Hi guys newbie here

[mab]

Hi everyone
I was told last week that I have probably got ic by my urologist she is going to do a cystoscopy in few months ( has me on waiting list) she put me on endep which did not go well I had a reaction to it so I took myself off of it and I am now waiting to see my urologist again. she did not offer me any other treatment at that time, but I am very interested in trying some other products that I have read about on this site some of which are natural products and some that are prescription. As you guys are from Australia
as I am, I was wondering if you have found the availabilty of the products a problem, I wanted to try the cystoprotek and the detrol in particular, have you found any distributers here in oz with these or similar products I live Adelaide.
thanks

[MarthaB]

hi, and :welcome: i cannot really help medicine wise, because I have not been diagnosed as yet, I had my cystoscopy with hydro, but I am still waiting for my results, and the only thing I take is panadeine forte, but I am sure the other girls will pop up soon, and will try to help you, take care martha

[Rosalie]

:welcome: Hi Mab and welcome to the boards.
You will get lots of advice and support here, not to mention a good laugh or two.
I'm on Endep and it has been a life saver for the pain.
Others are on a variety of medications so they can give you the info on those.
Before my diagnosis, I started following the IC diet which made quite a difference.
Alas, many of us have had to play the waiting game too. Its our wonderful public hospital system. Hang in there, I had to wait about four months, not good, but at least I got an answer after many years of the medico roundabout.
We will wait with you and help any way we can. Tell us a bit more about yourself. I'm from Melbourne.

Rosalie

PS. Check out " Hobbies in the Daily chatter/off topic/life outside IC" thread. One of our American friends -Tracey is considering which Aussie city to come to. Perhaps you can tell her all about Adelaide.

[deviation72]

:welcome: mab! Great to see yet another Aussie here. My we're a growing bunch! :grouphug: Hugs to all my other Aussie mates!

Check out some of the old threads (over the last year or so) we've had here, as we've discussed many of the treatment options for IC and related consitions - some of which are unforutnately not available in Australia, (such as Prelief, the acid-reducing supplement).

I've been on Tofranil (imipramine) for 3 years now with good results - drastically reduced the pain, and the frequency, so I could have my life back. I still have flares - and bad ones - but it is much better than the constant pain and frequency I had all the time 3 years ago.

I've tried several other things without much success - but the one thing I've learned with IC is that everyone's treatment is different, and pills others take I can't, while others can't tolerate Tofranil when it has helped me enormously.

What seems to be consistent though are some of the other things you can do to help - heating pads (my lifesaver!), bicarb soda in water, and pain meds all seem to be common things we use to get us through the day.

Feel free to ask lots of questions, tell us more about yourself and share in our little Aussie group. Sometimes we get a bit quiet but we're around, believe me! I wouldn't have survived the last 3 years without everyone here... :grouphug:

I should have added that I'm from Melbourne too.

Love ya's all...

[George]

Hi there,

I don't think we can get Cystoprotek here. I put in an order with the IC Shop yesterday for Cystoprotek so I'll post again to let you know how long it takes to arrive here in Sydney.

Cheers

George

[MarthaB]

:) hey rosalie, did barb give her plane ticket to traceann?? that was nice of her?? :biglaugh: :biglaugh: :biglaugh:

[Rosalie]

Hey! Watch it I'm menopausal! :bonk:

I'm having a bad trot with brainfail at the moment, sorry Barb. We would love to have Tracey come too.

See what I mean Mab? We keep each other on track here.
Rosalie

[MarthaB]

:) rosalie, i'm laughing my a*** of right now, :biglaugh: It made my day.
martha

[Babs RN]

Don't worry, Rosalie I have had no hormones pulsing through my body in 3 years and my brain is turning into a bigger and bigger pile of mush. Hee-hee.

Hugs,
Barb :grouphug:
The American Nurse headed for Oz

[Babs RN]

Hi George, how have you been? How's the kitchen coming along?

Hugs,
Barb :grouphug:

[George]

Hi Barb,

How are you? Nice to see you here. Well the kitchen is finally finished. Yes I survived the disaster of dust and dirt everywhere.

I can't believe you will be coming to Australia. I hope you spend some time in Sydney. There is a lot to see and do. You'll be kept busy doing all the touristy things but it would be good if we could catch up and meet. Maybe some of the other Aussies who are near Sydney would like to catchup as well.

Okay for now

George

[Babs RN]

Absolutely, would love to meet up with all of my Aussie IC buddies.

Hugs,
Barb :grouphug:

[nss]

Hi Barb,

If you make it to Sydney, maybe we could all arrange to meet up. How cool would that be.

George, was wondering how you were doing. Good news that your kitchen is finally finished.

Nadia

[mab]

I have appointment this afternoon with uro and I am after info on meds so what do you guys use to help with your condition?

[Babs RN]

Sorry to get people off track--I know Rosalie has had some success with her med regime.

Hugs,
Barb :grouphug:

[andcohen]

Hey Barb I would love to be able to meet up with you too, although Sydney is a long way from Mildura, & someone would have to come & rescue me from the Airport as I would never know where to go or what to do :loco: Iv'e never been to Sydney & this would be a get chance for even us Aussies to get a chance to meet.
Keep us posted.
Andrea :woohoo:
What fun ...... Better start saving$$$$$

[emilyrose197377]

Hi Mab , sorry that your med didn't work I take a natural med called marshmallow root it is like elmiron I only been taking it for a few weeks and it is helping me some. I hope you dind something to help you. :welcome:
to the Icn.
:grouphug:

[andcohen]

Sorry Mab,
I forgot to give you my meds list. I first started on Ditropan about 15 years ago ( the dose will vary with each patient) My IC is one where it has just got worse over the years, although not all do. So as my pain started becoming an issue I was given pandine fotre. STill at this stage I did not have a proper answer to my bladder worries & for the next 6 or 7 years went from URO to URO looking for answers, & there were a few different meds along the way which I don't recall the names of sorry :loco:
I did have several installs of the DMSO over the years but found the after the first couple they weren't helping & putting me through more pain.
There are many more inbetween but now my daily meds are:
Elmiron x3
Oxy-Contin x2 40mgs
stillnox or seprax at night for sleeping
Tofranil antidepressant & pain control
Panadine forte most nights
Morphine sulfar when needed for breakthrough pain

Hope this helps & remember what meds work for one person may not work for another, we are all different.
Good Luck
Andrea

[George]

Hi All,

I thought I would let you all know that I purchased 2 bottles of Cystoprotek from the IC Shop. It took about 10 days to arrive so I was pretty pleased with that. I'm hoping that it will help.

Regards to all

George

[MarthaB]

hi, that's great george, hope it works for you, martha

[nss]

Thats great George. Hope it works for you. What is it supposed to do ? Its not cheap, if I was looking at the correct one. YIKES

I heard you were on the Chats today. Finally you got on. How did you find it ? They are all so friendly and a lovely group arn't they ?

[George]

I tried the chat board today. I only had 15 mins to spare during my morning tea break so not much time to chat. I had a bit of trouble logging on. By the time I figured out how it all worked I had to log off. Everyone was very welcoming. I hope they don't think I was rude that I could only stay a short time. I am hoping next time now that I know how to log on that I can stay longer and have a good chat.

Also the cystoprotek is a supplement that helps rebuild the bladder lining I think. I am hoping it may help me. It is expensive but may be worth it if I get some relief from this frequency.

Okies for now

George

[MarthaB]

:) hi George, no they didn't think you where rude, everyone understood that you had to back to work, martha

[George]

Thanks for letting me know Martha. I feel better about that now.

George :)

[crybaby]

Hi there Mab,
Detrol isn't actually on the list of approved medicines in Australia, but it is in New Zealand (and lots of other places of course). However, a urologist or urogyno can help you out by giving you a script which you then send overseas. The medicine is then mailed to your uro or your GP for collection. So it's possible to get the stuff, but as it's not on the PBS, it's very expensive. There are other medicines to calm the bladder which are available here much more cheaply and are worth trying first.
Best,
Kathy.