Just wanted to say hi!

[andcohen]

Just wanted to say hi to all you Aussies out there. Hope ya all feeling OK & doing well. We have'nt had much input on the Aussie board so I thought I would drop a line to you all.
What weather we have had this week soo good. & a great day for the AFL football today, although my hubby is from SA so he goes for Port Power. He was so despartly trying to watch & our two yr old was being a terror so I took off to a friends house for a couple of hours so he could watch it in peace. I'm sure he was grateful.
I was just wondering if any of you guys are taking Ditropan & what dose you are on? My Uro has just upped my dose to 15mg a day but i carn't seem to tolorate it, it just makes it so hard to pee & have to sit there for ages & push & push I'm sure I'm about to give birth but only to a few drops of pee. It makes me feel sick & light headed YUk! Any info would be good.
Thanks Talk to you all soon
Andrea
P.S
Anyone with any Aussie gossip or questions feel free

[Imustpee]

Hello..I am not an Aussie, I live near Seattle Washington, but I wanted to say hello...I started Ditropan 10mgs 3 days ago and Nortripilyne last night...

[deviation72]

Hi Andrea,

Yes we've been quiet of late, haven't we? Me, I'm in the middle of the most bizarre, "kind-of" flare that has been going on and off for 5 weeks now. I say "kind-of" because I get two or three days of a tiny twinge of pain, and then one full-on day of pain and nausea, and then back again. This up and down has never happened to me. I thought it was a UTI so I went on a dose of antibiotics but that has done nothing. And I can't get in to see my uro until November so am living on pain killers and trying to see the light at the end of the tunnel! :)

I am only on Tofranil and have heard mixed stories about Ditropan. I still have urinary frequency, especially at night - that hasn't changed much with the Tofranil so was thinking about Ditropan, but maybe it will cause more stress than good?

And on the football issue - I'm not even a football follower AT ALL but I was rapt to see an Adelaide team win. Might make up a *little* for Victoria stealing the Grand Prix from SA all those years ago...

Hope all is well, and hellooooooooo to everyone!

Kirsten :-)

[XoChelsey03Xo]

Hello, I'm not from Australia. I'm from Jacksonville, Florida. It's so cool to meet other people that are outside of the U.S. I hope someday to travel outside of the U.S. and see the world. For now I will just talk to all you wonderful people :)!!!!! Chelsey

[deviation72]

Hi Chelsea,

Lovely to meet some non-Aussies here! Hope you're well and feel free to chat, ask questions, etc to any of us lovely Aussies here on this board!

Kirsten :)

[anxious one]

:hi: Hey everyone, Kirsten- we are on line at the same time now which prompted me to look on the aussie board... sorry to hear you are flaring- me too... as usual, you could say, can't seem to break this cycle, I have a good day or half day and I do something to stuff it up (eat wrong food, have sex...) then WHAM pain again. Right now my back is "flaring" too, I'm in agony actually...

Ditropan I could not tolerate AT All. Exactly as Andrea said- I would drink 2 litres and push and push for only 2 drops to come out. Also made me feel very sick and tired, I couldn't stand it. Kirsten, my specialist has prescribed me Tofranil- has it helped yo?? I haven't even filled the script yet, I read the list of side effects and it scared the hell out of me... how have you found it??? Also, Kirsten if you could give me some idea of what you eat every night :lmao: I'd love some ideas... feel sorry for my poor man who now not only goes without his meat but half the remaining food groups as well!!!!! Getting sick of rice and vegies!! :rolleyes:

As for aussie gossip, not a footy fan, cricket is more my game... if I hear any more about this stupid election I'll scream...

Hope you are all well, Andrea- did you get my PM???

Hugs guys,

Sara

[deviation72]

Hi Sara! :)

I'm sorry you're in agony again. We must be going through the same thing - I have one good day, think "woo hoo! flare over!" - have something like a coffee or a mild curry and then it's back on for young and old. Am totally over it!

Ditropan sounds awful.... maybe I'll give it a miss after all. I've been on Tofranil for 2 years now, started on 10mg and went up to 25 mg about 2 months later. It seemed to work OK - took the constant pain away (before I started it there was no such thing as a flare for me, the pain was there all the time, from dull to severe), and reduced the frequency to about 3-4 times a night. I'm not so sure it's working now, though, as I've been in pain on and off for 5 weeks now and the frequency has increased significantly. I may just need to up my dose. People say that when you first start taking Tofranil it can make you really woosy, tired etc - I got none of that at all. As for side effects, I've only seen a couple - about 4 extra kilos which I can't lose no matter how many times I go to aerobix, and a rather odd one - delayed orgasm (which is apparently an official side-effect!) ;) Apart from those I have none of the other common side effects at all, Tofranil doesn't even make me sleepy which is supposed to be one of the things it does do!!!

As for my diet, at the moment it's really dull - lots of roast vegies and couscous, pasta with lite cream/veg sauces, occassional mild korma curries and rice, and lots of risottos. God how I crave a rich pad thai or thai curry!!! My girlfriend is also getting used to the IC diet and makes me lots of IC friendly foods but I worry about her not eating meat too, as she's a bit low on iron at the moment. (How guilty I feel, too - it's bad enough she has to put up with my flaring, let alone my diet!!!)

Anyway, Sara, I hope the pain goes down for you soon.... :grouphug:
I'm off to bed with the hot water bottle! *groan*

Kirsten :flower:

[anxious one]

I was going to quote from your post, but there was so much I agreed with, I didn't know where to start! :lmao:

My pain is basically constant atm so hopefully the Tofranil will help... when I get around to taking it! I'm trying to pick a week in my calender when I can afford to be loopy/ woozy... nothing popping up yet :rolleyes:

I know I bring a lot of this on myself, I just can't bring myself to cut EVERYTHING out of my diet which I know I have to do in order to find what I can tolerate and what I can't... every day I think, "just one more tea... just one more tomato pasta..." I onlyu have myself to blame!!

"Delayed orgasm" that sounds swell, :rolleyes: like I don't have enought trouble with IC alone!!!

I don't feel bad about hubby not eating meat but I do hate that his diet has basically halved again, I'm thinking of just sending him back to his parents every night for dinner, they are just around the corner. (His mum would love it...)

Hope you are feeling better soon, I swear my heat pack doesn't heat like it used to... overused!!!!!!!

Hugs,

Sara

[hannah2004]

Hi guys
Just wanted to introduce myself but not entirely sure I should be on this board. I have not been diagnosed with IC - was seeing a uro last year and he did a cysto but said there was no sign of IC. Am now no nearer having any idea what is wrong. I don't seem to get the pain you guys get and seem to be alright with most foods apart from the v v acidic ones. I just have the frequency, urgency and uncomfortableness. I also get pain in the v low bladder at the end of a wee and sometime have a weird pain near the urethra thats a bit like mini electric shocks - anyone get this?
Will have to start going back to Uro to try and find out what it is but don't really want to go back to the one I had before - he gave me the old 'bladder problems are very common in women and quite normal' brush off. Anyone know of a good sydney uro???
So good to have some aussies around (even though I am English, I live here now) - had looked for ages and only found America and UK boards.
Hannah - another one!!

[hannah2004]

Forgot to say that I have had a few v bad flare-ups as well where am in a lot of pain and feel very ill - luckily haven't had one for about a year - seem to just get actual bacterial cystitis constantly - have it now and can't leave the house at the moment!
H

[anxious one]

Hi there, :hi: In my opininon whether you have IC or not, if you find this board helpful than you are most welcome to join in !! There seem to be a few on this board that don't have IC anyway- there are many with overactive bladder or simply chronic pelvic pain. At the end of the day we are all in a similar position...

I live in Gosford NSW- I have found a good uro in Newcastle called Jane Manning- she is the head of the IC association in Australia. I saw a uro in Gosford who was an arrogant, unhelpful jerk who basically told me I was a hyperchondriac even though I had constant blood in my urine. My dr also said there are some good uro's at Royal Prince Alfred Hosp. Maybe you could try there?? I am going to an IC support group next week I will ask if there are any good uro's in Sydney for you. :)

Sorry to hear you are sick- I am in a bad flare, getting worse actually... don't quite know what to do, very sick of it!!!!! This illness really sucks sometimes.

Sending you warm hugs :grouphug: Wow, maybe we could actually meet up one day, where in Sydney do you live????

Hugs,

Sara

[hannah2004]

Hi Sara, thanks for your reply and the info on Uros. That would be great if you could ask for me. I might ask at the Prince Alfred Hospital. Sorry to hear you are having a bad time at the moment, I hope it gets better soon. The only good thing I have found to come out of this type of illness is I've really learnt to appreciate the simple things - like sitting down watching tv/reading a book and feeling okay at the same time!
I live in Bondi - hoping to move soon though cos Bondi's not my ideal place to live!! I love the beach but not the people!
Where's the support group you go to?
H

[anxious one]

Hi Hannah,

The support group is in Kincumber, (on the Central Coast) have you asked if there is one in your area?? The lady that runs mine used to live in Sydney and she said that she had an excellent uro- very understanding and compassionate. (Hard to find! :rolleyes: ) I will ask her who this was.

Hugs,

Sara

[deviation72]

Welcome Hannah and hello cool Aussie gals!

Hannah, you are more than welcome to discuss your symptoms here, I totally agree with Sara. Whether or not you have IC, some of the treatments that helps us may help you, and some of the suggestions around diet and lifestyle may also help. So feel free to ask questions, tell us stuff about yourself, etc - it's lovely to have another Aussie to chat with! :flower:

I had symptoms like IC for over 2 years before I got an official diagnosis, but I've been suffering from recurrent UTIs since I was 15 (I'm now 32). In fact, I've had that many problems in my reproductive 'area' in my life I'm convinced that's just my lot. I suffer from chronic period pain (that's not endometriosis), have very mild irritable bowel, and get thrush just from the smell of an antibiotic!!! And some of the suggestions for IC here on these boards have been really useful for my other things as well, so you will probably find this a good place to be.

Hope everyone is well, I'm feeling a lot better since going off bloody Feldene!!!!!! :woohoo:

Kirsten :)

[anxious one]

Hi Kirsten,

So glad to hear you are feeling better... don't antiinflammatories (Had a mental block there!) completely suck?? I was on Vioxx for about 3 days, never felt worse in my life. Were you on it for your IC????

I have had a UTI this past week so not feeling particularly great :rolleyes: Some days you just have to keep going but it's very hard... Dr put me on some heavy duti med called Norfloxacin or something or other?? Worries me that one day the antibiotics just won't work anymore.

Anyway, good to hear from you! :)

Hello other aussie girls and hugs to you all!!!! :grouphug:

[hannah2004]

Hello everyone!
Kirsten, is norfloxacin or whatever the same as Noroxin as thats what I always take when i get UTIs. I had one the other day and the doctor said the bacteria was very unusual so not sure what that means! But Noroxin always seems to help me.
I need to sort out a Uro but because I've just moved her and have the most stressful and time consuming job ever i don't seem to ever get a chance to sort any personal stuff out!! Am supposed to be getting married next June but have actually put that off until the following year because too much is going on at the moment!!
H

[andcohen]

HI GIRLS,
I WAS THINKING THAT SEEMING ALOT OF OUR MEDS ARE DIFFERENT TO THE ONES POSTED HERE (AMERCIAN) WE COULD MAKE A LIST OF ALL THE MEDS WE HAD OR DO TAKE JUST TO COMPARE THEM AMOUNGST OURSELVES. IF WE MADE A LIST WE COULD THEN CHECK OUT WHAT WE HAVE TRIED & HAVEN'T. WE COULD ALSO MAKE A QUICK NOTE ON EXACTALY WHAT THEY ARE USED FOR & IF THEY WORKED OR NOT FOR YOU. I'M REALLY INTERESTED IN TRYING TO COMPARE SOME OF THE PAIN RELEIVERS THAT ARE USED IN AMERCIA.
WE COULD ALSO PUT IN ANY OTHER TREATMENTS WE HAD TRIED & SHARE OUR THOUGHTS ON THOSE, WEATHER IT WAS WESTERN MED OR ALTNT MED.
ANYTHING THAT MAY GIVE ONE OF US A NEW IDEA, OR SOMETHING TO TRY.
ANYWAY LET ME KNOW WHAT YOU ALL THINK.
ANDREA :idea:

[anxious one]

:thumbsup: Great idea andrea- I get so confused with all the different meds.

Hannah- Norfloxacin is the generic name for Noroxin. How often have you had it?? I worry that soon it won't work any more...

I go to that support group tomorrow so will definately ask for you re uro in Sydney...

Hugs,

Sara

[deviation72]

Hi all,

Sara - was on Feldene for the IC, prescribed by my uro. It made me flare big time but was great for my rather sore knee! [at least I had a break from something!] I stayed on it for 5 weeks before deciding no more, and within 10 days the flare went right down.

Great idea about listing the meds. Here's mine:

* Tofranil (generic name: imipramine): 2 years, 25mg per night - OK but might need to go up a bit dosage wise
* Nurofen/Nurofen Plus for pain
* Heating pad and massage with an aromatherapy blend I make myself for pelvic pain (which I also use for any period pain I get). I can post the blend if anyone wants it - it's heavenly! I suspect the smell helps as much as the properties of the oils themselves.
* Bicarb soda, 1/2 teaspoon in a glass of water for flare ups

I've also used Norfloxacin for a bad UTI I got in Thailand (prescribed by uro to take to Thailand if I needed it), but ended up in a full body rash which took 10 days to go away. Aparently I'm allergic to it. Had to go on anti-histamines and a corticosteroid cream to clear the rash! I use Macrodantin as a 'preventative', also prescribed by my uro to take after I have sex. Sometimes it works, sometimes it doesn't. Am never taking Feldene again! Other than that I haven't taken anything else. Before I was diagnosed my GP gave me sleeping tablets to help me sleep which did nothing.

I agree its so confusing with all the American names, I tend to look them up on Google when people mention them in posts but I lose track of them all the time!!!

Hope you're all well guys and had a lovely weekend :grouphug:

Kirsten :flower:

[Rosalie]

This is pretty scary for me (not even sure if I'm doing this right) but here goes. My name is Rosalie and I live in Melbourne. I'm 52 yrs old and have suffered from this horrible pain ever since I can remember.I started seeing doctors about 32 yrs ago, they finally gave up about 8yrs ago and so nearly did I. I only stayed around because of my children. Anyway you all know the story. After what I thought was another bladder infection I got on the internet and found about this thing IC, guess I'm not insane after all HALLELUJAH!!!! Having seen a Melbourne urologist, I'm on a waiting list for another cystoscopy for a diagnosis . My symptoms evidently don't fit into the usual, if there is any such thing! but I'm sure it's IC. Mainly i'ts this debilitating pain which has a mind of its own and only sometimes the urinating frequency. To find this notice board and be able to chat to others who understand is incredible. I hope soon to be able to tell you that I have my diagnosis and can start some sort of treatment. Until then I am following some diet advice off the IC sites, guzzling gallons of Ural and waiting. At least there is some hope now.
Rosalie

[deviation72]

Hi Rosalie,

Welcome to the Australian board! You'll find we're all rather lovely, if I do say so myself! :) And we all have a range of different symptoms, some of us are diagnosed and others are like you, awaiting diagnosis, and we all use different treatments for our condition. Regardless of the outcome of your cysto, you'll probably find the advice on these boards really helpful. I have learned so much myself!

Which uro are you seeing in Melb? I see Anita Clarke who is great.

Feel free to ask lots of questions, and share anything you like with us. Some of us have been living with this for a while (me, diagnosed 2 yrs ago but symptoms for 3.5 years) and some are also newly diagnosed, but all of us are still wading through the frustrations of living with a condition that very few people in Australia know about...

Hope to chat more to you soon!

Kirsten :flower:

[Rosalie]

Hello Everyone,
Thank you Kirsten for your encouragement. I have seen Anita Clarke also but only the once as yet. It was great to find someone like her after so many years.She is very positive and suggested that she would start DSMO treatments even if she wasn't able to get a definite diagnosis on the IC. She said that my symptoms are a bit different to most in that I don't have a huge problem with constant peeing, only 8 to 10 times a day, however the pain is a PAIN! Is anyone else affected this way?
Does anyone else find that it flares up after sitting for too long?
Have any of you had this DMSO treatment? It has been explained to me but can someone tell me from first hand what it's like? Not that anything would stop me from trying it.
Also Kirsten, you mentioned an aromatherapy blend you use, can you tell me what oils you use?
Looking forward to your advice
Rosalie

[deviation72]

Hi Rosalie,

I'm glad you're doing well with Anita Clarke. It seems that everyone has different symptoms - me, I have frequency mostly at night, pain was bad until I went on medication, but I'm not as affected by food as some - I can eat a whole range of things except when I'm flaring. My IC is very unpredictable - for example, some red wines make me flare up, others don't.

The aromatherapy blend I make is from Valerie Worwood's book "The Fragrant Pharmacy" for period pain. It is:

10 drops chammomile oil
5 drops clary sage oil
15 drops thyme oil
30 drops base vegetable oil (sweet almond, or jojoba, etc)

I usually massage this in small circles on my bladder, then put a hot water bottle on top. The self-massage, warmth and smell do wonders for my pain!

I haven't had any DMSO treatment (my IC is not severe enough, thank the goddess!) but there is a board here specifically dedicated to it. It's called the 'Installations' board but this is the link:
http://www.ic-network.com/forum/forumdisplay.php?f=48

I sometimes flare from sitting too long in jeans with my legs crossed - too much pressure on the old urethra, I think. But otherwise I'm usually OK.

Have a great weekend everyone! :)

Kirsten :flower:

[anxious one]

Hi guys,

Sorry have been a bit awol this week... went to a local support group and met a FRIEND, yay for me!!!!!!!!! :woohoo: As you would guess almost everyone was post menapausal age but this lovely girl is 35 and has a 3 year old like me. YAY!!!!!!!! So so relieved to have met somebody close with IC. Everyone at the support group was great, though.

Rosalie- most days I don't have that much frequency, some days I can go for up to 3 hours without peeing but the pain can be unbearable. Pain is without question my biggest problem. When I do pee the pain gets worse and takes a long time to back off, it at all. As we are all finding with IC, our symptoms vary so greatly. I do not fit a "textbook definition" of IC but I sure as heck have it. Likewise, as Kirsten said, our responses and triggers are vast and varied.

MY meds by the way are: Tofranil (Imipramine) prescribed but not commenced yet
Currently on Avanza and Oxazepam for sleep
Panadeine Forte for pain
Macrodantin for after sex- may stop infection but sure doesn't stop a flare!!! :rolleyes:
Just came off Noroxin for suspected UTI...


Hey Kirsten I notice you wrote, thanK the Goddess- are you Pagan??? Just curious, so used to a lot of talk of "God" on these boards but the poor old Goddess gets left out. :)

Hugs all,

Sara

[anxious one]

I should have added that on bad days I certainly suffer frequency esp during really bad flares, I'm going every half an hour but that's when it is REALLY bad. MOST days it's just PAIN PAIN PAIN!!!!! :rolleyes:

Sara

[deviation72]

Hi all,

Sara - glad you found a friend at the meeting! That's great.
And as for the reference to the goddess, no, not a pagan, just a feminist who would rather thank a female deity than a male one (and don't really believe in God anyway, too burned by my Catholic past). I have read lots on witchcraft and paganism (was planning once to do some research on women involved in the pagan movement but have put that on hold for now).

I also don't fit a textbook definition of IC. I wonder how many of us actually do? :) This thing is so unpredictable!!!!!!!!!! I haven't had pain for a week now, but am just waiting for it to happen again, I never trust the 'ok' times!!!!

Hope everyone is well,

Kirsten :flower:

[anxious one]

:woohoo: No pain?? That's great!! I also had a catholic upringing which didn't do me any favours... think you and I have a bit in common! :lmao: I used to be quite into paganism, was Wiccan actually but post IC have so little time to think about anything else :rolleyes: Very sad really, should make more time and would probable benefit from it.

Good to hear you are feeling better!!!!!!

Sara

[deviation72]

Hi Sara,

It's amazing how IC takes over your life, leaving little time for the things that make us feel good! I did a year-long course in tarot reading a couple of years ago, but have hardly picked up the cards in the last year or so since I've been dealing with my pain. Maybe if I took some time out to do some nice things I might not be so focused on my IC.... :rolleyes:

However today is a lovely day in Melbourne, sun is shining and I am getting very distracted looking out the window instead of doing my work!

Hope everyone is well, speak soon!

Kirsten :flower:

[anxious one]

"A lovely day???!! Seriously??" We have had torrential rain non stop for 4 days now! Am feeling immensely stressed... (3 year old, parent, BIG energetic dog, heavy rain- BAD MIX!)

Yeah I know what you mean about IC taking over. Am organising my first animal lib meeting this week (that I am running) and I am stressed but at least it has given me something to focus on...

Anyway, hope you are still well, enjoy the sunshine!!!! :)

Sara
P.S Andrea... hello?????? Where are you??????? :hi:

[deviation72]

Hi Sara,

It's been gorgeous here in Melbourne for a few days now, but will be going back to grey and dreary on the weekend. Oh well!

Just wanted to say good luck for the animal lib meeting - hope all goes well for you :)

Kirsten :flower:

[andcohen]

Hi girls..... Haven't posted much on here for a while, been away & a bit slack so I thought I would just say hello. :hi: I have just started a new thread on the Aussie board so I hope you all take a look.
Kirsten if you don't mind me asking what Dr do you see in Melbourne? I was wondering did you ever consider trying the Elmiron?
Has anyone heard from the other Aussies lately? Hannah, Rosalie or Haley. I hope they are still using the boards, it would be a shame for any of us to loose contact. I think it's great that a few of us Aussies have manged to get together.
Anyway we have had the best sunny day's here in Mildura, great for getting outside & doing things, but the old IC pain has really let me know that I carn't do too much :tsk: That really SUKS However did mange to tidy the garden a bit.
Well best go Hope you are all do Ok.
Andrea

[deviation72]

Hi Andrea,

Lovely to hear from you again!

I see Dr Anita Clarke in Melbourne, she is based at the Mercy Private Consulting Suites in East Melbourne. I had her recommended to me by a gyno at the Mercy Hospital who couldn't help me with my pain (when we all thought it was gynaecological) and she is terrific. I have had other uro's recommended to me but I do not go to male specialists anymore even if they are the best in the universe, after some rather humiliating experiences with a male gyno and a male general surgeon. Never again!

I haven't thought about the Elmiron to be honest, since we last spoke about it. It seems to get such mixed reviews on these boards, and I'm reluctant to fork out that much money if it may not work. At the moment I seem to be "OK" - haven't had a major flare in 3 weeks, and only a few minor twinges since then. If things get worse then I will definitely consider it. I am going to ask my uro about it when I see her in November, though, and see what she thinks about it.

Anyway, hope you are well and will check out your other post sometime today!

Cheers,

Kirsten :flower:

[anxious one]

:hi: guys, haven't seen those others you mentioned on the boards at all... hopefully they are feeling good and so haven't needed to post!!

I was near crippled with shooting left sided pain in the pelvis yesterday... you know, one of those pains that makes you stop and go, "ok... that was bad!" Get it on and on, seems to have settled today (touch wood!! :rolleyes: )

Really, IC can be the pits- some days you feel like your whole body is falling apart. Just started these new herbs from naturapath today- from Metagenics, a chinese concoction- will let you know if they work! (IT SUX that we can't get bladderQ etc over here.)

Talk to you later, about to try an IC friendly recipe from here for dinner!!

Sara

[Rosalie]

Hello Everyone
I'm still here waiting to hear from St Vincents hospital, being on a waiting list for another cysto. Still waiting for a diagnosis! I should post on that venting thread and blast my stingy husband who says we can't afford private hospital cover. I could be getting some kind of treatment by now. Just getting a name to this pain and some acknowledgement that it is real would be a relief in itself. I was first told that the waiting list was two months and then four months, I'm not game to ring again. However, finding this site has saved my sanity. Some of the tips on what to do and take while waiting have been great. Giving up tomatos, caffinated coffee, wine and chocolate has made a difference. Alas! not to my waistline as yet. And I love Nurofen Plus! Ladies, I haven't had one cry over this since discovering this board.
Thank you for being there.
Rosalie

[Rosalie]

Me again, Sara I wanted to ask you about the Metagenics herbs you are using. I worked for a naturopath who used their products. Which ones are they? They Chinese ones taste wonderful (not)
Rosalie

[deviation72]

Hi girls! (Hi Rosalie! Good to see you again!)

Sara - sorry to hear about the pelvic pain. Have to tried a massage oil before you use a hot water bottle/heating pad? I put the recipe for mine up a week or so ago and I swear by it. At the very least you'll smell fabbo and that may help you feel a *little* better :)

Rosalie - sorry to hear about the waiting list. I was on the St V's list for about 8 weeks back in 2002, it must have gotten a bit longer since then. Did Anita Clarke put you on any meds to tide you over? I was put on Tofranil straight away, before my cysto, and while they took a while to work (about 3 weeks) the difference between 'no Tofranil' and 'Tofranil' was quite amazing. And being an anti-depressant, they helped the mood a little too, which I needed at the time I was so cranky and irritable. It's good the diet is helpin you too, I found fruit juice (of any type) was a trigger, but I guess we are all different - tomato doesn't make much difference to me except when I'm flaring and I can't tolerate it at all.

I'm glad these boards have helped - I would be lost without my Aussie IC pals! I'm "OK" at the moment but look at the boards regularly and just knowing I can vent, or talk to someone when I need it, is fantastic.

Kirsten :flower:

[anxious one]

Hi guys, great to hear from you Rosalie :) The herbs I've got are tablets called "uroplex" they are new and supposed to be brilliant at fixing "urinary disturbances." Well, we'll see. Problem is these herbs are 90 to a packet and it says to take 9 a day just for maitenance and up to 30 a day for pain / infection. Well at $24 a bottle that ain't cheap!!! :rolleyes: Will give one bottle a try and if it doesn't work I won't do it again. (IC is SO expensive!!!!)

I am currently on a 12-14 month wait for a cysto at the local public hospital. :rolleyes: So I can relate. Have given up waiting really, I joined NIB as mu uro was "very concerned" at my lack of private cover, but obviously as my IC is preixisting it's a 1 year wait anyway!!!! Don't you love our health system??? :rolleyes: My dr says many people die waiting for surgery in our public hospitals.

Kirsten I am flat broke at the moment but might put your herbal blend on my xmas wish list :) I'm sure it would help. Would you believe Foxtel (our only luxury) took $349 out of my account today instead of my $68 monthly subscription fee?? :cussing: THEN it took over an hour before they would admit a mistake and give it back!!!!!!! On top of this, the bank charged me $35 for them overdrawing my account and NOBODY will give it back!!! I have seriously had a rotten day.

Anyway, must go bath small child and have a cup of tea (oh I forget I can't DRINK tea any more!) and a good lie down!!

Sara :puppy:

[Rosalie]

Hello All
Kirsten, Anita said she didn't want me to start on anything until we had a diagnosis. She said my symptoms didn't quite fit the picture but because it's been going on for forty years or so there could be other stuff happening. I found that disappointing but I understand. At least she didn't roll her eyes and suggest a pain clinic as one GP did. Tofranil sounds interesting. My mood swings are unbelievable! Thanks also to being smack in the middle of menopause.God definitely isn't female!

Well Sara, our health system isn't very healthy at all. It really pees me off just thinking about it. Why doesn't it cover dental, chiropractic, natural therapies etc etc etc.? Especially when there's money in the coffers for other less beneficial projects! Let alone getting patient off waiting lists.

I'm off to performing arts concert tonight (secondary school). My daughters playing lead alto sax in combined 40 piece orchestra. Ha! please excuse one very proud Mum.
Rosalie

[deviation72]

Hi all,

Sara, I know what you mean about IC being expensive! And essential oils and the like add to that burden - I went a bit crazy a few years ago and stocked up so am lucky I can make up the oils as I need.

Rosalie, I can understand why Anita held off on medication until diagnosis, as they can have some "interesting" side effects. I was lucky the Tofranil didn't affect me at all really, and my symptoms were pretty 'typical' IC symptoms too. Once you've had the cysto though I'm sure a treatment won't be far away for you. Just have to keep the chin up while you play that waiting game, huh?

Anyway, girls, sending you both warm thoughts - and everyone else too, of course! :)

Kirsten :flower:

[Rosalie]

Hello All
I was considering buying the "Newly Diagnosed Pack" from the ICN shop. Has anyone already bought one? If so , is it helpfull? It's a lot of money to lay out but your opinions will help me decide.
Gorgeous day in Melbourne today. Makes me feel better. Actually the pain has eased off at the moment, Yahoo!
Good luck on Melb Cup day. Mum always said "bet on the Grey" but she never won a thing!
Rosalie

[anxious one]

:hi: hey guys, been so busy this week with my daughters birthday, just wanted to say hello and hope you are all ok.. I've had a yuk couple of days pain wise, been very stressed... on the up side, I went to my dr today to discuss drug treatment optins again (he had prescibed tofranil but I have put off taking it) and he agreed to give me elavil (endep) instead. I am going to start on 10mg dose and work up if I need to. I was really worried about the urinary retention with the tofranil. (I know endep does similar but not as bad I think.)

Anyway, will keep you all "posted" :)

Hope you all did ok in the melbourne cup... my animal libber status forbids me from participating in the horrendous support of horse racing ;) Like my brother says, "honestly Sara don't you have any fun?!" My hubby lost $4.

Hugs,

Sara
P.S Andrea I owe you a PM will write soon I promise

[deviation72]

Hi Sara,

Happy birthday to your little one! :grouphug:

Best of luck on the Elavil, too. I wonder if it would be a better option for me - not that the Tofranil isn't helping the pain, but it does nothing to help me sleep and prevent the multiple loo trips during the night! I've never heard of urinary retention with Tofranil - it *certainly* didn't happen for me. I wee almost as much and as frequently as I did before I started it 2 years ago!!!! :) But then again, none of the popular side effects of Tofranil have ever happened to me, only those bizarre ones I wrote about a while ago ;)

Unfortunately didn't have today off work, but did stop for a bit to consume 2 glasses of champers while the Cup was on (without effect so far but did get a bit tipsy - my 4th years will be pleased as I was marking their assignments after the race.....). Won $10 but not overly excited as I outlaid $15 to start with. Oh well!! :)