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A Glance at IC & IC Support in Australia

(Santa Rosa, CA) While there is no national group in Australia, patients located in Melbourne can attend a very active IC group located at Mercy Hospital for Women. Christine Murray, founder of the group, recently corresponded with ICN Founder Jill Osborne about their current activities and needs. "We founded our group because there was such an overwhelming demand for information," Ms. Murray said. Australia's history of IC is much like that of the USA, Canada and the UK with patients struggling for recognition and support. This small yet dynamic group offers a vital and much needed support service. It has met quarterly for the last seven years, offering a wide variety of speakers. Today, it prospers with over 125 members.

One of Christine's first objectives was to survey the needs of patients. Their results were quite similar to what we've seen in other studies. The survey showed that:

• Patients have had symptoms for many years before diagnosis
• Patients reported that doctors told them that "it was in all in their head."
• Patients had many other inflammatory conditions, such as irritable bowel and asthma
• Patients were desperate for information on how to manage the disease and needed the support of other patients.

Ms Murray offered "Many of our participants are women who have followed the classic I.C. line of going from doctor to doctor and never getting any satisfaction or a diagnosis. In our urogynaecology unit we have an on-going interest in I.C. and do on-going research in this area, therefore attracting many patients from doctors who suspect their patients have the disease. Urologists often recommend the support group to their patients and encourage them to attend the meetings."

The most common treatment for IC used Australia is a DMSO cocktail (mixed with hydrocortisone, heparing and bupivocaine) which is given 12 times over 8 weeks. This differs from the US approach to DMSO (one instillation per week). At their clinic, they provide the DMSO cocktail twice per week for four weeks and then once per week for the following four weeks. Ms. Murray stated "The treatment is usually used in the first instance and we get a very high success rate for relieving pain and frequency."

Other treatments used include peripheral nerve evaluation and permanent implant (if suitable), posterior tibial nerve electrical stimulation and a new treatment that we haven't heard of before.. a laser to the posterial tibial nerve, which is currently in a randomized trials. (We'll provide more details at a future date). Elmiron is a available in Australia but is very expensive.

The diagnostic criteria used in Australia is the NIDDK criteria established here in the USA in the late eighties. Patients are diagnosed using hydrodistention and biopsy.

Socially, patients in Australia face the same uphill battle that they do in other countries. While more patients are being diagnosed with IC than ever, Ms. Murray suspects that many general practitioners are still treating people for UTI rather than IC or that there are no treatments available. She said "Certainly, when you speak to patients, you get the impression that there are still many people being told that they just have to live with it."

IC has yet to be covered in depth by urology associations in Australia. The latest Urological Society of Australia conference last March offered little, if any mention, of IC. However, Ms. Murray will be presenting a poster (research paper) at the upcoming 31st Annual International Continence Society Meeting in Seoul. Their research study examined the effect of DMSO and any subsequent treatments that these patients have undertaken.

IC patients in Australia can also receive a newsletter from a different IC support group based out of Kingswood. For further information on their support activities and newsletter, please contact them at: ISCG, P.O. Box 767, Kingswood, Australia 2747.

It is our pleasure to recognize the work of support groups throughout the world. What is particularly noteworthy is that this group was started by a urology nurse. Most patients understand just how busy a urology clinic is and how overworked nurses usually are. Most support group leaders understand that running their group takes a significant chunk of time. That a nurse would start a group AND keep it active for seven years and counting is truly exceptional.

Jill Osborne, ICN Founder
August 24, 2001