Chronic UTI Information Pack

Some important information first

If you are experiencing distress or negative thoughts relating to your health condition, we encourage you to seek support from family, friends, a trusted health professional or other familiar supports. If you are needing support, Mind Spot is an Australian online service offering tailored psychological support for people managing chronic pain and other chronic health conditions. If you are in crisis, please contact Lifeline Australia on 13 11 14,  Beyond Blue on 1300 22 4636, the national Suicide Callback Service on 1300 659 467, or the relevant mental health support organisation in your country.

Understanding Chronic UTI booklet

Download a free version of our updated, 16-page Understanding Chronic UTI booklet by subscribing to our mailing list. Click here to subscribe. You will receive an email with instructions on how to download the booklet. Please check your spam folder if you do not receive the email.

Find an online support and information group

Online information and support groups can be great places to connect with others, share information and experiences and give and receive support.  Not everyone has the same needs or expectations of a support/information group, so we have listed a number of groups for you to explore.   The main benefit of online chat groups is they allow you to connect with other sufferers who are being treated, or who are researching their treatment options, for chronic UTI.  They also share information that will assist in your understanding of chronic UTI and what steps are involved in finding a doctor who can diagnose and treat your condition.  Please do you own research to make sure any of these groups are a right fit for you.  You can also do a search on Facebook to see what else is available.

Chronic and Recurrent UTI Support Group (Australia and New Zealand)

This is a private group that accepts residents of Australia and New Zealand only.  The group provides a space to share information and support. This is a group for women and men.

Join here: https://www.facebook.com/groups/325213191284414/

Embedded/Chronic UTI Support Group 

This is a large private group that is UK-based with many international members.  The group provides a space to share information and support.  This is a group for women and men.

Join here: https://www.facebook.com/groups/256368481581022/

Long-Term Antibiotic Support for Chronic/Embedded UTI

This is a private US-based support group that provides information and support for people in the US.  The group accepts international members.

Join here: https://www.facebook.com/groups/156296299023799

Chronic UTI Women’s Support Group

Join here:  https://www.facebook.com/groups/chronicUTI

Men and Women’s Chronic UTI Support Group

Join here: https://www.facebook.com/groups/1387071144956603

Support Group for UTIs in Children

Join here: https://www.facebook.com/groups/1439446326088527

The above three private groups are run by the UK-based patient advocacy organisation CUTIC UK.   The first group was established in 2013 and there are many members with good knowledge and experience.

Everyday Wellness Support Group – Stop UTI Forever 

This is a large private group that focuses mostly on sharing experiences using natural UTI therapies and lifestyle approaches.

 Join here: https://www.facebook.com/groups/952209828289327/

Investigation of Chronic Bladder Infection

This is a private discussion group consisting of patients, medical practitioners and microbiologists/research scientists.  The focus on the group is discussing research and information.

Join here: https://www.facebook.com/groups/377101679661405

Vaginal Atrophy Group

This is a private UK-based information and support group for people who have been diagnosed with vaginal atrophy [VA].  Many members have been diagnosed with chronic UTI and VA.

Join here: https://www.facebook.com/groups/1505719029448248/?ref=share

Please be aware that mostly members in these group are not medically trained or qualified and they do not offer medical advice.  Online support and information groups are not intended to replace a one-on-one relationship with a qualified healthcare professional. Members within the groups share and discuss their own experiences and research in good faith. You are encouraged to make your own healthcare decisions based upon your own research and in partnership with a qualified healthcare professional.

Important pages to read to learn the basics

We know you have looked through our website already, but we would like to draw your attention back to some important pages that will help you grasp the basics (click to access).

• What is chronic UTI?
• How chronic UTI forms  
• What treatment is available for chronic UTI
  
• Do I have a chronic UTI?
• Chronic UTI doctors
• UTI testing
• FAQs

Articles to share with your doctor

We have many relevant research papers in our resources section, but we have selected a few useful papers to share with your medical practitioner.

• Confronting the urinalysis, BJGP Life, March 2021
• Recalcitrant chronic bladder pain and recurrent cystitis but negative urinalysis: What should we do?, International Urogynecology Journal, March 2018
• Cross-over data supporting long-term antibiotic treatment in patients with painful lower urinary tract symptoms, pyuria and negative urinalysis, International Urogynecology Journal, March 2019
• Urinary infections are complex and hard to treat, The BMJ, November 2017
• Chronic UTI Picture Commentary by Professor James Malone-Lee
• Is it time to rethink midstream urine culture for UTI diagnosis?, News GP (RACGP), June 2019
• Hearing Patient Voices report by Chronic UTI Australia, 2023
• Cystitis Unmasked, by Professor James Malone-Lee, available from online bookshops

Useful downloads

We have a growing list of patient resources you can download for free. Check our resources tab for more.

• Chronic UTI Worksheet
• Understanding Chronic UTI booklet
• UTI Factsheet
• Chronic UTI Picture Commentary by Professor James Malone-Lee

Join our email list  

Subscribe to our mailing list to stay in touch with news and information. Once you subscribe, you will receive an automatic email with instructions on how to download our ‘Understanding Chronic UTI’ PDF booklet for free.  It takes just seconds to subscribe and you can opt out easily at any stage.

Read our blog and patient recovery stories 

Our blog shares recovery stories from patients all over the world. There are more than 40 different stories from women and  few men who share their successful experiences of treating chronic UTI. There are stories about antibiotic protocols and natural therapies and stories from people who are completely cured and others who are well on the way and thankful to be living normally.