Victorian Inquiry Into Women’s Pain

Victorian Inquiry Into Women’s Pain

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Following a landmark survey dedicated to women’s health, in January 2024 the Victorian state government announced it was conducting an inquiry into women’s pain. The Inquiry will report on the lived experiences of Victorian girls and women and is expected to provide recommendations to inform improved models of care and service delivery in the state. In July 2024, Chronic UTI Australia made a submission on behalf of women and girls with chronic UTI.  You can read it here.

Victorian Government Inquiry into Women’s Pain: Submission from Chronic UTI Australia

On behalf of Chronic UTI Australia, the sole national patient advocacy group dedicated to urinary tract infection (UTI), I am writing to share the experiences of an under-recognised group of women who endure life-altering chronic pelvic pain. Their condition is caused by a lack of understanding and mismanagement of an infection so common that it will affect one in two women at least once in their lifetime. Their suffering is unnecessary — this condition is treatable.

The concerns documented in this submission will no doubt add to a wealth of evidence presented to your Inquiry about how women’s pain, and especially pelvic pain, is minimised in our society and our healthcare system. Moreover, chronic UTI is one of several health conditions predominantly affecting women that have been neglected in medical research and development.

While conditions such as endometriosis and pelvic mesh injury are finally getting the attention they deserve, the longstanding underfunding of UTI research, and the failure to translate research evidence into clinical practice, forces women to live with severe pain that is all-too-often dismissed, misdiagnosed and treated in inappropriate and potentially damaging ways.

Severe pain and quality-of-life impacts for women with chronic UTI

“… [chronic UTI] kept me trapped in my house and in such excruciating pain I planned my own death” – ‘Hearing Patient Voices’ survey participant

“I feel so incredibly alone with this condition, trapped in a vortex of pain with no lifeline or way out” – ‘Hearing Patient Voices’ survey participant

Chronic UTI Australia’s Hearing Patient Voices survey report, which can be accessed at https://www.chronicutiaustralia.org.au/survey/, documents findings from our online survey of 410 people with chronic UTI symptoms. Participants were 396 women, 11 men and three non-binary/gender diverse people aged 19–84 years.

In contrast to the frequent characterisation of UTI as a trivial and easily treated condition, our survey showed that people with chronic UTI suffer serious quality-of-life impacts, typically for years and sometimes for decades. In the worst cases, people become housebound, lose their livelihoods and close relationships, and see little hope for the future.

Approximately half of our Hearing Patient Voices survey participants rated their pain, at its worst, as ‘excruciating, unbearable’ (9 on a 10-point pain scale) or ‘unimaginable, unspeakable’ (10 on a 10-point pain scale). The average rating was 7.9 out of ten, indicating pain in the upper range between ‘very intense’ and ‘utterly horrible.’ More than 90% of participants also struggled with urinary frequency. This can be so severe that it keeps people housebound and unable to sleep.

Several participants mentioned that they had experienced serious physical health complications, such as kidney infection, sepsis, and pregnancy loss, due to untreated or poorly treated chronic UTI – read more –

Click here to read the full submission.

 

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.

 

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