Should I suspect IC?

**Mair** · 08-26-2005, 05:32 AM

Hi, my uro offered to do a cystoscopy in the hospital and I'm wondering if I should pursue it.

I have a 17 year history of off and on pelvic pain including painful cramping throughout my cycle, pain during intercourse, endometriosis and vulvar vestibulitis. I also have a history of lower back pain and have a gastrointestinal disease.

As for bladder symptoms, as a teen I noticed I urinated more frequently than others even though I had been "a camel" before puberty. It wasn't really a problem, but I did have one boyfriend who wasn't nice in general and got mad at me for having to go to the bathroom so much. In 2001 I started having trouble falling asleep at night because I kept having to get up to use the bathroom. When I stopped drinking cokes, this improved.

In 2002 I got pregnant with my second child and sometimes had to go every 5 minutes at the beginning and end of the pregnancy. This got better for a while after the birth, but when my child was 6 months old I started having to go to the bathroom 17+ times per day. The lower back pain was terrible. I got treated for a UTI, but as you can guess, the symptoms went on for weeks, and there was no UTI. I went to the ER one morning after going to the bathroom 20+ times in a night and they said I had overactive bladder. The meds for overactive bladder didn't help at all.

I have seen 2 urologists, and one of them I have seen several times. Last year he said I had "urethral syndrome" and wasn't emptying my bladder well. The flare ups have continued over the past year, and now I am up all hours of the night because as soon as I urinate, I feel a burning urgency (not painful, just very intense), and I have to get up and try to go again within minutes. The sensation is not in my urethra, but all in my bladder. I do this all night long. I can't ignore the "pangs" in my bladder and go to sleep.

At my visit last week, the uro said I was emptying better than normal, but he is now suspecting interstitial cystitis. He prescribed 10 ambien for the sleeplessness but made it clear that he would only treat the problem that way for a few nights. Should I get the cystoscopy? What is the difference between IC and urethral syndrome? I definitely fit the characteristics of US but don't have the painful bladder associated with IC. I have noticed that caffeine really aggravates my symptoms, and I cannot tolerate coffee at all. Thanks for reading.

**Ginny** · 08-26-2005, 05:40 AM

It does sound to me like you could have IC. There is one way to know for sure. When he does the cystoscopy in the hospital he will also do a hydrodistention and biopsy. That will tell him if it is IC you are dealing with.

Elavil (low dose) has been very helpful for the type of symptoms you have. It is hard to start because it does make you very groggy in the morning. It helps to start very low like 10 milligrams and work up. They usually stop at 50mg for IC patients.

Good luck.
Ginny

**Annie2** · 08-26-2005, 07:32 AM

to the ICN, Mair! You will find this site is full of very valuable information and very caring, supportive people. While only a physician is qualified to diagnose IC, I would agree IC certainly could be the cause of your symptoms. While ICers do share some common symptoms, we do not all have all of the possible IC symptoms. Some have frequency and urgency but no pain, some experience pain without extraordinary frequency and, unfortunately, some do experience frequency, urgency and pain.

I would highly recommend you begin reading and studying the Patient Handbook on this site. You will find it at http://www.ic-network.com/handbook/ While there is not as yet one 100% accurate test for IC, there are two tests that doctors commonly use for diagnosis. The two tests are cystoscopy with hydrodistention, the one your doctor is recommending, and the potassium sensitivity test. You will find descriptions of these tests and MUCH MORE valuable information in the Patient Handbook.

While no one but a physician can give an IC diagnosis, your symptoms plus your diet sensitivity would indicate it is a strong possibility. The only way to know for sure is to go through the testing. If it turns out you do have IC, the sooner you begin treatment the better. There is no one med or treatment that works for all ICers. It usually takes some trial and error and some time to find what works for you, but rest assured most ICers do find what is effective for them and go on to live fairly normal and very active lives.

One thing you can do to help yourself right now is to begin following the full IC diet. You will find info on the diet in the Patient Handbook.

I am sorry you are experiencing these problems. We are all here to help one another and will do our best to help you find answers to any questions you may have.

***Sarojini*** · 08-26-2005, 08:18 AM

I agree that it might be worth it to pursue the cysto/hydro. It sounds to me like it could be IC, and that a lot of things have been ruled out already. Basically, I'd like to see you have the procedure so that you can find out what's really wrong and can get on some medications or treatments that will help you start to feel better VERY soon!

, by the way!

**Babs RN** · 08-26-2005, 08:27 AM

If it were me, I think I would have the hydro--I would much rather know what I am dealing with and the treatment options. It sounds like you have a pretty decent uro.

Hugs

and

,
Barb