PDA

View Full Version : not diagnosed but having pain


redmama
11-19-2007, 01:52 AM
Can I have IC without the "ulcers"? I went to a urologist a couple of weeks ago. At my first appointment he asked a lot of questions and took a urine sample to rule out UTI. At that appt. he seemed to believe it was IC and gave me the diet list and two prescriptions...elmiron and vesicare. Then he scheduled another appt for a cytoscopy. The cytoscopy did not find any ulcers, although I was watching and it seemed awfully quick to me. I also had a CT scan to rule out kidney stones, of which there weren't any. The CT scan did show a teratoma on one of my ovaries and the urologist said the pressure from that might be causing my symptoms; the urgency, the pain, the frequency. I go to my gyno next week for an ultrasound to determine if the teratoma can be removed laproscopically or if more invasive surgery will be needed.
I guess I am asking if I can have IC without the ulcers or can the teratoma cause the symptoms? I had a very, very bad day yesterday and can only attribute it to a cup of yogurt I ate Saturday afternoon. ( I abandoned the diet when the urologist said he had changed his mind on the IC after the cytoscopy.) I was almost ready to go to the emergency room the pain was so bad yesterday. I took tylenol and drank tons of water. That is all I drink now, with an occasional glass of milk. I am so tired of water! I feel better this morning, so far.
As restricting as the diet was, I felt relieved to have a diagnosis. Now I am back in limbo. I don't know if the teratoma is the root of my problems. I don't know if I have early IC....I have had symptoms for years but my GP treated it like a UTI, with antibiotics. I know citric acid affects me and evidently something in yogurt now...I used to eat yogurt everyday and didn't notice a correlation. It's just so frustrating to feel bad, to fear what I eat may cause the extreme pain, to fear relations with my husband because the next day I will suffer...it's just so frustrating not knowing.
By the way, I couldn't tell any difference with the elmiron...of course I was only on it a couple of weeks, but the vesicare is wonderful. I could actually go a couple of hours sometimes without a bathroom trip. The urologist told me to discontinue the medicines since he is convinced it is the teratoma, but one day without the vesicare convinced me that it was saving my sanity.

ICNDonna
11-19-2007, 04:38 AM
Yes, you can have IC without having ulcers. There are more IC patients without ulcers than those who have them.

You'll want to read the information in the Patient Handbook (link is at the top of this page) and put yourself on an IC diet.

I hope you get some answers soon.

Sending welcoming hugs,
Donna

leelee88
11-19-2007, 05:48 AM
I agree with Donna about the Ulcers.I have a confirmed case of IC and I do not have ulcers.

And alot of times an office cysto will not comfirm an IC dx.. There have been quite a few people here on the board that has had one done and it did not show IC, but went on to have a cysto/hydro under anesthesia and had a comfirmed case. Also another way to have a confirmed case would be to have a biopsy and that could show whether you have mass cells or not.

But alot of UROs have been known to Dxs IC just on symptoms alone. If you feel you really have IC then I would suggest you go for a second opinion with a URO who specializes in IC..
From what you are discribing your symptoms sound alot like IC..I would do alot more research and read the Patient handbook. There is a list of Drs in there also that specialize in IC, you might want to see if there is any in your state that is near you.
I hope you find the answers you are looking for. Please keep us updated on your results..