Someone might benefit from your help - Interstitial Cystitis Network Support Forum

Baba Yaga · 01-24-2006, 04:45 PM

Please see the Not Diagnosed Yet forum -- the thread started by newbie "TannisC" or tannisc.

She is in Alberta, and appears to be having a terrible time with the medical system there. I don't know how typical it is for Canada since I am in the US -- I don't know if the healthcare policies vary by province, or how reasonable it is to hope for or expect more and better than what she is getting.

Have you had responsive doctors in CA?

I'm in NYC and had to lobby hard to get just a laparoscopy, but then found a diff doctor who was prompt. i had no idea what IC was or that that would be my dx. Anyway, if there is anything you can offer tannis as advice, please do -- I don't think she has had a response from a Canadian ICer yet.

Here is the link:
http://www.ic-network.com/forum/showthread.php?t=23924

Thank you!

KimP · 01-31-2006, 11:16 AM

Thanks, I've private emailed her.

Thanks for the heads up. I appreciated it.

Kim

tannisc · 02-12-2006, 11:22 AM

Thanks so much Baba Yaga. I just noticed this area on the message board. It really touched me to know that someone cared enough to help me. I really appreciate it! Thank you once again. I am still kinda lost. I see my gyne and my family doctor tomorrow. If no luck, then I am thinking of calling the mayo clinic in the states for an appointment. I will let you know how it goes. Thanks.

Tannis

Baba Yaga · 02-12-2006, 12:46 PM

Good luck, Tannis. Keep patiently reading through threads and assimilating information from the links on the main page -- the handbook, et cetera.

I am finally reading through Robert Moldwin's book and it is excellent. I am also reading the ICN's manual on Coping with Flares, and I will be ordering more material.

watch out for other canadians here if there are other questions you have regarding how to get seen in the Canadian system. Also, if you are willing to go to Mayo, you might also consider other American doctors. One would hope there would be someone good around the Seattle area. If you have relatives anywhere in the US, you could consider that city as well, for looking for good doctors. There is a whole long list of recommended doctors in Jill's board.

Let us know how your trek works out, and good luck with Mayo or anything else.

Wendy

KimD · 03-09-2006, 09:29 AM

Hi Everyone;

I'm in Hamilton, Ontario and have IC. I've been looking for a urologist that knows about IC, other than "you have IC, go home, watch what you eat, take this sheet of paper and read it, look on the 'net for help, and see you in 2 months". His only line of treatment is RMSO, Elavil and Elmiron, he will not entertain the thought of anything else as he is the specialist - not me. My family dr. knows only about Elmiron, he told me that IC is extremely rare, and I should check with drug stores to find out if they have been getting any prescriptions for Elmiron and to find out what doses they recommend!?
Is there anybody else in my area out there?
thanks,
Kim

Rayne1977 · 03-09-2006, 01:31 PM

Hi There,
I live in New Brunswick and ended up going through 5 Uros in 6 years(all Men of course).They had told me that it may be kidney stones then realized my left ureter collapsed and had a stint put in for a month. When the pain didn't go away he wanted nothing to do with me. I went on the internet and just looked for the same symptoms and then printed the stuff off. When I took it to him he said that he isn't getting involved with something this complex. My GP sent me to someone else. By this point I was very discouraged. then I went thru a couple more uros, finally I told my GP that something needs to be done or send my to the U.S where someone would help me. She got her receptionist to call around to find a uro who wants difficult cases. By this point my GP wouldn't give me anymore pain meds because she didn't want me addicted. I haven't been on any pain meds for 4 years and everytime I ask for them she says that she doesn't like to give any but I take too much Tylenol and advil and probably killing my kidneys and liver. I was sent down to Halifax,N.S and the uro down there saw me 3 times and the 4th visit,he put in the interstim.
My advice to you is to demand that your GP find a Uro who is the best at difficult cases, as this one in Halifax at least understands that I am not faking this(all in my head theory). I know they really don't like to send you out of province but tell them it's either that or send you to the U.S.
My advice is to go

KimP · 03-13-2006, 03:48 PM

Hi Kim D and Rayne,

I saw my Uro the other week -- and she mentioned that there was a uro in St. Catherines...

Here's the college of physician's and surgeons website:

http://cpso.on.ca/Doctor_Search/Resu...Spec&City=1835

I am one of the moderators the Canada IC Boards -- and I reside in the Toronto-GTA area. If you want to chat and get more information you are welcome to private email me. The Canada IC Website is:

www.canadaic.com/forum

Let me know,

Kim P

KimD · 03-14-2006, 05:18 AM

Hi KimP

I cannot get into the Canada site, I have been trying for over a month, it will not accept my email address, my name, etc. etc., I have tried getting in touch with the user and they have never replied - so - I can only read the canadaic site, not participate. Anyway, I would appreciate the Uro's name in St. Catharines.
Oh yeah, I cannot access private messages either.
Thanks,
KimD

Allyoopa · 03-14-2006, 05:46 AM

Hi,
I am in the Canadain Medical care system and find it to be excellent. My Uro is in SunnyBrook Hospital in Toronto and their entire Urology department is excellent. There is also Women's College Hospital. Try being referred to Dr. Leslie Carr at SunnyBrook she takes great care of me and I have never had a visit with her less than a hour long. She is extremely knowledgable and she will do anything in her power to make you comfortable. Tell Kim her secretary that you got her name from Adele, hopefully it might help. Don't ever lose faith in our medical system as we have the best system in world! I hope this helps!!

Take Care
Adele

Baba Yaga · 03-14-2006, 01:17 PM

Quote:

Originally Posted by Allyoopa

I have never had a visit with her less than a hour long.

I am completely bug-eyed at this. How unusual is this in Canada?

PlainJane · 03-14-2006, 02:26 PM

Quote:

Originally Posted by Allyoopa

Try being referred to Dr. Leslie Carr at SunnyBrook she takes great care of me and I have never had a visit with her less than a hour long.

I saw Dr.Leslie Carr at Sunnybrook. My appointment was relatively brief and she didn't have anything to offer me but she was nice enough.

PlainJane · 03-14-2006, 02:34 PM

Quote:

Originally Posted by Baba Yaga

I am completely bug-eyed at this. How unusual is this in Canada?

It depends what type of appointment it is. My g.p. will spend upto an hour with one patient but that isn't typical I don't think. I saw a chronic fatigue specialist who spent about 2 hours with me for one appointment. But then I've had appointments with urologists that have lasted under 10 minutes so it really varies.

StephanieS · 04-09-2006, 03:11 PM

I am also having a hard time with the doctors. I go to a urologist in Fredericton and he is my second one. I am on elmiron and urispas and toradol but am getting minimal relief. He also told me it was rare and will not budge on giving me anything else. He just thinks I should learn to deal with the pain through alternative ways. Thats fine if you have a lot of money and don't have to work. I think being in the maritimes we are a little behind the times. I finally got the courage up to call my specialist when my flare started again but guess what there are only 2 here and they are sooo busy and he was out of the office...surprise. I have 2 choices suffer or go to emerg. Neither are viable options.

I feel your frustration.

Cath5 · 04-16-2006, 08:02 PM

Tanis,
I am in Calgary, if you want to know more about the resources in Alberta, let me know, I have had IC for several years and been around the medical block a few times,
Cath

Evaline · 04-24-2006, 04:39 AM

Hi, to all those that have found a good uro I think it is wonderful. I live in the opposite side of canada BC from alot of those I see here and I am having heck of a time. If anyone happens to know of a doc in the vancouver, BC area or there abouts I would appreciate it. Unfortunately practicality prevents going across the border to the US as I truly cannot afford to do that even getting as far as vancouver is going to be difficult. Thanks for your help.