I Just Don't Understand...... - Interstitial Cystitis Network Support Forum

weezer · 10-08-2006, 01:09 PM

Hi everyone in Canada: My name is Weezer, I live in Ocean Park, British Columbia, and I just can't figure out why there is "NO" activity on this site. I know that there are so many people thoughout Canada that are suffering with IC, PFD, IBS, etc., but there is never any action on this site. I was in the hospital 4 day's ago having a hydradistention, and there were 5 other people there for the same thing. This was at Vancouver General Hospital, and all 6 of us got talking and one woman I spoke with was in tears that there was no one to talk to about this devastating disease, she felt so alone, and to be honest she said she sat at home (alone) thinking she was the only person going through the pain, depression, anxiety, etc. of being afflicted with this terrible disease. And I know how she feels, because I have been in her shoes so many times. None of these people knew of the ICN Forum from the U.S., and then when I told them there was a site for Canada, they couldn't believe it.
I myself have been very involved with the ICN Forum from the U.S. as at one point in my life when I thought there was no support anywhere - I was told by my GP about the site in the states and thought that it would help me. And believe me - it was a godsend, and still is for me.
But I also know that there are many people sitting at home feeling so alone throughout Canada, when there are so many of us feeling the same way. Why don't we get together, and start chatting on "this" website? It really helps talking about what each other is going through, and if we stick together, just think how each and every one of us can help each other.
I look forward to hearing from anyone who would like to get their feelings out on the web, and hopefully we can help at least one person out there who needs some encouragement.
Sincerely,
Weezer

***SharonA*** · 10-08-2006, 04:26 PM

Weezer...As you can see I am not from Canada but I hope your post will cause others from Canada to start posting and getting to know each other. It really does help to be able to share with others.

weezer · 10-08-2006, 05:33 PM

Thank's Sharon - I hope Canadian's will start to post because it's hard to post about Disabilities, the different perscrips. the doctors use here, and the way the health care is dealt with, when posting in the ICN Forum. Please don't get me wrong - that Forum has kept me going and the people are wonderful there, and I can't say enough about Jill and all she has done for us all!!! What bother's me, is that there is absolutely no awareness about IC. I have talked to two women at different occasions that were picking up their perscriptions, and Elmiron was one of them. One lady was so happy when I asked her if she was being treated for IC, and we ended up talking for a long time. She was so schocked to hear someone else was suffering as she was. The other woman broke into tears when I asked her, (sounds like I hang around the drug counter all day, lol), and we ended up exchanging phone numbers. We spoke many times, but then she moved to another Province and we lost contact. It just bothers me that there are people out there that feel so alone, and I find that so sad, because I know how they feel from being there. So thanks for the encourageing words Sharon, and I to hope others will start posting. I know it's hard to post that first post, but once you do, and you get a response, it makes you want to post more & more.
Weezer

PlainJane · 10-09-2006, 08:47 PM

Hi weezer,

I'm in Canada. I'm in Ontario far from BC! I love BC. I was actually in Vancouver last month seeing a doctor who specializes in Lyme disease.

To make a long story short -- my bladder symptoms started almost 3 years ago and I had no luck with overactive bladder medications and kept getting told there was "no infection". Anyway thanks to the internet I found out about an American nurse practitioner who specializes in IC treatments. Specifically she treats bacterial causes of IC. She herself was diagnosed with IC and found out (through broth culture) that she actually had many hard to treat bacterial infections in her bladder (She was treated with longterm antibiotics and is now well and has been for over 10 years). This nurse practitioner has found that regular docs and urologists are missing a lot of infections so she has her patients do broth cultures. I did a broth culture and found out I have enterococcus. I haven't gotten better with antibiotic treatment for the infection and the nurse thought maybe I'm not getting better because I might have chronic Lyme disease. Sure enough after doing specialized tests and seeing this Lyme specialist in Vancouver I have been diagnosed with Lyme. I have probably had it since I was 12 years old (I'm 26 now). Lyme can cause really bad bladder symptoms.

Anyway that is my story basically. I would love to discuss the Canadian Medical system with you sometime.

IC is bad enough but having IC and feeling like you're the only one who has it is even worse. Those poor women you talked to! It must have been a big relief to just talk to someone else with IC. Good for you for trying to revive the Canadian forum.

Erica

daisymuffin · 10-21-2006, 10:29 PM

Hi there,

I just wanted to let you know, that I am from the lower mainland and I feel the same way that you do. I don't post very often as I feel sometimes the information isn't all too helpful do to that we are in Canada. I do know of a support group that meets once a month at Royal Columbian hospital if everything gets aranged properly. I am with you that we need someone to talk to you and it is hard to find someone who understands. I have IC, endometriosis and IBC and many other medical conditions that I suffer with everyday as well.

I do hope to talk to you soon and it would be nice to talk with someone that is close to home.

Hope to hear from you soon!!

Gayle2 · 10-24-2006, 09:05 AM

I am an Ontario resident who had surgery last November for a Bladder Prolapse. Since then I have had discomfort from time to time and thought it was an unsuccessful surgery or bladder infections. The last time I saw my doctor she suggested that I may have IC as I do not have a bladder infection according to the urine tests and she feels the surgery was successful.
The symtoms vary from voiding frequently to discomfort to burning bladder, etc. I am taking Elmiron and have been for 2 months - this has helped some but I have bad days as well.
I am feeling pretty disheartened after going for surgery to help with one discomfort to find I have another that is probably worse.
G.

katievarga · 10-25-2006, 09:23 AM

Hi
I am from the lowermainland aswell. I have had bladder infection since i was 19 about 5 to 7 a year for 7 years. Anyway i finally got to see a urologist in july and I had a camera put into my bladder and my urethra( tube that you pee out of) stretched. Sorry I don't know all the real names for the operations. My Urologist has put me on Elmiron and I have been doing my best to take it 3 times a day but it is so hard. I am wodering if anyone has actually had sucess with this treatment. THis is killing my marraige, I never ever want to have sex cause it hurts so badly. I never had the pain with sex until after I had my daughter. My family DR said the elmiron can take up to 6 months to work. She won't give me anything to take for the pain so we can have sexso my husnband won't divorce me. But what I don't understand is this whole disease. I do get bladder infections and I just had one last week (the worst one in a long time) He gave me cipro and T3's. I am just wondering if anyone had any luck in the sex part of this disease. I feel horrible I know my husband won't ever leave me, but he doesn't understand why I dont' want to . we have tried ever position possible, but I can't even get into any part. I am so glad I found this website

katievarga · 10-27-2006, 08:55 AM

Hi
I am just wondering if any of you got subscribed pain meds with IC. I went to my family doctor to discuss my newest bladder infection, and I asked her if she could give me anything to help ease the pain when my husband and i have sex, and she said no. Nothing will help with that sort of pain. I was just wondering if any one else had this, I noticed a lot of te women in the US get pain meds. Is canada more strict?

daisymuffin · 10-27-2006, 09:22 PM

Hi katievarga,

So glad to hear from another person in the lower mainland, I am in Surrey. I have had IC and endometriosis since I was about 16 or so. I have had a hard time with sex all of my life but I guess you can say I have gotton use to it, and I have a very understanding husband. I have many many cystoscopies and hydrodistentions and have tried the elmiron as well as chronic pain medication. I am now only taking pyridium and my strong pain meds, as we are attempting to get pregnanct at this point. With the elmiron I didn't find it helped with pain at all just the frequency, it is hard with my pain thou cause if one problem flaires so does the other, so my doctors have a hard time trying to treat it. I do take thou for the pain hydromorphone (morphine) and I do also use b&o suppositories, which I do find work before and after sex to help with the pain and discomfort. But like I said now that I am not taking any of my regular pain medications and regulatory drugs I have major problems with pain. Before we starting trying to have children I took morphine pills 4 times a day, these are ones that keep the morphine in my syste, 24 7. My urologist is great and so is my family doctor, I do also see a chronic pain specialist as well.

Selena · 11-01-2006, 12:42 PM

Hi KatieVarga
I am 27 and newly diagnosed with IC from my Gyno I am travelling to see a urologist for the second time in January and hopefully be put on Elmiron. I have a mild case last time I had a but flair was in Sept. I have mild symptoms regularly. I watch what I eat and more so since I found this website.
I have had what I thought were BI's for about five years. Sex usually painful for me. I take a pyridium and it usually eases the pain a ice pack right after and then a heating pad feels really good. I also have an anitbiotic my doctor perscribed me for after sex. My husband is really frustrated and so am I but it is really good to know that we are not alone.
Selena

wings22 · 11-04-2006, 01:28 PM

Hi my name is Tanya I'm in Canada to I'm from Cape Breton but live in Ontario as well thanks we all need to go talk with other people from Canada as well i know what you are talking about alot of the groups I'm in they are all from the USA not many in Canada so it is always nice to see Canada here...lol

weezer · 11-04-2006, 02:31 PM

What I can't figure out is, there are not many people that post from B.C. or the lower mainland. I have only seen 3 others besides myself, and it seems all the others are in Ontario (no offense to Ontario)lol, . Cape Breton is soooo beautiful - I had the chance 4 years ago to visit there and the beauty is unbelievable. I find all the Maritines to be so friendly and when I was there (in Nova Scotia), I had the chance to contact a couple of support groups that I found while visiting. The people were so kind and friendly, and they really made you feel welcome. Can't seem to find that here in the lower mainland of B.C., and I just can't figure it out. No offense to anyone in the lower mainland or B.C.
Weezer

wings22 · 11-04-2006, 06:30 PM

Ya no offense taking Hun ya C.B. is beautiful i was home this summer i had a lot of pics of the ocean if you would like me to post them let me know and i will...

weezer · 11-04-2006, 08:07 PM

I would absolutely love to see them. With the scenery & the history I find that side of Canada so interesting. My hubby & I were there (Nova Scotia) for 2 months visiting his brother and wife and " lots of family". My hubby is from Nova Scotia, and moved to B.C. when he was just a child. His brother & wife live in Bedford N.S. and it was quite the trip. I love the Pacific Ocean, but there is just something about the Atlantic Ocean that is so mystic (I think that's the word I'm looking for). So yes I would love to see your pic's if its not to much of a problem. Thank you...
Weezer

Imasurvivor · 11-11-2006, 12:32 PM

I am from Vancouver and I have had IC for two years now. I think I have it under control finally. It takes time and lots of patience. What works for you may not work for others. There is a lot of trial by error. I also have kidney problems and have to have a special diet for that as well as my IC diet and sometimes they clash so I just had to figure out what worked for both. IC has only been recognized by medical professionals for about the last ten years and some of them still do not recognize it and others do not know that much about it. My Urologist specializes in it and stays on top of whats going on and whats new. That is really important when choosing a doctor. There was a conference about it at St Paul's Hospital about a year and a half ago. It was really interesting. That is where my urologist practices and he headed the conference. I take Elmiron and it works great for me. It takes awhile for the effects to work but it is worth the wait. As for the sex part I don't know much about that as I am separated and haven't had any in awhile. I have heard that there are some creams out there that help but I don't know what they are.