IC with No Pain?! PLEASE HELP

[unknwncondition]

I have lived with my problem for as long as I can remember and have seen numerous doctors who have been completely stumped by my symptoms. My question lies here: is it possible to have IC and NOT have any pain? I questioned my doctor about this when he scheduled me for a pressure test of the bladder on my first visit and he said it was possible. (His name is Dr. Yenari from Sarasota, FL.)

Here are the things I have been dealing with for the past 7 to 10 years: urinating 15 to 20 times a day in very small increments, except when I try and urinate it can take anywhere from thirty seconds (on good days) to thirty minutes (on bad days, which are much more frequent than good days) to get anything to come out. Again, I do NOT have any pain, and I never have tat I an remember. At night I generally sleep about four to five hours before I am up every hour to use the restroom.

Now, this has prevented me from having any kind of a normal life because it makes me so self-conscious of how long it takes for me to urinate that I cannot go at all in any kind of a social setting (I have been confined to my own house for many years). I do have very, very painful menstrual cycles (I have been on birth control since first getting my period at 14 because of the irregularity of my cycles, but I can no longer take it because it makes me extremely nauseous). All in all, I feel like a man who has prostate enlargement (my symptoms are identical) only I'm female so I don't have a prostate!

I had my urethra widened in 2002 by a urologist in Tallahassee, FL, and my problems got worse after this. I am afraid of having anything done by a doctor that does not understand the emotional pain this problem has caused. All I want to be able to do is sit down and use the restroom like a normal person (I don't even care if I still have to go 20 times a day, I just want to be able to GO when I need to, instead of waiting until my bladder "feels" like it--I personalize my bladder by saying it has an "attitude"). Please help me, because I do not know where to turn. Doctors that specialize in female urinary problems are few and far between here, and because I am a college student, I do not exactly have the money to find different specialists around the country. I feel like I am losing my mind. I have read so much literature about different urinary problems, but it is all contradictory. Nothing addressed what would make me unable to go as I described above. I want to go places, I want to be able to get on planes and travel to different countries and help people. I want to be able to have a job in an office where I do not have to leave and travel to an anonymous place to use the bathroom because I am afraid of people making fun of me for how long I always have to stay in the bathroom to get my bladder to cooperate with my mind. Please help me. I do not know anywhere else to turn, and I am at my wit's end.

Connie

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Yes, it is possible to have IC and not have pain. There are people on the board in your same circumstance. Yet, urgency and/or frequency alone can be tormenting, and create havoc in a person's life. It is obviously lowering the quality of your life, so it is important. I would highly recommend you sit down and read Dr. Moldwin's book. It will give you a grasp on IC and other corresponding conditions. My experience was reading it once wasn't enough go back over as if it were a reference book, and you might see something you missed during the first read or look at something from a different perspective. (i.e. Over five years ago, the first time I read his book pelvic floor dysfunction didn't stand out as something that fit my situation, then later it made since that was one of main problems.) Education and knowledge makes puts us in a position of power, so we can advocate and move forward appropriately with medical decisions.

I wish you the very best.

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Link to Dr. Moldwin’s book:
The Interstitial Cystitis Survival Guide' by Robert Moldwin, MD (2000)
http://icnshop.com/cgi-bin/ustorekee...-ICandOAB.html

[HollyS]

I have never had pain either and I have been diagnosed with IC with cystoscopy and hydro. I also sleep through the night, but I have horrible urgency and feel like I have to pee all the time.

[jlp]

As for back as i can remember, i have had to go to the restroom..all the time! I did not have the pain. I finally decided to count the number of times i went, and it was 20! I do not go to bed till 1 or 2 am and was getting up at 4 or 5 to go to the restroom. I do not know how many gyo's i told this to over the years, and when it looked like "another" kidney stone,( the first kidney stone was in 1994) i was sent to a Uro, who did a x ray and foung a small stone, but he said that did not explain the frequency, so he did the Cyst/ Hydro, and it showed the Ic! This was 3 months ago.It helped to have a URO who knew about IC, because i had seen many Uro's in the past,and was told the frequency was just caused by FMS or Lupus!
I know that you have come to the right place to find answers!