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  • #16
    Carolyn,

    I'm sorry to hear that you did not have a good experience with Dr. ****. I received the same treatment from another doctor in Vancouver and I know how frustrating it can be to be told to WAIT when you are in pain. I guess it just goes to show that not every doctor is good for every person. Dr. **** has been a wonderful doctor to me and his office has always been very accomodating. It's dissappointing to hear that he hasn't treated you in the same way.

    As for your elmiron not working, your doctor should probably inform you (if he hasn't already) that elmiron can take a while to kick in. i started noticing a SLIGHT difference at the three month mark. After six months I was having a couple good days here and there... and now that I've been on it a year, I am virtually in remission. Hang in there and give the drug chance to work. I know it's hard to be patient when your life is on hold and your bladder controls your every thought... I wish you the same success with elmiron that I've had.

    Also, are you on elavil or hydroxizine? I take those as well and I really feel that the hydroxizine in particular has done wonders for my bladder.

    Take care of yourself and sending you positive healing thoughts,

    Caroline
    Last edited by ICNDonna; 02-29-2008, 02:27 AM.
    Caroline
    * Diagnosed in Nov. '06 after in office cysto and symptoms alone. (3 urologists later..)

    * Started DIET, 400 mg Elmiron, 50mg Atarax, 20-50mg Elavil around that time and felt improvements at 2 1/2 month mark. 6 months even better and 9 months was pain/symptom free.

    *Stopped meds at 3 year mark and enjoyed another 2 years of remission! Eating and drinking what I wanted.

    *****************************************
    Symptoms have returned Nov.'12 with stress from grad school. Back on same dose of all 3 drugs.


    Things that help me: My shiba inu, hot water bottles and baths. Oh, and white chocolate!!!

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    • #17
      frustration

      Hi Caroline,
      Thanks for your message. I guess that last post was pretty negative. I'm just frustrated from the pain, it's my main symptom. I can barely walk from it and it's all the time =(

      I'm on Elmiron still and Amatrypaline (10mg at night) but not Hydroxyzine - I'm going to ask my urologist about it. I had a bladder distention a month ago, still healing from it, but I think it may have helped a little.

      I'm really glad to hear about your Elmiron story. I was told it worked within 3 months if it was going to work at all, but I guess that's wrong! I have seen a very slight improvement in the 3 months since I started, so maybe it will still work, I just have to give it more time.

      Thanks, hope you are well!
      - Diagnosed Oct 2007
      - Dextroamphetamine has improved my symptoms and given me more energy
      - Prelief allow me to have some bad foods, but I follow the diet as much as possible
      - Physio for pelvic floor dysfunction has helped a little
      - Bladder distention Jan 2008 made me worse
      - Elmiron didn't help after 9 months
      - very slow improvement of symptoms, still in pain every day.

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      • #18
        Please remember that, for legal reasons, negative statements regarding specific individuals are not allowed on these forums.

        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

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        • #19
          Toronto Uro

          I have an absolutely fantastic uro at Sunnybrook Hospital in Toronto, she is very knowledgable about IC and always goes out of her way to help me in any way she can with my IC. I know she has a long waiting list, last I heard it was about 9 months, but she is well worth the wait! PM if you want her name and contact details.

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          • #20
            Urologist In Edmonton

            I AM A PHONE SUPPORT PERSON FOR ALBERTA AND I WOULD RECOMMEND MY UROLOGIST, DR. GARY J. GRAY IN EDMONTON. THE ONLY PROBLEM IS THAT HE IS NOT TAKING ON ANY NEW PATIENTS UNTIL APRIL 15, BUT THAT ISN'T REALLY A LONG TIME AWAY. UNFORTUNATELY THOUGH I DO NOT KNOW HOW LONG AN APPOINTMENT WOULD TAKE. HIS PHONE NUMBER IN EDMONTON IS 780-425-5598 AND HIS OFFICE IS LOCATED IN THE HYS CENTRE BESIDE THE ROYAL ALEXANDRA HOSPITAL. ANYONE WHO DOES OR DOES NOT LIVE IN EDMONTON CAN SOON LOCATE THE HOSPITAL - IT IS ON KINGSWAY AVENUE.

            DR. GRAY CONFIRMED MY DIAGNOSIS OF IC ABOUT TEN YEARS AGO BUT I ALREADY HAD IT FOR 22 YEARS BEFORE IT WAS INITIALLY DIAGNOSED BY MY GP. I WAS RELIEVED TO PUT A NAME TO MY MISERY BUT THEN THE MORE I READ ABOUT IT THE MORE UPSET I BECAME.

            I HAVE ALSO POSTED UNDER "OTHER CONDITIONS" AS I AM HAVING A VERY BAD TIME WITH ANAL FISSURES. I POSTED THAT I DEVELOPED A VERY BAD ONE OVER TWO YEARS AGO AND ALL THE CREAMS, OINTMENTS, ETC. DID NOTHING FOR THEM. WHEN I WAS REFERRED TO THE SURGEON HE SAID THEY WOULD NEVER HEAL ON THEIR OWN AND I HAD TO HAVE SURGERY. ONCE I HEALED FROM THAT I HAVE BEEN FISSURE FREE UNTIL ABOUT THREE MONTHS AGO WHEN THE RECOGNIZABLE SYMPTOMS OF ANAL AND RECTAL PAIN AND BLOOD PLUS SEVERE PAIN WITH BOWEL MOVEMENTS RETURNED. MY SURGEON SAID TO HAVE LOTS OF SITZ BATHS, LOTS OF FIBRE AND WATER. THE EXTREME PAIN CONTINUED SO I WAS BOOKED FOR A SCOPE IN THE HOSPITAL. FORTUNATELY IN THE FEW DAYS BEFORE THE SCOPE THE PAIN BEGAN TO FEEL BETTER (ISN'T THAT THE WAY IT GOES?!).

            THE SURGEON FOUND THAT I HAD SOME SMALL HEMORRHOIDS AND THAT I HAD A FISSURE AND THAT IT HAD HEALED. I WAS STILL HAVING A LOT OF PAIN FROM THE PROCEDURE COMBINED WITH THE IC/PELVIC PAIN. I HAD INCREASED MY BRAN BUT THE BAD NEWS IS THAT I WASN'T DRINKING ENOUGH WATER AND THIS PAST MONDAY I THOUGHT I WAS BIRTHING MY THIRD CHILD!! SINCE THEN THE FAMILIAR TERRIBLE PAIN HAS RETURNED AND MY SURGEON'S OFFICE FEEL THE FISSURES HAVE RETURNED OR IT COULD ALSO BE THE HEMORRHOIDS THAT HE SAW ON THE SCOPE.

            NEEDLESS TO SAY, I AM FEELING VERY UPSET AS I THOUGHT I HAD THIS PROBLEM SOLVED. SO NOW I AM TRYING TO INCREASE MY WATER INTAKE AND HOPE I CAN HEAL THIS MISERABLE PROBLEM IN THE NEXT COUPLE OF WEEKS. IF ANYONE ELSE HAS ANY OTHER GOOD SUGGESTIONS I WOULD LOVE TO HEAR FROM YOU. THANK YOU ALL VERY MUCH!!

            LOUISE
            [email protected]

            Comment


            • #21
              Canadian Dr.

              My Dr. first said in Feb.08 that I really needed to see a new uroligist, one who specilizes in IC I said Okay. I wait three weeks no news on appointment. I asked here for a list of IC specilist and gave it to Dr. asked to be sent to Dr. treesman in Kamloops BC closest for me and I have seen his brother my gyno. Waited never heard when to expect app. so March 22 I called and aske when to expect to get appointment, they said they had not recieved my refferal, but when they get it they are booking Oct maybe Nov 08. I caled al the other Dr. in a thousand mile radius. Dr. teichman would see me April 23 if he got refferral right away, I said no problem called my Dr. office asked them to send the refferral to him, and asked about refferral to Tressman they said they had sent it March 17 (why the wait?) Anyways they said they would send refferral to Treichman the next morning, I go into clinic next afternoon asked if refferall had been sent and was told no the Dr. needed to okay it first, I understand this, I asked then to ask him to call me about another matter, he didn't call he is very good about calling so this means girl at office didn't give him my message. Today I went in and asked if refferall had been sent and was told no the Dr. has been busy, I told the girl I would wait in the waiting room until the Dr. had time to talk to me. She went down the hall quickly told what was going on. He came and talked to me right away. He said he had not been told that I wanted this and said it was fine he would get it faxed out right away. I went with him to the front office where the girl admitted she had lost the referrall and the name of the Dr. to send it too. It was never going to get sent if I didn't stand my ground. So now I am hopping to hear from Dr. Treichmans office this week about an appointment. It just makes me mad at the sloppiness of the office staff. This is far from the first time this has happened.
              I am still on the waitlist for Dr. tressman in Kamloops because it is much closer for me to get to. This other Dr. is a 700 mile drive for me, but I would like to get some sort of treatment on the go. Last uro said I had IC but no treatment. So I am hopping for some releif.
              My are with you all. May you all find a way to peace and joy in your lives.

              Comment


              • #22
                Hello Mothergoose:

                Welcome to the Canada IC message board ..

                Unfortunately, that is the one big problem everyone is having in Canada is being put on a waiting list for a specialist ..

                We are very lucky to have coverage for our health care here but it is the demands on getting a doctor and seeing a specialist is one big problem we are facing here in Canada..

                I hope you get in soon to see this doctor and all the best for you in your IC ..

                Let me know how things work out for your Mothergoose !!

                Debbie
                Thinking positive has got me through to another day!!

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                • #23
                  I now will be on two Dr. list Dr. Treichman looks like he will see me the end of April this works well for me, I will stay on Dr. Tressmans list for Oct./Nov. because he is closer to me and I hate to drive on the winter roads. Also his brother is my gyno and I really like him, a nice man. It is a long way to Vancouver for me, but a long time to wait till oct, to be seen closer. I have had a uroligist for many years, he has treated me for kidney stones, dialated my urethra, and other things even said after a hydro he was sure I have IC but was not prepared to treat it. After many AB's for non infections my GP's finally said time to do something I was/am pretty much at my wits end.
                  But I was really frustrated with my owen office, not even sending out the refferal when I spoke to my Dr. he thought it was long gone. I know he spent quite a bit of time writting it, it was 4 pages long. He wants me to get some help. He will do what ever I need but he would like to be dirrected by someone who is in the know.
                  Thanks for the reply. I amy not be online until after I see Dr. in Vancouver we are going to try and go on a holiday, something I have been avoiding doing because of IC problems.
                  Anyways thanks Mothergoose
                  My are with you all. May you all find a way to peace and joy in your lives.

                  Comment


                  • #24
                    The interstitial cystitis association has a list of doctors who work with i.c. You have to request it and they send you the list by e-mail. I couldn't find any in Montreal, but some of the doctors you guys have already mentioned are on there. http://www.ichelp.org/International/InternationalPhysicanRegistry/tabid/308/Default.aspx[/URL]

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                    • #25
                      mcdoll That is where I got the list. I called everyone in a 700 mile radius to see who I could get into without have to wait mos. But if there are none on the list in your area, I would call all the uroligist offices and ask if they specilise in IC, to be one that list someone has to have put their name on it. For example Edmonton only has one but when I called that office they told me that there were other in Edmonton. So who know you might find one. Mothergoose
                      My are with you all. May you all find a way to peace and joy in your lives.

                      Comment


                      • #26
                        I wrote the doctors in Kingston and they did refer me to someone in Montreal, so we'll see how that goes. It frightens me that he's involved in research though, I don't want to be a lab rat, and I don't want to be pushed into treatments that are barely understood. I will still go to see him though, and see from there.

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                        • #27
                          Sometimes the one into research are the most up to date, you never know just go with an open mind.
                          My are with you all. May you all find a way to peace and joy in your lives.

                          Comment


                          • #28
                            yeah, that's my plan. I figure, he came highly recommended and is up to date on the latest research, which is good. I for sure will still not do everything he tells me to do if I don't feel comfortable with it, but he may have some good ideas for my treatment. I know he is one of the few doctors trained in Canada to implant the interstim (not saying I want that done, but it goes to show he's aware of more options than some uro's). I've heard from many sources that he's not a very friendly person and has a horrible bedside manner, but maybe he'll make up for it with his knowledge. I just hope he's not one of those doctors who doesn't respect their patients choices and thinks they should do anything he suggests. Since I already have a hard time trusting doctors, and a hard time dealing with ones who are not very sympathetic, I think I'll ask a friend to come with me to my appointment, for moral support. Otherwise I tend to get intimidated by the doctors and I'm afraid of making my own suggestions and decisions, I feel like they'll interpret it as challenging their knowledge and expertise. For sure they went through years of med school and know a lot. But that doesn't mean I should just follow them blindly. We'll see I guess! I'm just glad I found someone who seems to know more about ic than the other doctors in my region. He's pretty sought after, it might take me awhile to get an appointment with him.

                            Comment


                            • #29
                              Write a list of symptoms and questions before you, this way if you are intimidated you won't forget something. I think it is a good idea to take a freind, also unsure of your choices say you want to think on it and can you have a phonce consult the next week to let him know. I have found some Dr. are okay with this. then come home and look up his ideas. Good luck let me know when you get an appointment, hopefully soon. I am not be on for a few weeks we will be away. A holiday for two then off to Vancouver for my IC appointment. Hopeing you the best Mothergoose
                              My are with you all. May you all find a way to peace and joy in your lives.

                              Comment


                              • #30
                                I usually do bring a list with me, sometimes I have a hard time getting everything out though, it depends on the doctor, some of them keep interupting me. Some don't even answer my questions. I get all fluttered and I only realise when I'm out of the office that I didn't get around to everything on my list. I'll try again though! Maybe with practice I'll get better at it.

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