Oregondaisy 2,021 Posted January 30, 2009 Does anyone have this or know anyone who has this? I was diagnosed with this today. It's very painful and I am wondering if there is anything that can be done about it. From what I have read, there is no cure, but there has to be something to make me more comfortable! Share this post Link to post Share on other sites
*susan* 1,709 Posted February 1, 2009 Wow, I have never even heard of it. What is it? Share this post Link to post Share on other sites
Oregondaisy 2,021 Posted February 1, 2009 It's like having a UTI permanently. That's what it feels like. But when you go have a test taken, you don't have a UTI. There is no cure, but they say if you stay away from tomatoes, and citrus fruits (acidy foods) that helps. The lining of the bladder has been compromised from having so many UTIs. Share this post Link to post Share on other sites
rafaelsedap 0 Posted March 27, 2011 Hi I have IC for the last 2 years I konow it is not easy, and it is not due to having too many UTI, I have never had one in my life if you you can contact me at my e mail rafaelsedap@gmail.com I hope you feel better by now! Share this post Link to post Share on other sites
newlifekp 0 Posted March 28, 2011 I also have it (only I also had constant UTI's). My urologist did a cystoscopy last year. It did help, but omg, it hurt more than my lapband surgery! The cystoscopy is where the dr. takes 3 progressively larger tubes and stretches out the urinary tract to ensure the bladder empties completely every time. It only takes about 60 seconds, but ouch! He asked me at my 6-month follow up how I felt - I said good (even though I didn't feel as good as a couple of months before) because I was afraid he would do it again, and I was right. He said he was suprised because most women need to have it done twice to get permanent relief. I know I should have it done again (because I really did feel so much better for about 4-5 months) and I have had a couple of UTI's in the last 4 months, but the constant pressure and uncomfortableness hasn't quite changed my mind yet. AND if I do it again, I am getting pain killers and relaxants first! Share this post Link to post Share on other sites
Losing2Live 0 Posted June 11, 2011 I had this done as well and had to comment about the pain. It was sooooo bad. And peeing after felt like I was being stabbed. I called doctor and the nurse said I was the first person to ever complain of pain after it - WHAT!!!!!!!!!!!!!!!!!!!!!!!!??????????? I have chronic UTI's but my doc has put me on macrobid one per day so I have a constant antibiotic to ward off UTI's - it has helped but I am getting them more often again, so I need to go back and have a cystoscopy again but I made a pact with God I would never do that again...lol...seriously it hurt BADDDDDDDDDDDDD!! Glad I'm not alone. I also have it (only I also had constant UTI's). My urologist did a cystoscopy last year. It did help, but omg, it hurt more than my lapband surgery! The cystoscopy is where the dr. takes 3 progressively larger tubes and stretches out the urinary tract to ensure the bladder empties completely every time. It only takes about 60 seconds, but ouch! He asked me at my 6-month follow up how I felt - I said good (even though I didn't feel as good as a couple of months before) because I was afraid he would do it again, and I was right. He said he was suprised because most women need to have it done twice to get permanent relief. I know I should have it done again (because I really did feel so much better for about 4-5 months) and I have had a couple of UTI's in the last 4 months, but the constant pressure and uncomfortableness hasn't quite changed my mind yet. AND if I do it again, I am getting pain killers and relaxants first! Share this post Link to post Share on other sites
Guest Oregondaisy2 Posted June 13, 2011 My doctor wants to do that too. I've heard it's really painful. I'm afraid to do it. I am in pain a lot though. It sounds really good to be pain free for a few months. Share this post Link to post Share on other sites
JamieNP 20 Posted September 26, 2012 I have IC. Was diagnosed a few years, but I feel like I am having frequent flares for the past year. I also have pelvic floor dysfunction, which goes hand in hand. Physical therapy has helped. I recently had botox injections in my pelvic floor, and the FDA has now approved botox for the bladder. If you think the lapband diet is restrictive, add the IC diet to it! I feel like I can't eat anything! This is a chronic condition. Usually you have "frequent UTIs" that don't grow any bacteria. I have had these for 25 years. So sorry you have this...it sucks!!! Share this post Link to post Share on other sites
Guest Oregondaisy2 Posted September 29, 2012 I've had really good luck with the suggestions in a book called "the better bladder book" It's written by an RN who had IC. she suggests different herbs that helped her . I am taking them, and they have really helped. Share this post Link to post Share on other sites
JamieNP 20 Posted October 9, 2012 I've had really good luck with the suggestions in a book called"the better bladder book" It's written by an RN who had IC. she suggests different herbs that helped her . I am taking them' date=' and they have really helped.[/quote'] I just downloaded that book. I've stuck to the IC diet, and am eating mostly organic foods. I had to talk to my dietician to help me find food ideas, as I am so limited already. It is very challenging! I was at my goal weight, and have since lost 8 lbs more. Share this post Link to post Share on other sites
Guest Oregondaisy2 Posted October 9, 2012 I hope you're able to find the herbs that you need. If you have any problems, let me know. I was able to get someone to make me up a tincture that has several herbs in it. I recently had kidney stone surgery and I thought that would really casue a big flare up, but it didn't. I am sure it's because I am taking those herbs that help the bladder and urinary tract. That book has been a life saver for me. Share this post Link to post Share on other sites