Are there any other Aussies?

[Peta]

Just wondering if there are any other Australians out there that are having simliar problems?

Peta hi

[suzanner]

Hi Peta
I am in NSW (Australia).
As yet undiagnosed, but today I was browsing the web for information on my symptoms. I am new at all this.

[Peta]

Hi

Good to here from you. If you suspect you have IC, you probably have! Had symptoms since I was 12, only just diagonsed with IC last year. Hard to find a doctor who know and understands about it. I am really luck. the doctor I found was in Townsville. He is the Professor of urogyncology at the medical school and run the Pelvis research centre at one of the Townsville hospitals. (I have just move to Toowoomba to be with my partner) I fly up to Townsville every 8 weeks for treatment in the hospital. When you see a doctor make sure you know all about IC and ask for tests to be conducted. Good luck and talk to you soon

Peta hi

[suzanner]

Hi Peta
I am approaching finding a doctor in a number of ways. Ive searched the web and found the urological society www.urosoc.org.au. (http://www.urosoc.org.au.) Got names and numbers. Then I rang my local hospital/urology clinic - the names corresponded. So I rang the Drs. rooms and asked "do you treat interstitial cystitis". My first appt is the end of March! I am not neurotic, but I do think I have IC - its "flared" every month (sometimes twice)since July, and when I think back, periodically for 20 years!

Please tell me I am on the right track..

Suzanner

[Ronald]

Hi Peta, I am another Aussie with IC I have had it for 11 yesrs and been in hospital 22 times, I live in Victoria Pascoe Vale. By the way I am a male and I am on the strongest pain killers available, Oxycontin 80mg, Oxynorm 20mg, Endone 5mg.
Anyway good luck in your quest.

Ronald :p

[KODY]

Just wondering if there are any other Australians out there that are having simliar problems?

Peta hihi i am an ausie from queensland nice to meet you

[KODY]

hi i am an ausie from queensland nice to meet youi have had ic now for 5 years and are having a really bad time with it atthe moment would love to chat to you

[elvee]

Hi Peta,
Hello to you from Melbourne, there are more Aussies around here than I thought also.Hope you do well.
Elvee

[Rosalie]

How wonderful to meet five new aussies in one day!
:welcome: :hi: Elvee, Kody, Peta, Suzanner and Ronald. You have come to the right place for support and help, as well as a laugh every now and then. Anything that takes your mind off this horrid disease for a few moments is good thing.

Suzanner, I also found this site by trawling around the internet and got so much help and good ideas that helped enormously before my final diagnosis.While I am a little older than you, we are close in age and I too had symptoms for many years, getting pushed from one doctor to another.Finding this site is what finally armed me with more ideas to take back to the medicos. Not to mention, saving my sanity :loco:
Elvee, I see Anita Clarke in East Melbourne and she has been wonderful. There is also a support group which holds 3monthly meetings in Heidelberg, with the next one in Sept.
Peta, my husband is a banana-bender too, coming from outside Allora which is about an hour from Toowoomba on the Darling Downs.So I have visited Toowoomba a number of times.
Ronald, you are just accross the freeway from me as I am in East Keilor! I'll give you a wave next time I'm on Bell Street.:lmao:
Kody, what part of Queensland are you from? One of our wonderful members, Martha is from Brisbane, hopefully, she will pop in to say hello.
There are quite a few more aussies on the boards. Ronald, we even have another bloke - George.
The aussie thread has been a bit quiet of late. Perhaps it live liven up now with so many new faces.

[deviation72]

Hi everyone, and hello new people (or is it person... I notice this is an old thread)....

Will chat to the other new people in the other thread I just found...

:smile tee

[chernobyl]

Hi,

I live in Sydney and have a great urologist. this site is a blessing, I have learned so much from everyone on here. It's nice to know we are not alone. :hi:

[danii26]

Hi everyone

I'm from Sydney Australia and have had IC for around 3 years now. Does anyone know of any IC support groups in Sydney?

[anxious one]

:hi: Hey everyone :) Haven't been here for a while- lovely to see some new people! There are definately quite a few of us aussies on this board now- even though some of us visit very rarely! (That's me, sorry!!!)

I am still busy with my little baby - not so "little" anymore though, he's 8 months now and becoming a big strapping boy!:) My back is killing me from lugging him around and my bladder has been shocking of late. I was doing ok for a while but for over a week now I have had unbearable urethral and vaginal burning and itching. (Gee, it's great what we talk about on here, isn't it??:rolleyes: ) I almost went to the dr as I was really starting to think I had a UTI. It comes and goes though- just when I think, "hey, my bladder isn't TOO bad right at this very minuite.." BAM! it hits!! I upped my endep to 70mg this week and even had to take some panadeine just so I could sleep. Also tried some thrush treatments in case that was the culprit but to no avail. I'm over it!!!!!

Anyway, hope all of you newbies find the help you are looking for here and hugs to all.

Sara

[jodi.b]

Hi Peta,
As you can see I am from Melb. I am undiagnosed but thru this wonderful site I am on the right track as to who I should see to help my infuriating symptoms.I have had problems on and off my whole life. Since May I have had symptoms constantly and it is altering my lifestyle.
I hope you get as much out of this site as I have and all the very best.
Regards
Jodi

[helenprestegard]

HI im moving out to perth and need some advice on good urologists, or even liefe in general would be good, haha, hope everyone is having a good ,positive day today. Please let me know if anyone knows of any uros, or just good doctors that listen. I sopke to a young girl of 19 on here last. hope u are doing better, sorry i cant remember your name, please let me know how you are getting on if you got my post. Positive thinking to all, Im quite sure it goes around, LOve Helen.

[helenprestegard]

HI I had chronic backache, bladder infections, burning , the lot. what I did is took antibiotics for the infection, or even with no infection , then took diflucan for one month, as soon as that cleared up I had a bladder distension, this took away all my back pain. For sleep I take ambien, for anti anxiety I take paxil, ELavil is better, but it dries out my mouth to much. It may work for others, for pain I alternate from ultram TO fentynl Patches. I have not taken these for 3 months, I just hope the distension lasts two week more, we are traveling to Perth tomorrow, so ill keep my fingers crossed. I wondered if anyone had had a good bladder distension down in Perth by a recommended uro.

[*Jelly*]

Hi everyone, been away a while, sorry for that. And hi Peta, i'm from brissy. :hi: Hope your doing well today.

I myself have gotten a new job. Retail work, seems fairly cruisy which is good. I'm free to go to the toilet or a break if need be. Not like another place I worked at for 3 days. Way to strict, bladder couldnt cooperate. Though I am standing all the time. Having a little bit of annoyance too atm, just slight burning, irritation and frequency. What does everyone take for frequency? its not one of my main probs (thats burning) but any remidies that help?

I think this small flare though is due to stress, i've been a bit highly strung lately. I think i need to change meds too. Im on tofranil, but need something stronger for my head and bladder. Need to distract myself, been doing that a little with some retail therapy since I have an income again :bonk:

Oh one last thing, Ive been drinking alot of green tea lately, I think that seems to help. I use just dilmah brand i think, tea bags. Even if it doesnt help, i feel refreshed and it lifts my mood too. Just something you may want to try if your feeling down. Has alot of antioxidants and other benifits too.

[helen newcastle]

Hi is there anyone living in perth in this group, I have just moved here and could do with a few hints an good doctors, Hope im lucky to find someone Helen, My private e mail is haprestegard@yahoo.com.

[jodi.b]

Hi Helen,
I am from Melb and have been excellent for about 3 months,and...... now I have a flair. VERY annoyed.
Interesting that I have run out of Serrapeptase, which I take regularly as an anti- inflam.
So I can not help you with any info regarding Perth. Best of luck with sourcing info and help in Perth.
Regards
Jodi

[lisalau]

Hello everyone, I am Lisa and live in Sydney.
I see Prof Van Caille at the Royal Women's Hospital and Prof Millard at the Prince of Wales.
Prof Van Caille is my angel! He was the first doc to believe my supposedly impossible symptoms existed and set out to prove they were, which ofcourse they do! (even if apparently only cats have this condition)
I highly recommend anyone to his kindness,
I think the problem with finding good docs is that we seek not only doctors but diagnoticians, the few with the skill to see a set of symptoms and diagnose them and seek a solution even when the exact combination does not exist in textbooks.
Welcome to all new and not so new Aussies
I am so happy to be able to meet with you all in here
hugs

[helen newcastle]

Hi Helen,
I am from Melb and have been excellent for about 3 months,and...... now I have a flair. VERY annoyed.
Interesting that I have run out of Serrapeptase, which I take regularly as an anti- inflam.
So I can not help you with any info regarding Perth. Best of luck with sourcing info and help in Perth.
Regards
Jodi
hi Jodi thanks for your reply, Im relly desperate tp find a good uro in Perth. I wondered what serrapetase, if u can send me some info on it if you could it would be great. their dosent seem to be too many Australians with this, have you got skype. this is wer u are enable to actually talk to people and see them over the internett, it is free to download and free to talk. you only need head phones and a camera, aroun 30 dollars. I really miss my support groups, and miss visual contact with people, I dont know if anyone else out there would be interested in this. Anyway sorry your in a flare, do get cold and shivery, and really exausted with it , do have backpain. mine always cones when I ovulate and a week before muy period. Anyway get better soon ove Helen

[helen newcastle]

Hello everyone, I am Lisa and live in Sydney.
I see Prof Van Caille at the Royal Women's Hospital and Prof Millard at the Prince of Wales.
Prof Van Caille is my angel! He was the first doc to believe my supposedly impossible symptoms existed and set out to prove they were, which ofcourse they do! (even if apparently only cats have this condition)
I highly recommend anyone to his kindness,
I think the problem with finding good docs is that we seek not only doctors but diagnoticians, the few with the skill to see a set of symptoms and diagnose them and seek a solution even when the exact combination does not exist in textbooks.
Welcome to all new and not so new Aussies
I am so happy to be able to meet with you all in here
hugs
Hi just wondered if your doctor had any contact in Perth. we have been here two weeks, and I am terrified to go through the whole process of people not believing me again. do u have ay tips an staying out of flares . Talk to you soon Helen

[jodi.b]

Hi Helen,
Serrapeptase... you can find out all about it when you go into google. It is an interesting product and definitely has helped me.
Now, Are you doing all the usual stuff. I can only drink rainwater or Nobles water. No Chlorine content. Cotton undies only and no g-strings. No acid foods. I am finding diet coke is setting me off . It would be the sugar substitue. No vinegar on salads etc etc
You could phone Anita Clark in Melb( specializes in IC)0n 03 94176241 and ask if she knows of someone in Perth.
No, I do not have Skype at this stage.
Hope this helps
Regards
Jodi

[Rosalie]

Hi Helen and welcome to Aus. When will you be arriving?

I hope you don't mind but I have just rung Dr Anita Clarke's rooms and spoken to her. She gave me the name of a friend of hers in Perth, who deals in the same illnesses that she does. It is a Jessica Yin and her number is
08 9389 1094. Now that number was from 2005 but if it has changed the directory should be able to help you.

Just found this online
Dr Jessica Yin Urologist
Nedlands Ste 15 Hollywood Specialist Centre
95 Monash Ave Perth 6009
Anita is my urologist and I have great faith in her..she diagnosed me after the years and years of searching for some help. And has helped me to this place where life is now livable.
Good Luck

[helen newcastle]

Hi Rosalie thanks for doing that for me . I will try Jessica Yin tomorrow, what meds are u on. I take tramadol for pain, sleeping tablets, ambien. and also lorezepan to calm me down . I was getting terrible panic attacks. Hopefully dt Yin can give me a repeat perscription. I have had Ic for 7 yrs and went through a total nightmare trying to get diagnosed. we moved to Perth one week ago. I just hope I dont have to start explaining it again. We lived in Spain for two yrs and the doctrs there even after doing a bladder distension ,which by teh way helped me., still refused to believe I had Ic. It has been a total nightmare. Hopefully Perth may be easier. Tks again Helen

[Rosalie]

You are very welcome Helen. I take Endep (known in the US as Elavil) for pain and this gets me through. I feel very fortunate that this is all I need. Whenever I flare up, the old bicarb soda in water usually helps. Otherwise heats pads and ring cushions help too. Touch wood, I haven't needed anything any stronger pain killers for a while.
I know what it is like to be on the medico roundabout. My symptoms started when I was a child and at 54 I was only diagnosed a few years ago. IC was never even mentioned as a possibility. It took me stumbling onto this web site, to get the nerve to have one more go with the drs and insist that they refer me to Anita Clarke, who I also found online.
Are you holidaying or staying for a short time in Australia? Or have you moved here permanently?
Good Luck with Dr Yin. I hope you can get in to see her quickly and that she is what you are looking for.

[helen newcastle]

Hi everyone hope u are all well , im reallly interested in everyones story, how thareey think their IC started, mine strted about 10 yrs ago . It began with a bladder infection , that never went away, my diet helps, no tomatoes, fruit, coffee, alll acidic foods. I take tramadol for pain, I was in oxycontin but my symptoms have improven since I had a badder distnsion 6 mths ago. It completely took my backache away for the first time in 10 yrs, It was so nice to feel half normal again. We are now living in Perth, I hope to fnd a support group heret go to, does anyone have one in Melbourne or Sydney, stay well Helen.

[Smokey]

Hi Helen,

My name is Lorena and I am from Melbourne. My ic started from a single uti also. Then came the frequency and urgency after that. The pain didnt start happening till about a year ago off and on. I have had ic for around 3 1/2 years. I went to three specialists and finally I found a great lady uro who diagnosed my asap. I am on feldene x 1 10mg, and ditropan 5mg x 1. Also I am taking inner health plus one capsule per day. I also follow the ic diet. So far so good no pain and the frequency and urgency have gone back to normal. We do have a support group here in Melbourne the next one is in March. I think Rosalie might have the info.

Take care

Lorena

[Rosalie]

Helen, my symptoms started when I was a child. I can remember as young as around 10, having bladder pain. I am 54 now and was only diagnosed a few years ago. Fortunately, I had periods where the symptoms dissappeared or flared irregularly and not too often. But I also had years where I went from one doctor to another and still with no idea of what it was, tried many many differing treatments. Now thanks to Anita Clarke and this site, I now have most days pain free and I can pretty much control any flares.
There is a life with IC!

[Hollyd]

You are very welcome Helen. I take Endep (known in the US as Elavil) for pain and this gets me through. I feel very fortunate that this is all I need. Whenever I flare up, the old bicarb soda in water usually helps. Otherwise heats pads and ring cushions help too. Touch wood, I haven't needed anything any stronger pain killers for a while.
I know what it is like to be on the medico roundabout. My symptoms started when I was a child and at 54 I was only diagnosed a few years ago. IC was never even mentioned as a possibility. It took me stumbling onto this web site, to get the nerve to have one more go with the drs and insist that they refer me to Anita Clarke, who I also found online.
Are you holidaying or staying for a short time in Australia? Or have you moved here permanently?
Good Luck with Dr Yin. I hope you can get in to see her quickly and that she is what you are looking for.

Hi Rosalie,

Sorry to come in here but it sounds like you really like Anita Clarke. I'm in Melbourne and saw Anna Rosamillia and was very unhappy. I'll be seeing Daniel Moon (can't get in until 7 March) but doctors say he's great. Wondering if you know anything about him. If that doesn't work out or if IC/PBS isn't his thing I would like to try your doctor. Are you very pleased?

Anyone else know anything about Daniel Moon?

Thanks:-)

Holly

[Smokey]

Hi Holly,

Just to let you know I see Dr Catherine Temelcos in East Melb also where Anita Clarke is, I think they work together on the same floor. Catherine is great she was the third specialist I saw and being female she is very understanding. when I saw her on my first appt she straight away suspected it was IC and it was. Also she is very good with her appointments you dont have to wait long to see her.

Good Luck with everything.

Lorena

[Hollyd]

Thanks very much Lorena! It's scary not knowing who is good. Did she do a cystoscopy to diagnose? I'm still waiting to have my follow-up session with the gyn who did my cystoscopy (because I had to do a hysteroscopy as well) but he said my bladder is perfectly normal. I don't know whether that means he did or did not look for hunners ulcers and those glomerulations but he said he saw no signs of IC. But the symptoms suggest IC or PBS. Do you know if they say it is not IC if you don't have those ulcers or glomerulations in Australia? It seems in the US they don't go by that, but rather the symptoms and ruling out all other causes. So much to learn while being quite out of it!

Thanks so much for the name.

[Smokey]

Hi Holly,

My uro did a cysto with a hydrodestention, ic will only show up with they do the destention with it. Before I found catherine the other specialists only did a cysto and they said my bladder looked normal. If they only do a cysto your bladder will always look normal even if you have ic. No I didnt have ulcers but I did have plenty of the red broken veins, she gave me pictures of my bladder also. she also did a biopsy but that was negative. did you get a cysto with a hydro done? what symtoms have you been having?

[Hollyd]

I kept asking him if he was going to do a hydrodistention and he kept saying yes. Then just before the surgery he said a hydrodistention is always done w/ a cystoscopy....hmmm.....after reading here I've learned there is filling the bladder to capacity and filling it over capacity which is the distention part. Though he seemed to be aware that some people w/ IC are made to feel better from a hydrodistention for a period of time. He said he was going to take pictures and I intend to show those to the uro I'm scheduled to see.

My symptoms are crazy frequency - on a bladder diary w/ 2 ltrs of water I went 30-44 times. If I drink less I'm better. Intense pain which feels like urethral area + intense pressure which feels like pelvic floor, enough to cause pain on it's own. Nurofen plus didn't relieve it and neither did diclofenac given to me at the ER when pain was severe. It took Panadeine forte to relieve it. Some days I was getting by w/ an ice pack between my legs. It felt so inflammatory and the GP thought so too so I was afraid to use any heat. The ice only worked by numbing the area, when I took it off, the pain came back. I've had a renal US, no stones or abnormalities, I also had a negative biopsy with the cysto. Drinking all the water they want you to for several days after the cysto definitely brought back severe pain. I'm drinking less than 2 ltrs now and having less pain but still some.

Meanwhile he has me on vesicare. At first he said I'd feel relief w/ the vesicare in a couple of days but after a week he said it's too soon to say it's a treatment failure.

It's been a week since the cysto and I'm feeling a different sort of pain in addition to the pain I had before. He's checking me for a UTI, won't have that back until tomorrow. Don't know if it's still recovery from the cysto, the vesicare, (causing retention) some new symptoms or what. Very frustrating. Using a microwave heating pad did help w/ pain last night, so got by on panadol only. It doesn't feel like a UTI.

If I'm not satisfied with the uro I'm definitely calling one of those two women in east Melb. I sure hope I didn't make a wrong decision having the gyn do the cystoscopy. There were just possible uterine cancer signs (negative) and the idea of waiting was intolerable. I sure did not want to have two separate general anaesthesias. And I would hate to have another cysto now!

Thanks for your help:-)

[Smokey]

Hi Holly,

Yes a distention if filing up your bladder with water to the capacity that your bladder can handle when under. the capacity they stretch it at can never be done when you are not under it will be too painful. My uro told me my capacity but I can not remember and she said my bladder was smaller. I am not too sure if my bladder has shrunk due to ic or i have always had a small bladder. Yes some people do experience a little pain after the cysto/hydro and also frequency/urgency. I experienced frequency/urgency after mine then after a few days it went away. also not all cystos are done with distention.

Please do not stop drinking water it can be more irritating to your bladder.

if you are having pain in the urethal area it could be urethitis which can be located at the neck of your uretha (sorry about the spelling). rosalie who is another aussie and comes on the forum has urethitis. I am sure she will happy to explain her situation.

with the frequency side of things are you sticking to the diet? I know when I eat something bad my frequency goes up and also when I am about to get my period and my first day of my period. also things like aspirin and Ibrofren painkillers could be a no no for the bladder.


My first specialist was a male gyn he only did a cysto.

Go back to your uro and get pictures of your bladder. if you are not happy move on to another doctor. sometimes it can take a few doctors for you to see until you find the one you are most comfortable with. I had one doctor tell me its in my head!!! I was so furious. I knew there was something wrong with me so I just kept trying with other doctors.

Holly I hope I have not over whelmed you with info. I am trying to help.

Please feel free to ask as many ??? as possible









I kept asking him if he was going to do a hydrodistention and he kept saying yes. Then just before the surgery he said a hydrodistention is always done w/ a cystoscopy....hmmm.....after reading here I've learned there is filling the bladder to capacity and filling it over capacity which is the distention part. Though he seemed to be aware that some people w/ IC are made to feel better from a hydrodistention for a period of time. He said he was going to take pictures and I intend to show those to the uro I'm scheduled to see.

My symptoms are crazy frequency - on a bladder diary w/ 2 ltrs of water I went 30-44 times. If I drink less I'm better. Intense pain which feels like urethral area + intense pressure which feels like pelvic floor, enough to cause pain on it's own. Nurofen plus didn't relieve it and neither did diclofenac given to me at the ER when pain was severe. It took Panadeine forte to relieve it. Some days I was getting by w/ an ice pack between my legs. It felt so inflammatory and the GP thought so too so I was afraid to use any heat. The ice only worked by numbing the area, when I took it off, the pain came back. I've had a renal US, no stones or abnormalities, I also had a negative biopsy with the cysto. Drinking all the water they want you to for several days after the cysto definitely brought back severe pain. I'm drinking less than 2 ltrs now and having less pain but still some.

Meanwhile he has me on vesicare. At first he said I'd feel relief w/ the vesicare in a couple of days but after a week he said it's too soon to say it's a treatment failure.

It's been a week since the cysto and I'm feeling a different sort of pain in addition to the pain I had before. He's checking me for a UTI, won't have that back until tomorrow. Don't know if it's still recovery from the cysto, the vesicare, (causing retention) some new symptoms or what. Very frustrating. Using a microwave heating pad did help w/ pain last night, so got by on panadol only. It doesn't feel like a UTI.

If I'm not satisfied with the uro I'm definitely calling one of those two women in east Melb. I sure hope I didn't make a wrong decision having the gyn do the cystoscopy. There were just possible uterine cancer signs (negative) and the idea of waiting was intolerable. I sure did not want to have two separate general anaesthesias. And I would hate to have another cysto now!

Thanks for your help:-)

[Hollyd]

Oh Lorena, no I'm not getting overwhelmed from the help, the help and info is great. I really appreciate it.

I have only learned of the diet yesterday so I'm starting on it. Very tricky as a vegetarian w/out tofu. I'm also going to have to try fruits which may irritate my fructose malabsorption but whatever, I can't just stop all fruits.

I'm drinking less than 2 ltrs, not sure how much, I just don't have anything suitable for the pain when I go over and can't keep taking panadeine forte or even nurofen plus because they are so strong and so constipating. I'm not letting my urine get concentrated, I know that.

urethritis, I'll have to look that up and see if the symptoms seem to match. Today I haven't done much research because sitting causes pain. I think I should get one of those donut cushions in a hurry.

I think it's this website http://www.painful-bladder.org/diagnosis-treatment.html

that made me think you can have PBS with the same symptoms of IC so I'm wondering if that is what it is. I see the gyn who has the pictures, etc, in a week and I'll ask him more questions and move onto the uro.

ta!