Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
Does anyone have IC who doesn't have to go to the bathroom all the time? I was just diagnosed after suffering severe pelvic pain and blood in urine (no infection) for last two years. They also found squamous Metaplasia on my bladder....but, I don't have to urinate all the time. I'm not sure if the diagnosis is correct. I also have sciatica from having had over 32 lumbar punctures and I'm wondering if my bladder problems might be from that rather than IC. (I also have fibromyalgia). Can anyone help? What's your experience with IC?
remingtonsmom
IC is such a weird disease no two people have the same symptoms or triggers that set it off. If you can find a uroligist in your area that specializes in IC preferably a Gyno also. It sounds like you have a really sick bladder!
Tom30458
I know I can't say whether or not you truly have IC. OK. I was diagnosed back in 1997. Anyhow, I did not go to see the urologist and complain of pain.(excessive urination) Of course, I have had cystoscopy with hydrodistention done by 2 different urologist by now.(with both stating IC) I don't know how you were diagnosed, but you may want another opinion. Hey! It could that your bladder problems are from lumbar punctures for all I know.(hmmm)(?) Oh! I have never read any posts from an IC'er about squamous metaplasia. In fact, I went and looked it up now. Squamous metaplasia refers to benign non-cancerous change (metaplasia) of (non-squamous) surfacing lining cells (epithelium) to a squamous morphology. OK. There is a change in an IC bladder, but we don't have bladder cancer. Also, I have read some posts about blood in the urine before now. (and pelvic pain) Oh, yeah! Yep.
Monkeymom3
Thank you for your responses. Tom, squamous metaplasia is rare. There is much argument in the medical field regarding these cells and why they arise. However, according to my urologist...when in the bladder...keratinizing squamous metaplasia (which I have)...IS premalignant. The tumor was removed last November and two months later when the bladder was checked the tumor had grown back. It has to be evaluated on an ongoing basis for changes. (As also indicated in the attached article). http://www.ncbi.nlm.nih.gov/m/pubmed/1379440/
ButterCupPrincess
I definitely recommend follow up with a urologist. Preferably female. IC and Fibro do tend to go hand in hand. I have both. I once participated in a focus group for an IC research study. In that group of ladies I definitely saw a wide range of symtoms and each person has their own specific triggers. That being said, I did notice with this group of ladies, and have experienced myself, basically two kinds of flares: spasms with frequent urination versus primarily pain. Stress causes the spasms for me and acidic foods cause the pain and urinary frequency.
danib1234
I was diagnosed with IC 2 years ago, however I only go to the bathroom maybe 3 or 4 times a day. I usually have more pain and I also have blood in my urine. But like in previous comments everybody Is different. Since my doctor has started me on medicine there's sometimes I forget that I have it.
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