New to IC

[Auranc8]

Hello All! I am a mother of two shcool age children and preschool teacher. I enjoy many things in life. In the past 6 weeks I have had a major life change dealing with the symptoms of IC. My doctor hasn't officially diagnosed me with it, but is treating me for it. I hope that you can help me understand and be sure I have this based on your experiences.

I had UTI symptoms but test after test came back negative.
My other symptoms include:
cramping/pain in uterus and lower abdomen
mild burning
some pain in sides/back

The symptoms that I haven't see associated with IC but came on exactly when the IC symptoms did are:
easily fatigued
Nauseas if exert too much energy (even just a bit of yard work)
Overwhelming feeling all over of exhaustion (usually cry when this occurs)

I had a cystoscopy and hydrodistention a week and 1/2 ago. Frequency is mostly gone. I am now experiencing pain in my bladder when my muscles are releasing (in order to release the urine). I believe this to be due to the surgery. They did take a biopsy at that time as well.

I am on Elmiron (started 1 week ago) and understand that the medication takes up to 3 months to work. Is that true?

Thanks for your time.

Aura

[ICNDonna]

:welcome: to the IC Network.

Pain/discomfort can cause extreme fatigue. Elmiron can take up to six months or more to become effective. Have you started an IC diet? If not, I strongly recommend giving it a try. You'll find food lists by clicking on the link in my signature below.

Sending warm well wishes,
Donna

[dyno]

Hi,

Welcome to the ICN. I agree with Donna, give the diet a try it really helps a lot of us. Also watch what you are drinking, that can be a real trigger including water that is too acidic or has a lot of minerals in it. I hope you are doing better soon.

[Auranc8]

Thanks for the tips. I'm reading the diet list as I eat 3 chocolate mint cookies. Funny how that works. It is easy for me to want to settle for junk food when not feeling well. I will try this diet.

[shawnster]

Some other thoughts . . .

o 1 tsp of baking soda in a glass of water really helps me for the burning
o I do take prelief before I eat and I think that may help me from having a food flare
o Like Donna said, I also am on the IC diet. I think it is helping but then again, I'm scared to death to even try any food on the caution list.
o I'm on Cystoprotek instead of Elmiron, but it's too early to tell if it works
o If I'm having a really bad day, I use 1 or 2 tabs of AZO. I don't know what I'd do without it
o Massage has really helped me to relax and be more optimistic

Surprised your doctor didn't put you on the low dosage of Elavil at nighttime. It seems like a lot of people are taking it. My doctor put me on and I do think it helps some although makes me way sleepy.

And finally, I totally understand where you're coming from. Alot of your symptoms is where I started and the exhaustion, crying, and depression were the worst. I'm still at the beginning but things are getting better. I know that I can't do as much as I used to do and around 6pm I'm down in my La Fuma chair with the heating pad. Bu I think if you can get some of the symptoms under control and stay positive then you'll feel better. I had to finally go on an anti-depressant to get out from under the exhaustion and crying. It does offer relief.

Hope some of this helps.

[bubbe1]

Hi Auranc,
I also am new to IC(diagnosed today), and am just starting to read and learn.
I just wanted to say that I too, have had a lot of nausea and extreme fatigue since the onset of the IC symptoms. It had not occured to me that it could be caused by the pain and maybe the stress of this condition.
I have been pretty good about diet because I also have GERD, but I am going to try the IC diet and see how I do. I hope that works for you too.
Good luck!
Bubbe1

[Auranc8]

shawnster, I'll keep in mind your baking soda idea. The less medication the better. I'm already on 2 antidepressants (which I've read could have a reaction with the Elavil). I am going for my post-op appointment next Wednesday. Reading this forum has given me lots of questions to ask her.

Bubbe1, knowing you and shawnster experience the nausea and fatigue is helpful. I think if I do too much then I get more nauseas. I've never wanted to resrtrict myself from foods, but knowing they could ease the discomfort, pain and fatigue I'll try anything! Good news is that milk and bread are on the list. Two of my favorites. I'm going to have to wean off the coffee and chocolate. Those are favorites as well.
Take Care!

Aura