Anyone from Quebec/Montreal?

[Shelka]

HI All,

I'm a Montrealer with IC and I tried to access the Canada chat boards to post awhile ago but wasn't able to (will look into it though -- being lazy!).

I saw there were a few (very few) people from Quebec but not many so I wanted to put out a call to all Montreal-area IC'ers. This is a huge city & I can't be one of the few with IC!! If anyone in or around this area reads this and would be interested in chatting please feel free to email me anytime. It would be great to chat about local treatment options, dr's, etc...

Hope to hear from someone!
Lonely in Montreal... ;)
Shelley

[K9wife]

Shelley- I got your email about possibly joining us in NY state (which I answered, by the way!) Maybe your post here will gather up some folks to come across the border with you and join us! I feel better already just knowing I am no longer alone, after living with IC silently for so many years!!! Keep in touch. Beth

[marsi4]

Hi, Shelka

My name is Mary and I am from Montreal as well. I have been diagnosed nwith ic for a year now but remember having minor pain since 9 years ago. I am looking for someone to chat with also and for someone to understand how devastating this illness is. It has destroyed my entire life. I live with severe pain and burning almost all the time. I don't know how to chat well on these chat boards but would like for you to e-mail me at: msikiotis@hotmail.com
I know that you have been very ill and in a lot of pain. I know very well what that is like. It's pure hell and misery. Hope to hear from you soon. I have to get ready to go see my pain doctor. Even pain medication is not very effective when you've been on it for a while. I live day to day, and have found that this disease so difficult to live with. It kills you little by little. I am trying to live with it but it has torn me apart. I hope we can keep in touch and be there for one another.

Hugs;
Mary Sikiotis

[mcdoll]

I'm from Montreal too. I've only been diagnosed recently, with most of my symptoms getting worse 3 months ago, but looking back I too think it was coming for some time now, I just didn't pay attention to the small signs that my bladder was not normal. My biggest issue has been finding a doctor specialised in ic. I know there are some in Kingston and Ottawa, but I haven't found any so far in Montreal. My first uro did a barbaric awake cystoscopy on me and still didn't treat me after. The one I'm seeing now wanted me to do rimso-50 treatments, which I refused because of the danger of permanent damage and also just the fact that I don't want to deal with any more pain than I already have. I haven't seen a single case of someone being 'cured' by the treatement, and it eventually stops working, and often hurts a lot to have done, so what's the point? For now I'm trying to look into antibiotic therapy, but I can't find a place in Canada that does the broth cultures so far.

[ESM]

Hello,
I'm also living in mtl. I was just diagnosed a couple of months ago. I am very disapointed with my urologist. I'm on elmiron, but I am always in pain. I am aware that elmiron takes a while to work but the pain is still horrible. The urologist says I need to be patient... but obviously he is not the one in pain.
I wanted to know if you have found any IC specialists in montreal?

Thanks,

ES

[mcdoll]

I don't know of any good specialists, but my urologist is still very aware of the disease and attacks it from all angles. I'll send you his contact information. He put me right away on antihistamines, detrol and elmiron. He also offered me intravesical treatments but I didn't want to do those. The meds took a bit of time to work, but I went from being unable to leave my couch most days to being almost back to normal. My worst days now are way better than my best days were back then. I get a little frequency and sometimes I'm slightly irritated but it never gets to the point where I can't live my life. I know it's discouraging to wait for treatments to work, unfortunately there is no other choice with ic. Nothing will make it go faster it just takes time.

[ESM]

Thanks - I'll look into it!

ES

[canagirl]

Hi,
I would really appreciate the information about your doctor in Montreal too. I am very disatisfied with mine, too.