Interstitial cystitis diagnosis

Discussion in 'Fibromyalgia Main Forum' started by fastfingers648, Jan 14, 2003.

  1. fastfingers648

    fastfingers648 New Member

    I am going to have a biopsy of bladder to prove IC. Does anyone else have any advice on this and also the bladder distention to help it supposedly? And also do you have it in addition to the fibro, IBS and Raynaud's etc. etc. like I do? Does it feel like yet just one more system that is betraying you? My GI system does not work right either. I can still walk and type, I guess that's a good thing. Anyone else????
  2. Mikie

    Mikie Moderator

    As well as vulvadynia and it has been a very painful experience. I will have to ask her what she is doing as she found a good doc and is doing quite well.

    Love, Mikie
  3. CajunGal

    CajunGal New Member

    Hi, I want to encourage you that you do not have to live with this IC. I was dx'ed with IC Nov. 2001, I was just beside myself when the doctor told me that I would have to live with this problem the rest of my life.. I had the distention done on Jan. 2nd of 2002 The doctor said this would help. It did for only about 3 weeks but not completely.. I went back to him and he wanted to do another distention.. I said no way, and decided to go to the Health food store and talk to the nutritionist there.. Before I could tell her of all the symptoms I was having she was asking me do you have this, do you have that.. and I was saying yes yes yes.. She told me to take Ultra-Mag it is from Source Naturals 400 mg. one in morning and one in the evening. [and it has to be the Magnesium Citrate are it won't work] And to buy some Epsom Salt, take two cups put into my bath water, soak in the water for atleast 20 minutes every night for 6 weeks [this helps to get magnesium into your body quickly] but continue taking the Ultra-Mag. I thought she was crazy but was willing to try anything so I did it. I was amazed because I now have no problem with the IC anymore. I do take my Ultra-Mag everyday to prevent it from coming back..She told me that the muscle around my bladder was spasming and the Magnesium relaxes it so I don't get the pain anymore and I am so happy I do not have to run to the bathroom all night long anylonger.. You can try this too.. It may work for you as it did for me, it is worth a try.. I know it really helped me. Please let me know if you try it.. I also was dx'ed with IBS, Fibro and GI problems.
  4. laurakay

    laurakay New Member

    I was diagnosed with this at age 18 after a long bout with mononucleosis (I still think it is all related somehow.) I was feeling like I had to pee every 15 minutes and then there was nothing but burning and it wasn't an infection. I saw a urologist and had the DMSO treatments for several months every few weeks. I HATED it, but it did help me get better. I have often told people that I would rather go through labor and delivery again than to go through the pain of the IC and treatments. This was almost nine years ago now, and I haven't had to have treatments again. I do have times where I feel it coming on and I will drink only water, no pop, juice or caffeine, and that seems to help. I still go to the bathroom a lot, but I have done that my whole life. A few months ago, I was finally diagnosed with FMS, and the pieces of the IC and the muscle pain, etc, are all starting to fit together. I also have had IBS problems and a multitude of other fun stuff. Incidentally, my mother has had this, too, and the treatments helped her. She didn't think it was that painful, either. It might be worth it in the long run to do it.
    Take care,
  5. Jennifer

    Jennifer New Member

    I have had ICI for 15 yrs. So bad I was at times house bound. I had lots of DMSO treatments and stretching of the bladdar. Worse thing I ever went through. Like I was in labor everyday by noon. Then my uro gave me some new med and told me I would be on it for life. I take Elmiron 100mg 2 times a day suppose to take it 3 times a day but it makes me sleepy. This has been a miracle for me. I have spoken of this on here before. I am happy to help anyone I can on this subject because it*s the worst thing I have ever had to go through for so many yrs I have cried so much over this. Stay well, jennifer
  6. jeanann

    jeanann New Member

    I was diagnosed January 2001. Went on Elmiron, DMSO has done the trick for me. My bladder is better than it has ever been. I drink coffee, eat whatever If want. I dont smoke, drink or do any other drugs. I take vitamines and the IC is tamed.
    Good Luck!!!! Hang in there. Oh decrease stress thats a fbig one.