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.
I had severe endometriosis and recently had a hysterectomy after having several scopes and one laparotomy. I had major complications after the laparotomy-internal bleeding, and after hysto- wound opened and MRSA. After I healed from hysto I continued to have severe pain and I started having to urinate all day and night. GYN did test putting acid in my bladder(hurt so much I can't do it again!) and diagnosed me w/ IC. He refered me to Uro, and he wants me to have bladder test. Is it the same thing or what?? SO CONFUSED! Also Uro says pain might be from surgeries but that doesn't explain the frequency and severe pain when I eat someting I'm supposed to. PLEASE HELP
deleted_user
I don't believe that they should have to do any more tests on you. There are others that are possible (bladder scope via catheter) and some less invassive ones. It sounds like you have IC and I would be stubborn with the Uro. Remember that you can always say no to something that they want to do to YOUR body. I refused all invasive tests, but already I know that I have IC. I am also trying to work with it naturally rather than with perscription.
deleted_user
I also had a lot of the same problems as you, and I also had a hysterectomy. After I started healing(4 weeks), I knew something was still wrong. I was still in pain! In the hospital, I noticed I had to pee constantly. I also believe you have IC. You should try and see if you can see a Uro-gyn in your area. Mine has made all the difference for me. I have my IC pretty much under control. I did have a flare in mid Sept.-Oct., but I believe this is because it is the start of allergy season. I know my IC has an allergy connection, and this flare proved it to me. (I also had a flare in mid March-April of this year-which is the start of allergy season) My body does not react well to pollen in the air, so we will see how I do this coming season. My doctor said if I flare again during prime allergy season, then we will come to the conclusion that the Elmiron probably is not working for me. It's hard to know if I am throwing away $300 a month or not. I guess I will stay on it until then and see what happens! You need some medication now to get you out of pain. I take Urispas when I am in pain; I also keep Urelle on hand if the pain is really bad. Good luck to you!
deleted_user
The test I had was they fill your bladder with water and then look inside with a scope it's uncomfortale be it only take a few minutes. I hope you feel better
deleted_user
I have IC as well. Send me a message & I can give you more insight on what I have done for it. But the pain you are feeling is very normal (unfortunatly) with IC.
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