Where are all the Ontario members gone to ???

[DebbieB]

Hi Everyone;

Jill set up the new boards for us all to use , where is everyone ??

Come and post your questions !!

Debbie

[Darkravensor]

I am from Eastern Ontario. I didn't realize this section was here on the boards. Nice to meet everyone.

Darkravensor

[DebbieB]

Welcome Darkravensor to the Canada chat !

Yes ,we have had this Canada chat message board for over three years now !

I am from Southern Eastern Ontario ..

Debbie :smile tee

[LYLLA]

Hi guys,
I am currently living in the GTA and recently diagnosed with IC by my GP. am in serious need of a doc who UNDERSTANDS this disease. This whole "wait and see" isn't working and I am running low on my "reserves" (meds). Can you guys suggest any docs that would be able to help me?

Also, I just have some general q's for anyone that has been dealing with this for a while...
1. what kind of life did you have before and after treatment? (in other words, did the meds help significantly or not)

2. For those who had IC before and after menopause did your symptoms get significantly worse or better?

3. What kind of life are you living when your not in a flare? what are you doing for fun/work

[jass]

I am from Scarborough Ontario. I can understand regarding the waiting for months to see a urologist and when you finally do he/she is totally not supporting at all and does'nt show the care. Where else do you turn?

I am not yet diagnoised but do have the symptoms, my story is a long one, but currently I am taking herbal treatment which seems to help with the pain, so I am hoping like all of us here that some thing work out for me.

Feel free to PM me if anyone like.

Regards
June

[DebbieB]

Welcome Lylla to the Canada Chat message board...

I had Ic for over 13 years or more and I did not have a great life at first , tons of tests , treatments and meds , did it all my life and my last and only resort for me was to try was the InterStim Implant , it change my life so much that I was able to go back to work and am doing really well with the InterStim Implant now 11 years..
In saying this , there are lots of good treatments out there and meds to try now, I did not have some of these that they have now before ...
The InterStim Implant was my very last resort and telling you this I don't want you to run out and do it , it not for everyone ...
My Ic was at it worst and nothing was helping me at all.

Well I know doctors that deal with IC , are on a very long waiting list and so sad that it is that way , as I know I had to wait a long time to find that right one, your doctor did not send a referral to a doctor for you ?

My menopause was okay with IC..
I have been through chemo for cancer and it did not brother my IC , which I was surprise but I was to ill to know any different to ..

I am back on my feet and back to work,I guess I am lucky as my Ic has not been off the rocker in a long time ..

I know you are frustrated to say the least now , I am here if you need to vent or ask questions any time Lylla !

I do hope you get to see a doctor real soon !

Debbie

[DebbieB]

Welcome June to the Canada IC message board !

I understand the frustrating part of finding a doctor!
I had to go to four before I found the right one my self ..

I hope all works out for you to June ..

Debbie

[LYLLA]

So as an update, my GP has referred me to an IC guy in North York hopefully that proves promising. I am very curious about this implant... what is it? what does it do? Also would your IC be classified as mild, moderate or severe?

I am so glad you were able to go back to work, that's a pill i refuse to swallow.

Hope to chat with all of you real soon, US CANADIAN GIRLS GOTTA STICK TOGETHER!-- it's nice to have this page so we can swap Canadian approved meds and treatments.

[DebbieB]

Hi Lylla,

Well my problem was that I was unable to pee on my own, so it was severe to the point that I had to self -cath for over two and half years, so the InterStim is used for this , some people are helped with it and others are not ..
Also another name for this device is call Neuromodulation , there is a board up above just for this subject on this message board ..
There are lots of problems with this device with lots of people but also has to do with the doctor doing this procedure as well..

We only have five in all of Canada that are trained in doing this procedure and I am lucky to go to one at Toronto Western Hospital ..

The InterStim is use for therapy of the bladder and you can read all about on at www.interstim.com

This is a very touchy subject on here and lots of people have had lots of problems with this procedure and lots have had good success to !

If you like to private message anytime about it I will be happy to discuss it with you there Lylla..


Debbie

[KimP]

I am here from time to time, but am doing things on my own so to speak. Out of work for over a year, but had short term work at a temp agency. Things will get better, they always will.


Happy Tuesday

Kim

[LYLLA]

so i got a call from the doc today and one test came back positive for uti, this should be good news i guess but I am PANICKING! i have taken sooooooooooooo many antibiotics that i am so afraid they won't work and my symptoms will get worse and I'll be S.O.L

IN NEED OF SOME SOUND ADVICE!

[DebbieB]

Hi Lylla,

I understand you concern , but uti are very common with IC ..

I also thought that way with antibiotics as well , but there are lots of different ones out there now, so I would not worry so much about it !

Have you try instillation for the bladder ??

Debbie

[DebbieB]

Welcome Kim ,

I am sorry to hear that about your job ..

I do hope things do get better for you soon !


Debbie

[CindyLu]

I just found this Ontario forum and decided to drop in and post a message. I live in the GTA and have had IC for 5 years but have been diagnosed for 2 years. I have had success with Elmiron and physiotherapy, but I still get frustrated with flares and the restrictions that IC imposes on my life and the choices I can make. I would love to travel more and do more physically, but find that I have to always be delicate and careful with myself. I just returned from a trip to PEI and I did something to cause a nasty flare after months of feeling really good. My husband cut our trip short and I am home now trying to get this flare under control. I will see my physiotherapist tomorrow to see if she can help me out of it. If I had "cheated" on my diet or done something outrageous I would be more willing to accept the flare. It might have been a kind of challenging bike ride I took on the trip. Remember when exercise was a good thing?

[LYLLA]

Hi CindyLu,
welcome to our little group! I am currently trying to locate a physiotherapist for my PFD can you tell me who you go and see?

I'm really sorry that your flaring right now hopefully it'll be a short one.

Thanks,
Lylla

[MaryMcE]

Hi Everyone.

I am from a small town between Windsor and London. I have been dealing with menopause causing IC like symptoms, but have never been diagnosed. It has never even been bad enough to have any uro testing done.

I went to see a homeopathic doctor recently and it was a really good move for me. She put me on a low dose of Sepia (google Sepia homeopathic remedy for symptoms) and my hormones (and therefore symptoms) are regulating and calming down. I just seem to get a lot of pressure and bloating after my period for about a week, but this month less than last. Hopefully this is the answer for me. :pray:

BTW, in the spring I ordered Cystoprotek from the IC store and it made my symptoms worse, worse, worse. I ordered the buy 2 get one free so I now have 2 full, sealed bottles that I will not use if anyone wants to try them. They expire in March 2012. I'll ship them to you if you want to give them a try without the hassle of getting them over the border etc.

It's a hot one here in the Southwest!!! Hope everyone is keeping cool!

Mary

[lonen86]

Hello : I live in London ,Ontario and was diagnosed with IC in 2007 . I'm doing a little better with Uracyst ( are we lucky to have it here ) so nice to hear we are still here and whiling to share our similar stories . Thank you to all !!!

[pooby]

Hi I am retired and live in Mississauga Ontario. I was on Elmiron last year for three months. I had sling surgery and on ovary removed last fall. There was some improvement but I wasn't sure whether the surgery helped or whether it was the Elmiron. Since then I have had a strep B bladder infection. Penicillin was used to treat it. It cleared up and I was able to empty my bladder somewhat normally. Now again I feel like I have another infection. Well I tried the cinnamon/honey mixture. It was real ugly the cinnamon didn't disolve and it was like trying to drink a dry powder mixture. Probably should have poured it through cheesecloth before I tried to drink it. Awful ended up throwing out the last few ounces.

One of the problems with IC is that you can never be really sure whether it is an infection or the IC acting up again. I believe that IC does put you more at risk for these types of infection. Really my urologist felt I had more than one problem with IC, Infection, Fallen bladder (now fixed). He actually told me he did not see that many patients with IC. At my worse I urinate 100 times a day. At my best I am up 2 to 6 times a night.

[LYLLA]

Hi guys,
if any of you are interested in finding a PT for your PFD i just found this website for southern ontario. They also have listings for sex therapists, psychologists for pain and alternative medicine listings and how to deal with chronic pain and helpful techniques.

http://prc.canadianpaincoalition.ca/en/physiotherapists_specializing_in_pelvic_pain.html

I'm not a doctor, i just know how hard it is to find people who specialize in such areas and thought i could share some of my endless hours of research.

[pooby]

Do you still have the Cystoprotek? I live in Mississauga. How much do you want for the two bottles?

[DebbieB]

Thanks Lylle for the information , it will be very helpful to others ..

I am sorry have not been in touch with you , lost all my emails addresses , which was not nice at all ...

Debbie :(

[DebbieB]

Welcome to CindyLu , MaryMcE , Kristen ,lonen 86 all to the Canada IC chat board, glad you found us here ..

I have met so many people over the twenty years or so on this message board.

We all have different stories to share and are here to support each other and give some advice , but none us are doctors , we just share what we try.

I am hoping in due time there will be some other treatments out there to help many who have suffer and have no relief of their pain ..

Debbie

[MaryMcE]

Hi Pooby.

I still have the cystoprotek and you are welcome to it. Maybe you could just send me some $ for shipping when you get it. I just want someone to be able to use it.

You can pm me with the address where you want me to send it. I'll let you know how much it cost to ship and if you are able you can reimnburse me.

Mary

[pooby]

Sorry Mary for taking so long to post. I am presently waiting for the results of some medical tests. I will get back to you and thank you for the offer.

[MaryMcE]

No probs. Just let me know if you want them.

Good luck with the tests.

m

[LYLLA]

hi guys,
just got over a very short flare on the weekend, but I do have some questions to everyone about their flares... the reason being there is some debate amoung my doctors on whether i have IC or PFD (i could always have both).

So here's the question I post to all of you: when you are having an IC flare what does your bladder (exclusively) feel like?

The reason why i ask is because mine does not burn and isn't really affected by food but the sharp pains surrounding the area is killer. there is a little bit of evidence which suggests that my IC may actually be PFD but I am looking to gather more evidence on the topic.
Please share what your flare "feels" like

Thanks guys!!

[pooby]

When my IC flares I get urethra burning pain. It is not relieved until I void or at least try to void. My voids are excessive and very small. I am up ten plus times per night to use the washroom. I constantly have to use the washroom and if I try not to go the urethra pain becomes more and more intense. Then I void a small amount and I get short relieve sometimes for less than 5 minutes.

The trouble is infection acts the same way and I have had those as well so it is difficult to separate the two. I am a senior on HRT replacment and have no vaginal issues.

[CindyLu]

I get burning under my pubic bone and my frequency increases. When I have had an infection I usually have a fever but other than that it is really hard to tell the difference. I have a "frequent flyer" card for my local lab near home so that if I think I have an infection I leave a sample there and then call my urologist for the results. He gave me a repeat requisition so I could do it. I have urine bottles at home so I can do it here and just drop it off. I have been flaring for the better part of 7 weeks now after being in what I thought was a remission for the last few months. I tested negative for an infection and my urologist started me on Elavil 2 weeks ago. I am still hurting, and I am so discouraged by the length of this flare. I am imagining bad things which only makes it worse. Sometimes it is hard for me to believe I will have this cursed affliction for the rest of my life. :mad:

[barb 1]

Hi everyone.

Thanks so much Debbie. Got onto the site. Who knows I must have been so tired or something.

Too much surgery and drugs I think.

Has any one heard from Snuph?

Thanks so much

Barb 1

[DebbieB]

Hi Barb,

You are very welcome !!

No, I have not heard from Snuph in a long time Barb ..

I hope you feel better soon Barb , take care .

Debbie

[Cindy-Lou]

Hi Everyone - too funny another Cindy-Lu ... lol
I'm near Ottawa, Ont. I just stumbled across this by accident.
Does anyone know a good I/C Dr. in Ottawa?
Cindy-Lou

[DebbieB]

Hi Cindy-Lou, welcome to the Canada Chat message board !

Yes that is kind of funny the names ...

Well I am about one hour and half South West of Toronto .

I used to go to the IC Clinic in Kingston for all my treatments, wonderful IC doctors there..
I have no idea of any in the Ottawa area, I hope some one will post to you !

I go to Ottawa every year , I just love it there ...

So nice to see you posting on the Canada chat board ..


Debbie

[carole]

I live in Hamilton Ontario. Hi to all of you. DebbieB you stated there is a good IC doctor in Kingston. Can you give me a name or a clinic name? I have had IC for almost 2 years now. I have managed with being on Enablex and following the diet religiously. I used to have several days a month with no symtoms now I find I have them every day. How do all of you manage with this disease mental health wise. I find it very difficult. I find it especially difficult to deal with issues around sex.
I often feel down because I can't do as much as before. I do work full time but I wish I could feel more normal. I don't have frequency thank goodness but I have alot of inflammation. I feel if I could get that down I would feel alot better. I go to Physio and also see a naturalpath. Both treatments are fairly new so no improvement yet. I also eat almost completly organic and cook everything from scratch to avoid any potential flares.
Any non medication suggestions for inflammation? Has anybody tried Wobenzyme?
Well I'm sure all of you can identify with the struggle but we must go on. Look forward to your replies.

[DebbieB]

Hi Carole ,

I just private message you about the doctors , I hope this helps you out !

I have the InterStim Implant and I am doing good with the device , but this was very last resort after all the years of meds and treatments ..
I am glad I did it now ...

Also I never try this Wobenzyme at all, never heard of it , it is natural or a drug ??

Take care and I hope the information help you out Carole !

Debbie

[ICNDonna]

Wobenzym is an enzyme tablet sold by a German company. It contains plant-based enzymes bromelain and papain, which allegedly support a healthy immune system. Their statements have not been evaluated by the Food and Drug Administration.

Donna

[DebbieB]

Hi Donna,

Thanks for the information , I will have to check into to see if it is okay to use in Canada !

[KLocke]

Just wanted to say a quick Hi!! I'm located in Brampton, Ontario but I work in downtown Toronto. I was wondering what supplements people are taking for their IC and if anyone else has CFS as well? Another question, has anyone gone on short term disability for their IC?

Thanks so much!

Kim Locke

[DebbieB]

Welcome Kim to the Canada chat message board..

I ,myself have never try supplements at all !

I have heard is very hard to get short term disability for their IC by some ladies that have told me ..

All the best , Debbie

[rawestrus]

Hello to folks in the GTA:

I was told by a friend of mine whose mom is a nurse in urology that the best urologist in Toronto if not Ontario... if not Canada!?!?! (ok now I can't claim that) is Lesley Carr. I am due to see a urologist soon in North York, Toronto, who is a man. Not too optimistic.

But I have googled Carr and apparently she has a long waitlist, BUT I saw ICers reviewing her and saying she is an amazing, amazing woman who is also sensitie to the emotional/life consequences of living with IC.

Maybe I can try to get a referral to her and be put on the list, however long that may be!

Louise

[ELDA]

Hello everyone=) I'm new here. I'm 21 and i was recently diagnosed with ic. Im glad that now I finally started my treatment with pills, because before I took antibiotics for almost two years not knowing what was wrong with me. I am looking for a new urologist, the one I have is impossible to reach in emergencies, I get all the help and all my prescriptions from my ob-gyn.Does any one know about Women's College Hospital, I'm thinking to get a referral there, and hope they have good specialists with new treatments. I need this ic to END! Also, anyone from Toronto? I'd love to chat:)

[DebbieB]

Welcome ELDA, to the Canada Chat message board ..

I am not in Toronto , but there are some girls on here that are , so I hope they will reply to you soon..

All the best at getting a referral to the Woman's College Hospital ..
My specialists is at Toronto Western Hospital and had him for a long time .

I hope you get some help with you IC soon ..

Debbie :smile tee

[ESM]

Hi,

I am presently living in Montreal but lived in ottawa for years. I was wondering if you know doctors who are comfortable with interstim. I am on a waiting list to see a doctor in Sherbrooke but I've been on the list for 2 years already. I was wondering if there are any other specialist in ontario or quebec.

Thanks!

[67lph]

To all of you in Ontario still looking for some relief I have had wonderful results from Uracyst bladder instillations. I still am very careful about what I eat but I have not had a significant flare up since I started this treatment. The treatment consists of six weekly treatments and six monthly treatments.
I was previously on Elmiron and Atarax. They both helped me but now with the Uracyst treatments I am no longer taking any oral medicatons. Good luck and don't give up! There is hope.

[GlassGirl]

Hi All :hi: just found the "Ontario" section.

I am in Northern Ontario ... although most times it seems like the "North Pole" - it is SOOO hard to get a Dr. here and even harder to get a "specialist" - not alot of Docs want to come here. 8 hours from a big city no matter which direction you go.

Happy to have found this forum! :smile tee

[carole]

GlassGirl welcome! I can't imagine living in a rural area and having to deal with IC. It must be so difficult for you. Glad you found us also. It's a great place with lots of support and info.

[pooby]

I live in Mississauga and fortunately for me I am presently in a good period. I find that the flares do come and go with no indication as to why as my eating and drinking habits remain the same. My urologist had prescribed a super high dosage of detrol 3 x the maximum. I discontinued using the drug and at the present time I am on nothing although in the past I have been on Elmiron. Hopefully this good spell will last a while. Even on my best spell I still have to void every 40 minutes or so and am up at least 6 times a night. Guess I have just gotten use to it and in comparison to voiding every 10 or 15 minutes I am great.

[carole]

pooby I live in Hamilton. I tried Detrol only took 1 or 2 pills and it made me really sick. I take Enablex daily and have managed with that. I am thinking about trying Elmiron but I need to look into the side effects a little more. I am very sensitive to medications and always have been. I am lucky in that I don't have frequency I void a normal amount during the day and usually don't need to get up at night. The only time I do is if I've had alot to drink before I go to bed then I will usually get up only once. I couldn't imagine having frequency on top of my daily symptoms. I get flares regularly for no apparent reason and I am very food sensitive. I even have problems with some of the safe foods. I guess we all have our obstacles. All in all I manage fairly well.

[MaryMcE]

Carole, can you please tell me what your symptoms are? I don't have frequency either.

Mary

[pooby]

Yes I would like to know what your symptoms are and how you were diagnosed. I always thought the hallmark of IC was nocturnal voiding 8 times or more.

[carole]

MaryMcE and pooby. I was diagnosed by my Urologist who is the IC person in the Niagara area(according to her). My symptoms vary from day to day but they can include the following:
pressure feel like I got to pee
burning and inflammation
pain pelvic, bladder and some shooting pain down my legs(at times) back pain at times
food sensitivity to all the no no foods and some safe ones
When I have a bad bladder day I also feel sick all over(flu/cold like)
Those are the main ones. It is my understanding that it is not uncommon for an IC patient not to have frequency.

[pooby]

Carole,

Have you had your lower back checked out? The leg pain and bladder symptoms can be attributed to nerve problems in the lower lumbar spine.

[carole]

pooby I do have lower back problems from a car accident. My leg pain is not often I usually only get it when my bladder is really flaring.

[MaryMcE]

Thanks Carole.

I too was told that the night-time voiding is tell-tale of IC. My voiding is no different from how it was years ago. I get up once a night, maybe - sometimes not at all. I simply have pressure. My symptoms are more like ovarian cancer than IC, so I'm still trying to get to the bottom of it all. (BTW - I've been checked for OC - all clear - yay).

I wish you all well. (BTW I'm a former Burlington-ian - your neighbour!)

mary

[pooby]

I had to have my ovary removed last year. The surgeon told me that ovarian cysts secrete prostaglandins that can cause bladder symptoms. My IC unfortunately still is flaring but I thought that this was an interesting fact. He said that many patients find bladder relief once an ovarian cyst is removed.

[MaryMcE]

Thank you for that info Pooby. I will look into it. I have been told I have a very small ovarian cyst, but the dr. does not see any reason to remove it. I'm seeing a uro-gyn in London (I've been waiting a year to see her - I don't even have an appt. yet!) so maybe she'll have some answers for me. In the meantime, I'll research the info you've given me.

Thanks so much. This site is so helpful.

m

[DebbieB]

Welcome everyone to the Canada Chat message board ..

I know is so hard to find the right doctor to help with IC , but when you do , it does help you lots ..

All the best to you girls and I hope things work out alright for you !

I do not have the problems you are discussing , so I can not help you out but glad you were able to get some help from others ..

All the best , Debbie

[Cindy-Lou]

Hello Everyone
I just wanted to share that I am now being treated by a very nice urologist in Ottawa. My Gynecologist referred me to him - Dr. Filimon DeJesus. He diagnosed me with IC through hydro with distention.
Cindy-Lou

[featherbullet]

Hi, is anyone here from Ottawa ? I am looking for a support group in the area

[Cindy-Lou]

Hi Featherbullet
I'm about two hours west of Ottawa. I do not belong to any support groups but I think if you google IC and Ottawa you will find a group that meets once a month or so. I recall seeing when I was surfing the internet about a year ago.
BTW I find Marshmellow Root tea very soothing you can find loose leaves in most heath stores and Marshmellow Root tea bags at Rainbow Foods on Richmond Rd.
Cindy-Lou

[Must Beat IC]

Hi,

I'm new here and still looking for a good place to go for treatment. I live in the west end of Toronto (Mimico or SE Etobicoke for those who know the area better). I've heard the Leslie Carr suggestion. I tried to get into see her at Women's College few years ago when I was flaring but I couldn't get the office to call me back. It looks like she's moved to Sunnybrook now and that's an hour and half away by public transit for me. And given they wouldn't return my calls before I don't have a lot of hope of getting in to see her. Anyone have any other suggestions? It seems like there's not much in the way of treatment in Canada compared to the States.

[carole]

Must Beat IC how far are you willing to travel? I see a good Uro in Hamilton called Dr. Greenspan. I hear the best place around here for IC is in Kingston. I also hear there is a good pain doctor in Toronto. Not sure what the Toronto doctor's name is but I can get it if you want. Best of luck! Looks by your join date that you might be new to all of this. Let me know if I can be of assistance. I know how hard it can be at first...well always lol but especially at first.

[Must Beat IC]

Hi,

Hamilton and Kingston are way too far as I don't have a car. Anywhere in the old city of Toronto can be reached easily by transit but, if by "Toronto", you mean Scarborough or something, no, too far. If you can find the name and location of that doctor, that would be good. What's the difference between what a pain specialist does for IC and what a urologist will do for it? I haven't seen either of them. I've had IC since my 20's and am now 48. I've kept it under control with only occasional flares with diet, lots of water and Tums but I got into a bad flair about 7 weeks ago that just won't calm down. The last time I looked for help, most urologists didn't even "believe" in IC. I was sent to one who at least "believed" in it, but when I told him I'd gotten a diet that was helping from Gillespie's book he was sort of condescending and acted like he was humouring me. Yet he had nothing much to offer in the way of help either. He believed I had it, but he didn't know what to do about it, so it was kind of useless. I gave up looking for help after that and just learned to live with the flare ups.

I'm not sure what caused this one. Several things might have been involved. I took antibiotics in June for a sinus infection and suddenly noticed increasing frequency after that. I was eating more acidic fruit since it was summer, I was doing a medical treatment for depression that can affect hormones and was noticing changes in my PMS and period intensity and duration. I wonder if hormones were involved. Because my depression was lifting I began to exercise and may have overdone it and sent my pelvic muscles into spasms. That's something I just learned about in "A Headache in the Pelvis". That's a new theory that wasn't around 20 years ago. I do indeed have very tight, sore muscles right in the spots they tell you to stretch and massage, even though I've stopped exercising.

Anyway, I thought I'd see how much the situation has improved for IC sufferers in the last 20 years--apparently not that much, at least not around here. I don't know where people are getting so much help with it. Guess, you have to live in Kingston. (I read that clinic has stopped taking people from outside Kingston, actually.)

[Danka]

It's really strange that nobody is visitign here. Can't belileve that everybody feels great, and there is no need for a chat ??
Can be just me who has this nasty condition.
come on Ladies - let's talk :)

[nparsons89]

Hey I'm new to the board and would love to chat with people from Ontario! It'd be nice to know some people who are also suffering like me

[featherbullet]

Hi there, where in Ontario do you live? I'm in Ottawa

[carole]

Welcome nparsons89! I live in Hamilton Ontario. Feel free to PM me.

[nparsons89]

I'm back and forth from the Cambridge area and Sudbury area

[Danka]

Hi Ladies,

good to see more of us here. I live in Brampton, ON.

I am on Elmiron 2 x day (9 months already)
Aloevera w Quercetin 2 x day
and just started this morning Glucosamine3 x day.
I had antidepresand prescribed by my uroo, but could not sleep when I was taiking it, and had to stop.
I have another visit scheduled soon. Any suggestions what kind of pain medication is worth trying?

[endofmyrope]

<---- In Brantford, Ont.

Stuck with IC for now 3 years.... (22 years old)
Had to drop out of college twice because of it...
Tried many different medications...diets....
nothing has worked for me...
Lately have said to hell with this sickness and started working out again...

viel glück!

Mike.

[carole]

Mike,

I live in Hamilton Ont.I also have had IC for 3 years. I'm so sorry you are so young to be dealing with this. I too have not had much luck with medications or supplements as it seems everything makes me burn. Just wanted to let you know I hear you and I definetly understand. I too have also just recently started working out. I find it helps at least with my mental health. We are here for support if you need us.

Carole

[Danka]

Hi to everyone,
just wandering how is everyone doing. How are you doing today, hope much better.
Please, share your progress, and hopefully success stories.
I have just read on US site post about Chaga mushroom, anybody tried. Apparently it is almost a miracle cure for everything.
I wonder if we can get it in Canada.

If you happen to know about it, please reply, I would definitely give it a try.

Take care all - Danka

[Danka]

Hi Mike,

I know how you feel, I got my IC when I was 20. Suffered from it for few years, then went into remission for few years and now I live with it again 4th year. Stick to the diet, please. It will not cure it, but if you give it enough time you will find some relief. I take Elmiron, and also some herbal remedies, and something works. I feel much better than at the beginning.
Take care - Danka

[Danka]

Carol,

how do I find this Canadian site.I come here through the general IC Network, under Canada and then Ontario, however all Canadian posts there are old.
Please, send me the link. I will call you sometime this week.
Hope you had pain free weekend.

Danka

[endofmyrope]

Actually in this last week, After I go for my 5k run I find that I have to go a lot less. so I have no idea what that means, a possible muscle issue as apposed to a bladder problem.... who knows...
But afterwards I went 5hours without needing to go so theres gotta be something there.

Cheers,
Mike


P.S I guess I am already "on" the diet seeing as for the last month I have been running and changing my diet to loose weight.

[carole]

Mike I have been working out for 2 weeks now and within 2 days of exercising I had a huge decrease in symtoms. I thought it was just a fluke and I was waiting so see what happens over time. It sounds like it's done the same for you. I have no idea why but if exercising every day will decrease my pain then I will do it.

[carole]

Danka I am feeling alot better since I've been exercising. Thanks for asking and speak to you soon.

[Danka]

Mike,
have you been diagnosed with IC? Are you sure that this is what you have? Have you seen urologist? Maybe it isn't IC, maybe you have completely different condition. It just sounds strange to me that you can run, 5km? - wow.
When I was in more pain than now I would never think of doing anything that would involve running, jumping, or any other quick movements. Even walking was painful for me.
Maybe it is different for men.
But hey if its working for you that's excellent.

You should really check that with a doctor.

Good luck,

Danka

[endofmyrope]

I was told that IC is a syndrome of removals...

I.E you don't have this this and this that means that we have no idea whats wrong with you therefore you have IC.

I've been seeing a urologist for going on two years now, and He thinks it's IC
I've had all kinds of meds pumped into my bladder as well as many hydrodystentions...
They have found no problems and no medications have worked.
I don't have a doc at the moment because I just moved but When I get one I will.
the pain is there but when I run and afterwards it just goes away...

[Danka]

"I was told that IC is a syndrome of removals..." - little confusing to me. Seems that you are one of us. Doctors can name it but can't really treat it. It's too bad specially for young people like yourself. Have you tried any natural remedies? Or Elmiron? I take Elmiron now for over 1 year, I think it helps at least a little, my symptoms are much better that they were 2-3 years ago. Plus I take herbal remedies on myown. something works, maybe it's the combination of "stuff" that I take. I don't have to go for instills, had one done under general anesthetic, but it didn't do anything for me. So,I'm stuck with Elmiron, and pray that one day it will go away - have to believe it, otherwise it can drive you crazy.
Hope you are having a good day,
take care,
Danka

[_jessie_]

Hello fellow Canucks!
My name is Jessie, 30yr old female from Tecumseh, ON. I was just diagnosed with IC after a cysto & hydrodistension in Feb. Just joined the ICN, but it's already been a wealth of information for me. Nice to see the Canadian group, so I can get better acquainted with the resources and common practices in my area.
Looking forward to 'meeting' everyone!

[carole]

Welcome Jessie. Let me know if I can be of assistance to you in any way.

[madbutler007]

Hi guys,

I'm new to the forum and have not been officially diagnosed with IC (had a tentative diagnosis after they eliminated most of the common causes when I first started having the issues 7+ years ago) but strongly suspect it and/or PFD.

Just wondering if anyone had any new info on practitioners in the Toronto or GTA? I am currently having a very bad flare up (first time in almost 3 years) and need help ASAP.

Thank you.

[Danka]

Hi madbutler007,

I don't know any uro in Toronto. I go to uro in Brampton, and if you want I can provide you his name.
Just let me know and I'll be glad to help.

take care,

Danka

[madbutler007]

Yes, please. If he/she is good, I am willing to travel.