Hello to fellow Aussies

[elvee]

:hi: I have just stumbled onto this Aussie section, and just want to say Hello. I live in Melbourne, and am newly diagnosed and trying to learn as much as I can, I was completely ignorant of all this, so have much to discover. This website has been invaluable for me. I do have a question that I hope one of you can help me with. I have ordered "Prelief" from the U.S. and I would like to know if there is anything like that here? I emailed the company and they don't have any plans on bringing it into Australia at the present time. I send all good wishes to you all.
Elvee

[Rosalie]

:welcome: Elvee, nice to meet another aussie. What part of Melb are you from?
We have had discussion before on the prelief with no luck at finding anything similar here in Oz. But amybee a new thread might bring up something. There seem to be so many more of us Aussies abiut these days. I look forward to hearing some more about you.

[KODY]

hi elvee nice to meet you have just joined as well i am from queensland and i have had ic now for five years hope we chat sometime

[elvee]

Hi Rosalie
I've only found this site recently, and already it's been great having all this information at hand. I've just received 2 books that I sent for, and am currently waiting for the Prelief. Wish we could get that here, there seems to be a lot of things that are not available to us in Australia, I live in Springvale South. Nice to hear from you
Elvee

[Rosalie]

:welcome: Hello to you too Kody, This is a nice surprise to meet two new Aussies.
Mind you I haven't been around very much lately...well actually, hardly at all.
So you may have been around a while and I haven't had the chance to get to know either of you! So :hi:

Elvee, I am in East Keilor, out near the airport,way accross town from you.

[elvee]

[QUOTE=KODY]hi elvee nice to meet you have just joined as well i am from queensland and i have had ic now for five years hope we chat sometime[/QI UOTE]
Hi Kody
Great to hear from you, I envy you living in Queensland, that wonderful weather. I wonder how many Aussies are on this site? I was totally ignorant of this when I was diagnosed, it was such a shock to find out that it was not something that could be cured. Actually, I'm still not used to it. All I'm trying to do now is learn as much as I can, so I can help myself. Hope you do well Kody,
Elvee

[elvee]

We're practically neighbours.
Elvee

[deviation72]

Hi evee and kody, nice to see some new people around. We've been a bit quiet lately but we oldies do check in regularly to say HI!! [Hi Rosalie!! :)]

Have been on these boards for a while and they were my saviour when I was first diagnosed in 2002 and when I felt so alone and lost. I hope they provide both of you the same help and support.

I've been a bit absent of late as my other condition (diagnosed Type 1 diabetic in Feb) has been consuming me of late. That's all getting under control but the upside is that being on insulin has reduced my bladder pain for some reason... still have some pain, and frequency hasn't changed, but its not as bad as it was 6 months ago. So there's one advantage of 5 injections a day... :rolleyes:

Take care all,

[Silverfox]

Hi Kirsten,

I'm not an Aussie,and live in the state of Alabama USA. I like to read how others in other parts of the world feel and manage this bladder disease.

Kirsten, I hope you get your diabetes under control. I have read that some patients with diabetes have bladder symptoms due to nerve damage. The treatment is prevention and control of the diabetes. My question is do your Doctors think Diabetes nerve damage is the cause of your bladder symptoms?
Do you have IC or a type of peripheral nerve damage?

In my case,my Doctor has diagnosed me with hypothyroid disease with resulting nerve damage that affects my bladder nerves and nerves to other organs and tissues throughout my entire body! The only cure is to take thyroid hormones and hope that the disease will halt and that some nerve repair will also happen. I have much sensory nerve damage that results in burning, stinging, sensations. I do not know what my damaged nerves look like,because I have never had them do a biopsy. I won't let them do a biopsy because I have talked to some who had this and the doctors cut into the foot and they had a wound to heal. I might have axonal degeneration, and or demyelination of the coating around the nerve cells, and a problem with the Schwann cells. Hope this makes a little sense to you.

Hope you keep the diabetes under control and feel better. Okay, have always wanted tovisit Aussie and my husband was telling me today about watching kangaroos on a trip made years ago, with me at home with the three kids.
He brought me a T shirt and a necklace.:rolleyes:

take good care, Silverfox:cat:

[deviation72]

Hi Silverfox,

Good to meet you!

My doctors diagnosed IC several years ago now so its probably not diabetes related nerve damage - and because my diabetes is new and in early stages now I'm not sure if I could have nerve damage this early anyway (not sure about this though). I'm really interested in the links between diabetes, insulin and IC but have done a search on the forums and haven't found many others who are both insulin-dependent and have IC. My urologist is rapt the insulin is helping the pain factor, but I am still on my IC meds and intend to keep taking them. I'm assuming its the combination of these and insulin that is helping me.

That's not to say the bladder is healed... woke up this morning with pain and thought oops I spoke too soon :rolleyes:

[Rosalie]

Hi Kirsten, long time, no see hey! Hahaha
I am glad to hear that you are getting the diabetes under control and that there is an inprovement for the bladder pain as well. But 5 needles a day! Do you ever get used to it?

Hello Silverfox, nice to meet you.

[deviation72]

Hey Rosalie! :smile tee

Funnily enough it doesn't take long to get used to injections, even 5 a day, and they only occassionally hurt or sting. The painful thing is remembering to do it, and all the management that comes with it (writing things down, testing blood sugar, trying to match meals to insulin, etc). My brain hurts from having to think about it all so much.

IC is never this hard for me - a few pills, some bicarb and a heating pad and I'm right as rain until the next flare....

[Silverfox]

Nice to meet all you Aussies!

Dear Kirsten, I understand about having to manage diabetes and to stay very disciplined, with all that diabetes care demands. I have great respect for those who have to manage diabetes. Diabetes is a metabolic disease, as is hypothyroidism. They are both very common, and both do cause nerve damage throughout the body. Doctors find this kind of nerve pain difficult to treat, and a large amount of people are living with this sometimes very distressing pain. Some of the nerve damage is in the muscles and there is no pain but loss of muscle strength or numbness and loss of feeling.

In my own case I learned that I have damage to several types of nerves.
These are all peripheral nerves that are outside the spinal cord and brain. Some are the autonomic nerves(those that work without our control) some are sensory nerves(these are the ones that send messages of searing burning pains, or nagging aches) and some nerves to muscles, these interfere with our reaction and co-ordination, causing lack of feeling and sensations.
Some of the nerves that are affected go to the many organs throughout the body and can cause much serious trouble. Some serious problems happen with organs, examples are the intestines and severe bowel problems, bladder, heart, lungs, glands like the ovaries and adrenal glands causing severe female problems.

In my searches to try to understand my own nerve damage caused by my low thyroid disease, I have found very little information... I think the best source was on a veterinary web site. On this site, the veterinarian compares low thyroid nerve damage in dogs and humans. I am so thankful to have some small information that discribes how dogs and humans have improved with treatments of thyroid hormones. I learned that the earlier the diagnosis and thyroid treatment is given, the better the results of recovery are. I was diagnosed finally, at a late stage, but I have improved over many years, with the help of some understanding doctors. It is so good to have some knowledge about my nerve damage, as I am less scared. I do work to take good care of my health, and now I have some hope that very slowly nerves will heal, and someday It has helped me so much to have some knowledge, so I can ask for and receive better care from my Doctors. I see so many bladder patients thinking that their doctor knows it all....

To Kirsten and all Aussies,... what I will never understand is the lack of support or interest and complete apathy towards the suffering of IC patients. Great that you have a support group! Stick together for the cure!

Sincerly, Silverfox:cat:

[deviation72]

Hi Silverfox,

Thanks for the info re: nerve damage and in particular your own experiences. It sounds like you have a lot to contend with on top of your IC!

I'm starting to find out a bit about the kinds of nerve damage associated with diabetes complications, but as my diabetes is new (6 months now) and still early (was caught before I got sick), I'm still in the 'honeymoon' period where my pancreas still has some function and thus - at this stage - I am spared the high risks of complications. But once the pancreas kicks the bucket properly then I will have to be much more careful. But I am already having my feet & eyes monitored "just in case" - all part of the routine of the many specialist/health professional appointments I have to have now.

Aaah the joys of chronic illness (not!)

[Silverfox]

Hi Kirsten,

You are getting good care, and I believe someday we will have a cure for Diabetes and for IC, too!

Warm regards, Silverfox:cat:

[jodi.b]

Hi elvee
I have been having IC problems since March 2006, after having a reasonable time for 12 years. A 4mth period of work stress and a removal of a kidney stone totally set me off. May I suggest you, amongst other things, look at what you eat. Keep a low acid diet. No tomato, pineapples, oranges etc. No saccarine. Use Unbleached perfume free toilet paper, use cotton underwear, no Gstings.
Drink pure water only with no chlorine content (Nobles). Just drinking pure water was a huge step in controlling my outbreaks for the last 10 years or so.
Try to control your stress. Try and "air "your vaginal area.
This is just the tip of the tip of the iceberg.
The internet ( along with my current DR) is a wonderful thing and after all these years and money spent I finally know what my problem is and hopefully if we share information we can all help each other out. Good luck !!

[elvee]

Hi Jodi,
Thanks for the helpful suggestions, I have already put in place a few dietery changes. I no longer have artificial sweetener, spicy foods etc. I have the I.C. List of Problematic foods to be careful of, and will try to find out what things may be a problem for me. Trial and error I guess. I see my Urologist in 2 weeks, I must say that there has been some improvement since I had the Cystoscopy, but not as good as I had hoped. I wonder what will come next.
I must say that all this has really thrown me, but there seems to be thousands more that are much worse than I am. Thanks again for the s
suggestions, bye for now.

[Rosalie]

Hello Jodi :welcome: Nice to meet you, although I think we all would rather it was with circimstances other than having IC.
Two things that made a world of difference for me while waiting on a diagnosis, were bicarb in water and using a ring cushion. They brought me much relief and still do,except now I also have Endep which has changed my life.

Elvee, we may be close neighbours in a global setting but I wouldn't like to have to walk the distance if I was going to borrow that cup of sugar:lmao:

[elvee]

Thought I'd add my voice and say hello from OZ. It's a terrific thing to be able to log on and read what others are doing, and also be able to pick up some tips on how to manage certain things.
Good Wishes to you.

[chernobyl]

Hi all

I live in Sydney and was diagnosed at the end of last year (I had my cysto/hydro the day before Christmas which made Christmas kind of suck). I know you can't get Prelief in Australia but I do take Calcium Citrate (don't let the citrate scare you, it's not citrus) when I'm going to eat or drink something I shouldn't with some degree of success. The only problem that I have with it is the constipation it can cause but other than that it really does help.

I was so bad last night, I ate pizza with pepperoni and jalapeno chilli and tomato sauce with a glass of wine. I took about 5 tablets and although I am paying for it today, it's nowhere near as bad as it would be if I hadn't taken the calcium. Excuse me being crass but I also had fabulous sex with my man and it was a great evening and worth every bit of discomfort today! I am so loving the birth control pill, it is making everything so much better. No more horrible latex reactions - woohoo!!!

I quite often eat spicy food and I'm uncomfortable the next day but it is bearable. If I do that without the calcium it really is horrendous so I think it helps. This is also going to sound pretty strange but a couple of weeks ago I went out and my bladder was burning as usual but I thought what the hell and had two glasses of straight vodka with loads of ice to water it down. The next day my bladder felt much much better. Go figure! I will try that one again to see if it was a fluke.

Anyway, welcome to the newbies to the forum. The people on here are fabulous and so supportive and helpful. I'm glad you found it.

:) :) :) :)