Hi everyone

[berry77]

It's just so surprising, as well as calming to see that I'm not the only one that suffered from the damn IC. It ruled my life for the last 5 years, I hate to know that how much it hurts. It's the nastiest pain ever and unfortunately nothing gets rid of it.

It's so uncomfortable to feel your bladder all the time, visiting the toilet numerous times, :toilet: sitting in there and crying...
The flares are the worst part of it, you people know what I'm talking about. Wish noone experiences what I've been through.

To put up with IC for 5 years, I believe I'm one of the superiors now, -not proud tho. :rolleyes:


Berry :grouphug:

[Rosalie]

Hi there Berry, nice to see someone new on the boards. Yes it has been a saviour to find this site. You will get the best advice and support here and some great fun as well.
Why don't you tell us some more about yourself. Where you come from etc.
Rosalie

[berry77]

Thanks for the warm welcome Rosalie.
I'm live in Brisbane, 28 years old, work for a major shipping company. I've been in Brisbane for 2 years, I love it here -beautiful place, very nice people and fantastic weather..
:)

[andcohen]

:welcome: Nice to see yet another Aussie around here! Well not really, be nice to see if none of us had to be here, but we are & that means that we are forming a great little Aussie suport system here. And our great friends from the US & various parts of the world are only to willing to jump in with loads of support & advice when needed.
Bye the way I'm Andrea & I live in Mildura VIC. I am 34yrs & have had IC since the age of 19yrs so I had my fair share of fun & games with this.
Feel free to come on the boards as often as you like & don't be afraid to ask any questions ( no matter how silly you may think they are) You can be sure most times someone will come up with an answer for you.
Anyway glad you found us & as I said drop in as often or as little as you like. Unfortantualy we don't all get as much time now to be on here as ofter as we would like, but usually you will one of us Aussies floating around here.
Take Care
Andrea :) :)

[nss]

:welcome: As Andrea said its great to see another aussie here.

I am 35 and live on the Central Coast NSW, love it here, unfortunately I got IC as soon as we moved here. So I have had it now for just gone 4 years.

Heading up your way soon Berry. Coming up for a holiday and to catch up with an old friend.

Hope to chat to you on these boards.

Take care,

Nadia

[berry77]

Hi Andrea,
Thanks heaps for the warm welcome, I really like this web site now.. Sorry to hear that you have IC for such a long time. Does the cold affect it? I get IC when my legs or back feel the cold, that's why always have to dress up like a grandma.. :)

By the way, I've found on the net that there's a herbal powder called "Clear Tract" gets rid of the cystitis -can be found only in the US tho. Have you heard of that? I wanted to import it but they don't deliver outside the US. Shame..

How often do you get the IC? Could you please tell me a bit more about it?

Take Care,
Berry

[berry77]

Dear Nadia,
Glad to hear you're coming up, it's getting really warm in Brisbane :woohoo: , I love it.

This is the first time in 5 years I get benefit of having IC, got to meet very nice people like you :)

I am gonna ask a question, as Andrea said I can ask anything, even though they're silly; do guys get IC too? Because I don't know any guys have IC, except Tom Hanks (The Greenmile) :))

Berry :bunny:

[emilyrose197377]

:welcome: to the ICN. I have to agree with the others this site has been a great help to me. Talking to other people that know what I am going through.

[Rosalie]

Yes Berry blokes do get IC. There are a number that post on the boards and we have George here on the Aussie board.
I didn't know that Tom Hanks was a sufferer. Has he made a public statement? It would be very beneficial for all ICers to have a celebrity face especially a male.
Did you know that Martha AKA Sheebah is from Brissie too?
Is this "Clear Tract" for IC?
Rosalie

[berry77]

Thank you Emily :)
It indeed feels good to talk to someone who knows what you've been through..

[berry77]

Rosalie,
I was just being silly, I don't know if Tom Hanks is an ICer or not. He was suffering from bladder infection in the Greenmile :))) Have you seen that movie? I like it so much.

Who's Martha AKA Sheebah? Never heard..

Yes, Clear Tract is for IC. Apparently it is a powder that gets rid of cystitis for good and has no side effects at all.. Wouldn't it be nice? :)

[Rosalie]

Berry you will find Sheebah on the boards. There is a difference between cystitis and Interstitial cystisis.
Wouldn't it wonderful if there was a cure for IC. I think its developer would be canonized.

[MarthaB]

:) hi Berry, :welcome:glad you found us, we are a friendly bunch of people, and are always here if you need to talk, martha

[berry77]

Hi Martha,
Thank you very much for the welcome, you're very kind.

What are you guys doing to relieve the pain? Antibiotics, Ural and etc?

Berry

[Rosalie]

Berry, my lifesaver is Endep. I take 25mgs each evening. If I get any pain at other times, I have 1/2 to 1 teaspoon bicarb soda in a glass of water. Works within 15 - 20 mins.
I have a related problem but whatever works for IC works for me.
The others on this site take other medications so they can give you their lowdown.
Whereabouts in Brissie are you? My sister-in-law lives in Chapel Hill (hubby is an expat banana-bender) and one of my brothers is further away in Caboulture.

Rosalie

[MarthaB]

:) hi Berry, at the moment I take panadeine forte with 30 mg codeine when needed, I cannot take ural, it gives me a big flare, the doctors usually prescribe Ibilex if I do get a uti.
I have not been diagnosed with IC yet, I had my cystoscopy with hydro 2 weeks ago, and he did a biopsy, I am still waiting for the results, from what I understand so far is that it can take a long time for a diagnosis. How long ago did you get diagnosed? martha

[MarthaB]

:) hi Rosalie, i noticed you mentioned endep for pain, is that a anti depressant?? I'm asking because i am on zoloft, and it does nothing for my pain, I have noticed that a lot of people here on the board are on anti-depressants, maybe they all use it as some form of pain relief, or because they get depressed because of the pain, I'm not sure.... martha

[nss]

Hi Martha - I take Endep (Amitryiptaline) which is a form of anti depressant. It also is used in people who have IC. It suppresses the need to pee. It retains your urine. I don't get up at night, well hardly ever.

I have been on it for just over 3 years or so and it a LIFESAVER for me. I can't remember how long it too to work for me. But I remember my friend Sara who is on our Aussie board persevered with it and it worked for her. Maybe someone else can clarify how long it takes to work. But I would be lost without it.

I initally started on 10mg and now am on 25mg at night. I don't take it through the day, as I have a little one to look after. By all means give it a try, it does work. I hope I have made some sense, I have taken my meds for the night and tend to rattle on. LOL

Perhaps asking your Dr if you could try it. Alot of people have success with it. Some don't, some do.

I hope that all makes sense.

Take care,

Nadia

[andcohen]

Hi everyone me again, :)
Great to see everyone on the boards at the moment. Sorry I hadn't got back to you yet Berry regarding your question about IC & the cold weather. I don't really think I have more problems in the winter rather than the summer but I always have found that at anyime of the year my tummy always feels like it is frezzing cold???? don't know what the go with that is but anyway no big deal...
Nadia, do you know if Tofranil is part of the Amitryiptaline group of drugs? And do you that you have any problems with retaining too much? I always seem to have problems with retention & medications :headbang: I am currently on 40mgs twice a day of Oxcy-contin & if I've been in a bad flare & had to take more it causes more trouble than it's worth. I have recently stopped taking Ditropan after about 14yrs because even half a tablet was giving me retention problems. I think is a combo of all the meds though.
Anyway I hope you are all having a better week than me, but I'm going to have a good whinge on the Just Venting board rather than bore you all with my horrible week ( that is if the meds havn't kicked in too much & I can still type) : :loco: :
Take care talk to you all soon
Andrea :flower:

[nss]

Hi Andrea,

I don't know anything about "Tofranil", but do remember that Sara was on it. So hopefully she can shed some light on that. I don't have much of a problem with regards to retaining to much wee overnight (with Endep). Sometimes I find that when I go in the morning, there isn't a hell of a lot, but enough. I think as the morning kicks in and the Endep wears off and I wake up, I tend to go a little more and then back to normal (well, whatever normal is).

Hope that helps.

Sorry to hear you have had a bad week Andrea, hope it gets better for you.

[MarthaB]

:) hi Nadia, I may ask my urologist about endep next time I see him, I still have not got a diagnosis, and I don't get to see him until the 21 of october, I am really worried that he is going to tell me that he cannot find anything wrong. I know that sounds silly, but I know something has to be wrong with my bladder, I have a lot of IC symptoms, the only thing i do not really have is the frequency, but I do get up a lot during the night, my bladder gets really sore, and it feels i could pee a bucket full, but it's not much at all, it's the pain what really wakes me up, and I get relief, but then a couple of hours later it happens again, so i get up about 5 times, it may not sound like a lot to some people, but to me it is, I never used to get up to pee before all these problems started, or maybe just once, buts that's all, I get so cranky from lack of sleep, and another thing, I have to sit down for a few minutes on the side of the bed before lying down again, because my bladder feels like it's having contractions, last night it felt like i was giving birth, it felt like my bladder wanted to come out, i hope I make sense, sorry about the rattling on, take care Martha

[Babs RN]

Hi everyone-
Tofranil is in the trycyclic family of antidepressants and is also know as imipramine.

Hugs,
Barb :grouphug:

[Rosalie]

Martha, as Nadia said Endep ( you will see it referred to Elavil) is an anti depressant but also acts as a slow release pain killer, that is what my uro said. It certainly acts that way for me.
I never really had a problem with frequency, just the pain. I should explain as a footnote that I don't have IC but non-specific Urethritis. I too found this site before a diagnosis and was sure I had IC. I wanted it to be because after so many years I just wanted an answer. I got an answer, not the one I expected but at least one with some solutions.
Only 18 more sleeps before you get an answer.Whatever it is at least you'll have a place to work from.
Rosalie

[MarthaB]

:) hi rosalie, I googled the word non specific urethritis, and it mostly refers to man, and it also mentiones the word sexually transmitted, am i looking at the wrong word? I just wanted to look at the symptoms, but it says just burning when you pee, and discharge, are they the only symptoms??? martha

[Rosalie]

No Martha you are looking at the right word. I nearly freaked when I did the same after getting a diagnosis. I've had problems since I was a small child.
I certainly wasn't sexually active then and no sex change either. It made me question her findings but she insisted that it is a chronic urethritis. Who am I to quibble, her treatment has definately worked.

I feel a bit funny now that I have put it on my signature but I kept having to explain that I didn't have IC but something very similar. Perhaps I should take it off or rename it myself. People might think I'm a sexually altered sex addict! It does sound a bit ickky.
The more I think about it -no burning when I pee, no discharge. I was just so desperate for some relief that when it came, that was that for me.

[MarthaB]

:) thanks for your reply rosalie, it is interesting isn't it , maybe they should do more research for this condition, obviously woman can get it too, nah leave your signature, there is nothing wrong with it, like you said it saves having to explain all the time... martha

[andcohen]

Thanks for that answer on the Tofranil Barb :kissing: You always seem to come up with an answer when I need a medical question answered.
Thank you very much for taking the time.
Andrea
P.S You must be great at your job :flower: :flower:

[berry77]

Hi Rosalie,
Sorry for the late reply, I was very busy last week, didn't have time at all. I'm on something at the moment, I think I almost beat IC for good!!! :woohoo:
I don't want to tell anything about now as I don't want to raise anyone's hope. I have been trying it on myself for a few months, so far it's working.. :)

I live in Runcorn at the moment, that's nice to hear you have family here, don't forget to visit me if you come up here :)

Take care,
Berry

[Babs RN]

Andrea,
Any time my dear, any time. Glad to help.

Hugs,
Barb :grouphug:

[MarthaB]

:) hi, Berry it's good to see you back again.
martha

[Rosalie]

Berry, you have got me intrigued as to what you are on. But I will wait till you're ready to post.
I'm very glad that you are feeling so good.