?’. You don’t have to go through the rigmarole of explaining what endometriosis is; you’re offered the support from the community around you. You don’t have to be a walking dictionary for your friends and your family,” Donna said.
Donna Ciccia’s top 4 tips for people navigating their own endometriosis journey:
- Always take a support person with you to appointments with your specialist. Going through endometriosis diagnosis and treatment can be a very confronting process. It’s good to have someone beside you to provide support, take notes, and help you gather information.
- Empower yourself, your friends, and your family with knowledge about endometriosis.
- Be the CEO of your own healthcare and build a supportive team around you. Instead of waiting for someone else to fix it, take the initiative to find the right medical practitioners for you. This could include a surgeon, a GP, an acupuncturist, a massage therapist, a pelvic pain physiotherapist, etc.
- Don’t discount the impact of endometriosis on your mental health. It can take a lot to process what’s happening with your body. Sometimes we might hate ourselves because our body is failing us. It’s important to take time to appreciate the things about yourself that are not interwoven with your disease.
Words by Arianna Camille Menzies