Do All ICers have Pain?

[Pumpkin65]

undefined Hello Everyone!

I was dignosed with IC just this morning ... though I've had the problem of frequency urination for years. And my doctor recommended this site. And from what I've seen so far, it looks like an awesome. :lmao: ... One which I hope to participate in and perhaps make some friends who understand.
But, since I'm new to all this I do have an important question. Do all ICers have pain? ... because I really don't have any pain when I urinate ... and rarely a little burning. My biggest problem is frequency ... every couple of hours at least and often during the night.... some leakage when I cough or sneeze, but not always. I DO, however, experience pain in my lower adominal region on occasion (every month or so) ... and on a couple of occasions this pain has been severe! :yikes:
My doctor put a bit of potasium in my bladder today to test for IC and I did experience burning then ... She then diagosed me with IC and put me on Elmiron ... which she says I'll only need to take for 6 months ... but I've been reading here that it's for longer than that. Any comments?
Anyhow, the problems of frequency,occasional adominal pain and some urgency ... and the feeling of "not emptying out" sound soooo familar ... but the kind of frequent pain/burning described by many here ... is something, thankfully, I haven't experienced.
So, now I'm wondering? Do all ICers have pain? If so, is it when they urinate or is it adominal pain? How often does this happen? And if this is the case, then am I really a ICer?
Any comments, or replies would be very helpful!! Thanks!!


Pumpkin

[lindy lou]

My sx started as urgency, frequency and pressure. All mild and certainly something I could live with. I asked the uro if this was normal for post-menopausal women or could something be done for me. After some initial tests, he suggested IC and scheduled me for the cys/hydro. I never guessed that I would have IC. It sure didn't sound like the terrible disease so many here talk about. The cys/hydro showed that I did indeed have IC and put me into a horrible 3 week flare with pain 24/7. I couldn't even stand up to make breakfast or sleep for more than 2 hours. Finally, I got some relief from the meds and the Elavil let me sleep for 4 or 5 hours at a stretch. Now, 6 weeks later I can say that I am back to the uncomfortable but live with stage I had before the cys/hydro. I am even starting to try out some foods from the middle column of the IC diet. So far, so good. There is hope that you may never get as bad as some of the ICers who post here.

Linda

[Sarojini]

:welcome: to the ICN! :)

No, not all ICers have pain as a symptoms. Some have frequency, some have urgency, some have both frequency and urgency. Some have pain with all of that. Some have ONLY pain, no freq/urge! IC is a strange bird in that it is so different for everyone.

When mine started, all I had was frequency and urgency... later, it progressed to pain too. However, again, don't freak out -- most people don't progress at all and the symptoms stay pretty constant.

The quality of the pain can be different for everyone too -- some burn like crazy when they pee, others have abdominal pain, vaginal pain, back pain... it just depends. :)

[SharonA]

:hi: :welcome: So sorry you were diagnosed having IC. Glad your uro told you about us. No, not everyone has the pain/burning associated with IC. Some only have the frequency/urgency part of it. This is a very individualistic disease with varying symptoms. :)

[Katrina]

:hi: :welcome: To the ICN! My symptoms are a lot like yours.....only occassionally do I have the others. I say THANK YOU! to your uro for telling you about us:) If Elmiron helps you you may be on it forever.....it can take about 4-6 months to start working....or even longer....I know of one person who stuck with it for a full 2 years....and not untill after 2 years did it start working. For me it took about 4 months...I was soooo lucky! :) I hope you get all the help you need. let us know if there is anything we ca do for you!!!

[vm]

I am one who does not have any pain with my IC. I have had horrible discomfort and that annoying constant awareness of the bladder. My flares feel like a bad UTI.

About the Elmiron, most specialists will tell you the Elmiron only helps while you are taking it ---- which means most of us who take it view it as a long term thing. :)

[ICNDonna]

:welcome:

I'm glad you found this site. You'll find a lot of information and support here.

Not everyone has pain with IC. I do occasionally have flares, but most of the time I feel good and live a normal life. I do urinate more frequently than most other people I know, however.

You'll want to read the information in the Patient Handbook at http://www.ic-network.com/handbook

Elmiron can take up to six months or longer to be effective --- and most people who take it continue taking it.

Warm welcoming hugs,
Donna

[XoChelsey03Xo]

I don't have pain when I use the restroom either. Although I do itch a lot in that area. For years I thought I was always getting yeast infections. Now I know that other ICers have itching as well. It's really annoying. Chelsey

[Pumpkin65]

Wow! Thank you ALL so much for replying to my inquiry ... as I learn more about this condition, I can see that it affects all of us in a different manner. It just helps to know that I am not alone ... and that there is help. I ordered the "Survival Kit" from here and am looking forward to being a part of this community. :-) And I do have more questions ... LOL .. but will ask them in another message. As for the Elmiron, I'm taking it as instructed ... and while it doesn't seem to have helped too much ... yet ... with frequency (my biggest problem) ... it does seem to make me "empty out" better ... so that after I pee, I don't feel like there's still more urine in there that I can't get rid of. While my Doc told me I would only be on Elmiron for 6 months, I appreciate your thoughts here ... and am assuming that I'll be on it for the longterm ... I will be sure to ask my Doc about it. And, I am hopeful that it will help in a few months. Again, thanks to all! ...and feel free to be in touch.

Hugs,

Pumpkin

[Imustpee]

I have pain all the time but I am so used to it and can mostly ignore it. I do not have burning when I pee. The worst symptom for me is it always feels like my bladder is so full it's about ready to explode.

[XoChelsey03Xo]

Recently I have just started getting a very bad burning feeling when I pee. This has never happened to me before. At least when I've had a few burning periods they normally go away. This has been happening for several days now. I hope my uro appt. on Wed. doesn't get cancelled due to Hurricane Jeanne. I really need to start some medication for my IC. Chelsey