Another new diagnosis

[quiltz]

Hi all,
I'm another newby here ...also diagnosed on 12/24 (merry christmas). I've had horrible nights since then, I'm thinking it might be stress induced? I sleep with a heating pad on and some nights maybe 3 hours good sleep. I'm already being treated for chronic pain with spinal stenosis so have been dosing with Vicodin and Ultram which I always have on hand but don't want to take too much. I have been doing a good job with watching my diet ...though I do find it hard since I haven't got any "stock" of the right things in my cabinets.

My doc's office will be open again tomorrow .... so I will go there first thing and give them a urine specimine to check for UTI .... figured I should be safe on that issue.

Oh I've also been using the pyridium generics 200mg ...with very little relief.

I'm reallllly tired ..... and tired of feeling rotten .... thanks for listening! :help:!! Quiltz

[emilyrose197377]

:welcome: To the Icn. I am sorry you are feeling rotten. I hope you feel better soon. ICN has alot of info about Ic and support from other members. If you have any questions feel free to ask.

[quiltz]

Thanks Emily Rose for the welcome! It makes me feel a little hopeful when I see all the nice folks who have made it to a fairly normal existance. I can't live like this for long! I'm running around the site, trying to absorb as much info as I can.

Well at least I have a name for all the symptoms I've had for so long .... and I see I'm not alone with having a gyn who answered my questions about my pain by telling me not to focus on it! Whew ... good thing I'm not a violent woman! :mad:

Liz

:welcome: To the Icn. I am sorry you are feeling rotten. I hope you feel better soon. ICN has alot of info about Ic and support from other members. If you have any questions feel free to ask.

[kadi]

Hi Liz,
Welcome! Just a note to say hello & encourage you. I had a very hard time with IC in the beginning & remember very well those sleepless nights. I have since found a combination of treatments that work for me & just had a completely painfree Christmas holiday with my family. Most nights I can sleep well & while I still have IC & short flares, I do not have that miserable 24/7 pain & pressure I had when I first got sick.

It takes some trial & error, but most of us do very well after working with a good doctor & finding out which treatments work for us. From your gynecologist's answer to you, you probably want a second or third opinion. (I also encountered some amazingly insensitive doctors before I found some good ones!)

Wishing you better days in 2006!

[quiltz]

Hi Kadi,
Thanks for the warm welcome!

Hardest thing about being this way for a holiday weekend ...is not making everyone else miserable! I tried so hard not to ruin the time for my Sweetie ....and all he had to say was that he was so relieved that I finally got a diagnosis ... and now we could do something to make me feel better! Am I a lucky gal or what!!! :kissing: Liz

Hi Liz,
Welcome! Just a note to say hello & encourage you. I had a very hard time with IC in the beginning & remember very well those sleepless nights. I have since found a combination of treatments that work for me & just had a completely painfree Christmas holiday with my family. Most nights I can sleep well & while I still have IC & short flares, I do not have that miserable 24/7 pain & pressure I had when I first got sick.

It takes some trial & error, but most of us do very well after working with a good doctor & finding out which treatments work for us. From your gynecologist's answer to you, you probably want a second or third opinion. (I also encountered some amazingly insensitive doctors before I found some good ones!)

Wishing you better days in 2006!

[SharonA]

:welcome: Indeed you are very fortunate. It is very important, with this conddition, that your special someone supports you. I don't know what I would do if my husband did not support and help me through everything. I can count on him to understand that sometimes I just don't feel well enough to do some things that I used to do. Your sweetie is right. Now that you know what you have, you can begin to find the meds and/or treatments that will help. :)

[VickiB]

Welcome to ICN, Liz.

It's great that you have such a supportive husband! My husband considers this IC as something 'we' have too, and that concept makes it so much easier to deal with! -Though it does bug me sometimes when he asks if I should really be eating that.....? :)

Like Sharon, I also found a combination of treatments and am so much better now than when first diagnosed. Most of us do get there, and you will too!

And as for that gyn, the only thing I see not to focus on is their advice! This is a real problem, and those of us who suffer with it know that ignoring it doesn't do a lick of good! I think the best way to beat this thing is to learn all you can, both in treatment options and self-help tricks. This site is a wonderful place to do just that!

Again, welcome!

Vicki

[quiltz]

Hi all,
After the nightmare Christmas weekend .... plus urologist office closed yesterday(monday), I finally got the gal on the phone. She said no openings for my doctor til Thursday! So .... I just got my sweetie to take me over and I went in and requested a urinalysis ... and BINGO....there's an infection. Someone wrote me a script for an antibiotic and I also requested one for diflucan ....since I usually suffer from vaginal infection as a result of the Levaquin.
Now my question is, does anyone else have very frequent infections? Is this because of the existing sore bladder or am I just "lucky". Now that I look back, I can see that maybe some of my big infections weren't really infections after all but flare-ups. No way for me to tell what's going on except for exquisite pain.

I'm so looking forward to a night's sleep without tears and the trusty heating pad!

thanks for being here for me!! Liz

PS:You may remember I got my diagnosis Friday and urine was clean at that time .....go figure! :hmm:

[emilyrose197377]

I have frequent uti and kidney infections from self cathing the last 4 months I have had 5 infections. I have another infection now.

[quiltz]

That's awful EmilyRose, I feel terrible for complaining ... Isn't there something they can do for you to prevent it? Seems like the only time I'm clear is when I have a procedure ... since they medicate me so I don't get the infection! Liz

I have frequent uti and kidney infections from self cathing the last 4 months I have had 5 infections. I have another infection now.

[emilyrose197377]

I am going in for interstim surgery on Jan 2nd my chance to urinate on my own so I don't have to self cath anymore and get infections. I will see if the interstim helps then no more infections.

[hoping4acure]

Hi and :welcome:

You will find something that will work for you.

Remember we are here for you to answer anything you want.


:grouphug:

[NatashaM]

Hello!
My name is Natasha and I am a healthy 22 year old, besides the fact that for the past 7 months I have only had one month without the feeling of complete burning and discomfort in my bladder. Take my advice because I have not had a serious flare up since the day after thanksgiving since I have figured out how to control my IC. First off, have you tried taking a bath during a flare up? It may only feel good while you are in there, but at least you have temporary relief. That was my only relief (an hour after work spent in the bath) until I began realizing that I could do something about the pain and discomfort. Now when I feel a flare up coming on I take steps to make sure it is gone by the next morning!!! I am happier than ever b/c I know what it is like to want to cut out your own bladder and step on it and now I appreciate life more than ever. To prevent flare-ups, I drink a glass of red wine (like cabernet or merlot) everyday. My IC is stressed induced so I also do yoga twice or three times a week. I also take Cysta Q, which contains quercetin. This natural dietary supplement is found in red wine and it really works!! There is also a supplement on the IC network website that contains quercetin, called Bladder Q so order either of the two asap b/c there are NO side effects. Now, this is important. The best thing that you can do for yourself is to realize that you will not always be feeling this way, even if it is hard to believe. Negative thoughts feed the pain and in the worst of the flare ups after there had been weeks of pain I had decided that I would never have children because you can't care for them if you're on the pot all day. So I just stay calm when I feel the symptoms coming on. Then I take an extra dietary supplement, drink an extra glass of wine or green tea if i'm at work and I do yoga breathing until I can get home and do yoga (purchase a tape if you aren't into yoga, Brian Kest is good). One popular yoga breath is when you breathe only through your nose and push out the air while flexing your diaphram. Do it fast for app. 45 times and then take a couple of deep breaths! I swear by these prevention methods and even though it has only been a month and 5 days without a serious flare up, there have been at least 3 times when I can feel a flare up coming on and I can truly stop it in its tracks!!!!!!!!

Hi all,
I'm another newby here ...also diagnosed on 12/24 (merry christmas). I've had horrible nights since then, I'm thinking it might be stress induced? I sleep with a heating pad on and some nights maybe 3 hours good sleep. I'm already being treated for chronic pain with spinal stenosis so have been dosing with Vicodin and Ultram which I always have on hand but don't want to take too much. I have been doing a good job with watching my diet ...though I do find it hard since I haven't got any "stock" of the right things in my cabinets.

My doc's office will be open again tomorrow .... so I will go there first thing and give them a urine specimine to check for UTI .... figured I should be safe on that issue.

Oh I've also been using the pyridium generics 200mg ...with very little relief.

I'm reallllly tired ..... and tired of feeling rotten .... thanks for listening! :help:!! Quiltz

[quiltz]

Hi Natasha,
Thanks for answering!! I will take some of your advice ....though I had heard that red wine is a no no on the IC diet. I do understand that everyone responds differently. I guess I just have to plow through all these things and find my own comfort level. I had been interested in the Quercitin supplement and that's my next order. It's good to hear from you to know there is light at the end of the tunnel ...so to speak! Thanks. Liz :)

[QUOTE=NatashaM]Hello!
My name is Natasha and I am a healthy 22 year old, besides the fact that for the past 7 months I have only had one month without the feeling of complete burning and discomfort in my bladder. Take my advice because I have not had a serious flare up since the day after thanksgiving since I have figured out how to control my IC.

[mayray518]

When I finally got diagnosed with IC in 1993 they would always test me for infections even tho they knew it was IC. There was never bacteria in my urine. I started taking elmiron when it came out together with elavil and, after a few months, I thought "This isnt working either." I was going to participate in a study at the Univ. of MD and they tested my urine and the doc called and said "Do you realize you have an infection also." I could tell no difference since the IC was so bad. So after cipro cleared the infection up, I realized that the elavil and elmiron had started to kick in and within 6 months I was feeling normal again. I guess my point here is to always get a test just to make sure you are not carrying an infection also.

[Katrina]

:welcome: quilts
:welcome: Natasha!
Wine is one that has things in it most IC patients cannot tollerate and something in it that may help. Finding what your triggers are is hard so unless it is something you really love it may be better to test that one later after you get some relief.
http://www.icnshop.com/ there are IC friendly things such as alternatives, soaps, foods, books, and many other things. It is a good place to take a look at.
http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies
http://www.ic-network.com/icchef/ online IC cookbook

http://www.ic-network.com/handbook/

[marsi4]

Red wine is very acidic, and any alcohol should be avoided. I can't believe that red wine could possibly help in fighting off a flare. For most people with IC it would cause a flare. I would be reluctant to drink alcohol.

Marsi4

[Baba Yaga]

Hi, I am a newbie too, diagnosed officially 1/3/06. I had a laparoscopy and cystoscopy that day. My symptoms first appeared 14 months ago -- I was 41. I thought it was ovarian pain initially, but my symproms sort of evolved. In the spring a urologist put me on Detrol. It helped my pain right away but it gave me headaches. Then I tried oxytrol patches and couldn't tolerate them either. However in the summer I did quite well, probably from the warm weather, but also possibly from the vitamin D we get from the sun.
I have depression, and kidney stones and breast cancer in my past.

I have spent the last 2-3 days on line learning about IC and looking over this ICN forum. It is painful and enraging to see how others have suffered and have been treated, but the success stories and advice instill (hee hee) hope.

Katrina, thank you for the work you are doing for others. I don't know how you people function in this pain. Hopefully soon, or eventually, I will be in better shape to give to others the way so many of you are.