IC needs ATTENTION

[andcohen]

Hi guys,
I really have no idea how to go about this or where to even start, but I am desperate to get something done. We need to get the word of IC OUT THERE, especially here in Australia. I am so sick of living like this, in pain every day of my life, not being able to anything unless you know where the next loo is, not being able to sleep or rest proparly. I am so sick of the Dr's not really knowing what the heck we are talking about. It seems even if they do say they know about IC there's not much help here in Australia anyway :headbang: I don't know what to do, where to go or even where to start, but I do know I want to do something. Could we contact T.V or Newspapers, magazines something????? Any ideas or help in this would be great. I am going to post in the other boards for some help also. Please lets try & get together on this & help us help ourselves.
Andrea. :help: :help: :help:

[liz25]

Andrea, unfortunatly a lot of doctors look at IC as an excaperoute for other disesases. once i finally got a good urologist I realizaed all the bull **** I had gone through and didn't need to.I have read artiles in womens magazines ,but apparently it goes in one and out the other because nobody is doing amnything. All in all, until someone famous gets a sever case,no one else but us IC'ers and our families care. and if you have a good Dr.,he or she also cares. That's it ,thats the it will end up....unfortunate for us.

:evilsmile :evilsmile

Liz

[deviation72]

Hi Andrea,

I agree. One of the things I've found really difficult about this is explaining the condition to my GP, when they should know about it in the first place!

Pamphlets to GPs are sometimes useful but of course cost money to send to every GP in the country. And of course they need to come from an association of some sort, and I'm not sure we have a national IC association here - at least one with the kind of funds needed to make this condition more known.

And the cynical side of me thinks that until Elmiron goes on the PBS (if it does) and Prelief and other supplements become available here, no-one will know about it - we probably need the backing of a drug/supplements companies advertising their products before we get more knowledge of this disease here in Australia.

Kirsten :flower:

[andcohen]

Thanks for the repely Kirsten. So who do we have to attack in the Government to get Elmiron on the list ? Health Mininster ?? Medicare themselves? Maybey this is something we could aim for!
I really have no idea what I am doing. Having brains dropped my list a long time ago. But I am prepared to do what I can ( God I don't even know how to use a computor, except to blunder my way around the internet & the IC site) Hey I'm a Hairdresser you know what they say about Hairdressers & no brains - pretty right in my case-
Look Kirsten I am just asking anyone for some help at the moment, if I seem to be laying it on a bit hard I don't meen to :bonk: If you don't have time or would rather not get involved thats fine, just let me know. Trust me I wont be offended or anything. I just don't want to step on anyones toes. But this is very important to me I have been living like this for 14 yrs. & I want to bring IC awareness to Australia.
Let me know your thoughts
Andrea :idea: :idea:

[Rosalie]

Andrea
I think getting information out about IC is vital. I nearly went crazy being told there was nothing wrong. If there was nothing wrong, why were there days when I could barely function? I felt alone and isolated. If the medicos didn't know then I must have been the only one on the planet with these symptoms. Finding this site and information about IC was a revellation.
The other day my husband told me that he had seen a woman at a bus stop looking uncomfortable and sitting with her leg tucked under her the way I do to ease the pain. He wondered if she had the same thing. That made me think about just how many more sufferers there are going crazy, thinking they are the only ones on the planet!
I had been to many doctors over many years but I had to find about IC by myself. When I went back to my doctor for a referral to the Uro, he said "Oh yes we have two other patients at this clinic with IC". I could have decked him. How come they got diagnosed?
Perhaps the media is the way to go. Lord knows Ray Martin has done enough shows on people with medical problems. What do you think? I have no idea how to go about it.
Rosalie

[deviation72]

Hi Andrea,

If you want to start writing to someone first off, you should write to the Federal Health Minister, seeing as the PBS is a federal thing. I guess that's still Tony Abbott? His address will be on the Australian Parliament web site.
Medicare don't really deal with drugs and drug subsidies - their focus is on the provision of services.

I also had a thought reading your other post on this subject - how about approaching the TV shows 'Today Tonight' or 'A Current Affair' and offer to be interviewed for a story for them? They have lots of stories about everyday people and some of the hardships they suffer.... and the fact it is so unknown gives the story a real human interest angle.

I can just imagine Ray Martin's intro to the story now: "It's a disease that affects thousands of Australian women and men, it causes insufferable pain and discomfort, and yet we know nothing about it. Folks, it's called Interstitial cystitis, or IC for short...."

Hah! I should be a TV scriptwriter!

Seriously, now - I've had some experience with campaigning for change (not around health issues, though) and it's a slow, slow process. You may get a number of knockbacks before someone agrees to help out, in even a small way. I'll help out where I can, but unfortunately I am committed to some other stuff I'm involved in at the moment that takes a fair bit of my time. But a big pat on the back, Andrea, for starting this, and for wanting to create much needed changes in our little ole country... :angel:

Kirsten :flower:

[andcohen]

I'm so glad a got some more response, I was getting a bit worried no-one else could pitch in & help. I have got some tips from Jill & have already sent a email off to TODAY TONIGHT still waiting to hear back. So feel free to go ahead & pester anyone we can until someone listens. Kirsten if you thought you were able ( basicly I would be a total idiot a trying to wright some formal letter) mabey we could starting drafting up a letter to the Federal Health Minester fowarding our case. We could then throw around some of our ideas until we come up with something we are all happy with & then throw it at them a thousand times if needed.
I won't go on too much today, too tired, I ended up in the ER yesterday morning , I just collaposed in pain & they called the Ambulance for me. Still fell pretty bad today.
So as much as I would love to chat I will save it for later. Once again thanks esepecially to Kirsten & rosalie
talk later
Andrea

[deviation72]

Hi Andrea,

Glad you got some ideas from Jill as well. If I think of anything else I'll let you know. I'm really sorry you ended up in hospital - hope you're feeling a little better by now.

I can't commit to helping with a letter right now, really sorry about that. I already do a pile of volunteer work in the gay and lesbian community that takes up a bit of my time, and I'm *flat out* at work right now as it is end of semester and I have much to do before my students marks are due. But I could look over a draft letter at some stage if you like (being in higher ed, I am good at helping with writing!) but not until the end of November at this stage.

Look after yourself, too - I'm sure everyone on here is thinking of you :grouphug:

[andcohen]

Thanks Kirsten,
Any type of help is great & I understand how busy you must be at the moment. One of my girlfriends is an IT teacher at a local high school here & is always flat out at this time of year. But there is no hurry, we can just keep it all in the back of our heads until where ready. I am going to try and contact DR Anna Rosamile from melbourne, She has attended a hugh Uro/Gyno conference in the US in july. She may be someone who could help? Especially if the Media needed a Medical opion on IC. Just a thought I will try & contact her soon.
Take care
Andrea :flower:

[anxious one]

:bow: :woohoo: Hey guys,... Well, Andrea I COULD NOT HAVE SAID IT BETTER MYSELF!!!!!!!

I am so sorry I have been busy and barely had a chance to glance at these boards. What is ironic is that I was having this exact conversation with a friend I met at my local IC support group and we were today drafting up ideas on what we could do to fix things... I said that you had e-mailed me in regards to the subject but I hadn't had a chance to reply. SORRY!!!!!

Anyway, we were thinking basically what you and Kirsten have said- TV, radio, newspapers, magazines. As soon as I get a chance I am going to write to CLEO & Cosmo and ask if they will do an article on IC or at least do a "real life read" and I will get to tell my IC story. (And gain some publicity, obviously.) I may e-mail them actually. There is also Good Medicine and perhaps Practical Parenting (since for many of us this has occurred post natal.) We were also thinking of contacting Today Tonight, the Today show and perhaps the ABC network because they are usually more obliging with matters like this. If you have already done this that's fantastic. (We had a big laugh at the thought of us trying to go through a tv broadcast with our Ic stress etc! :rolleyes: :biglaugh: )

I rang my uro in regards to Prelief and she said what we already knew- we could order it from the US but didn't have any other suggestions. My friend (who I think you know Andrea, she said she sent you an e-mail or a PM) said she would contact the Australian IC association for ideas.

Look, I am willing to jump on board with anything you want to do to get things rolling. You are exactly right- we are too young to go through our entire lives in pain. (especially with no Prelief etc!!) It's just not fair. There are so many other illnesses and diseases that warrant public support- why not IC???!!!

Time is a factor for me- I have my daughter obviously and I also have animal lib to worry about but I will try to help when I can. Let me know what I can do. I will write to the magazines (e-mail) as soon as I can, hopefully this weekend.

Good on you Andrea, for kicking things off!!!!!

Hugs,

Sara

[anxious one]

:grouphug: :kissing: Andrae, I am so sorry this is what happens when I try to do things in a hurry, I just read that you ended up in the ER!!! Are you ok?? Did they treat you ok??? probably not :rolleyes: Was it an infection or a flare??? I don't know whats going on, we are all having a crap time at the moment it seems. I'm having a shocker today.

Hope you are feeling better!!!!!!!!!!!!!!!

Hugs,

Sara

[anxious one]

Hi again guys, just found this letter on another thread, I think the gals in the USA were thinking of sending it to Oprah- do you think it's ok to use????
(ICNDonna or Jill- please let us know if we can't use this for copywrite reasons! :) ) This letter has been copied a few times from a few diferent threads so I don't know who originally wrote it.

Dear Oprah:

The voices of close to 700,000 Americans are begging you to bear witness to their pain and suffering. We need help and we need it now. Most of us who "live" with interstitial cystitis are dealing with a nightmarish reality that few others can relate to and/or possibly imagine. Our pain is so intense and debilitating that it has been likened to the pain of terminal, end-stage cancer patients. Only for us, there is no end to the suffering that we must endure.

Interstitial cystitis is thought to be a systemic disease that ulitmately targets the bladder, causing it to shrivel, hemorrhage and spasm. If you've ever had a urinary tract infection, multiply the pain of that by about 100 and imagine it never going away. Could you live like that? Would you be the same person, or would part of who you are die? Persons with IC, ninety percent of whom are women, have a constant burning in the bladder that is relieved only by voiding.

In fact, for some ICers, urinating up to 70 or more times a day is necessary because their bladders are basically like open wounds upon which toxic waste (urine) is being dumped all day
long. Unfortunately, removal of the bladder is almost always never an option for such patients because studies have shown that the pain of IC continues to be felt by at least 50 percent of those patients who opt to have their bladders removed as a last resort.


In addition to the above, persons with IC are far more likely to suffer from fibromyalgia, irritable bowel syndrome, lupus, schleroderma, Sjogren's, vulvodynia, allergies and chronic fatigue syndrome, most of which are thought to be auto-immune diseases. As you can imagine, most people with IC also suffer from depression which can be all-consuming and never-ending. (In fact, suicidal ideation is 3-4 more times above the national average for IC patients, and sadly, some patients with IC have resorted to taking their own lives.) Clearly, dealing with IC is a daily struggle for most ICers because it affects one's life on so many levels. Everything from parenting to working to having relations with a spouse can become next to impossible for people with this disease.

We know this isn't a pretty subject, Oprah, nor one that most people would like to think about, but there are simply too many people living with IC to continue this trend. Awareness and understanding of this disease, for which there is no known cause or cure, not to mention decent treatment options, is imperative if we are ever to receive the support, attention and research monies that we so desperately need.

It is time to come out of the closet. For far too many years, before interstitial cystitis was officially recognized by the medical community, sufferers (mostly women), were thought to be hysterical by their (mostly male) doctors. They were told they were sexually repressed, suffering from anxiety and/or emotionally unstable. Campbell's Urology, THE textbook for urolgy residents in the '60s and '70s actually referred to interstitial cystitis as "...a disease that is taunting in its evasion of being understood - may represent the end stage of a bladder that has been made irritable by emotional disturbance."

These so-called professionals actually believed that patients were somehow to blame for the status of their diseased bladders. Can you imagine the mental anguish imposed upon such patients until fairly recently (the 1980s)??? To those of us with IC, it's a secret from the not-so-distant past that the medical community must own up to and publicly acknowledge.

Since so many of us with IC are on disability and
unable to work, we have limited incomes and cannot contribute much in the way of monies for research; thus, we are almost entirely dependent upon funding from the National Institute of Health (NIH) and the Interstitial Cystitis Association (ICA), which, to date, has been woefully inadequate to say the least. Oprah, we need your help. As our country's foremost advocate for women, we beseech you to bring awareness to this dreadful and degrading disease which has adversely affected the lives of far too many women, men, and, yes, tragically enough, even children. It is truly a devastating illness that impacts not only the sufferers, but those that love them as well. Please help all of us to help ourselves. Having our voices heard after too many years of having them silenced would mean so much to the IC community. Thanks in advance for any consideration that you can bestow upon us.

Sincerely,

The IC Community
__________________
Marilyn

Also had another thought- I think we need like a medical bracelet (or card which I would prefer) that identifies us as IC patients. So if we front up at the Er we actually have something to say we have IC which is andebilitating and painful disease and we have been diagnosed by whoever, date etc. maybe that would help with some of the confusion and stop people treating us like drug seeking hyperchondriacs. :rolleyes:

I am in a shocking flare at the moment I actually considered going to the ER at 1am this morning- only thing that stopped me was fear of being treated like an idiot and worse still, being forced to sit in house doctor on a plastic chair whith nothing for pain except Panadol! This happened to me last time! :mad:

Hope you guys are all well.

Hugs,

Sara

[nss]

Sara I just tried to call you to see how you are doing.

I think that letter is very well written and pretty much sums up what how we feel with this debilitating disease.

I wrote an email to the Prelief website asking how we can get prelief here in Australia and this is what she said:

Dear Nadia:

We are continuing to work on getting a distributor for your country. We have had some inquiries, but as yet nothing has materialized. One of the complications is that Prelief is a dietary supplement and apparently falls into a therapeutic drug category in Australia.

Betty

Does anyone have any ideas on who to write to to get it approved here.

I had thought of writing to Dr Kerryn Phelps who is someone high up in the AMA, dont know exactly her title. But she does appear on the today show from time to time talking about various medical conditions.

We have to find a way for Prelief to be available here in Australia. I am sure our lives would be a little easier.

[Rosalie]

Hi Ladies
Nadia, I'm pretty sure the TGA (Therapeutic Goods Administration) is the body concerned with approval of such products. I know it deals with herbal supplements and the likes. I'll get on their web site and try to find out more about getting products approved. It may need a supplier like LifeSpan to make a request to the TGA first?

Sara, I hope you are feeling better today.That is a great letter. If it's to go to the Australian press, it needs statistics on sufferers here as well.

As a side benefit I have copied it to hand to friends and relatives when they ask me what IC is. At 52 and suffering from this all my life, I've only just told one of my brothers. It is really hard for me to make people understand how awful it is without sounding whinning. They still think that if you are ill the doctors will fix it and if they can't, then there probably isn't anything wrong. My sister has seen me through doctors, hospitals, naturopathy and accupuncture but still can't understand.
Andrea sorry to hear that you have been in hospital , I hope they were able to help.
Positive thoughts everyone
Rosalie

[Rosalie]

Hello Again
I've just sent an email to the Distributor LifeSpan. I had dealings with them when working for a Naturopath. Basically, I told them whats going on and asked if they are able to import Prelief. Who knows, a naive request like mine may get some response.
Rosalie

[nss]

I will get in contact with my friend who is a naturopath and see what direction if any she can steer us in. Surely if we make enough noise someone will listen.

Does anyone subscribe to "In Contact" which is the newletter of the Australian Interstitial Cystitis Support Group in Kingswood NSW. I have yet been able to track a phone number down. By contacting them we might get an indication of how many members they have attending the various support group meetings.

If anyone can locate a phone number could you post it here or perhaps call them to find out numbers.

There web site is:

www.users.bigpond.net.au/icsg

Nadia

[nss]

Still haven't heard from my naturopath. I did a search lastnight in google to see if the ingredients in Prelief were possibly available here, but hit a brick wall. Found Calcium Glycerophosphate, but the quantities in the bottle were very low in comparison to what is inside prelief.

Prelief Tablets: Each tablet contains 345 mg calcium glycerophosphate (65 mg of elemental calcium). The tablets also contain 0.25% magnesium stearate as a processing aid. Two tablets are equivalent to 690 mg calcium glycerophosphate (130mg of elemental calcium).

There has to be a way to get it here, without the huge postage charges.

[anxious one]

:bunny: Just wanted to say hi guys, (long time no see, Nadia LOL) As soon as possible I am going to start sending out letters to people, magazines tv shows etc... do any of you know if we are allowed to use that letter I posted?/ (with changes obviously.) Also need to find out just how many IC sufferers there are in Australia...

Am so determined to do this.

Has anyone spoken to Andrea?? I might send her a PM.

Cheers,

Sara :)

[Rosalie]

Hello Ladies
Check out the thread "Oprah" Where they are mounting a campaign to get Oprah to cover IC. Andrea, I know you are aware of it.
I've copied a message from Bridget. I think it's a great idea and hope you all want to join in.
We still need to carry our ideas through here, but if the Oprah show covers the story it may initiate some media interest in Aus.
What do you think?
Rosalie


"OK EVERYONE HERE IS THE DEAL
I THINK THE BEST WAY FOR OPRAH TO HEAR OUR STORIES IS THIS
IF EVERYONE (WHO WANTS ME AND THE WORLD TO KNOW THERE STORY) SEND ME YOUR STORY VIA E-MAIL BY DECEMBER 1ST 2004 AND I WILL SEND OPRAH A VIDEO (I'LL DO SOMETHING EYE CATCHING) AND ILL PRINT EVERY E-MAIL I GET ON BRIGHT PAPER (SO THEY STAND OUT) IF YOU WANT SIGN ALL E-MAILS
WITH
YOUR NAME
E-MAIL ADDRESS
HOME / MAIL ADDRESS (IF YOU WANT TO SHARE)
HOME PHONE NUMBER (IF YOU WANT)

THANKS
BRIDGET PIGEON
southms_ic@yahoo.com
LUMBERTON, MS 39455 "

[deviation72]

Hi guys,

Just want to say I'm impressed with how you are all banding together to get something known about IC. When Andrea asked me if I could help a couple of weeks ago, I felt awful that I couldn't - alongside full time work and general life issues there's not much time for anything else for me at the moment. But if you want someone to proof read things you send off, or something like that, I could help - am a good proof reader, after all it's what I do as part of my job! (teaching at uni)

Am in the middle of a flare, the first in weeks, and after feeling OK for a while, with only twinges of pain here and there it's really hit me hard to be sick again and I've been a bit down. Thank the goddess I am seeing my uro next week. And thanks to all of you I'm going to be armed with some better info so I can ask better questions about alternative medications (need something to reduce nighttime frequency and help the sleep, as Tofranil does nothing for that for me!), so I am feeling very grateful to have you guys to 'vent' to and to ask questions of.

Let me know if there's any proofreading you want done and I can give you my email addy to send stuff to...

Thinking of you all,

[andcohen]

Kirsten,
I see that you are on the boards at the moment so I hope that you get this soon. I am sorry that your IC is giving you a hard time :mad: I know it is so hard to hold down a full time job & live with this condition. I had to stop work all together a couple of years ago & now only manage to work 2 days a week ( I have a 2 yr old so that takes up the rest of the time). In a way I'm glad because it lets me stay home with him. ( I guess that's the only good side to IC that I can think of) I have still had to take off plenty of days though, so it must be hard with a demanding job like yours...
Please don't feel presure to go over & beyond with the IC awarness thing, we all know that you will do what you can & it is great that you have offered to help us with any letters & so forth. We can all only do what we can, there are Jobs, Family, Relationships & so many other things to take care of in our lives it hard to fit it all in at times. I know at the moment I feel really run down & tired so I haven't done a whole lot in the IC awarness issues, but I know these things are not going to happen over night.
Take good care of yourself, & talk to you later
Andrea :flower: :flower:

[andcohen]

Rosalie great to see you on board........ As you know I have seen the Oprah thread & are willing to help if I can. I was thinking mabey we should do a similuar thing here with one of the T.V shows??? I have the letter here that was posted awhile ago by someone & was thinking we could use that??? I will check with Jill to see if that is OK..
Hope things are good for you :)
Andrea

[nss]

Today I spoke to my local pharmacist and he looked up the ingredients of Prelief and unfortunately he said that ingredient isn't available to us here. I asked him how one can get it approved here for sale. He said that it costs thousands of dollars and alot of red tape. He said even if a product has been used overseas successfully for eg 20 years it is still hard to get it approved. Sorry I hit a brick wall there. :headbang: :headbang:

I have a list of possible places to submit our letter informing the public about IC, let me know what you all think.

A Current Affair
Sixty Minutes
Today Show - Possibly getting Dr Kerryn Phelps to appear discussing IC(president of AMA) maybe even sending her a copy.
Sunrise (NSW - dont know if its shown in other states)
Womens Weekly
Womans Day
New Idea
Sydney's Child (Parenting newspaper)
Cleo (as mentioned by Sara)
Cosmo (as mentioned by Sara)
Parenting magazines

There is health magazine out I cant remember the name, I think it comes out monthly.

Thats just a start, if anyone has any other ideas, please feel free to list them

Contacting the Interstitial Cystitis Support Group newsletter organisers and maybe finding out how many members they have, so we can get a rough idea as to how many members it has. I am almost certain there will be many more people who are undiagnosed and others living with it who arn't on the list.

I'm off to bed, my Endep has kicked in. Night all.

[Kahlen - Sue]

I have sent my story as you have asked. Good luck to all of us. Don't hesitate to send your story in, the more people that band together the more we will be heard.!!!!!!!!!!!!! This may be a silent disease, but we aren't!!!! Sue ( Canada ) :grouphug: :ignore: :idea:

[anxious one]

:bunny: Hi guys, so glad to hear (see!) you all on line again...

that was me that posted that letter, I have to check with Donna and Jill that we are ok to use that, (with changes obviously.) I think it's a great letter.

nadia, your list is great, the health mag you are thnking of maybe "Good Medicine???" The only thing that concerns me with that mag is that they only seem to write about stuff that has a cure (go buy this, this and this!) I could be wrong though, we may as well try them. SUCKS about the Prelief!!! :cussing: Still don't want to give up but looks like we have a battle on our hands. Maybe we will have to raise money some how... obviously we need publicity first! :rolleyes:

Rosalie, those ideas about sending in individual stories are great and I like the sound of putting it on different coloured paper, (thank-you Bridget!) Hope those girlds do well with Oprah as it will eventually screen over here if it gets on air.

:grouphug: Sorry to hear you are flaring, Kirsten... what do you think caused that?? I am in a massive flare at the moment, have been since I started the endep and I am in the worst pain that I have been in since I was officially diagnosed. Don't know if it's the endep but I am going to ring my doctor and discuss it with him. So unfortunately for you I can't reccommend the endep yet (I am actually going to the loo more often then before!! :mad: ) but I know Nadia swears by it. I hope you feel better soon!!! :pray:

Andrea, I wrote you a long PM and somehow it disappeared!! :mad: I hate computers. Will write again soon but I'm glad to see you back on this board. Are you ok now I know you had a rough week...

SO guys, maybe we should start allocating some tasks!!!!! I'm happy to edit that letter and post it for you guys to check. I need to know how many people have IC in Australia... maybe I will ring mu uro, or Nadia could you contact the IC association?? You have probably given me their contact details but you know my memory!! :rolleyes:

Hugs to you all,

sara

[Kahlen - Sue]

Hi, I emailed my story to Rosalie at southms_ic@yahoo.com. I'm not sure if that is your email or someone elses as your ID in ICN is different. I really hope this goes to where we can get some help. If there is anything else we (in Canada) can do, please let us know. I will forward the email address off to the people in our support group so they can send their Stories too. Take care, Sue :angel:

[deviation72]

Hi Andrea,

Thanks for your kind words, my IC has settled a bit but I'm still feeling tired from lack of sleep and the like, you all know about that! I'm very lucky that my current job allows me to come in late if I've had a bad night (provided I've got no classes or meetings to go to) but I still have to get the work done so I often take a lot of work home in the evenings to catch up. I can totally understand why people have to give up work, especially with family committments - I can't imagine what it would be like to have kiddies as well as IC. I admire all of you Aussie mums (and dads) who are living with IC! :angel:

Do let me know if I can help with letters, or anything else like that. I do want to help and just wish I had more time to devote to it (believe me, I'd rather be doing that than marking some of the terrible assignments sitting on my desk!) I get so frustrated that we can't get stuff here like Prelief, or any of those other supplements that would life just that little bit easier. If I get a chance I will write up an email to send off to Rosalie for her to forward on to the people sending stuff to Oprah - that sounds like a great idea.

Sara - not sure why I flared, seeing as everything's been OK lately. Maybe stress triggered it, I'm not sure. It started Saturday morning and was subsiding Sunday afternoon, and then I had sex Sunday night and bam - back again! I can't win! :bonk: I'm sorry to hear you're not doing very well with the Endep... we all seem to react so differently to things, eh? When I started Tofranil I had no bad reaction at all, it's never affected me, but I was on Feldene (anti-inflammatory) for 2 days before I was in the worst flare ever. When are they going to find one good drug for this thing that we can all take (or most of us, at the least)???

Hugs to all, hope you're doing OK :grouphug:

[anxious one]

Hi guys, hope you are all well... Kirsten thank-you for your kind words and PM it means a lot to have people out there who care! :grouphug: I know what you mean about sex induced flares... we had sex last week and I was in agony for days, then it started to subside and stupid me thought oh I'm ok now and you know what happened next :rolleyes: and WHAM full blown pain again. You get so frustrated that you can't mantain a "normal" relationship. Are we just ment to abstain forever???? :mad: Seriously, I could probably live without sex but I know my relationship would suffer for it.

By the way guys, it's Nadias birthday today :birthday: :birthday: :birthday:

Happy Birthday Nadia!!!! :)

Hugs,

Sara

P.S I wrote to Prelief and asked if they could possibly send me out a sample and they said NO- I can only order 2 bottles at $29.99 US each plus $35.00 US postage... Is that All??!! :rolleyes: :mad:

[Rosalie]

Hello All
Always sorry to hear of anyone having a flare, especially me! Pretty selfish hey? but I'm having a doozy today. I've spent two days in bed with food poisoning ( suggest you don't accept a dinner invitation to my place Ha) So, the flare can't be from anything I'd eaten in the last 36hours.. nothing. Problem is, I had surgery two yrs ago to repair a hiatus hernia which now means I have trouble expelling anything from my gut. I think I've had enough fun now!
This IC has bells on it. The Doc said not to take Nurofen for a while because it may also be upsetting my stomach.

Happy Birthday Nadia, always good to hear of another Scorpio.
Scorpio motto:
Either all the up or all the way down,
on middle ground no Scorpios found
Alas! they say we are also most likely, out of all the zodiacs, to be murdered. Ahhhh, my husband agrees! This comment also refers to the sex problem!

Has anyone had dealings with the IC assoc here in Oz? Would they be able to bring in small amounts of Prelief to counter the postage costs. Or could a few of us have a go? I mean small enough to come in under the TGA radar.
I know I"m still not diagnosed (Santa won't be bringing me a Cysto for Christmas. I might have to count on the Easter Bunny) but I'm willing to try this stuff. I don't need a diagnosis anymore to know what I have.
Rosalie
PS Suggest you send your letters to the Oprah thread by Bridget-MS

[icnmgrjill]

Love to see this excitement. I didn't write that letter... so I'm not really comfortable having you use it... since I don't know it's source. But, I betcha you can adapt it to your purposes. The only thing I'd ask for is that you mention the IC Network... perhaps as providing a place where you all met and organized this PR effort.

I'd like to help...

Jill :)

[deviation72]

Hi guys,

Sara, hope you're feeling a little better. It annoys me so much that all the little pleasures in life seem to induce flares.... wine, chocolate, sex.... harumph!!!! :hmm:

Rosalie - hello! How are you? Both my parents are Scorpios, and two ex-partners as well, so I have lived a full and happy life amongst you lot!! Apparently Scorpios are the most sexual beings of the whole zodiac... probably a good thing my girlfriend is not a Scorpio with my sex-induced flares at the moment! ;)

I read elsewhere (maybe another board here) that you can get Prelief a bit more cheaply from other places - someone mentioned Amazon, I think. I know Tamara (hello if you're reading, love!) got some CystaQ supplement (or something like that) sent to Australia from an online US site quite reasonably. Like anything, I guess it's a case of 'shop around!' I'm sure a few bottles would get through customs OK.

Hope all of you are OK... my flare has subsided a bit but am still feeling a little "bleugh". Am seeing the uro on Monday.

[anxious one]

:bunny: Hi guys,

I sent Jill a PM- here is her reply and my original message below...


Have no idea who authored that letter.. so I don't think you should use it. But, I'm sure you can rewrite it to tell your story down in Australia! Go for it...

I'd just appreciate it if you could mention the IC Network too! We really need the recognition as well... and work hard with various media outlets.

Jill :)


Hi Jill,

We aussie girls are desperately trying to get IC some attention in Australia. We have several ideas and have borrowed some material from other threads, eg. The one about Oprah under television pubicity campaigns.

We are just wondering if it is ok to use this material as it is not ours. (We would make changes to it obviously.)

If you could possibly take a look at our thread in the Australian forum I would be so greatful. Please let us know if there are any problems.

Thank-you so much, :grouphug:

Sara (Anxious One) :flower:

I wrote back to basically say that was fine and we would definately mention the ICN... it is, after all, how we all met!!

Also, I have been talking to a friend who regularly orders stuff from the US and he has strongly suggested that if we have any personal contacts in the US it would be MILES cheaper to pay them to send it over. (Postage on 2 bottles of Prelief would be about$9.95 US rather than the $35 the distributors are charging! :rolleyes: ) As I think I have said before, we can only get 2 bottles through customs at a time. :mad: So anyway, I guess that is all we can do in the meantime. (If you know somebody in the US obviously.) I have had girls on this site offer to send it to me before but I don't know how the ICN feels about that and obviously it's a trust issue as well...

Anyway, hope everyone is ok... I'm having a medium day, been better been worse :rolleyes: still struggling with the Endep I think I will give it 1 more week and then maybe change to Tofranil if I am still having problems. I am definately getting more drowsy with it by the day (good and bad, at least I am not waking up wide awake in the middle of the night!) but the increase in pain is still an issue.

Talk to you soon, :bunny:

Sara

[nss]

I still haven't been able to find a phone number for the ICN Support Group in Kingswood NSW Australia. But I have managed to track down an email addy and a name. Will put something together soon and hopefully hear something back. Any suggestions on what to ask them and I will forward those questions onto this lady.

Still haven't heard back from my naturopath, might send her an email again.

I did a quick search on Amazon and they stock Prelief, now I am just waiting for postage costs from them.

Spoke to my local phamacist to see if the ingredients in Prelief were available here in Australia, and unfortunately there not.

I have had an up and down IC, vulvadynia day. Comes and goes, not sure what going on down there.

[deviation72]

Hi girls,

There's a thread under the Prelief message board called "Where do I find..." and they mention a couple of web sites they have been buying Prelief from. Might be worth checking if they can ship to Australia, and might be good for those without US contacts...

$35US postage to Australia is ridiculous. I use Ebay a fair bit and have had items much heavier and larger than bottles of pills shipped to me for about $10US. Maybe it has something to do with the goods being shipped, but its certainly no incentive to buy from them. Hopefully Amazon will be able to ship to us at a reasonable price, as they're very trustworthy.

Hope you are all OK, have a great weekend!

[Kahlen - Sue]

Hi there, I sent my own story in to the address they indicated on the thread. I haven't used anyones letter at all. The support group I have got going in Vancouver is just starting, and we are trying to get a Voice as are others to this Disease. Our Disease may be silent but we don't have to be, and I am certainly not!!!! We can all do what we can in our area, that's at least where we a starting!!! Wish us luck, Sue :grouphug:

[anxious one]

:bunny: Hey guys,

I rewrote that letter today to send off to people but I really don't have the energy to post it today... it took me ages to write and I am seriously exausted today, I've had a busy week and the IC hasn't been great :rolleyes: But I will definately post it over the weekend so you can all take a look and give imput/ feedback etc then we can start mailing!! :woohoo: It is very long, maybe you guys and help me to cut it down.

Nadia, could you ask the ICA how many people approx have IC in Australia?? Also, does anyone know the approx % of sufferers under 35?? I think it's about 30%.

Boy, am so tired. Vulvadinia SO sore today, think I need to put ice down there or something... hope it's just the VV I did have a pasta last night with a smidge of tomato sauce so that wouldn't have helped but sometimes I am just over it!! :mad:

Hope all you guys are well...

By the way, Nadia I don't know if you have tried to email me but for some reason I can't import my emails... :rolleyes:

Hugs,

Sara

P.S Sue good luck with your group and thanks for supporting us as well :)

[helen newcastle]

HI guys im sick, cant really consentrate on the key board. I lived in America for four years, and went through a terrible time getting diagnosed for ic. i have tried prelief and elmiron. If any of you here in australia want to try prelief i hve a couple of boxes left, id be willing to post it, as its an over the counter medication. so if anyone wants to try it you can send ypur address to me on my email haprestegard@yahoo.com I have lived in Perth for one year and have found no group, here for Ic.The last group disbanded in 1997, none of the members want to meet. Most of them I talked to had Vulverdynia and not IC.Hope this all makes sence as I have a terrible flare. JUst want to say I had a bladder distention 2 years ago and felt freat for one year nearly. Im going to ask my doctor here in Perth about Dexroamphetamine Sulphate. You can read about it on this sight. I would loved to get involved with anything you are doing with ic, putting this out in mags interviews etc. let me knmow if you decided how to tackle it , and ill be there.
keep fighting Helenx

[karen10]

I've been reading through all your posts and I'm SOOOO sorry it's even harder for some of you, than it is for us here in America!!! I think we really take some things for granted.

I'm a huge IC advocate and have been doing tons of research, and together with a friend, calling and emailing local media, and this weekend did a health fair at the mall to try to promote awareness. There are things you can do. This week CBS is planning to do a story on a friend of mine who has had severe IC (with Hunner's ulcers) for many years. She stays in pain 24/7. It's a start. We're excited!! When it's aired, I'll post the youtube video here and hopefully that can be helpful to you as well.

You can call local churches, chamber of commerce (or whatever it's called in your part of the country :) ), and go wherever you're allowed to give a presentation. I made up a fun display board with IC information (see pictures) and also did a poll asking how many people had heard of IC, if they had, how many were diagnosed, and how they knew of IC. I plan to continue doing this and then present these stats to local media.

I'm so glad to hear of others wanting to spread the word! I wish you well! Feel free to pm me if there's anything I can help with!! :)