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  • Desperately seeking a specialist in Toronto!

    Hi everyone! I'm new to the forum, but I've been struggling with chronic pelvic pain/suspected IC for about 3 years. I've seen a lot of different doctors and tried a huge number of different treatments, but unfortunately nothing has helped so far.

    I've had some pretty terrible experiences with doctors telling me it's all in my head and there's nothing they can do for me (unfortunately it seems that's pretty common with IC patients)! I'm starting to get really discouraged.

    I'm really hoping to find a urologist/urogynecologist who is knowledgeable, compassionate, and up-to-date with current IC research. I'd really love to hear suggestions from anyone who has had a good experience with an IC specialist in the Toronto area!

    Thanks so much for any suggestions you might have!

  • #2
    Re: Desperately seeking a specialist in Toronto!

    Hi there,
    I don't know of any specialist in the Toronto area BUT there are Urologists who have a sub specialty in some of the bigger hospitals like St. Michael's, Mount Sinai and Toronto General. I wish I could find my scribbled notes that I wrote regarding this. I was talking to a woman who has had I.C. for several years and she mentioned the name of a few doctors. I wrote them down very quickly, as I was rushed. But I do have the names. If you just give me some time, I'd be more than happy to give you the names. This woman has been to many reputable doctors (I don't even know what that means anymore!!!....because some of the "reputable" doctors turn out to either not have time for you or dismiss you). I feel your pain. I really do. I'm still getting used to this forum...you can certainly email me personally...I'm not sure how to send a private message.

    Originally posted by lisa-hope View Post
    Hi everyone! I'm new to the forum, but I've been struggling with chronic pelvic pain/suspected IC for about 3 years. I've seen a lot of different doctors and tried a huge number of different treatments, but unfortunately nothing has helped so far.

    I've had some pretty terrible experiences with doctors telling me it's all in my head and there's nothing they can do for me (unfortunately it seems that's pretty common with IC patients)! I'm starting to get really discouraged.

    I'm really hoping to find a urologist/urogynecologist who is knowledgeable, compassionate, and up-to-date with current IC research. I'd really love to hear suggestions from anyone who has had a good experience with an IC specialist in the Toronto area!

    Thanks so much for any suggestions you might have!

    Comment


    • #3
      Re: Desperately seeking a specialist in Toronto!

      Originally posted by Dew254 View Post
      Hi there,
      I don't know of any specialist in the Toronto area BUT there are Urologists who have a sub specialty in some of the bigger hospitals like St. Michael's, Mount Sinai and Toronto General. I wish I could find my scribbled notes that I wrote regarding this. I was talking to a woman who has had I.C. for several years and she mentioned the name of a few doctors. I wrote them down very quickly, as I was rushed. But I do have the names. If you just give me some time, I'd be more than happy to give you the names. This woman has been to many reputable doctors (I don't even know what that means anymore!!!....because some of the "reputable" doctors turn out to either not have time for you or dismiss you). I feel your pain. I really do. I'm still getting used to this forum...you can certainly email me personally...I'm not sure how to send a private message.
      I see a urologist at Western Hospital in Toronto Dean Elerton. He is trying some new things in his office and appears to be well liked by his therapist in the office. He is the first Dr in the Toronto area trying "In Tone" for stress and urgency incontinence. I am not sure what he does with IC but it would be worth checking out.

      Comment


      • #4
        Re: Desperately seeking a specialist in Toronto!

        Hi!
        I'm also looking for a urologist in the Toronto area.
        I've heard of Dean Elerton, any others?

        Comment


        • #5
          Re: Desperately seeking a specialist in Toronto!

          Originally posted by CoopLoops View Post
          Hi!
          I'm also looking for a urologist in the Toronto area.
          I've heard of Dean Elerton, any others?
          I had a visit with the Uro at St Joseph, Dr Jane. Nice and personal but not impressed with the hospital and his equipment looks like he has had it since the 50's. The uro dept was clean though out of date. I am sure he is a good Uro but not sure women with IC are not his real interest.

          Comment


          • #6
            Re: Desperately seeking a specialist in Toronto!

            Hi fellow Toronto sufferers,


            It is SO critical to have the right urologist.
            My recommendation would be to contact Sunnybrook Hospital urology department.
            There is one urologist in particular, sorry I don't have her name now, who is a well-known expert in I.C.
            Call the hospital and or look it up on line and get the particulars on being "considered" for referral.

            I have an excellent urologist (not in the GTA) but he said she was more qualified to treat me.
            A while back, he presented a referral to her for me, but I was declined. I actually went to the clinic in person to appeal. How desperate is that.

            I don't know the basis on which she accepts new patient referrals but I would definitely try - she is a catch!

            Hope this leads you down the "right path".

            Marcy

            Comment


            • #7
              Re: Desperately seeking a specialist in Toronto!

              Hi Marcy,
              I think I know who you're talking about at Sunnybrook. I believe it's Dr. Lesley Carr who's the specialist in IC and I've heard rumours that she's not accepting any new patients or new IC patients. Bummer!

              Comment


              • #8
                Re: Desperately seeking a specialist in Toronto!

                Yes that's it!
                Dr. Lesley Carr - I remember now.
                She may accept patients who are not actively under treatment with a urologist.
                I would still contact the clinic at Sunnybrook.

                Well done CoopLoops!

                Comment


                • #9
                  Re: Desperately seeking a specialist in Toronto!

                  Anyone found anyone else here
                  Will try dr Lesley Carr though as shrewdly in a 12 month queue fit the Wasser pain clinic?? Not that they are going to treat me for IC just pain management!!!

                  Comment


                  • #10
                    Re: Desperately seeking a specialist in Toronto!

                    This guy does a lot of IC research! http://www.chrcrm.org/en/rotm/dr-j-c...ickel-md-frcsc

                    PS: I am your neighbor from Michigan!
                    Julie Beyer, MA, RDN
                    IC Dietitian, Patient Advocate, Speaker, & Author


                    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                    ........ ........


                    Other IC Diet Resources:

                    IC Diet Webinar
                    IC Diet Website
                    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                    Free IC Diet Booklet: What Can I Eat?
                    Confident Choices IC Diet Blog
                    IC Diet Newsletter


                    *Let's Connect!*

                    Comment


                    • #11
                      Re: Desperately seeking a specialist in Toronto!

                      Thanks everybody for all the response - I will follow up on any "lead" I get
                      You really do have to self advocate with this affliction don't you - my family doctor is clueless but helpful but she also suspects me of being a little paranoid and nuts - I really can't go back to her without a plan of my own because she hasn't got one.

                      Comment


                      • #12
                        Re: Desperately seeking a specialist in Toronto!

                        Does anybody know how to discern whether one has an actual infection amidst a flare up. urine was "dipped" at the beginning and 3 weeks ago. Since then I had a cystoscopy - not the right one to determine IC . She did tell mevthatbi was not voiding each time I hit the loo but I am sooooo very bad last couple of days that wondering if I've gotten an infection due to not voiding properly
                        Any tips on how actual infection might feel as opposed to day upon day of IC and muscular pain!?? I can't keep turning up at Drs to have urine tested
                        Thx

                        Comment


                        • #13
                          Re: Desperately seeking a specialist in Toronto!

                          Hi Carolspode, I wrote about this in my blog a few years ago. http://interstitial-cystitis-diet.bl...-flare-or.html. Mostly look for hot foamy urine, a slight fever, pain when voiding vs pain when the bladder is full. You might even feel nauseous or have flank pain. Did you know you can buy UTI test strips at most pharmacies?
                          Julie Beyer, MA, RDN
                          IC Dietitian, Patient Advocate, Speaker, & Author


                          Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                          Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                          You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                          ........ ........


                          Other IC Diet Resources:

                          IC Diet Webinar
                          IC Diet Website
                          For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                          Free IC Diet Booklet: What Can I Eat?
                          Confident Choices IC Diet Blog
                          IC Diet Newsletter


                          *Let's Connect!*

                          Comment


                          • #14
                            Re: Desperately seeking a specialist in Toronto!

                            Julie B
                            Thanks for that - I'll bet out obstacles here in CAnada don't do UTI strips but gonna try anyway
                            Dr Nickel ( researcher of the year) completely blew me off when I asked for some names of IC urologists in Toronto / with a one liner "Your Doctor has to refer you"
                            duhhhhhhhhhhh
                            Worth a try though
                            Thx

                            Comment


                            • #15
                              Re: Desperately seeking a specialist in Toronto!

                              Anyone using lidecain pessaries (badly surly I'm sure) to numb the pain

                              Comment

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