Another newbie

[pifcat2000]

I have been recently diagnosed with IC, and I am feeling horrible from the pain and discomfort and constant urinating.

The first medication they gave me was Oxybutynin (sp?), and that was not helpful, now the Dr. want me to try Elavil, but I'm nervous because of the side effects.

Fortunately, I have been on pain medication already for chronic pain, but I only get relief from the IC when I increase the amount. If my pain is this severe on pain meds, I don't know what it would be like if I didn't have anything to take.

I'm having alot of anxiety because of this, and it is affecting my life in a big way.

I have eliminated all foods that could be a possible trigger, and I don't know what to eat. I'm eating primarily brown rice and green veggies plain, no salt or butter or other seasoning.

I've read that alkalizing treatments are supposed to help, but the alkalizing solution I was told about contains apple cider vinegar, so I'm not sure if I should try it.

I saw a website the for 29.95 promised the cure to IC, so I paid the 29.95 to find out that I shouldn't have salt. I already don't use salt and eat low salt foods.

So far the Dr. has not recommended any of the bladder wash treatments, or even a cystoscopy.

I'm taking Artic Cod Liver oil, and aloe vera supplements, but no multivitamin because of the Vit C.

All my life I have never experienced anything like this. I'm trying to have a positive attitude and not think of it as having a disease, but a disorder, and take whatever steps I can to help myself.

I am glad I found this website for support. Any and all suggestions are welcome.

Viola

[mom_in_ma]

Viola,
Welcome! We know just how you feel. Most do find treatments that work for them eventually, but it's hard when you're in the beginning of this process.

[ICNDonna]

The Patient Handbook at http://www.ic-network.com/handbook will help you learn more about interstitial cystitis and the various treatment options available. I know that some people do have some unpleasant side effects from elavil, but others report they have significant relief from small doses.

My husband takes 10 mg nightly for arthritis pain and even that small dose is helpful to him --- with no side effects at all.

I don't know what book told you salt is bad for IC, but the information I have shows salt as usually being okay. I have to limit salt intake due to high blood pressure, but I do use some salt.

Try not to be discouraged. It may take a while to find which treatment options work best for you and which foods and drinks you need to avoid, but most of us do --- and most of us feel good most of the time.

Hang in there! Better days are coming.

Sending warm well wishes,
Donna

[sweetness7104]

Viola,

I was diagnosed with IC last year. It was devastating. I am an athlete and was training for a marathon, and now I can no longer exercise or keep up with my 2 year old son. My doctor's performed 2 cystoscopies, a laparoscopy, bladder distention, 3 bladder instillations, and 10 rounds of pelvic stimulation. These were all done to diagnose IC and rule out other possible causes. I would definitely talk to your doc about a cystoscopy because it's a pretty definitive way to diagnose IC - if you have IC, the doc will likely tell you she sees pinpoint hemorrhages on the lining of your bladder.

I had another bladder instillation yesterday to help calm down the symptoms. I'm currently working with my urologist to possible try interstim therapy, and I'm going to also speak to her about cystolysis (to destroy the nerve endings in my bladder and therefore not feel the pain).

You should also definitely take a look at the diet handbook. I went through it and picked out the things I enjoyed eating, bought the ingredients and it's fairly easy to make some decent meals. I know what you mean though, in the beginning it felt like I couldn't eat anything!

IC is not an easy road and there are ups and downs. I was diagnosed when I was 23 (I'm now 25) and it was a struggle just to get a diagnosis because none of the docs even considered IC because I was so young (it almost always affects those over 40). Hang in there! It just takes a while to find the best treatment for you, but when you do things are far more manageable.

Jessica

[sweetness7104]

Viola,

I forgot to answer your question about Elavil. I am on 50mg of Elavil once a day. I do not have any side effects.

Jessica

[dancemomof2]

:welcome: to the ICN , I also get relief with a small dose of Elavil 20mg and 50mg of Topamax nightly. The diet handbook is a great place to start.

[leelee88]

:welcome:

Elavil, worked great for my pain..I had to quit due to weight gain, but some people do not have any side effects.. If it was not for that I would still be on it.. To me it worked great for the pain and urgency..

[Agape]

I wasn't given Elavil because of Vulvodynia. I don't know if you have this "lovely" symptom of IC or not, but it has helped with that with no obvious side effects. It also helps you get a good nights rest.
I do know what you mean about the diet. I am still being tested to make sure IC is what I have, but have been on the diet for two weeks and still have the feeling there is very little I can eat. I guess I was eating all the wrong foods before. However, I sure miss salads, but have been afraid to try any salad dressing.

[Agape]

Sorry...that is supposed to say I WAS given Elavil. Just can't seem to concentrate anymore on anything but IC.

[pifcat2000]

Well I'm doing alot of research into what role foods play in making a difference. Right now I am focusing on greens such as wheat grass, barley greens, etc.

Is anyone else familiar with this type of natural treatment?

Viola