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IC for 15 years..finally found an understanding dr.

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  • IC for 15 years..finally found an understanding dr.

    I have IC. I didn't know it. I kept getting pain and urgency. Running back and forth to the doctor crying in pain it was so bad. They kept telling me you dont have an can't be in pain. I went to the ER in a different state and begged them..please please dont send me home. I can't deal with this pain. They too said I didn't have an infection, go home. I have never considered suicide, but it had gotten that bad. I went back to the dr in town (I live in MN)...and they said we can't find anything wrong with you...go to Rochester to the Big Mayo Clinic. If you have anything they will find it. I went. I had to stop at the rest stops on the highway on the way there and almost passed out from the pain (which they told me later was a normal reaction..your body gets in so much pain and makes you pass out to deal with it). I went and had the camera thing. They found out my bladder walls were completely gone. The nerve endings were sticking out (hence the pain), and the muscles were exposed..hence the urgency. They told me I had Intercystitial Cystitis. I got with a VERY good urologist that told me she had a protocol for IC patients that seemed to work well. They put me on Oxybutrin, Pyridium, Atarax, Elmiron, and B & O suppositories. It worked....2 or 3 days on and the B&O calmed the bladder down enough to regulate itself back to normal. Then my urologist moved to AZ and I got a new one. He said NO B&O suppostories..he only gave 2 after boxes of 12. We went round and round. I did not want to go back to him...he had NO empathy whatsoever. I went to my primary care physician..I told him my diagnosis..I told him what the other dr had me on that worked. He had no problem giving me everything I needed. I was on the IC network and saw people were having good results with elavil. I told him and he said no problem..we will try it, if it works good, if not and I found something else that people were taking that helped let him know and he would write me a prescription ( I love that man!!!). I added it and only take it when I'm flaring and it helps..makes you real drowsy. I am so blessed to have an understanding doctor as I dealt with so many that made me feel like I was crazy and there was nothing wrong with me. For all you out there that are dealing with the same..I can only say..dont give up. Dont let them tell you there is nothing wrong with you because the UA came back negative. Been there/done that. IC is a painful recurring actual problem. I only wouldn't give up until I got what I needed to handle the disease. I am so lucky that my doctor knows that B&O's work (I only have to do them for like 3 days and my bladder calms down enough and goes back to normal). He knows I am in pain, he knows I'm not a drug seeker which SO many IC patients gets labeled with. He knows what regimine of pills I need to take. I do them for about 3 days and everything resets itself and I am good until the next one comes. I just wanted to tell people out there that have this dibilitating disease that it is real and it is painful and dont let any doctor make you feel that you are crazy and making up the pain and only looking for pain meds. It is SO not that and there are doctors out there that have dealt with IC patients and they know what works and dont please dont give up if you have to search a long time....there are doctors out there that understand and have empathy for IC patients. It just sometimes takes a long time to find one. I thank God everyday for the kind compassionate doctor that believes me and doesn't make me feel like I'm crazy.
    P.S. I bought the microwave heating pad shaped like a triangle and it is a God so much better than an electric heating pad cause its triangle shaped and heats the area that you need. I love it. I wish I could find the company that makes them and let them know how wonderful their product is. Sorry this is so long...but I just wanted to touch anyone out there that just can't find someone that doesn't make them feel like they are crazy and there is nothing wrong with them. It is a is painful...but it can be managed if you find the right doctor that will work with you. Gail

  • #2

    Thank you for sharing that!
    Yes, the docs think I am doctor shopping(I am) and drug seeking (but Im relief seeking! I don't even drink!)
    The hot packs for the microwave have helped and also a very hot tub with feet up on wall, If the water is too deep I get faint, so only enough to cover bottom.
    Good luck to all here


    • #3
      Thank you for sharing your story. I am glad that you have found a Dr to help you with your IC! I hope you continue to improve.

      Link to the patient information, everything from What is IC? to Disability

      American Urological Association Clinical Guideline
      Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom