Deana

[Deana]

Hi my name is Deana and I have been recently diagnosed with IC.. I don't know whether I'm relieved that I have a diagnoses or scared out of my wits.
I was first put on ditropan when the urologist was not sure why I had
bladder pressure/pain, frequency, and urgency but no infection. 5 days after starting the ditropan I was in the emergency room with urinary retention. by the way it took the on-call doctor to figure it out and catheritize me to relieve the severe pain. Since that thanksgiving day in the hospital, I've had a potassiam test that I was able to feel some burning. This they said confirmed that I had IC. I also had a cystoscopy, but my new urinologist didn't use that diagnoses because she said that since I had a catheter in me bor 4 days, that this could have made my bladder irritated. I've had 1 symtom free week since my diagnoses but now I am feeling pressure and frequency again and it scares me... I've been on elmiron and elavil for almost 1 month. What can I do or expect from my body on a day to day basis? What helps for the bladder pressure and urinary frequency? Help I need a friend and lots of help with this!!!! :help:

[Tmbrtiger]

I also have a lot of frequency and bladder pressure. My urologist had tried me Detrol LA to no avail. He just today put me on elmiron, but has given me nothing else as far as dealing with pain and discomfort. My creed has been "pee often, pee freely"...lol. As far as myself, I will have periods of time when the IC bothers me so badly I'm doubled over in pain and other times when I don't notice anything but the frequency and urgency (well, and pain if I try to hold it!). I have unknowingly been dealing with this for about a year, but have just in the past month been told what it was. I can relate to the fear whole-heartedly! But as I have learned just today...we're not alone! Hang in there and keep your chin up, hun! As I would normally say myself and as I was told earlier today by someone else...take each day one at a time!

[Dixiefireball]

:welcome: to the icn family i'm glad you found us here you will find lots of support many caring people who understands.
have you started the ic diet yet? this could help a lot of your systoms www.ic-network.com/handbook
your on the right track with elimron don't give up on it it could take up to six mths to a year to work but when it starts working its all worth it.
I however couldn't take the elimron and had to do the heparin cocktail treatments in stead.
it does the same as elimron but more stronger and goes into the bladder so no nasty stomach upsets.
may doctor do dmso or cocktail treatments to help kick in the elimron.
I hope all goes well for you please keep us updated on how your doing we do care
sending you hugs and prayers
Rhonda

[kelly McC]

Hello and welcome,
you will a lot of support and friends here. you have a right to have your pain treated !
Here is a link to the handbook http://www.ic-network.com/handbook/mdlocate.html it has a wealth of knowledge. have you tried the diet yet ? It can be helpful there is information on it in the handbook. There are many treatments available such as elmiron ,pyridium pyridium plus, instills into bladder and many more... you can look through the handbook. You can try ice packs. heating patches, heating pads. remember the elmiron can take up to 6 months to see results in the meantime if you need pain control you can copy info from the handbook I suggest a journal for pain,voids, symptoms, and taking it with you. If your doctor wont work with you some Mds will if not a second opinion maybe be helpful. There is a patients pain rights you can take a copy with you as well. there also is a md locator for different area in the handbook
welcome and good luck with your treatment plan,
Kelly

[trytosmile]

:welcome: Deana

You have found a wonderful support system here and you will learn so much from so many great people. I have had IC for 7 years now and just recently found this tool. In just a few short weeks, I've made some great friends and have learned so much. I thought I knew just about all there was to know in the self help category only to discover I've only touched the surface.

Use the handbook so many have recommended, it is my IC bible.

Good luck :grouphug:

[VickiB]

Hi Deana and welcome! Glad to have you with us.

Yes, the Elmiron can take some time to work, so don't give give up on it too soon!

The IC diet has made a tremendous difference with my IC symptoms, and is really worth trying.

As to what to expect, that's a very individual thing! -IC is funny that way! But most of us, with diet, treatments, and assorted tricks, find our way back to living almost normal lives. Hang in there,...you will too!

Big hugs,

Vicki

[Deana]

I thank each one of you for your support. I feel truly blessed to have others who understand and are willing to aid me in my new journey. I wish my family could understand, but that's a hard thing when mom outside looks fine, but inside feels like my world just turned up-side-down. I feel like my bladder controls my life right now. by the way does anyone ever feel more pain on the left side of my pelvic area. I'm thinking that maybe my left ureter that empties the urine into the bladder might be
irritated or spasaming, could this be happening?

[kelly McC]

Its hard to say what pains cause what but I definately would mention it to your gyn or uro.. It may help to print some info in the handbook for your family and friends to read. I also was told forever how good I looked even by my doctors. It frustrating but I always say thank you but what does my outside have to do with inside.... Its hard not to let your bladder control of you but you are your best advocate read and learn everything you can so you can be apart of your treatment plan. glad you found us and hope you get some relief soon,
Huggs,
Kelly