There has to be someone from Australia here...?

[hannahmae]

Hi, I have been reading everyone else's threads which are amazingly helpful...but all American... :bonk:
Although there has been some fantastic advice, I have found myself a little frustrated after reading some of the messages as we seem to have such a restricted selection of medicines available to IC patients in Australia...
Currently I'm on ditropan and endep (an anti-depressant for the pain) but after reading everyone else's messages I think I have IC mildly...although its enough to have a big impact on my lifestyle which is frustrating for a 21yr old...
Anyway, the point of starting this thread was to hopefully encourage or find some Australians on this site..... :hi:

Hannah

[ICNDonna]

I know there are some others. Hopefully they will respond.

Donna

[andcohen]

Hi Hannah,
Yes I am another Aussie. It's so amazing that all in a short time there has been 3 other Aussies on the boards, it has taken so long to find someone else from Australia. I live in Mildura, Victoria & yes it is so frustrating to find much support or info on IC here. Sorry I carn't help you on the being young part anymore as I am now 33 yrs but I was 19 when I first started getting IC symptoms & it took about 7/8yrs & many different DR's to find out what I had & put a name to this thing.
Have you heard of Dr Peter Dwyer in Melbourne he is a Uro who I have seen a few times? From memory I think he is in Brunswick St Fitzroy. He is apparently the man to see about IC he also has a nurse that works for him that runs support groups there in Melbourne although I have not been to one so I couldn't offer any advice on that. For personal reason I have just found another Uro in Adelaide.
Anyway good to find you if you have any questions I will try to help or PM me at any time
Talk to you later
Andrea :butterfly

[deviation72]

Hi Hannah,

I'm an Australian here on the boards too - there's not many of us, but we're all pretty excellent :lmao:

You can read my story "An Australian with IC" in the "Share your story" message board here, where you'll see a couple of replies from other Aussies.

Feel free to chat and say Hi sometime, anytime!

Kirsten :-)

[anxious one]

Hi Hannah,

I'm Sara, another aussie... we have a thread going under Kirstens "an Australian with IC" in the share your IC story forum if you want to join us there :)

I also found another thread with a few aussies so I know there are more of us...

I share your frustration with feeling very alone and frustrated with the lack of meds we have over here!! I'm only 24 and I have a 3 year old daughter and it is just so hard to be sick.

Hope you find us and post in the other forum!!

Cheers,

Sara

[Lady Tamara]

Hi Hannah
My names Tamara and I live in Melbourne...I am 22 years old, and have IC, I have had symptoms since i was 19 but was only diagnosed in January this year. I was first put on Ditropan back in 2002, but it did nothing for me, and recently i stopped taking Endep because i had some dreadful side effects. I have done a lot of research on each medication, i research for IC everyday infact and seem to know more than my 2 specialists do :) I have medium urinary symtoms with IC, but most painful is I have chronic pelvic pain. I am now taking Elmiron, for about a month so far. Feel free to email me message me:) take care
Tamara :)

[deviation72]

Hi Tamara,

I'm Kirsten, 32 y.o, and have been diagnosed with IC for 2 years and also from Melbourne. I'm the same as you, seem to spend a lot of my time researching IC and medications to try and come up with something that *might* help one day....but still looking.... :dizzy:

If you have time, have a look at the thread "An Australian with IC" under "Share your Story" - a few of us are chatting about our experiences in that thread, and we are all Australian in our 20s and 30s (I think..??).

But feel free to message me (or send a Private Message) anytime - I have found it really helpful to chat with 2 or 3 other Australians in the last few weeks (as I've been in the midst of a full-on flare)!

Kirsten :)

[andcohen]

Hi Girls :hi:
Andrea here I was just thinking since we have our own special little aussie section maybey we could use this as our main gathering point for all our Aussie chatter? Of course we will still use the whole fourm for many other questions & support & to give & receive advice from others, I just thought since it was a place for Aussies to gather mabey we should. That way if we get any other newbies they know straight where to come. What do you think?
I thought we could start by all getting to know each other a bit better, so here are a few thing we could find out!
Name: Andrea
Age: 33yrs
Live: Mildura Vic.
Material status: My husband & I have been married for just over 3 yrs ( together for 6yrs.
Children: A daring little boy who has just turned "2" his name is Cohen.
Work: I work 2days a week as a hairdresser.
My IC History: I first started getting symptoms at the age of 19yrs seen 2 or 3 specs back then who basically said my bladder might be sensitive, drink canberry juice (yeh good one ) & be careful what underwear you wear ( fat lot of help that was. I then went to DR Ian Tucker in Adelaide & he seemed ok. But then I was told to see Dr Peter Dwyer in Melbourne. I went to him a coupe of times but did'nt find him much help at all. I asked him about the Elmiron & he said it was probarly a waste of time as it won't work in everyone & it is expensive. ( Big deal I would be worth a shot) I didn't go back after that. I have now gone back to DR Ian Tucker in Adelaide & I have found him to be alot more caring, with a few ,more ideas, like the pace maker thing, still need more info on this. This where I am at with my Drs at the moment.
Medications: Ditropan was the first med they put me on even before my diognoais. I had only been taking 2.5gm of this as anything else made so hard to pee I would feel the pressure so bad but had to sit there for ages before 3 drops would come out & never felt really emptied. There have been a few other I have tried but carn't remember the names.I have aslo for as long as I can remember take Panadine Forte for pain & a few trips to the Drs office for a pethadine sot when really bad. I take Stilnox for a sleeping tab. Toffranil, an antidepressant & pain, Elmiron & I use Minirin which helps to slow down the rate of urine at night. I did try DMSO a couple of years ago but they olny work once or twice. DR Tucker has upped my ditropan to 15mg a day but not tolorating that very well. Back to DR Tucker in a few weeks to see how things are going & talk more about this pacemaker thingy.
Hobbies: playing with my son, reading, gardening. Shopping I know every public loo in town (YUK!) but when you gotta go you gotta go.
I have been better since being on the elmiron. Hve gone from peeing form 20/50 times a night sometimes to about 10 or sometimes less on a really good night. During the day I pee at least ever 1/2 to an hour on on a good day mabey every 2hrs :bow:
Ok thats enough about me for now my meds are kicking in & carn't type or spell when I'm like this.
Let me know what you tink & look foward to talking to you guys soon.
Andrea :kiss:

[deviation72]

Hi Andrea,

Great idea about intros and mioving our discussions to this board!

So.... here's my intro:
Name: Kirsten
Age: 32
Live: Melbourne, Victoria
Marital Status: Committed relationship with my girlfriend of 1 year
Work: Higher education, full-time
IC History: see the first post in "An Australian with IC" under "Share your Story"
Medications: Tofranil 25mg, just went off Feldene 10mg as it was making me worse. I take Panadeine/Nurofen Plus for pain when needed. Currently investigating more medication options as Tofranil is no longer working as well.
Hobbies: making cards, aromatherapy, reading, singing, shopping!

That's enough from me for now - look forward to chatting to everyone soon!

Kirsten :-)

[anxious one]

HI guys!

Good thinking Andrea, I was thinking the same thing as that other thread was getting very long!! :lmao:

Ok, here's my intro:
Name: Sara
Age: 24
Live: Wyoming, NSW

Marital status: De Facto relationship with Matt (about 5 years now)

Children: daughter who turns 3 next week called Claudia

Work: Used to work for Aldi atores until I was "tactfully let go" due to my increasing illness. Was a manager for Hoyts Cinemas prior to having my daughter

IC history: Injured my neck and lower back at work early 2003. Almost straight away I began having "bladde symptoms." I would constantly feel like I had a UTI but whenever I had my urine tested it was clear. For a year and a half i had unexplained pelvic pain- never really pain when I went to the loo, maybe a bit of burning. In the end I just thought it was related to my back and tried not to worry.
In April this year I got what I thought was the mother of all uti's- I ended up in the Er urinating blood. (The most excruciating agony of my life!!) They treated me with IV antibiotics but although it settled it never really went away. Since then I have been put on antibiotics about 7 times for blood in my urine but whenever the culture comes back there is no bateria. I was sent to a uro who was a complete jerk- I never went back.
About 6 weeks ago I ended up in the ER again and they decided to book me in for a laparoscopy thinking I might have endo. The lap came back clear so now my GP has agreed to send me to a top uro about 2 hours away who specialises in IC. (Basically they are saying that if I have blood in my urine it has o be coming from my bladder so it's either IC or cancer!) I am on a waiting list for a cystoscopy.
I was given Ditropan but couldn't tolerate it at all. It literally stopped me going to the toilet, even at the minimum dose. I am on Avanza 15mg to help with my anxiety and help me sleep. (It doesn't help much!) I have oxazepam for sleep which I can only use sparingly or it stops working. I also have Panadeine Forte for pain.

Hobbies & Interests: I am a vegetarian of 13 years and actively involved in animal liberation NSW. I am passionate about animal rights, (It's what keeps me going besides my daughter!)

So glad I found this board and you guys!!!!!!!!!!!!! :party:

Sara

P>S KIRSTEN- I FOUND LOW ACID OJ IN COLES THE OTHER DAY IN THE FRESH SECTION!!)

[deviation72]

Hi Sara,

Thanks for the info about the low acid OJ!!!!!! I'll have a look in Coles next time I'm there. Didn't think of looking in the Fresh section - the one I used to get was in the juice aisle but seems to be no longer be available! I miss my fruit juice - haven't been able to have any for 2 years now....

Hope you're feeling a little better after your laporoscopy - I had one in 95 (for suspected endometriosis, which I didn't have!) and it was awful. A cystoscopy isn't as bad, although there is some pain involved, but not as much as a lapo (in my opinion, anyway!)

Kirsten :)

[anxious one]

Hi Kirsten,

No worries :) I still dilute the juice with water but it tastes good and seems to go through ok!! I went to a vego dinner on Saturday and have given myself an awful flare by throwing caution to the wind and eating spicy food. I ate pineapple also which I think is what did me in. :( Sucks doesn't it!!

I am terrified of the cysto. It's interesting that you say it wasn't as bad as the lap- I assumed it would be worse since they actually cut into your bladder?? Is that right?? :yikes:

Hope you're right because the lap was horrendous!!

Sara

[deviation72]

Hi Sara,

God I know about pineapple - my favourite fruit (and favoruite juice) and it is my worst enemy... Half a glass of pineapple juice and I'm flaring for days.... :(

As far as I know, a cystoscopy is where they insert a small catheter-like tube with a small camera in your urethra to have a look at the bladder (and if you have a hydrodistension as well, the catheter is used to fill the bladder with water to stretch it up). There's no cutting of the bladder, as they go in through the urethral opening. When I went in for mine, I went in at 8am and was home by 12.30 the same day - it's a fairly simple day procedure, although it does involve a general anaesthetic. It was *really* painful to wee for a couple of days, and I had a sore bladder as well, but I was back at work two days later. I'm sure you could ask more about this procedure on the boards somewhere - as I'm no expert. But I can reassure you, it is much less painful than a laparoscopy, believe me.

Chat to you soon,

Kirsten :)

[deviation72]

Hi Sara,

Forgot to mention that a cystoscopy can also be done in the doctor's office under local anaesthetic, although I'm not sure how common this is in Australia. Sometimes these are referred to on the boards as an 'office cysto'. Personally, I'm glad I was out cold for mine!!!

Kirsten :)