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.

375 Members

1,889 Posts

0 Online

kilinki 12/30/2010

Hello everyone! I am newly diagnosed and confused. I am in my mid forties and have had urgency/frequency issues for at least 7 years. I always ignored these symptoms as I had no pain along with them. Fortunately, I've only been sufferring pain for two months. It started with pain while urinating and bladder pain. A new gyno (who has experience with IC) diagnosed me only by my explaining my symptoms! I asked her about having a cystoscopy but she said that those are done under general anesthetic and she wanted to do a potassium sensitivity test instead. She had me take a written quiz (supplied by the pharmaceutical company which produces Elmiron) and said that I scored highly for IC. I'd like to rule out anything 'worse' . I don't know what to think. I am concerned about the fact that my pain is only on my right side above the pubic bone and sometimes runs down the inside of my thigh to my knee.My MAIN question to all of you is If this is a spasm or IC, shouldn't I be feeling the pain throughout the bladder? I really don't have pain while urinating very often. Sorry for the lengthy post!

deleted_user 12/30/2010

Hi kilinki, I'm pretty new to this myself, but I have read that IC pain can radiate down the thigh. In fact the symptoms page on the elmiron web site lists it.

I had a cystoscopy done a few weeks ago and the Dr. saw no signs of IC. Still, the test isn't always conclusive. It's frustrating to try to get answers. I have a follow up appointment with my Dr. next week so we'll see. Meanwhile I have discovered a direct link between anxiety and my bladder pain - as if I squeeze everything when I am anxious.

Anyway, I am really sorry you are in pain and hope you find relief and answers soon.

E

deleted_user 12/30/2010

The potassium test is painful and humiliating if you suffer from IC. Your bladder will begin to burn and cramp immediately. You should go see a urologist instead. I also have pain that goes into my leg. My doctor says it's because the nerves in that area are all connected. My urologist did the cystoscopy right in his office while I was wide awake. A little discomfort but not bad. IC often feels like a constant UTI..with me anyways. You should really go see a urologist who specialized in IC. The IC website (sorry I don't remember the website address) can help you to locate on in your area. Good luck and I hope you feel better soon! Happy New Year!

deleted_user 12/31/2010

GO SEE A UROLOGIST!!! The potassium test is very painful if you do have IC. When I had my cystoscopy, I was put completely under, and when i woke up I was in a lot of pain for about a day and a half. I didn't know for a long time that what I had was IC because I only had pain on my left side (where your ovary would be). I still only have ain on that side (when I have pain). My uro told me that he didn't know why I had pain on the left side, but that many women have pain in odd areas "like down their thighs" and no one seems to know why. I really really would seek the opinion of a uro though!! They know the most about the bladder!! Good luck! I hope you get answers!

kilinki 12/31/2010

Thanks so much for your responses! My urine cultures came back today and once again (third time) they were normal with low bacterial count. I still want the cystoscopy!! I have an appointment with a urologist in one month. I've read that he has a lot of experience with IC. I've had fibromyalgia and IBS for twelve years but they never really caused me any problems. None I couldn't ignore anyway. I've been under more stress than usual these past few months. I know that this adds to all of these conditions.

deleted_user 12/31/2010

My urine cultures always come back normal too, but my cystoscopy showed that I def. have IC!! I even have pictures from it, that I am so glad that I have, so I can take them with me if I have to see another doctor.

Join the Conversation