Can I drink anything besides water?

[annelies]

Hi There,

I am newly diagnosed (Nov), and I'm in horrible pain all the time. I've been on Elmiron for 7 weeks now, and am waiting, hoping, praying that it will be the answer. I've been trying to follow the IC diet, so I haven't had anything to drink but water for the last few weeks. I'm so darn sick of water, I can't even begin to tell you. I miss my coffee, tea, diet pop, and an occasional glass of wine. However I'm so scared of making this pain even worse, that I've been sticking to water. I've been taking prelief with meals, but I'm not sure if it would work well enough to allow me to have a cup of coffee. Any suggestions?
Also I was wondering - my gynocologist is who is treating me for IC. Do any of you think I should go to a uro too? I was thinking that maybe a uro would have more ideas of things to try besides just Elmiron. My gynocologist hasn't suggested anything besides Elmiron. What do you think? I'm just so scared a uro is going to want to cath me, and that's a real phobia with me. It sounds SO painful! I'm already so sore, I can't imagine having something inserted down there.
Anyway, thanks for all the support. It is so comforting and encouraging to read all your posts! I don't feel so alone now. Thank You!!!!

[kimberlydawn98]

Hi,
I don't know how familiar your gyn is with IC, but I do work for a urologist and feel that the urologist would have more information. I would love to talk to you or chat, email, whatever, if you have any questions I can help with.
Kim

[Tracey5399]

Hi,

Welcome to the boards. I know exactly how you feel as do all of us. I was right where you are oh about 5 1/2 months ago. I had started the Elmiron July 18th 2005. I was soooooooo scared it wasn't going to work, OH MY! go check out some of my old posts if you like, geeez i was annoying LOL.

I would definetly suggest a uro and please get the list from the ICNetwork, i can email you the link ( not to computer literate lol ) It's real important to get an IC friendly URO.

Lots here take all sorts of different combination meds so i have learned and even tried myself. Right now i have only been taking the Elmiron for 3 months no other meds ( except my pain pill, when i can't take it anymore ) and my bladder is feeling better, it is definitly working.

Keep it up, don't miss doses, get a good URO, and please follow the diet ( as hard as it may be sometimes ) Your bladder is now 7 weeks w/the Elmiron, works slow i know, but it DOES work. Keep the faith!

Tracey :)

PM anytime if you ever feel the need, and remember you are not alone, we are all here to support & help you.

[Silverfern]

Hi

Well, if it were me, I think I'd want a urologist on board here. A gynaecologist is a 'female reproductive organ' expert, not a bladder expert. For sure, a lot of them seem to be up with the play regarding IC, but they're not the experts, nor do they do cystoscopies and other bladder testing. If you check out the Patient Handbook here on this site, you'll see there are numerous and varied drugs to try for IC and with the pain you're in you need all the help you can in this respect.

I only drink water and plain milk so can't help you much there. Good luck.

Hugs

[kimberlydawn98]

Me again,
I forgot to mention that I can not take any of the IC meds. The Elmiron messed up my IBS and made my diarrhea even worse, so I stopped it, diarrhea got better. I have tried the instillations and they seem to make it worse. I had cysto with Hydrodistention twice, the last being two days ago and that makes me hurt worse! Also, I have been having some bad flares for the last few months and come to find out I had my first Kidney stone! But, it was gone when I had my cysto to remove it on Thursday! lol
Kim

[annelies]

Thanks for the advice and encouragement!! It's nice to know that this is a place I can come to when I need to vent, or when I need help.
I think you're right, I should see a uro. My gynocologist is a good Dr. and he's a sweetie, but this isn't his specialty.
Thanks Again!

[rosesitty]

Unfortunately lots and lots of water and some herbal teas are my beverages of "forced" choice. A friend gave me a wonderful bottle of champagne for Christmas (not knowing of my IC problem) and I've been looking at it every day...longingly. BUT I might as well drink battery acid. Stay the course! :-)
Rose

[jkbentz]

Hi! I am newly diagnosed with IC. I have been dealing with extremely painful flare-ups since Oct. I as well am soooo sick of water. However, at times I do drink some herbal tea, and low acid orange juice (mixed with water!) I am forced to drink only this or risk a flare-up. I would definetely go to a Uro. They can give you other treatment options. Getting cathed is not that bad. After you have it done once or twice you will get use to it. I am getting it done weekly now! I hate it, but I am willing to do anything to help ease my pain. Keep your spirits up!

[marisa]

Hello, I'm new too. My gyo is the one that dignosed me too. I've been taking the elimron since december and I thought it was helping and then all the sudden this week I have had the worst flare ups. Besides the fact they did a ultra sound monday which didn't make things better. Did the gyo do a ultra sound? Either or she referred me to a Uro but I won't get into see him until a month.

[ncnative]

My gyno diagnosed me too. I haven't made an appt with a uro yet but I am going to soon. I have been on Elmiron since July 05. I went off of it in Oct to see if it was working and was in pain for over a month, so I guess it does!

I think I am fortunate that I can drink weak tea, milk, watered down low acid orange juice, along with the water of course. A lot of poor folks here cannot even tolerate some bottled waters.
Amazing how much better I have felt since giving up coffee and sodas.

Thanks to all of you for being out here for all of us!!! :)

[Crysa]

Hi,
Just a practical possible drink option... I find that carbonation doesn't bug me.. though it might you... generally speaking however I find rootbeer is great... you can always let it go flat and add ice if the carbonation is okay for you then you have an alternative to herbal teas and water that you can drink.

Also I am on Elavil also, along with my Elmiron... between them I am often pain free between flares. Go to a urologist though... while its awesome you have a gym alert enough to diagnose IC he's not as likely as up to date on all the options as he is on his own specialty.

Since I also have endimetriosis I find it helpful to get a urologists and gyn that interact well with each other. You need and deserve a great medical team.

CJ

[Paula A]

My gyno diagnosed me also. I have been on Elmiron since May 2005. I feel I need to go to a uro. but I need to find a good doctor and I can't seem too.


:) :) :) :)

Paula

[sueque]

My ob/gyn also diagnosed me (or at least that was her guess). She put me on Elmiron and it helped a little, but not enough to continue. I was terrified to go to a Uro, but after a year, I finally got in to see one. Fortunately, he treats IC and seems to be a good & supportive dr. I had my hydro/cysto today and got a firm diagnosis, so now I don't have to sit around and drive myself crazy worrying it is something even worse than IC!

Susan

[laura W]

I'm in alot of pain as well. I would like to think that maybe I have a bad infection but I know deep down that is not the case. I still drink decaf coffee and that is probably why I still hurt. I also take Elmiron. I have been taking it for two weeks. I have a long way to go. I also take pain medication and it does the trick. The hardest part of this diease is that I want my husband back. He is so supportive and great about understanding why I can't sleep with him right now. I am sooooo angry about this hole IC mess. I feel that I am 36 years old and this shouldn't be happening yet. I am going to see a uro expert in Greensboro NC at the end of the month and I am so sick of suffering I don't care if he has to cath me. I need some relief. My new uro doc is two hours from me so I hope he gives me all the info I need so my GYN can treat me. I would feel more comfortable if my GYN cathed me. You need to find an expert but if you feel more comfortable with your GYN have him work with the Uro treat you.
Good luck and I hope you have relief soon.
Laura

[lledoux_2000]

I was terrified of doing the DSMO treatments because the diagnosis scope hurt so much - but after one of my worst flareups - I went for it. I was as nervous as heck = migraine - and I let the nurse that was doing know that I wasn't happy to be there at all. I said I was bitter; I was mad; but I was hurting and needed help. She went very slow w/me and numbed me up before inserting the catheter... It didn't hurt. The pain wasn't really there - it's hard to explain but the pain was on the inside, not on the outside - and it turned out it wasn't my urethra hurting after all.

[amanda6978]

Hi, I was diagonsed last month with IC. I feel like IC is controling my life. I've been in realy bad pain for 5 months. My uro put me on lots of pain pills, viscare, and bladder treatments. Nothing right now seems to help if anyone has any sugestions please let me know. I know how you feel about changing your whole diet. It's very hard. I'm to the point now I don't even want to eat, but if I don't eat I get sick form the pain pills.

[marisa]

That's a fear of mine. My fiance has been great but how can he want to be with me when I have so many problems as of now. We're getting married in may and I just hope that I have IC somewhat in control. Have you noticed visits at the gyno flare it up??? When I went to the ultra sound Monday I've had pain ever since.

[Ginny]

If you GYN is treating you, how were you diagnosed?
I would also suggest you seeing a Urologist. I am hoping the Elmiron works but it could take some time so seeing a Urologist would be a good idea.
Keep your GYN informed of what the Urologist is doing to show him that you respect his opinions also.
Ginny

[TheMoonandBach]

I understand where you are at on this... I was just diagnosed 2 &1/2 weeks ago, so it has been very hard for me to change my life so much for myself... It has been wierd because I used to ddo everything around the house, but since I started hurting really bad after my first major flareup, I have had to cut back a lot... but yesterday I just got fed up with it, and cleaned the entire house(I live with my husband who is 20 and a male room mate who is 24...the place is ALWAYS a pig sty if I dont do anything). was happy when I got done... but regretted it this morning when I woke up... I hurt really bad. Thank God my dr. understands my pain and prescribed a pain reliever for me... or I dont know what I would do... Anyway, to answer you questions about what you can and cant drink, I find that water, koolaid with light sugar, and a brand of tea called Bigelow makes only herbal, caffine free, tea, and has some great flavors to help you got to sleep like chamomile. There are also some very tasty ones like raspberry, blueberry, and somthing called Vanillia Madagascar tea... one of my favorites. And I can drink Barq's rootbeer if I let it lose the carbination. anyway, sorry I answer in such long rants, but I like having people to talk to who knows what I am going through. Thanks for listening to me rant... hope you can expand your diet some time soon... --Heather