Newly Diagnosed and scared

[tspun]

Hello everyone...
This site is so good for us that are newly diagnosed and need of some support! I started to have symptoms in February...on and off antibiotics..back and forth to the doctor, I really was starting to think the doctors thought I was crazy. Finally on Monday, my urologist told me he believes its probably IC. Now I'm scared and unsure what my next step is.
I've been reading alot of your posts on Elmiron, is this usually the first med they try? Also..do alot of you have trouble getting enough sleep? I probably average 4 hours a night do to my frequency. Any suggestions?
I see my urologist again on December 27th. I'm trying to read up on IC and be prepared for the next step to come...

[GriffsMommy]

:welcome: to the IC network! I'm sorry you have IC but glad you found us. I would suggest that you look at the patient handbook, there is a link at the top of the page. There is tons of info there about the different meds that are used to treat IC. I used to get up quite a bit at night but not as much as it seems you are. Elavil is usually considered a first line treatment and you might want to ask your uro about it. For some it helps with the frequency and urgency and it can help with the nerve pain associated with IC. It's an antidepressant but in low doses it can really help IC specialists and it can also make you sleepy so it can help people sleep better at night. Elmiron is also a common treatment and you can ask your uro about rescue instills which is a soothing medicine the put into your bladder with a cath and it helps a lot of people. I would also suggest that you take a look at the diet also located in the patient handbook. Food can make a big difference in your symptoms if you cut out the acidic foods that you eat. I hope you start to feel better soon. :grouphug:

[SharonA]

Hello and :welcome: to the ICN...

Christine has already mentioned this but the IC Diet is very important. Take the time to check it out. http://www.ic-network.com/handbook/diet.html Many here have found good relief from their symptoms by eliminating foods/drinks that can cause their bladders problems. The Diet is one thing you can do before your doctor appointment that could help reduce your symptoms including frequency.

[Sally939]

I just want to say Hi also. This site has been great for me. Not everyone is effected by the diet but, I sure am. I would deffinatly give it a good solid try. For me it took the diet and meds to feel better. So try the diet and then with your doctor's advice add the meds. Give the diet a few good months. I think educating your self on ic is really important. Just know that with time and treatment most of us feel better. Good Luck.

[lisabar36]

Hi, I had a hard time sleeping also, the elavil has helped with that so much! I am also on Elmiron which takes time to work but my first week on the Elavil I noticed I was sleeping almost all night and it was helping with the frequency. Something to talk to your doc about, good luck at your appointment!!

[lan]

Hi Tspun - I was diagnosed in March 2007 and my doctor recommended that I try Elavil first. Elavil helps lesson my freq and pain. It does not make me feel 100% but it does make me feel somewhat better. You will learn alot from the helpful and kind people here. I hope that you will be feeling better soon. Linda

[leelee88]

Hello and :welcome:
I think you have already gotten some really great advice..

[karen10]

I sure agree the diet is worth a try! It really helped with my urgency and frequency. The Heparin bladder instillations help with my pain. So far no meds, just trying the Desert Harvest aloe and CystoProtek, and so far this is working for me. Everyone responds differently, so you just have to try different things to see what works for you. Good luck! :smile tee

[tspun]

Thank you all so very much for your support and advise, you people are amazing! I am going to start reading up on the IC diet..this is really going to be life changing for me :) but I'm ready to feel better.
I have to admit I was feeling sorry for myself before I came across this site, bless your hearts..you have made a difference for me.

Tracy

[cindydi]

WELCOME! You will find some very supportive people here. We've all been where you are now. All I can say is with treatment, things will get better. I use Atarax which also helps me sleep through the night.

LOL

Cindy

Thank you all so very much for your support and advise, you people are amazing! I am going to start reading up on the IC diet..this is really going to be life changing for me :) but I'm ready to feel better.
I have to admit I was feeling sorry for myself before I came across this site, bless your hearts..you have made a difference for me.

Tracy