Hi! I have some questions....

[sushi100]

Hi! I don't speak english very well because i'm a french Canadian from Montreal. I'm newly diagnosed with IC and i have a lot of question to ask about this sickness.
I try to follow the IC diet but i want to know i many times i have to wait to know if an item cause a flare... if i have a flare at 3 pm, i have to see on my breakfast or my dinner?
I don't try any med yet but i'll see my uro tomorrow afternoon. I hope he want to give me Elmiron.
My symptoms begans in July whit 4 days of anormal fréquency. After antibiotic, i was ok. But, at the end of December, i have had a new episode of frequency and they don't disappears since that time. Now, i have a strange sensation on my vagina, like a rock on it and a pression on my bladder. I have had 7 days off last week, but now i'm on a flare. It's not a terrible flare, but it is very incommodant and unconfortable.
I need some positive story because i'm very afraid about that!
I'm 35 years old and i'm a very active woman who travel 3 times a years all around the world. I can't imagine my life without.
Thank you and i'm sorry for my bad english!
Sushi

[sushi100]

I just want to add this information...

I had my cystoscopy in January 27th in his office but not with hydrodistension. Everything looked normal, he just said my bladder was pink and he was confident that I had IC. One thing at my procedure that surprised me was that he didn't fill my bladder to capacity. He didn't think it would help him diagnose.

He just gave me Enablex, a med for an hyperactive bladder. It does'nt help me so much.

Thank you for your answers

[leelee88]

Hello and :welcome:

We do have some members on here from Canada. I hope they will respond.. I do suggest you look at the Patient Handbook..

[Tinkerbell23]

I hope you will feel better soon and get what you need from your dr. i cant really answer your questions, only say what i experience. for me i will know within 20 min if a food or drink bothers me. a hydrodistention may be something you want to discuss w/ your dr as long as it is a procedure he uses. some people feel better for a bit after having one done. my first one was not done right so i didnt feel any better but my second gave me 3 weeks of no pain, might not sound like a lot, but it was for that moment of my life! i would read dr moldwins ic survival guide, i know you said your english isnt great (which, by the way i thought you were fine :) ) but maybe you can take a look. it can most likely answer all your questions along w/ the handbook on the ic network which you can access right now. feel better and good luck with your dr.

[sushi100]

Thank you for all...

I also have a terrible backache (low back) and i have this strange sensation in my vagina... you ever have this kind of flare? I always have big trouble with my periods and my ovulation too...... so now i don't know if it's my bladder or my period who cause me this flares!!!

I command (???) a book, Prelief and some items here, do you know i much time is required to have it?

I'm very sad and afraid tonight. Please give me some positive minds.

Sushi

[leelee88]

I can relate to the feeling you are having in the vagina. This could be related to IC.. When the bladder goes into a flare it starts to have spasms. Well this will make a strange feeling down there..

Also I hope you are trying the IC diet.. Staying away from certain foods can really calm the bladder down.

Here is the link to the Patient Handbook
http://www.ic-network.com/handbook/

[leelee88]

BTW when It is time for my period, even though I take Birthcontrol pills, I have the worst IC flares. So your period could be causing this.

Hang in there.. This will pass..(((hugs))))

[sushi100]

Thank you again...

I try to follow the IC diet but i want to know how many times i have to wait to know if an item cause a flare... if i have a flare at 3 pm, i have to see on my breakfast or my dinner?

[ICNDonna]

I think it would be good if you follow the IC diet until you feel better. Then you can begin to add some foods and drinks. Add only one at a time and wait for four or five days before adding another. That should be long enough.

Sometimes it can take a whole day for me to have a flare from eating something.

Donna

[sushi100]

The doctor gave me Elmiron (oral) and Detrol for my frequency! I hope i will feel better soon!

[Tinkerbell23]

w/ my ic i do get a lot of back aches, i do not know why this happens but my dr says its common. glad you were able to get some meds and i hope you feel better soon.

[sushi100]

Thank you!

Do you have this back aches yet-again (i don't know which one is ok - LOL)? Do you feel better now?

I can't have an hydrodistension, my doctor doesn't want. I don't know why... so i'll always have a doubt on my diagnoses. I will have RIMSO traitments for 7 weeks. I pray for a better health!!!

xxx

[DDD]

Hi, I too have been diagnosed with IC. The first flare was in 2004 which lastedd on and off for 8 months. I was diagnosed after 8 months and put on Elmiron and Elavil. These two meds helped me gain my life back. I was in complete remission for the last two years until I had back surgery for a herniated disc in June 2008. The stress of surgery put me into the ultimate flare landing me in the hospital for 4 days. I received bladder instillations every 8 hours for 4 days which seemed to calm things down. I started back on Elmiron and had a difficult time for 6 months until I went back on Elavil. I started back on Elavil 10 mg. at night in December and I've gained my life back. There is light at the end of the tunnel. Hang in there and talk to you Dr. about these meds, they really helped me. Good Luck!

[mrachel]

I have terrible lower back, hip, and pelvic pain with my flares which I happen to be experiencing right now. I went on birth control pills and only took the active ones (first 3 weeks of a pack) so I didn't have a period because I always flared with periods. I stopped doing this several years ago when my symptoms got better but I'm about to start the active only pills again since I'm having a long flare. I wish you the best with your treatment. As others have suggested stay on the diet as closely as possible for a while and you may see some improvement. While I was in remission for a while I could eat many foods that I used to eliminate but in the past few weeks I'm having to stick closely to the diet because I'm in pain again. I usually feel a difference if I've eaten something by the next day. Sometimes it happens quickly but other times it takes several hours. I wish you the best as you find treatment options.

[sushi100]

DDD, your message gives me faith in my heart!!!!
mrachel, you know, i'm not very good in english, so i just want to be sure... When you took the pills, you feel better because you don't have your periods? If yes, i'm going to my gyneco right now!!! because this kind of flare (back aches, inflammation, etc.) bugs me for a long times (maybe... 7 years). My frequency begans in December only...
Thank you of the bottom of my heart!!!

[mrachel]

Being on continuous birth control pills helped some because my hormones stayed level. I would stop the active pills every 4 months when I wasn't in a flare and have a period. Sometimes this can help but it didn't make my symptoms go away completely. I think like DDD suggested you should talk about some different drug treatments that might be helpful as well. I've had periods of success with Elmiron, Elavil, attarax, and several other meds. It's a process to find what works for you and it may change over time. I've also done the instills that have helped for immediate relief.

[CindyLu]

I just wanted to welcome you and try to offer you some encouragement. I grew up in Montreal and now I live in the Toronto area. As Canadian patients we have unique concerns and issues with our medical system and care.

I have so many different types of flares. I feel them in my bladder, urethra, my back, my thighs, and what I think is my kidney area. I can flare from food or from exercise or just from being on my feet too long. I can flare soon after eating something (and I never eat anything truly "bad") or it can happen the next day. It is very frustrating.

I have been on Elmiron for 5 and a half months and I am noticing a very slow improvement. I still flare (I am in one right now and I don't know why) but they are becoming a little less painful. I am hoping it is the Elmiron finally starting to work. I am also on Vesicare for OAB but I am not sure it does anything for my symptoms.

By the way, your english is very good. Bienvenue et salutations.

Cindylu