When patients and carers formed an official Australian advocacy organsiation dedicated to urinary tract infection (UTI), they did not expect to face challenges in gaining acceptance. Their experience highlights the importance of patient advocacy and the need for such an organisation.  Helen Eager, a music teacher in Melbourne, has had a chronic UTI for 40 years. After decades of ineffective treatments and misdiagnoses, Helen found Chronic UTI Australia and began making a small monthly donation to support the organisation’s work.   

Advocacy from necessity

When Chronic UTI Australia was established in 2017, there was no peak body, health promotions charity or advocacy organisation representing Australians with urinary tract infections (UTIs).   This came as a surprise (to us anyway), considering UTI is the second most common human bacterial infection, affecting over 400 million people around the world each year.  UTIs are so common that half of all women will get at least one in their lifetime.  This means if you’ve never had a UTI yourself, many women around you likely have.  Why did such a large group of people, of women, not have an official voice?

Challenges being seen and heard

When we were finding our feet as a volunteer-run patient organisation, we became frustrated as journalists and policy makers sought expert comment from health professionals and women’s health organisations who repeatedly sprouted outdated information. We watched with concern as they shared traditional views and advice that we regard as detrimental to the people we represent. We could see they had no knowledge or understanding of huge developments being made by a handful of under-funded, dedicated UTI researchers in the global scientific community.

Our first task was to get accurate information out there, and fast!  We had to be bold, and at the same time be polite and respectful. We reached out to politicians, national health institutions and our sister women’s health organisations and advocates, expecting to be welcomed.  We were not.  We were mostly ignored, brushed off and, on occasions, told we were wrong.

The importance of patient advocacy

These challenges prove how important Chronic UTI Australia is.  Patients need a voice and empowerment.  Our community needs to know they are not alone, and efforts are being made to raise awareness, break the stigma and educate both the public and the medical profession about urinary health.

The challenges have united us and made our volunteer organisation and our community stronger.  We are now gaining traction.  After seven years of persistence, Chronic UTI Australia is becoming accepted, perhaps begrudgingly, as the national voice for UTI.

Together we can stop UTI becoming a life sentence

As a 100 percent volunteer-run health promotions charity, we receive no government or industry funding. This allows us to campaign objectively and effectively on your behalf without any vested or commercial influence.  However, we need your support, both morally and financially, to continue our work.

If you can donate to only one cause this year, please consider making us your chosen charity.  All donations $2 and over are tax deductible in Australia.  Your entire donation will be put towards advocacy activities over the next year that will raise awareness, empower our community and engage with policy makers and the medical profession. You will be joining us as change makers to ensure UTI does not become a life sentence for future generations of girls and women.  Click here to donate.

If moral support is all you can afford at this time, a message from you would make our day!  Email us at contact@chronicutiaustralia.org.au

A UTI in her 20s turned into a 4-decade struggle

Helen Eager from Melbourne donates regularly to Chronic UTI Australia to support advocacy initiatives that help individuals affected by chronic UTI, including herself.

Helen has managed a chronic urinary tract infection (UTI) for the past 40 years, stemming from several acute UTIs and a kidney infection during her early twenties that did not fully respond to antibiotic treatment. When her symptoms persisted despite negative test results, she was diagnosed with interstitial cystitis (IC) and underwent various treatments.

“I tried the standard IC treatments, including DMSO instillations, Elmiron and any number of natural remedies, but with no improvement,” she said.

After decades of ineffective treatments and limited attention from urologists, she had no alternative but to manage her painful symptoms herself.

In 2018, Helen discovered Chronic UTI Australia after reading a newspaper article about an Australian woman with similar symptoms who was diagnosed with a chronic UTI at a specialist UTI clinic in London. Helen went to London and received the same diagnosis.

“I’ve had a chronic UTI for so long, I think I’ve adapted in ways I’m not really aware of.”

Helen says having a chronic UTI has significantly affected her sleep and the potential for forming relationships.  “I’m usually getting up seven or more times a night to empty my bladder. During the day I’m often okay, but during a flare there is persistent background pain and discomfort.” (Read more about chronic UTI symptoms here.)

“I feel the disrupted sleep robs me of energy and mental clarity and has made me timid about taking on new challenges and adventures. It has certainly killed off my enthusiasm for pursuing any new relationships,” says Helen.

When Helen found out Chronic UTI Australia needed funds, she knew she had to help. As a modestly paid music teacher, she chose to make a small monthly donation to support the volunteer-run organisation’s advocacy for Australian UTI sufferers like her.

“I think this charity deserves a massive dose of love and dollars. I’m acutely conscious that I don’t currently have the bandwidth or skills to help out as a volunteer, but I figure my donation will help.”

Helen would like to see others donate to Chronic UTI Australia to support its ongoing work and maintain independence.

“If Chronic UTI Australia could be totally funded by donations from the public, that would be wonderful. I think the reason this organisation is such a trusted voice amongst the chronic UTI community is that it is fearlessly independent.”

Despite Helen’s chronic infection not being cured, she is hopeful that ongoing UTI research and strong patient advocacy will result in new treatments for herself and others.

Click on the button below to find out how you can give to Chronic UTI Australia.

Written by Andrea Sherwin
Co-founder / Secretary
Chronic UTI Australia Inc., 2025