Looking for support & a GP in Vancouver!

[bluekar]

Hello to anyone out there with IC in the lower mainland BC? Are there many of us? I just found this on the main IC site after talking to a few fellow Americans with this disease but it would be nice to have some local support also. I have not been officially diagnosed yet but have all the classic symptoms. I have had little to no help from my GP so I have toasted her and am seeking someone new. But our medical system seems so poor right now; it is next to impossible to find someone decent taking new patients. And the wait to get into a urologist is ridiculous. I finally went to Emergency one day with a girlfriend in so much pain and got into the UR sooner. I'm not sure how great he is yet..only spent 10 mins with him. My Cystostophy is scheduled for Nov 4th & I'm even afraid of that after hearing from others how it aggravated the situation and made it worse. But I am very hopeful & looking forward to chatting with people out there who understand what i'm talking about & perhaps sharing stories/solutions/day to day situations! Thanks for taking the time to read this & look forward to hearing from any of you soon!

[Kahlen - Sue]

Dr Fenster is the one to get, he is absolutely awesome and knows how to treat IC. An IC patient should never have a bladder stretch done without anethestic ever. I passed out from the pain. Dr. Fenster is in the book and he is based out of Vancouver General. You won't be dissappointed. Good Luck!!!!!

[bluekar]

Sue...THANK YOU SO MUCH for taking the time to reply and enlightening me!! I did not get a good feeling upon meeting this man from the start (thus I should trust my gut feelings more & more) and he barely took any time with me to bother to explain a thing. I asked about the cystoscopy which he told me very little and if it would worsen the condition at all .."of course not" he said. When I asked about reading material from the receptionist in the office she pointed to pamphlets on the counter, which they were out of. I asked her for any recommended reading and she said "drink lots of water'. So, I am very glad to hear of your recommendation to Dr. Fentster. I am going to a new GP today...after trying to find one for the past year now! ..so wish me luck.
Again, my heartfelt thanks!!
PS>> how are you doing with the IC now?

[Kahlen - Sue]

Hi again, I'm glad you had a chance to see my reply before you went in for your cystocopy. I don't think that he is a bad Urologist just not the right one for IC patients. I think he specialises more in prostate problems. It might take awhile to get into seeing Dr. Fenster but its worth it. He is a huge advocate of IC seeking a cure and knows what he is taking about. I go in for surgery on Nov 29/04 for a bladder stretch and fulguration again, and I am hoping this will help a bit longer than it did last time. My story is an ugly one, and a long one. Since I was diagnosed in 2002 I have gone through so much stress, Car accident, House Fire, Inlaws seriously ill, Passing of close ones, losing my job and benfits, moved twice, and now enduring the stress to make ends meet on one income, which is impossible. I can't work yet, and probably will have to accept that I can't work full time anymore. Its really hard but something I have to accept. Stress is a huge agrevator for IC and it doesn't matter how I try, Stress just keeps on finding me. I have gone to a Chronic Pain Specialist and am currently using Biofeedback methods to control my anxiety and pain. It works for the referral pain (back, legs), and the pain in my bladder is just constant, but I'm learning to live with it. When I was first diagnosed I was place on Elmiron for the IC, Zoloft to help with the depression and T3's for the pain, Adavin for the anxiety and bladder spasms, Dipropan for my bladder, and Premarin for my Menopause, and this was a total nightmare for me. I had no emotion, and no memory of the last year of my life. The total combination of these drugs were the cause of my problems as a person in my day to day living. I didn't realize what was happening and everyone attributed my behaviour to the drugs that I was on. I (Aug 04)have since stopped all drugs except for the Elmiron (Strictly for IC). I have my life back and I can now remember things again. I have complete contol of what I do, in other words I am myself again, just in constant pain. I am trying things all the time. I recently have been taking Omega 3-6-9 alot, and eating Flax. This has greatly increased my energy and Immune System. You can't eat anything acidic, so Juice, Fruit, Vitamin C, Spices etc are out of the question. Trying to find things to eat to stay strong and healthy is very difficult, so the Flax is a huge help for me. Don't let your GP give you things for the syptoms without qustioning the effects they may have on you. I trusted my GP to know and it really screwed up my life. I don't blame my GP I just happened to get messed up, and now I am working to find a better way. I will never go on Antidepressants again, nor Adavin, they are the reason I believe my life was out of control, and why I lost my memory of the last year. Ic is still a puzzling disease to many Doctors and becuase it is so rare, not alot of Doctors know to much about it and end up treating the symptoms only, and that can be dangerous. Stay on top of your treatment, and trust yourself. I'm so glad there is someone else to talk about this with. I feel for my family, they have been so awesome about this, but its still very hard for them to really understand. IC is a disease you wouldn't want your worse enemy too have. I don't know why this happens to special people, except that maybe its because we can handle it, and one day help to find a cure with our Specialists. Well that's it in a nut shell. I hope I didn't bore you, thanks for letting me vent. Please keep in touch, I really do hope the best for you. I am so sorry to hear that you might have IC, but I am glad that I was able to assist you in getting a good IC specialist. Good luck. Always , Sue

[bluekar]

thanks again Sue. My god, you have been through alot. It kind of feels like what i'm going through now. I have IBS also which flared up about a month ago then this came on the tails of it all. I have been off of work since mid October and all my GP could tell me to do was take lots of Advil and/or that Dirtopan crap that made everything taste like sawdust in my mouth and get back to work. I have never been in so much pain in my life and have had IBS for over 10 years so I know it is the combination. The IBS diet or food sensitivites for me are hard enough to deal with on their own without the IC thrown in for good measure. I too have been anxious and somewhat depressed about the whole thing. And I have yet to find a doctor who will sign my short term disabililty forms so I'm not getting paid as we speak! And I'm a single woman! So you can imagine the stress I'm feeling about that. Its not that I do not want to work...right now I am so tired and week and just taking it day by day. I do want to get back to work as soon as I can manage both the IBS and the IC..if i do have it ..which i sense I do. Unfortunately, I am going to see Dr.E this thursday for the cystosophy because I just want to find out and if necessary get some papers signed or get back to work if I have to but I am NOT LETTING him touch me elsewhere other than the test! thanks to you! So, i too am perimenopausal and thats' all just kicking in too...I do try to do most alternative treatments as possible and had a good naturopath..but they even admit that this is a tough condition to work with. I guess the pain management is the toughest. Like you've said. I just cannot believe the lack of knowledge out there for this or compassion...I mean most docs know something of IBS and colitis..that is bad enough on its own..but this too, no understanding. Anyway, I will be sure to question all meds and cannot wait to get into see Dr. Fenster. Thank you again for taking the time to connect with me. It is much appreciated!!
Karen

[Kahlen - Sue]

Hi Karen, I'm so sorry you are having trouble getting Short Term paper signed. Your GP can do that for you, but I'm sure Dr. Estee will also do this for you too. Please make sure you ask Dr. Estee what he plans on doing [B]before he does it. He never told me he was doing a bladder stretch until I asked him why I was in so much pain and getting worse by the second. While he was explaining to me that he was performing a bladder stretch, I passed out, just for a second, because he stopped. The nurses are wonderful, assuming you are going to Eagle Ridge Hospital. Don't be afraid to ask questions.
Dr. Estee told me that I had IC, that it wasn't life threatening, and to drink lots of water.
I walked out of there thinking, WHAT?!! It may not be life threatening but this is most definetly LIFE ALTERING, and to tell you the trueth, its almost worse to know that you have to live in pain for the rest of your life, and there is no cure.
Only other IC patients can really understand and have compassion for reach others symptoms and pain. We are fortuneate to have this site and chat with others for encouragement and hope.

Best of luck, and please call in to see Dr. Fenster as soon as possible. Let me know how things go. Sue