Chronic UTI Support for Australia & New Zealand

07 Mar Chronic UTI Support for Australia & New Zealand

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Online information and support groups can be great places to link with others who are in a similar situation. This can help reduce feelings of isolation often experienced by people suffering silently with persistent lower urinary tract symptoms (LUTS).  Online groups allow for the sharing of information and personal experiences and are good places to access support—or to support others. We had a chat with the administrators of the Chronic and Recurrent UTI Support Group (Australia and New Zealand)—a Facebook group focused on science-based discussions around diagnosis and treatment for chronic UTI. The group has a strong emphasis on exploring solutions to overcome the challenges of accessing treatment in our region.  Online support groups are not for everyone but they can play a helpful role for many people who are seeking information and support.

Can you tell us why the Chronic and Recurrent UTI Support Group (Australia and New Zealand) came to be?

The Chronic and Recurrent UTI Support Group (Australia and New Zealand)* is an online peer-to-peer discussion group for people seeking information and support for persistent urinary tract infections (UTIs), and for people with lower urinary tract symptoms (LUTS) who have been diagnosed with a urinary syndrome like interstitial cystitis/painful bladder syndrome (IC/PBS) and overactive bladder (OAB) who suspect they could have a chronic UTI.

The group formed after several Australian women met in a discussion group for women being treated for chronic UTI by specialist physicians in the United Kingdom (UK).  These Australian women decided it would be helpful to have a safe and supportive space where Australians and New Zealanders could discuss chronic UTI (cUTI) in relation to our unique geographical challenges accessing correct diagnosis and treatment.

What started as a small group of five members has grown to over 1,100 members (March 2022).

What do you see as the role of your  support group?

Our group is run by patients for patients and provides a safe place for people in Australia and New Zealand to discuss their issues regarding recurrent and chronic UTI (also referred to as ’embedded UTI’).

We also see it as a place for information to be shared with and between our members, so they develop a better understanding of their condition in a private and supportive environment.

We have put together information gathered from different sources. This information includes:

1. 1. diagnosis of chronic UTI
   2. current problems with UTI testing
   3. treatment options for chronic UTI in Australia and New Zealand
   4. chronic UTI research.

Many of our members will take this information to their GPs in the hope of gaining their local doctor’s support.

As our group focuses on an antibiotic approach to treating chronic UTI (currently the only scientifically validated treatment for chronic UTI), we have included specific information about international specialists who use this approach. This includes Professor James Malone-Lee’s team in the UK, as well as Dr Stewart Bundrick in the United States (US). These specialist doctors will consult with international patients via video link.

We believe it is essential for anyone suffering from a chronic disease to understand the diagnosis and treatment options available and why their current or past treatment did not work. This then allows them to have a more meaningful discussion with their doctors.

Historically chronic UTI has not been well understood in our country. However, once members have familiarised themselves with information shared within the group, and are confident that they have a good understanding of chronic UTI, they are then in a better position to discuss diagnosis and treatment with their doctors.

 

As a volunteer-run support group, can you explain how the group is managed?

Our group is run by a small number of administrators who themselves have suffered from recurrent and/or chronic UTIs. They monitor new member requests and posts on a daily basis, and answer questions where appropriate. They are committed to ensuring discussions stay on-topic and that information shared is appropriate.

We have put together a specific set of rules for our group. This is done to ensure that:

1. 1. members are informed and understand chronic UTI
   2. members are proactive
   3. members’ comments are always constructive and respectful of others (we have many vulnerable members)
   4. members understand that promotions and spam are not allowed.

 

It is also important that our members know we are not medical practitioners, so we do not give medical advice; we always encourage our members to speak with their doctors. This could be their treating physician in Australia or their chronic UTI specialist in the UK or US.

 

There are a number of online groups focusing on chronic UTI.  Can you tell us who your group is designed for and how is it different from others?

Our group is different to others in that it focuses on the challenges that are specific to patients in Australia and New Zealand; in particular we aim at providing practical help for our members so they can find appropriate treatment.  Our group specifically supports the view that chronic UTI is caused by bacteria embedded in the bladder wall. As such, we focus on antibiotic treatment as recommended by Professor Malone-Lee’s team and Dr Stewart Bundrick.

We understand that many people are not able to tolerate or do not want to take antibiotics, and prefer a natural approach to deal with their infections. We suggest to these people that they join a group that supports this approach. There are many support groups which provide advice on natural remedies.

Having said that, we do have many members who follow an antibiotic approach but who take supplements such as probiotics to protect their gut microbiome. We do not provide information on this, but our members do share information.

 

What can someone expect when they join the Chronic and Recurrent UTI Support Group (Australia and New Zealand)?

Many of our members, when they join the group, have been suffering for years and have been totally fobbed off by their doctors. Typically, these people have all the symptoms of a UTI but the standard mid-stream urine (MSU) tests come back with negative results.

Many are told they have IC/PBS and there is no cure; others are told that as their test results don’t show any infection it must be “all in their head”. These members may have previously joined IC/PBS groups where they have learned about embedded infections from other members. They then join our group to explore chronic UTI as a possibility.

We share information on why standard MSU tests are failing them. We also have information on how Professor Malone-Lee’s team diagnose chronic UTI, including the microscopy analysis they use as part of their diagnosis and to manage the treatment.

For people who are interested in being treated by the Dr Stewart Bundrick, we share information on how to go about obtaining the Next Generation DNA sequencing testing* that he uses.

When joining our group, we encourage new members to read our files section where we share information that we hope will help people to understand the focus of our group. We also encourage new members to read the website of Chronic UTI Australia Inc, which contains a wealth of information.

Our files cover:

1. 1. An introduction to the group and cUTI
   2. Professor Malone-Lee’s team and Dr Stewart Bundrick’s treatment protocols
   3. Urine microscopy and DNA testing
   4. Other treatments and vaccines
   5. Research papers

 

Once new members have read the information provided by our group, they are then in a good position to discuss any questions they may have.

 

How do you feel members most benefit from joining your support group? 

Most people who join our group are looking for a doctor who will treat them. We do not publish a list of doctors’ names, but we encourage our members to talk to their doctors with the new knowledge gained from joining our group. Most members who are currently in treatment have reported having to approach numerous GPs until they find one who is receptive to administering chronic UTI treatment in accordance with the aforementioned UK and US specialists’ protocols.

We give our members hope.

So often our new members express surprise and relief at having found people with the same problems they have. Quite often just sharing experiences can be very comforting and reassuring to know that there is a scientifically validated treatment for recurrent and chronic UTI.

Many members are desperately wanting to hear success stories. We frequently have people telling us they feel the best they have for years. We direct them to the success stories on the Chronic UTI Australia Inc. website.

We aim to give our members practical support:

1. 1. For people wanting to be treated locally, we share information on how and where others get their own microscopy testing done. This could be by one of our local laboratories or by a naturopath.
   2. We share clinic contact details for those wanting to be treated by one of Professor Malone-Lee’s team.
   3. We share clinic contact details for those wanting to be treated by the Dr Stewart Bundrick.

 

We hope to give our members the confidence and support to advocate for themselves.

 

What do members of the Chronic and Recurrent UTI Support Group (Australia and New Zealand) hope for in the future?

Obviously, advocacy is a big issue. For most people, a UTI is not just another infection, it is a long-term debilitating condition that has received little attention until recently. There is research and treatment available to help these people.

We have created a group Twitter account which has allowed us to follow researchers and other advocacy groups and learn more about what is happening globally regarding research into chronic UTI.

We see great advances in advocacy being carried out by groups in the UK and the US. And in Australia, Chronic UTI Australia Inc has been doing some amazing work. The interviews with Professor Malone-Lee organised by Chronic UTI Australia and Chronic UTI Global Support have been particularly successful.

Chronic UTI Australia’s interview with Professor Mason-Lee  can be watched here.

Professor Malone-Lee’s book ‘Cystitis Unmasked’ has certainly helped to raise awareness of chronic UTI. Members of our group have found that donating a copy of this book to their GPs has been an invaluable stepping stone towards receiving treatment. For those unfamiliar with Professor Malone-Lee’s book, it can be purchased from most good online bookshops or it can be ordered in through your local bookshop.

Here in Australia, some of our leading urologists are now looking into Professor Malone-Lee’s research and taking an interest in treating patients following his protocol. Once chronic UTI is recognised by more of our leading Australian urologists we hope that, in the future, most GPs will take on board evidence-based approaches to the diagnosis and treatment of chronic UTI. Surely it is not too much to hope that one day all GPs will be familiar with immediate microscopy and/or Next Generation DNA** sequencing to diagnose this condition which so greatly affects the lives of so many women, men and even children.

 

Post-interview edit:
We were saddened with the news that Professor James Malone-Lee died on February 19, 2022 after a short and unexpected illness. The outpouring from the chronic UTI community, both in Australia and around the globe, has been overwhelming. This is a testament to the vast amount of work he has done and the compassion he has shown when treating patients.

 

*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.

 

**There is no evidence or consensus in the scientific community on the accuracy of DNA-based molecular testing to diagnose chronic UTI.  Some leading UTI researchers do not support the use of DNA-based molecular testing to diagnose chronic UTI or direct treatment due to the current lack of understanding of the urinary microbiome and the inability to conclusively identify and describe the microbes responsible for health and disease.   We do accept that people improve under the care of practitioners who employ DNA testing to help guide treatment.   Therefore, it may be best used by experienced practitioners in conjunction with the patient’s history, symptoms and other tests.  As part of your own research into treatment options, please ask for evidence that a practitioner has had success using this approach and the cost involved in repeat testing.   In Australia, anecdotal reports so far show difficulties for people finding practitioners who understand the test results, and more importantly, have specialist knowledge in treating chronic UTI.  The repeat testing some treatment protocols require could be considered cost-prohibitive by many.  Although it is still early days, it is hoped that DNA-based  molecular testing will one day allow the identification of a personalised healthy urinary microbiome and inform future treatment options for UTI.  You can read more about UTI testing here.  To read our 2018 interview with US research scientist Evann Hilt from Loyola University,  please click here.  

 

 

 

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