Another IC sufferer in Aust.

[Apollosmum]

I'm am new to the IC Network and thought I would post on the messageboard.

I was finally diagnosed with IC after almost 15yrs of suffering with recurrent UTI's and pain.

After lots of research (which there is very little of in Australia) I have found this site extremely helpful, but it is nice to know I am not the only person who has IC in Australia.

After my 4th specialist in all these years, I finally found someone who actually believes IC exists. So with now knowing what is wrong I am now able to take steps to try and help prevent flares.

I have been given Amitriptyline (5mg per day dose) to take to help. I was wondering if anyone else has been prescribed this medication, and if so whether it has helped.

[nss]

:welcome: I am Nadia and have had IC for just over 4 years. I currently am taking Amitriptyline 25mg. Started off with 10mg. If I am in a terrible flare I will take 50mg.

I subscribe to ICSG (Interstitial Cystitis Support Group) newsletter. For $7 a year they send out 4 newsletters. They also list the various states the meetings are held. I can let you know if there is one in your state if you like.

I suggest reading the IC Diet, hopefully someone can post the link. I can never find it.

Another section that might be of some interest to you is this:

http://www.ic-network.com/handbook/ (hope that link works)

There are so many wonderful people here and I am lucky enough to have met one at my local support group.

Nadia :)

[nss]

I just realised that your in Melbourne. My Endep has kicked in. :woohoo:

I had a look in this months newsletter and don't see anything for VIC. I know there are some members here that in VIC. I think there used to be a meeting at a hospital. Sorry I can't remember which one.

Hopefully someone from VIC can help you.

[icjen]

Hi and :welcome: I'm glad you finally know what's going on with you so that you an start taking steps to feel better. This is a great site for any questions you might have. We might have weak bladders, but we have strong shoulders to lean on!! I took Amitriptyline 10mg when I was first seen by the Uro before a firm dx. But soon switched meds after being diagnosed. So, I didn't stay on it long enough for it to have worked for me. Hope it helps you. See you around the boards! :) Jen

[hoping4acure]

Just want to say :welcome:

I never used Amitriptyline...have heard good things about it though.


Keep us posted on how you are doing.

[Rosalie]

:welcome: Kelly. Nice to see another Melbourne girl on the boards. Kirsten, who I'm sure will pop in soon, is a Melbournian too!

There are so many people around here who have had the medical run around for years as well. Isn't it a relief to finally hear that it is not all in your head?
I too finally found hope here in these boards. Through them finding a Uro in Melb. who would listen to me.
As it turned out I don't have IC (although I'm not fully convinced) but something quite similar, and so far what works for IC works for me.

I take Amitriptyline (Endep) 25mgs per day after staring on 10mg. I just LOVE the stuff! It took a few weeks to kick in but my life is back to normal. I still get some flareups occassionally especially if I eat something I shouldn't. The members here have given me some great ideas to cope with those - 1/2 to 1 teaspoon bicarb soda in water works wonders and using an inflatable ring cushion.
This is a fabulous site for support and help. You can rant and rave over anything if you need to. You can just have a laugh and you can pass on your support to others.
We look forward to hearing more about you.
Rosalie

[Apollosmum]

Thank you all for your thoughts and welcomes.

Seems like Melbourne is the IC capital :biglaugh:

I will make sure I keep you up to date on what is happening and if there are any positive or negative changes with my current medication.

But so far so good. The one major positive at the moment is that I haven't had a flare for around 5 weeks and I was sure that I would after having the Flex Cysto last Monday and the amount of pain this caused me (I was still in pain 2 days after the procedure).. Fingers crossed nothing has happened as yet........

[MarthaB]

:) Just wanted to add my :welcome:, martha

[mo_rah]

Hi everyone, :hi:
I'm new to ICN as well (though not from Melbourne). It's really great to see that there are other people out there (other than my ob-gyno) who know it's not all in my head. I took Amitriptyline (50-100mg) for about a year after i was diagnosed. Did nothing for me during the day but got me to a point where i only had to get up for the loo once or twice a night (bliss). I stopped taking it when i started working full time though so i could stay awake. Jo

[Apollosmum]

Hi Jo
Wow you were taking such big doses of Amitriptyline. I am only on a very very low dose at the moment (5mg) to see if this is all that I need to help me with flares. I can understand about the tiredness though, I am finding it hard to stay awake during the day at the moment (might be my system trying to get used to a new drug), if I was taking a higher dose I think I would be a walking Zombie. :biglaugh:

[deviation72]

Hi Jo, and hi fellow Melbournian, Kelly! :welcome:

My name is Kirsten and I was diagnosed with IC three years ago and have lived with the symptoms for about 5 years. I take Tofranil (imipramine) 50mg at night, as well as pain medications pretty much daily. This board has helped me enormously :grouphug: so feel free to ask lots of questions, read up about your fellow Aussies, and join in our chats (we're particularly active in the Arts, Crafts and Hobbies section at the moment, talented lot that we are). You'll find a very supportive gang of Aussies here that will help, especially as many of the treatments and management things the Americans talk about on the boards aren't available here, or we can only get by spending a lot of $$$$$.

[deviation72]

Aaah Kelly, I see you are a cat person too! YAY!

I am the proud mother of Charlotte, a beautiful 3 year old silver striped tabby that I adopted from a shelter earlier this year. She helps enormously with my IC as she likes sleeping under the covers with me occassionally, and when my bladder is hurting and she's sleeping against me she makes the most *purr*fect heating pad!!!
:cat:

[Apollosmum]

Hi Kirsten

Yes I have 2 monsters..

Shilo has just turned 5 and she is a neurotic black tortoiseshell. The girls in our house love drugs, me with mine and Shilo has a daily dose of Clomicalm (animal prozac). I have been told that any cats with ginger are crazy and she certainly is.

Apollo is my baby boy, although he is now 3. He is a real baby and loves his hugs and kisses, although he is very spoilt. Because of this, if he doesn't get his own way or enough attention he turns into a monster which drives not only Shilo crazy but me and my partner Craig as well.

Who need kids, when you have cats who think they are babies....

I also got both of mine from the Animal Aid. Without me these guys probably wouldn't have had a life and now they live like a king & queen...

[deviation72]

Aaah Clovicalm... my sisters cat is on that after the trauma of a serious car accident, poor fluffy!

I call my cat my daughter and I am her Mummy so yes, who needs kids?? Heh heh.

My partner loves tortoise shell cats, she has made friends with one around the corner and she goes to visit it regularly! She once had a tortoise shell but she was a naughty cat and ran away after having her kittens - wasn't taking to motherhood, obviously!

My fave cats are greys, silver tabbies and anything back and white... sigh... I could talk about cats for hours....

[Apollosmum]

My Apollo is black and white...

He has 3 white socks and a big fat white tummy and on white on his chin... He also has a little off centre white blaze on his nose. He is very cute but as I said before very naughty.

But it is nice to know that when I am having bad days he loves to come snuggle on the bed with me with motorbike purrs and give me licks on my nose (Apollos kisses).

I know what you mean..... I could go on for ages about mine as well......

[mo_rah]

I agree with the idea that ginger cats are crazy. I found my kitten, The Kitty Whompus, wandering in my yard one freezing cold night. He was so tiny and nobody claimed him. I like to think he came and found me on purpose. He is the most adorable little thing and an absolute ratbag. i guess he's only about 6 months old, so i'm hoping he'll grow out of thinking my ankles are part of his dinner :tsk:

[andcohen]

Hello to our newbies :welcome:
My name is Andrea & I live in Mildura, Victoria. I have had IC since the age of 19 I am now 34 so thats a fair while in my books, although it took about 7 years for someone to finnaly give me an answer to my nightmare. Unfortantualy I have to travel so far to see any specialists :headbang: Sorry no cats in our household, hubby is not an animal lover :mad: But I did use to have the most beautiful siamese who has now been adopated by my parents. I am married ( Justin) & we have a 3 year old son Cohen & honestly with him I don't think I would have time to look after a gold fish.
Anyway glad you both have found us & don't be afraid to ask anything here no matter how silly or personal, as I am sure you will soon find out almost anything goes here & most of the time someone will have an answer for you.
Ok thats it for now & look foward to chatting more to you soon.
Take care
Andrea :flower:

P.S if you don't mind I was wonder what are the names of the DR that you see in Melbourne Kelly.

[Apollosmum]

Hi Andrea

The specialist I was referred to is Miss Helen O'Connell. I took me about 3 1/2 mths to get an appointment with her (and that was with Private Health Insurance). She works from Melbourne Private Hospital and is the only Female Urologist is Australia.

You should ask your doctor to send a referral to her for you.

Hope you can get in to see her. I was nice to actually see someone who knows about IC and not just telling me that it is just another infection. Drink Cranberry juice...that helps (as we know this definately doesn't help IC).

[deviation72]

Hi Kelly,

Helen O'Connell isn't the only female urologist in Australia anymore. A few of us see Anita Clarke, who works out of the Mercy Private Consulting Rooms in Melbourne. She is also terrific.

I suspect there are other female uro's around now, as times have changed a bit! I think at one stage Helen *was* the only female uro in Aust!!!! :)

[Rosalie]

Hello Kelly
I know of at least one other female Urologist. Dr Anita Clarke in Grey St East Melbourne.
I see her and she is very good.

I don't have a cat anymore, my hubby is very allergic to them. But before I met him I had the most gorgeous little black moggy called Warwick. He was as mad as a cut snake!. Would hide behind the door and as you went passed he would launch himself and land on the back of your leg hanging on with all fours.Ouch!!!
At the time I also had the most beautiful Keeshond called Sharni. The gentlest dog you could ever meet. Warwick would wait till Sharni was asleep, run past him at speed and smack him on the ear as he flew past! The funniest thing I ever saw. I even have a photo of him doing it!

[Katrina]

Just wanted to add my :welcome: to the ICnetwork. Feel free to ask me any questions. I hope you love this board as much as I do! :) Sorry you have IC but so thrilled you found us. :grouphug: :welcome:

[Apollosmum]

I haven't heard of Anita Clarke. My GP referred me to Helen O'Connell as he said she was the only female specialist in this field.

Good to know that there is more than one around. Hopefully there are some more out there as well to help our fellow sufferers as all the male urologist I have seen were no help at all...

Hopefully Andrea might be able to see either of these 2 specialists to help her..

[deviation72]

Hi Kelly,

Did you know that Helen O'Connell is also an international expert on the clitoris? (Sounds funny, I know, but she has made some interesting discoveries). I teach sexuality and gender studies at university and once taped a doco off SBS for my classes with her speaking about her discoveries. Fascinating stuff!!! Yet to show the doco in class, but it was nice to know that Helen O'Connell is also an IC expert!

[Apollosmum]

Hi Kirsten

Yeah, I am aware of her studies on female sexuality. I am sooo happy to have her as my specialist as she also made me aware that I have Pelvic Floor Muscle issues as well as IC. I think this may be due to me always contracting my Pelvic Floor when I have infections or flares... 15yrs of the best Pelvic Floor exercises and I have been told I need to do Pelvic Floor Relaxation exercises. :hmm:

It is all making sense to me now with my bladder problems as well as some gynae issues that I have as well. She told me at the time of my cysto that my bladder is not nice and pink like everyone else (or red and inflammed with IC) but has a white coating which is caused by hormone deficiencies, and guess what my gynae told me in Jan of this year after having a laproscopy and hysteroscopy (I have ovarian cysts, but lucky for me not PCOS) that I am estrogean deficient and don't ovulate. Lucky me...When it is time for kids (which might be around the corner) Fertility Treatment here I come.. :woohoo:

[andcohen]

Thanks for the info on your Dr. Kelly. I have heard of both of these female DRs in Melbourne as well as Anna Rosamile ( not sure of the spelling) She was a guest speaker at an IC support group meeting that both Rosalie & I attended in Melbourne earlier last year & have heard great reports about her. I have seen DR Peter Dwyer a few times but I should get a referal to one of these Drs at my GP app. this week. At the moment it is just having the money to get there, & it is too far to do a day trip so we would have to at least make a long weekend out of it, mabey after Christmas? I am not working at the moment except for a day here & there at a daycare centre, so funds are pretty tight :mad:
Have you heard of the IC support meetings held in Melbourne? I have met Rosalie through one of these & hoping to meet Kirsten one of thse days. It would be great to all get together at some stage.
Anyway take Care for now
Andrea :)

[MarthaB]

:) Rosalie I just read that you used to own a keeshond, they are a dutch breed, and they are indeed beautiful, my sister in law used to own one too.
Did you know that the name kees is a boys name in holland and the word hond is dog in english, just thought you might like to know ....or not haha
martha

[Rosalie]

Martha, I loved that dog so much that I studied up on the breed. They are also known as "the dutch barge dog" They were used to pull barges along the canals as well as being wonderful watchdogs on the barges. Also they were named for a dutch king Cornelius- known as kees.
I had a fascinating book about keeshonden once but it has gone missing in the many house moves I did in my younger days. I will put up a photo of him as soon as I can>
One day I will have another keeshond but I will have to save the pennies to get one.