Just checking in...

[anxious one]

Hi everyone, this board has been pretty quiet so thought I would check in and say hello to everyone and hope you all had a nice xmas and New years. :)

I am hoping to kickstart our letter writing campaign very soon... just thought there was not a lot of point doing it over the holidays and the non ratings period etc. I have that letter from here that I rewrote and will post it ASAP so let me know what you all think. I have just been SO busy, as you all probably have been too... I don't work but have my daughter and spend a lot of time doing stuff with and for Animal Lib. There is only so much you can do in a day!! :rolleyes:

Rosalie, Nadia and I were wondering how you are going with the Prelief?? Has it many any difference?? Hope so.

Well, sorry this was short and s2weet, hope to hear from you all soon.

HUGS!!!!!!

Sara

[kelly McC]

Nice to hear from you glad your doing well..

huggs,
Kelly

[Rosalie]

Happy New Year Everyone
I had a lovely Christmas. Just the four of us home for the traditional lunch this year, so we had a very leisurely day. The full clan gathering was at my brother's place in Melton where there were about thirty rellies for dinner.
They are a wonderful bunch and we had a fantasic evening. My younger brother had come down from Queensland with his family and we spent more of Boxing Day catching up as well.
I did manage to get in my personal favourite on Boxing day. Watching the Melbourne to Sydney yacht race start after spending all morning in bed checking out my pressies from the day before.

Sara, my Uro suggested that I not try the Pelief until we could see if the Endep was working. But I did cheat on New Years Eve and took two so that I could have a glass of champagne. I did have a reaction to the grog but it was much much less than usual. It was worth it, I miss having the occasional drink.
Hope to hear from the rest of you soon.
Rosalie

[andcohen]

Hey everyone :hi:
I was I was just thinking that it's been awhile since we have had a quick catch up.. I hope that you all had a great Chrissy & New Year. We also had a very quiet affair this year which was nice & caught up with some rellies for New Years which was also my cousins 21st Birthday so that was good.

How have you been Kirsten? Are you on holidays at the moment? Bet your enjoying it if you are.

Have you heard from Nadia lately Sara & do you have any more support group meetings comming up that you are going to?

Rosalie, by the sound of it you got the prelief? I wouldn't have thought taking it would make any difference to your other meds as prelief is not really a medication itself? Don't know just a thought :hmm: I have used it before when I had some samples sent from the US but it was only a few packets & was years ago so I don't really remember what it was using them. ( just remember I think I already told you that?) Anyway at least it helped a little with the wine. I wish I had some, haven't had alcohol for ages & I am going out to tea with the girls next week & that always involves lots of drinks. I'm trying to be strong & not join in as I have been trying the elimination diet this week, so that would really put me off track.

Well enough from me, hope you are all well & talk soon

Andrea :grouphug:

[anxious one]

Hi all, so glad for your replies!!!

Great to hear from you Andrea, I did write a message to you on another post wishing you merry xmas etc but not sure if you got it. yes, Claudia did get very spoilt as always- bet Cohen was the same!! Thats what comes with being an only child- Claudia is also the only grandchild on both sides- enough said! :rolleyes:

I spent yesterday with Nadia and in all honesty it's very rare that we don't speak at least once a day! :D We have become a lifeline for each other which is fantastic. Never would have thought I would find someone that has IC who lives nearby that has a child a similar age and that has actually a lot in common with me. Very weird but I'm not complaining!!

Rosalie, how is your endep working?? Any side effects?? Glad to hear you had a lovely xmas.

As for Kirsten, I have not even seen her around the boards- very strange. Hopefully that means that she is doing great and doesn't need to post!!

Great to hear from you all , we must keep dropping in on this board just to catch up :)

Sara

[Rosalie]

Sara, the endep has helped a lot. For about ten days I started to think the pain was all gone and forever, I hoped! Not to be. It certainly is a lower grade than before and I haven't had any truly bad days since the Cysto/Hydro and Endep.
I may need a higher dose to keep it at bay completely. I believe constipation is a side effect and I have noticed some changes in that area but not too bad.
Do we need to send out a search party for Kirsten?
Rosalie.
PS I'm still trying to get a customized avatar. Have sent a copy of what I want five times to Jill and a few other emails asking her for help but nothing as yet. Perhaps she doesn't like dragons?

[anxious one]

Rosalie, if you have had that good a result with such a low dose of endep than that is fantastic!!! :woohoo: When I started the endep I went dramatically backwards. I am up to 50mg now and seem to be doing better (which is weird ) but sometimes I wonder if I would be better off without the endep. I don't know, I seem to be getting up much more a night now than I used to- my uro says that my IC is just getting worse which is so reassuring and positive :rolleyes: but I do wonder. I almost never have a day without some degree of pain- never, really. What a life.

I don't know where Kirsten is! Like I said, earlier, hopefully she is doing great and doesn't need us LOL!! I haven't even seen her on the boards.

Everyone else, hope you are ok. I saw "Meet the Fockers" last night it was absolutely hilarious!! Never had to get up to pee so that was good, but it was an effort believe me.

Hugs to all of you,

Sara

[deviation72]

Hi girls!

Hope you are all well and had a wonderful Christmas and New Year and holidays! I got back yesterday from 10 days on the NSW South Coast with my partner's family but had no computer (can't even get mobile signal where I was)!!

Update from my end - am in the middle of a bad flare for the first time in 3 weeks and not sure what has caused it. Maybe a delayed reaction to the Chrissy wine or something, I don't know. Had my first experience last night of the negative effects of urinary retention: twice trying to pee with nothing!!!! Ugh. It's 39 degrees today here in Melbourne and was hot last night which made using a hot water bottle for the pain a little difficult! Do any of you guys use ice packs for pain? Any success? Might be better for those oppresive Melbourne summer nights.

As for me disappearing - only because I had no PC! Of course I need you guys ... the first thing I thought about was getting on the boards and checking on you all :grouphug:

Anyway, am off to sit with hot water bottle in front of air cooler... harumph, I hate this weather.... :rolleyes:

[Rosalie]

Hey Kirsten, Happy New Year to you and good to see you back on the boards.
This weather stinks! Do not like the heat!
We have an AC in the dining/lounge area but now out here in the family room where the computer is, so I may not be here too long.
I have been fortunate that the endep seems to be working fairly well. Any pain is generally low grade and mostly only in the evenings. Fingers crossed!
Sorry to hear that you aren't well at the moment. I haven't tried ice packs before but I figure that anything cold couldn't hurt at with this temperature as it is.
It is 10.40pm and I reckon that its still 35C outside. The change is supposed to come through around midnight. I think I'd sleep outside except the mozzies would eat me alive.
My hubby insists that the AC be turned off at 11.00pm. Council by-laws he says. (Bloody town planner!) Reckons it makes too much noise Agh!
Oh well, at least I have a little evaporative cooler in the bedroom.
Off to beddie-byes!
Rosalie

[anxious one]

Hey kirsten and Rosalie, so glad to see that you are alive and well Kirsten :) was worried about you... I think you get the hot weather before us because we have had LOVELY mild weather the past week but they forecast 34 for today and up to 40 the next 4 days.... YUK!!!!! :mad: I hate the heat. I was watching that cricket goame on Monday and they said it was VERY hot in Melbourne then.

Kirsten, I do use an ice pack for pain but usually more for groin pain- (between my legs, sorry to be gross!) I hate this heat because I live with my heat pack near surgically attatched but no go in 40 degree weather... I don't know what else to suggest... you have tried the pain killer optin obviously?/ I rarelt take them as I really don't find they work.

AAAArrrggggg... sorry to be so unhelpful!! I hate flares, I'm in a bit of one at the moment also for no reason I can see except my period is due. Ate really bad things last weekend and was fine now in pain... you just can't know with IC. :rolleyes:

Anyway, hope you feel better kirsten and thenks for "checking in!!"

<<<<HUGS>>>>

Sara

[deviation72]

Hi Rosalie and Sara! Thanks for the messages!

I survived last night's heat (but only just) as the cool change hit my place about midnight and with my much loved evap air cooler I could use the hot water bottle easily. I didn't really get to sleep properly until about 4, before that was waking every 1/2 hour or so. The thing I hate most about this IC is the interrupted sleep. When I'm flaring, I tend to finally get a little uninterrupted sleep from 4am onwards, which is OK if I don't have to get up and can sleep in until 10-11, but on work days, not so good :(

On the next hot night I'm going to try the ice pack, as my IC pain also hits my groin area too... ugh.... :rolleyes: They're predicting more warm-hot weather for Melb the next couple of days so I'll get a chance to try my ice pack soon...

Anyway, hope you guys are all OK :grouphug:

[andcohen]

Hi girls,
Gald everyone had managed to catch up.

Kirsten, glad you had some time away & was probarly more relaxing with no comp & ph anyway. Some days you just feel like ripping the ph off the wall, when it never stops ringing ( arrrr just leave me alone).

I haven't been too bad the last couple of days. Actuly on Tuesday night I slept from 10.00pm till 6.00am which hardley ever happens ( medication induced of course) I said to Justin I think that is about the 5th time in 15yrs I have slept that long & no pee stops in the night. :woohoo: I felt great the next from having a full nights sleep. UNfortuantly it only lasted the one night though :mad: Well I had my last days working at the hairdressers today so that was a bit sad but a bit of a releif at the same time. She said I could always go back if I wanted a job so I will see what happens?????

Ok enough from me, talk to you all soon
Andrea :flower: :flower:

[deviation72]

Hi Andrea,

That's great about you sleeping right through the night! I always say if it can happen, it can happen again. I haven't slept all through the night even once in 3 years, and I have been getting up to pee in the middle of the night since I was a teenager (although then it was only once, and no IC pain....). But I still hold out hope that one day I will have just one full night's sleep!

How are you feeling now you are have finished work? I just came back to work yesterday and after 4 weeks off it's a bit hard to get motivated again (hence why I am on the boards already today!).

My flare is still going, and saw my uro on Tuesday who said I have a 'medication-sensitive' bladder - all of my new meds are affecting it (in the wrong ways). Back to basics for a while, off everything except Tofranil, to settle it down again. Damn bladder!

Anyway I s'pose I should do some work.... hope everyone is well :grouphug:

[andcohen]

Hi Kirsten,
THanks for asking but I have really felt like crap over the last couple of weeks :mad: This whole thing is just never ending is it!! I just want a few days of not having any pain, I can put up with the living on the loo bit, but how does one small bladder cause sooo much pain?
Just feeling very deppressed & yuck, so tired all the time I carn't even drag myself out of bed when Cohen comes in in the morning. It's like I know he's there but keep struggeling to come to life for at least 1/2 hr or so then when I do drag myself off the bed it still takes half the day to feel OK. I hate this & I hate the feeling of complete drugginess I have at night time because I'm so loaded up on meds it the only way to get any sleep. All this medication is just making me feel so sick :toilet:
Sorry to unload all of this on you I just happened to read your post when I need a big vent.
I must admit that i did enjoy only having to work one days this week :) but feel a bit lazy. Hopefully I will fell better soon & I am going in to Cohen's day care centre to help out there just for a couple of hours one day a week, so I am looking foward to that if it happens.
Anyway I'm sure you haven't got time to be reading these long posts now you'll be flat out at work ( HA HA)
Thanks for checking in & I will talk to you later
Andrea :flower:

[George]

Hi,

Am wondering whether Prelief is available in Australia?

Thanks

George

[deviation72]

Hi George,

:welcome: to our little Aussie forum!

Prelief is not available here in Australia (although we are praying it may be one day!), but you can order it from overseas. There are some restrictions as to how many bottles you can import - other Australian members here have been told by customs that they can only import enough tablets for a 90 day supply at a time. We did discuss it a little on this thread: http://www.ic-network.com/forum/showthread.php?t=11758 if you want to check it out.

Good luck and feel free to have a look around the other topics in this forum. If you have a look back at the threads over the last 6 months you'll see a whole lot of intros from us other "Aussie battlers"!

[George]

Hi Kirsten,

Thanks for your welcome and the info about Prelief. I've really only stumbled across the Aussie message board today. I'm really pleased to find it.

I've been treated for prostatitis for the last six months and I am really beginning to believe that I have IC instead. None of the treatments (antibiotics etc) have helped. I had a cystoscopy and came across a copy of the operation report which mentioned some "cystitis". The specialist who did the cystoscopy did not mention anything about that. It was at the GPs that I saw this report. I'm waiting to get a second opinion from another urologist. In the meantime I am trying to find out as much about IC as I can. I have urinary frequency which leaves a stinging feeling for a little while. I then get some relief a little while later but then have to pee again. Going about every 1-2 hours day and night.

Anyway I hope it is still ok to join the message board whilst I am waiting for my second opinon.

Cheers

George

[deviation72]

Hi George,

You are more than welcome to hang around on this forum, for as long as you like - even if you are not eventually given a diagnosis of IC. Many of the others here are still waiting, or still going through the process of having cystocopies and other diagnostics, so you are not alone. Many of us with diagnosed IC are still trying to find ways of managing and treating our symptoms too. We all use this forum to support each other, to ask questions and offer info, and I have to say that without my Aussie pals I would have not survived the last 6 months.

Most of us have urinary frequency, especially at night (some of us have set records of 20+ trips per night). Myself, I go at least once an hour during the day, and between 2 and 10 times per night (set my own record 2 weeks ago with 11 nighttime trips). Most of us also have moderate to chronic bladder pain as well, which from my research appears to be a common symptom of IC. For me, it is the most debilitating and worst symptom of my IC.

My IC goes up and down - I cannot tolerate many of the common medications for it, and I am still trying to find the best medication to manage it. Currently I am on imipramine (Tofranil) to manage the chronic pain, urinary urgency and frequency, and pain killers for breakthrough pain.

Have you had a look at the resources about the IC Diet? I've found that reducing my intake of acidic foods/beverages (fruit, fruit juice, coffee, etc) has also been a big help. You might find this helps you too.

[George]

Hi again Kirsten,

Thanks for your welcome and also sharing a bit about your symptoms. I'm really struggling with all of this and am having trouble trying to keep my relationship going. Some days I just can't get my head off the pillow because I am so tired from being up to the toilet overnight. Then when the morning comes I have to pee every hour but there is not sense of relief after peeing. I try really hard to be cheerful for my partner's sake but it is really difficult. My partner is coming with me to my next urologist appointment in 2 weeks so we can try and make some sense of this together.

Anyway Kirsten, thanks for your welcome.

George

[Rosalie]

:welcome:
Hello George,
It's nice to see more people joining this forum. When I first joined in I didn't have a diagnosis either but still found everyone to be most welcoming and informative. The advice accross the boards is extremely helpful. And you learn that you are neither alone nor crazy.

My diagnosis finally came in as Urethritis not IC but anything that helps IC also helps me. The diet has made a huge difference as well as Endep and taking bicarb soda in water when I get mild pain. However one of my favourite things is my donut cushion. I can now sit for longer periods and spend way too much time on the computer.

There are forums on topics other than IC. I find these a real pick-me-up some days.

Also you could try to find out if there is a support group in your area. Sara and Nadia attend one in their area of NSW. Perhaps your Urologist could help you out there.

I hope you can get your second opinion ASAP but in the meantime try some of the ideas on the message boards. Look forward to hearing more from you.
Rosalie

[George]

Hi Rosalie,

Thanks for your welcome. I am so please I came across this message board and get to meet some "locals". I really need somewhere to vent as I have been so frustrated. Also really looking at previous posts to learn as much as I can about IC and take this information to my urologist.

Look forward to talk again soon, :)

George

[George]

Hi again,

I forgot to ask whether any of you know whether there is a support group in Sydney?

George

[anxious one]

Hi guys!!

So long no hear. I have been really busy, I took on some foster cats and kittens at xmas, (on top of my 3 cats, dog, 10 guinea pigs, 4 fish and a toddler! Wise move Sara :rolleyes: been really busy and doing a lot for animal lib... very tired but seems to be settling down now.

Hardly had time to check these forums.

:welcome: George, great to see somebody from our neck of the woods. What you describe sure sounds like IC- like Kirsten, (Hi Kirsten! :hi: ) I suffer bladder pain as my first and foremost symptom along with urethral pain and burning. My night time frequency is getting steadily worse, (now 2-3 times average) when I rarely had to get up before. This is despite being on a endep which was supposed to make it better.

I live in Wyoming NSW (near Gosford) we have a support group here that is meeting on the 11th March- great people and quite a few men. Probably not too far for you to travel??? But there are definately support groups in Sydney. I will ask Nadia as she has all that info and get her to post here.

Totally off the subject, my hubby took me to the Lion King last week for my birthday- SO GOOD. It is coming to Melbourne in May, i think... expensive but so worth it. :)

Hello to everyone else (Andrea, Rosalie) :) It's been so long since I was on this board I've probably forgotten everyone.

Sara

[deviation72]

Hi Sara! Lovely to see you again!

It *has* been quiet around here lately, hasn't it? I was thinking about it the other day and hoping it was because we were all feeling good at the moment... :)

Me, had another trip to the urologist yesterday and all went OK. We're going with the "less is more" policy in regards to meds because of my chemically-sensitive bladder, so am back to basics again (off all meds now except Tofranil and pain killers, but with an increased dose of Tofranil starting soon) and my bladder is a bit better than it was, that's for sure. In January I hit a personal record of 10 trips to the loo in one night, but am back down to 2-3 trips (Sara, that's a relief for me!) and am "coping" with the pain that comes every few days, not every day. Am hoping that when the new dose of Tofranil finally kicks in I will sleep better too, because as we know it hasn't had much affect in that department since I started it 2 1/2 years ago!!

Hope everyone is well! Uni starts on Monday so I am back to being ultra-busy again with my teaching...sigh...a woman's work is never done!!! ;)

[Rosalie]

Hello to everyone,
Its been so quiet here that I thought you all must have still been on holidays.
I saw my Uro recently also Kirsten ( I believe we both see Anita Clarke). Things have been pretty good for me, most days I only have mild pain and some days NONE AT ALL!! Yahoo!!!
There are some things that I now know will have an adverse effect on my urethra but other times I have no idea at all what has set it off. Still, I am in a much better place than six months ago, so I'm not going to complain too much. My Uro doesn't want to see for another six months, unless things get out of hand.
Andrea, are you still out there? I hope you are OK?
Rosalie

[George]

Hello Everyone,

I had a second opinion last week with the new uro. He confirms that I have prostatitis but I don't feel convinced. I think my symptoms are very much like IC and I'm not sure what to do from here. Still have terrible frequency and some urgency. Up at night 6-7 times which is making me so tired during the day. I am making another appointment with this new uro to get some more questions answered.

By the way does anyone know of a support group in Sydney by any chance?

George

[Rosalie]

Hi George
Did you discuss IC with your Uro? If so what was his/her reaction to the possibility?
Sorry I can't help you with a support group in Sydney.

Off the track, do you know anything about transferring vinyl to cd? I just bought an old jazz record on ebay ( arrived todayand its great!) as a surprise for my daughters saxophone teacher and I want a copy.
Rosalie

[Rosalie]

Kirsten,
At what uni do you teach and what subjects? My son is at LaTrobe starting Arts after transferring this year from Computer Science.
Wouldn't it be a hoot if your paths crossed?
Rosalie

[anxious one]

Hi Guys,

Rosalie- so glad to hear you are doing better. That's great!! :)

George, didn't I post back about the support groups a while back?? Don't know of any Sydney support groups but Nadia has a number for someone in Penrith so tell me if you are interested and I will ask her to PM the details.

Hope you are doing well Kirsten :-)

Andrea has been around the boards so I think she's ok.

Cheers,

Sara

[deviation72]

Hi guys,

Hope everyone is well :grouphug:

Sorry I haven't been around much - first week of semester is always really busy... sigh... :rolleyes: Rosalie - I am at Monash. Wow, your son transferred from CS to Arts? What a leap! I'm sure he'll love Arts (I can say that as that is my Faculty also...!!)

I'm glad Andrea is around here somewhere, too.

Has anyone heard anything about the next support group meeting in Melb?