Let's create a list of IC specialists in Canada?

[icnmgrjill]

We all know about Curtis Nickel and his awesome IC research in Ontario... but what we don't have is a comprehensive list of other IC centers in Canada. So, let's put one together. Do you have a physician that has really helped you?? If so, please share their name/clinic/city below so that we can start to put together a better list!

Jill O.

[sandramac]

Ok Jill , Who is this Doc and where in Ontario is he ? I live in Toronto. And would love to see a IC sp. I like my uro but I dont think he knows much about Ic.
Thanks Sandra:cat: :cat: :cat:

[DebbieB]

Hi Sandra,

I did post this on the Canada IC message board lots of time.
We have a IC Clinic at Kingston General Hospital in Kingston , On..
I went there for over eight years and had done all the treatments done there.
They really know their stuff about IC there..
Please PM me if you want any more information about the clinic ..

Debbie

[sandramac]

:smile tee Thanks Debbie. That location is too far for me.As I need to get my drivers lisence. thanks again!
Sandra:cat: :cat: :cat:

[curlette]

I'm seeing a Dr. Joel Teichman at St. Paul's Hospital in Vancouver, he's the head urologist and surgeon.

I'm going back to see him for some more results, I've been on Elmiron now, although he stopped my self-catheritization that my other urologist had started and now it seems that I'm getting urinary infections more and more frequently. Will keep you posted if I feel that he is helpful, although all my other doctors have told me that of all the doctors that are even aware of this disease, he is the most informed and educated about it. Hope this helps anyone. Hugs to all.

(Edited by Jill. We can't libel or slander any physicians in this forum... so please don't post them publicly)

[CarolineJulia]

Hi There! I saw Dr. Joel Teichman (although it may be because I saw a complete (excuse my language) a--hole before him, so he seemed better by comparison. I went to Dr. ****, a urologist at VGH. He deals with most male urology problems, so that should have been my first inkling not to go... anyways... it was your typical "come back in six weeks if you don't feel better" experience. Completely unwilling to consider i.c. and basically said even if it was, there was virtually nothing he could do. NOT FUN.

Anyways, Dr. Teichman's office was much more accomodating. He's an i.c. specialist that was imported from Texas especially to St. Pauls Hospital because of his research with kidney stones (as well as his research with i.c.) Things to consider: he was researcher for elmiron (so he's definately pro taking this drug). For me, he didn't even do a potassium test or hydro (although he would if I asked) he listened to my symptoms which were hallmark ic symptoms and diagnosed me and sent me home with a prescription that day. He also gave me a voiding diary and a sex questionnaire.

His bedside manner isn't the greatest, but like I said, I've had worse. He was pretty business like, but when I started to cry in his office he was very understanding, got me kleenex and seemed really concerned. His curtness is more a product of him being busy and the fact that our medical system is so congested and disorganized (my parents are both Doctors, and they will agree with that last statement). Dr. Teichman also offered me instillations starting the following week and gave me a prescription for small catheters which he custom ordered to the pharmacy near St. Pauls... so he's not all bad...

There is another Dr. LYNN STOTHERS at St. Paul's who is a woman and she's supposed to be good. (Does a lot with female urology and is said to be more understanding). Her waiting list is about six months to a year though because there is only one other female urologist in the city.

Lastly, Dr Masterson used to be really good but he's switched to pediactric urology at Vancouver Children's (probably because he was such a kind hearted man). However, there may be some way to get in and see him. And if you are dealing with a child that has ic. or a young teenager, he might be good to visit.

I've also heard that Dr. Howard Fenster is decent as well.
So, in conclusion I would add:

Lynn Stothers,
Joel Teichman
Dr. Masterson

to the list of specialists in Vancouver.

Caroline

[ICNDonna]

Reminder: Negative statements regarding specific individuals or medical facilities are not allowed on the IC Network --- due to the potential for legal liability.

(Hence the editing.)
:)
Donna

[CarolineJulia]

woops!!! i'm forgot about!! terribly sorry! i didn't mean to break the rules...

thanks for reminding me, donna!

love and light!

caroline

[Braedley]

Does anybody know of any IC specialists in the Atlantic region (mainly Nova Scotia) and potentially any high risk OB/GYN's too?

have a uro I'm seeing next week for cysto/hydro but I'm not sure how I feel about him...my family doctor has been trying to educate herself for me and she's been very helpful so far...but it would be nice to have a uro who you could use as well, I don't know that I feel this one is very approachable I guess...they're supposed to be the best in our city, but I wouldn't say they're an IC specialist per se...

[CarolineJulia]

Dr. Joel Teichman at St. Paul's in Vancouver (my urologist) also held a conference at St. Pauls 2 years ago in hopes of educating other urologists in the city about I.C. So he's definately at the forefront of things in terms of Vancouver. People with i.c were allowed to attend and there was even some guy there speaking about low-oxalate diet, etc. I didn't go (wasn't diagnosed back then), but apparantly many people found it valuable.

Does anybody know of ic support groups that meet in Vancouver? I know there used to be one, but I think it got shut down!

Caroline

[DebbieB]

Hi Caroline;

Here is one that I found for a support group in Vancouver ..

Contact Sue at kahlen-welsch@shaw.ca
or phone Shirley Oliver at 604-224-4722


I hope this will help you !!

Debbie

[DebbieB]

Here are some of the listing of support groups !!

Alberta
IC phone support only
Edmonton
Sharon L. Montgomery, (780) 434-0027 - e-mail: Sharon Montgomery


British Columbia
NEW! (05/05) VANCOUVER IC Support Group
Contact Sue at kahlen-welsch@shaw.ca
or phone Shirley Oliver at 604-224-4722
Scheduled meetings for 2005 are: May 28, June 25, Sept. 17, Oct. 15, Nov. 19. Meetings are from 10:00 am - 12:00 noon and held at the Royal Columbian hospital in room T047.

Prince George I.C. Support Group and Info.
Darleen O'Neill 250-962-7943, e-mail: doneill@sd57.bc.ca
Brenda Daly 250-964-0948
This group meets on the fourth Wednesday of every month except for July, August and December. Meetings are held in room 105 at the Prince George Regional Hospital at 7:00 pm.

Comox
IC phone support only
Shirley Apsouris, 1-250-339-1240

Nanaimo
Phone Support Only
Sandy McNicol: 250-758-3207 - e-mail: Sandy McNicol

Nova Scotia

Halifax
Phone Support only
Liette Connor, RN 902-473-4186


Ontario
IC Support and Info. Group of Brantford
Helen Prince 519-752-2534
Please call for meeting information and IC phone support

IC phone support only
Cornwall - Francine Brisson 613-936-2016

IC Support and Info. Group of London
Carol Shaw 519-474-1680
Marilyn Cousins 519-438-1500
Marilyn's Email: spicegirl1500@rogers.com
2006 Meeting schedule:

Wednesday, October 17: 7:00 p.m. at the Landon Branch of the London Public Library. The address is 167 Wortley Road, London. The speaker will be announced soon. For further info, contact Marilyn either by phone or email above. Future meetings to be announced.

Updated! (01/06) IC Support and Info. Group of Ottawa
Inga Legere 613-839-6188, e-mail: ilegere2@hotmail.com
Anne Raina 613-733-5891
Support group meetings for those who have Interstitial Cystitis, and for anyone interested in learning about IC. We offer daytime and evening meetings. You are welcome to attend any meeting and do not need to be a member. Please join us to discuss your concerns, and to share helpful ideas about coping with this difficult disease. Please call for additional meeting information and IC phone support!

Our 2006 meetings dates are:
April 6 (Thursday), 1:00 p.m. at the City View United Church*
June 15 (Thursday), 7:00 p.m. at The Citizen Building**
September 5 (Tuesday), 7:00 p.m. at The Citizen Building**
November 9 (Thursday), 1:00 p.m. at the City View United Church*

*Daytime meetings will be held in the "Sunshine Room" at the City View United Church, 6 Epworth Ave. Follow Merivale Rd. south from Baseline Rd.; turn right onto Rossland (opposite Emerald Plaza - there's a gas station at that corner); proceed to Epworth which is on the left. You will see City View United Church. Go left into the parking lot and use the central door to the church. Parking is free.

**The Citizen Building is located at 1101 Baxter Road. From the Queensway, get off at the Pinecrest/Greenbank exit and head south (Greenbank). Just over the Queensway bridge turn left onto Iris. Proceed past the back of the Ikea Mall, and turn left onto Baxter. Free parking is available at the Citizen Building lot and adjacent roads. Use the main entrance door. The security guard will direct you to the meeting room.

IC Support and Info. Group of Toronto
Mary Andrisani 905-850-0589
Please call for meeting information and IC phone support

Québec
IC phone support only
Montreal - Lise Laroque 514-524-7750 (French and English speaking)

Saskatchewan
IC phone support only
Saskatoon - Candy Zacharias 306-384-30

[Shirley O]

Hi Caroline and anyone else reading these posts. I'm glad to see that Debbie has mentioned my name and number (Shirley Oliver @ 604-224-4722) for IC support. I have tried to put a notice up at St. Pauls, where Dr. Teichman's nurse does the installs but to no avail. Please phone me and we can try and get together.

There are no longer mtgs at the hospital in New West...for people in Vancouver, it was too far to travel. I would like to start a support group for Vancouverites and I have a friend who would do a second support group for ICer's living east of Van. Please phone and let me know if anyone is interested in working towards that goal.

I have been going to Dr. Joel Teichman for 2 years now. He is my 3rd uro and while his bedside manner is "brisk", he does know a lot about IC and has the support staff to do installations in a timely manner.

I was initially on a DMSO cocktail installation, then went on to "rescue installs" and am presently doing Uracyst Sodium Chondroitin instills (which have helped me tremendously). I see from the recent ICA newsletter, Uracyst will be sold in the U.S. I hope it will help some people there....different things work for different people....that's why we have to share information with each other.

Another uro who I have heard is compassionate and caring (and female!) is Dr. Stephanie Cripps on King George Hwy in Surrey. I have given her name out to some people that find the trek to St. Pauls too much. Her waiting list is long but I think all good urologists have long lists.

Again, please phone me and let's try and get some people together to share info and hugs.

Shirley Oliver
Vancouver
604-224-4722

[Janette Rass]

Hi there fellow ICers, I have seen several Urologists in the Vancouver area.[I won't mention the one's I was not happy with] Dr Fenster of VGH diagnosed me, He seemed very caring, but short on time & solutions. I was looking for more & since have been seeing Dr J Teichman of St Paul's. As mentioned Dr Teichman's beside manner is "brisk" [to say the least], but he does seem knowledgeble & as Shirley mentioned, his clinic does installations. I have tried both Dr Teichman's "rescue solution" & "Uracyst". The "rescue" solution was not for me but I have had some success with the "Uracyst". As to local support groups, I am in contact with several ICers interested in continuing with a Vancouver group. Feel free to contact me [or Shirley]for info. Thinking of you all. Great Big Hugs :cat: Janette

[camackin]

I Dr.****was recommended to me before I knew I had IC. It was right when my flare started and I could hardly get out of bed the pain was so bad and was waking up 6 times every night. I told him how bad my symptoms were and he said, "I'm 80% sure you have interstitial cystitis. Come back in 6 months".

What?! He expected to go on living like that for 6 months before he took the time to do anything about it? He knew what I had and decided to NOT diagnose me? So I went back in 1 1/2 months because the symptoms were not better and he said, again, "come back in 6 months".

That was complete **** and I argued with him, but he didn't have time for me. So I saw instead Dr. Leone who's bedside manner is about 100X better. He diagnosed me right away and started me on Elmiron. When the Elmiron didn't have any effect after 2 months (and still hasn't had much of an effect), he stretched my bladder. I'm still healing from that surgery, but I think my pain is better than it was before. But at least he DID something about it and is trying to help me.

Carolyn

[CarolineJulia]

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

[camackin]

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!

[ICNDonna]

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

Donna

[Karen05]

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.

[louise]

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
RSMONTY@TELUSPLANET.NET
:angel:

[Mothergoose]

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.

[DebbieB]

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

[Mothergoose]

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

[mcdoll]

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]

[Mothergoose]

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

[mcdoll]

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.

[Mothergoose]

Sometimes the one into research are the most up to date, you never know just go with an open mind.

[mcdoll]

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.

[Mothergoose]

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

[mcdoll]

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.

[Mothergoose]

I know what you mean I had a Dr. tell me repeatly my symptoms, I would say no, he would ignore me and write down that I said it. He decided what was wrong before he saw me and need my symptoms to match his diagnoses. I have had Dr. say if I was not willing to do what they want then they would do nothing for me. I would find a new Dr.
I think the IC Dr. I am going to see at the end of april is going to want me to try Elmiron, I am not really opposed to it but I have had a migrine for the last 3 1/2 years non stop real bad, when I got on this iste I read that lots a people use Clonozapam for IC, I have been using this to help with sleep, bur Dr. kept saying no more than once every three days, so that is what I did. I always felt headache was from lack of sleep. After reading this here I tried taking everynight and after a week no more headache. Dr. said this was okay but they do not want me to increase dose. Okay to stay on one pill a day but not more, so heres hopeing 1 does it, it is so nice to not ahve a constant headache. Most drug if they have a side effect of headache or urine retention, then I get that but intolerable for me. I will go see him and see what he has to say, maybe I can use this drug in instills instead of a pill. I will go with an open mind but I am deathly afraid to do anything that will cause a headache.
Mothergoose

[mcdoll]

I really feel for you about the headaches, I used to get horrible migraines, and even when I didn't have a migraine I usually still had a headache. When I started novo-methacin to try to help my ic it triggered nasty migraines that I hadn't had in years. For me it was in the morning. I wouldn't be able to move it hurt so bad, and since the pills didn't seem to be helping my ic I quit after 3 days. I really understand horrible headaches, then you add a dysfunctional bladder on top of that, it's really not pleasant. The thing with clonozepam is it's a benzo and is very addictive, like my ativans. That's why they don't want you to take too many because the withdrawal afterwards is not pleasant. But god does it help relax! I hope you'll have better luck soon.

[Mothergoose]

I saw Dr. teichman last week I knew from here he needs to work on bed sidemanner. My app went okay, he agree with last uro it's IC. He is doing an ultrs sound and a cysto in May. He wasn't very chatty, he asked loads of question. I came away realizing I never got to ask the things I want to know, and about thing I think that are not related to IC. When I got home I wrote everything I was unable ask and faxed them to him, his recetionist says he does read his faxes. I just wanted him to know if he thinks it is more than IC and wants to do any tests, I want them set up for the sametime I go for cysto cause I have to travel so far.

[Mothergoose]

Hi my gp thinkd it would be a good idea for me to see a PT to get help with PFD. Maybe get taught how to help myself because I live so far away. Problem is I can't find anyone who know anything about PFD. Everyplace I have called says come in for an assessment and we will see if we can help you. some said oh yes we can help with retraining, comman assumption with PFD that you must be incontinent and need bladder retraining. I don't have time when I am at the coast to try nummorus people to find one that know what to do. Or take the chance they will make me worse.

Anyways if anyone know someone who is trained and can helpin or around Vancouver.
Thank you Mothergoose

[missusg]

is there anyone from New Brunswick?

[curlette]

First of all, sorry Jill, for forgetting the rules. I will be more tactful now.
I switched from Dr. Teichman at St. Paul's to Dr. Poon, a Gyno/Urologist in North Vancouver. She has done several procedures on me, hydrodistensions, which seem to stretch my bladder and clean me out, temporarily relieves my symptoms. I've found I'm much more comfortable having a woman Dr. who can treat me for this and also understands what it's like to be a woman. There seems to be a real shortage of OR time for Uro's at Lion's Gate Hospital right now, and I can't have another procedure now until have been tested for Laytex allergies. But I needed my procedure yesterday!!!! Another day another dilemma!!

[Mothergoose]

I am glad you found someone. or time shortage is universal throught BC. My Daughter was in emerg at Xmas, needed an ultrasound for extreme ab pain she finally got in the begin of March go figure. I am glad you found another Dr. I saw Dr. Teichman and I quite liked him he dosen't say much, or give you much time to ask what you want but next time I am going with a list of questions I want anwered and I am not leaving ti ll he address them. He spent his time asking a million questions, and listening to my answers, this took 45 mins so I am sure next time now that we have that out of the way and we a direction to go in I will get to ask ? too. It was not total his fault I was kinda over whelemed by all his question.
Mothergoose

[bladder]

I too felt that Dr. Teichman posed a lot of questions but I felt overwhelmed. I had my hydrodistention and he came in to the recovery room to tell me how it went. I was still doped out from the anesthetic. He asked if I had any questions and I was speachless. Then I got home and had a million questions. :rolleyes:

[mcdoll]

I'd be pretty happy if any of my doctors bothered to ask me a lot of questions. Mine just ask, 'so what's your main symptom'. At least by asking a lot of questions there's a better chance he can help you.

[Mothergoose]

Hi after I saw him I felt i had not asked the ? I wanted to so I wrote them all down and explained why I was writing to him, I then called his office asked for his fax number, his receptionist said that he reads all his faxes. I have not heard back from him but I didn't expect too I just wanted him to know what concerned me before my next app next week. Maybe you could try that. If you don't have an app soon say you would like a responce.
Mothergoose

[canagirl]

Montreal: Dr. Keith Matthews at St. Mary's. He is a sweetheart.

[bluetou]

Hey there...just wondering who you are seeing in Halifax?? I am seeing Dr. Norman.......but my appointment was so quick and out the door I did not have time to breath. I found myself not knowing what to ask (I know now, but at the time I had no clue)....he did all the talking...and just scheduled me for a bladder distention. I cancelled....and am due to go again in Feb...but again not sure if I am going...

I never did get all the info I wanted from him....

Who are you seeing? if there is someone else, Iw ould love to know.

thx.
peace
blue
:pray:

[Mothergoose]

You can go to the IC ass web site and ask for a list of Dr. registered to treat IC in Canada. I found a very good one from this list.

[canagirl]

what is the address of that site?

[Mothergoose]

I believe it is www.canadaic.com

[canagirl]

It seems to be the same site as this, where could I find the list?

[Mothergoose]

Sorry this took me so long to reply to this, I haven't been on the computer much lately.

Go to the IC ass web site given in a previous post and there is a contact us on it some where I email a person who very nicely responded to all my ?'s and sent me a list of all the Dr. that have register with them that they treat IC, there are I am sure other's who treat it but have not registared with them, so it does not have all dr for sure but it is a starting place.

This person forgotten her name right now is very helpful with any info you need, I have even emailed her after speaking to uros and getting conflicting info, and she has given me the latest thoughts. I think sometime Dr. learn about it but then as ideas change they don't keep up with the new thinking, so they don't always know what is current. I realize they have lots to keep up with, so if IC is just part of their practice, they may not be current.

[playethic]

Hi
I'm willing to be a connector/coordinator to get a Vancouver support group going. I contacted two Lower Mainland names mentioned in this forum, they are located in a city outside of Vancouver but don't currently meet as an in-person support group.
I'm interested in meeting centrally, even somewhere nearabouts St. Paul's Hospital. We will need to brainstorm meeting space, and I'm willing to start putting out feelers about that if there is enough interest.
If you are interested in meeting with other IC patient to discuss places to get/try treatment, solutions/remedies we've tried/had any successes with, local GPs sympathetic/knowledgeable about IC (I have an idea about this one), specialists, current local research trials, and to share experiences/successes/side effect of different narcotics/opiates, let me know. I'm interested in informal gatherings initially, and am keen to begin this in downtown Vancouver somewhere as soon as March 2011.
Please connect if you are interested.
Lisa
Vancouver BC Canada