NO PAIN, yet I was diagnosed with IC

**LindaDRI** · 07-05-2007, 01:27 PM

Have just received the IC diagnosis, at the age of 49. Bit of a shock in reading all the symptoms you all have in the various forums. What brought me to the Urologist was getting bladder infections every month for the last 2 years. My gyn was puzzled, so he sent me to the specialist. After the usual cystoscopy and biopsy under anesthesia, reviewed the pictures (petechial hemorrhages) and after all said and done, I'm still having difficulty understanding why I have this condition. I HAVE NO PAIN, I mean none, zero, zip, nada, not even with the bladder infections, just the usual smell in the urine that indicates an infection. So, how an I suppose to figure out if I'm getting better or not? Doctor put me on Elmiron for the next 3 months (diarrhea, nausea, liver problems, hair loss, etc., looking forward to that!) and from reading these forums, I still don't know if it will do any good. My questions are mounting: How long do I take the meds? When can I stop? Will I ever get better? Cured?? I ask the doc, he says "We'll see in 3 months." I can change my diet, take the drugs, do everything I'm suppose to do and still not know if it will do any good. Sorry, I'm a little flustered and I'm venting, but I've been pretty healthy most all my life (minus having kids, which is a WHOLE different issue) and I just don't get this!! Anyone else not having pain with IC?

**Roxie2007** · 07-05-2007, 01:43 PM

HI Linda.....Sorry to hear you have been diagnosed with IC. If you aren't having pain....maybe get a 2nd opinion.....just to make sure the other dr. says it's IC too?
I can see why you are so frustated with this diagnosis and have so many questions!
I'm sure some others will post on this subject.......good luck! Roxie

**shell** · 07-06-2007, 12:08 AM

I was diagnosed with IC over 15 years ago and I've never had pain associated with it. My symptoms are frequency and urgency, which mimic bladder infections but there isn't any bacteria present.

It certainly never hurts to get a second opinion if you aren't convinced of your doctor's diagnosis. Whether it turns out that you have IC or not, it can be extremely frustrating to go through the trial-and-error process of making that determination. In my experience doctors tend to start out trying the least invasive and difficult treatments and work up from there.

Hope you find relief from your frequent infections soon.

**mary124** · 07-06-2007, 02:22 AM

I would certainly get a second opinion if you are not comfortable with your doctors dx with the IC. Being on medications for the rest of your life is not fun or easy, believe us. If you do have IC, yes, Elmiron is the drug of choice, but even though it has all of these side effects not all of us gets them. I have been on it since it has been on the market (1997) and I have not had any that I can remember- well maybe a little upset stomach at first but it went away. If this bothers you, try emptying the capscule in some applesauce or a small glass of water or something. Or even have a small bite of food, even though it says not to eat anything with it. Anyway, I hope you don't have it, but if you do, you are in the right place.

**LindaDRI** · 07-06-2007, 07:05 AM

Originally Posted by shell

I was diagnosed with IC over 15 years ago and I've never had pain associated with it. My symptoms are frequency and urgency, which mimic bladder infections but there isn't any bacteria present.

It certainly never hurts to get a second opinion if you aren't convinced of your doctor's diagnosis. Whether it turns out that you have IC or not, it can be extremely frustrating to go through the trial-and-error process of making that determination. In my experience doctors tend to start out trying the least invasive and difficult treatments and work up from there.

Hope you find relief from your frequent infections soon.

I've had some frequency for the last 5 years, but that was attributed to a dropped bladder, but I've had surgery to fix it, they put it in a netted bag and sewed it up which worked great. My last pregnancy was very difficult, my son was really active and kicked a couple of holes in my uterus. That led to a hysterectomy about 13 years ago (he's 16 now) but I've really had no other problems until the so-called infections started up. Doc says they really were not true infections, even with a high white cell count, just the bladder trying to tell me there was a problem. They actually put me in the hospital in January because an infection had traveled into my kidneys, and they called the ICD (Infectious Disease Control) because they couldn't figure out what the infection was. I can eat anything and do not feel any pain or discomfort of any kind, only when I eat too much which anyone should normally feel. I will try and see what will happen during the next 3 months, but I will call my Doc and ask for second opinion, he is part of a larger Urology group (about 6 other doctors). Thanks for the quick response and support.

**born2swim** · 07-06-2007, 07:36 AM

Originally Posted by LindaDRI

Have just received the IC diagnosis, at the age of 49. Bit of a shock in reading all the symptoms you all have in the various forums. What brought me to the Urologist was getting bladder infections every month for the last 2 years. My gyn was puzzled, so he sent me to the specialist. After the usual cystoscopy and biopsy under anesthesia, reviewed the pictures (petechial hemorrhages) and after all said and done, I'm still having difficulty understanding why I have this condition. I HAVE NO PAIN, I mean none, zero, zip, nada, not even with the bladder infections, just the usual smell in the urine that indicates an infection. So, how an I suppose to figure out if I'm getting better or not? Doctor put me on Elmiron for the next 3 months (diarrhea, nausea, liver problems, hair loss, etc., looking forward to that!) and from reading these forums, I still don't know if it will do any good. My questions are mounting: How long do I take the meds? When can I stop? Will I ever get better? Cured?? I ask the doc, he says "We'll see in 3 months." I can change my diet, take the drugs, do everything I'm suppose to do and still not know if it will do any good. Sorry, I'm a little flustered and I'm venting, but I've been pretty healthy most all my life (minus having kids, which is a WHOLE different issue) and I just don't get this!! Anyone else not having pain with IC?

No pain with my IC, except I do have terrible pain with my periods (which they believe is endometriosis instead based on my description). I was basically told to take Elmiron for the rest of my life. If you take it out of the capsules, it doesn't give most people the GI upset and the hair loss is not as common as you think it is. I asked about the liver enzymes and they just check me once in a while and all is good so far (been on it 3 months). My symptoms are frequency/urgency. Never had an infection in my life.