interstatial cystitis pllllllllllllease helllllllllllp!!!!!!!!

Discussion in 'General Health & Wellness' started by sadgirl1950, Aug 14, 2004.

  1. sadgirl1950

    sadgirl1950 New Member

    i need someone to talk to that has this im going crazy
  2. kat2002

    kat2002 New Member

    Do you mean interstitial cystitis? Apparently no one here has that since you have not gotten replies to your posts. You could try doing a search on yahoo for a message board related to the condition. Good luck!

  3. joyfully

    joyfully New Member

    Get to a urologist. you are probably going to have to get 6 or 7 treatments of DMSO plus some steroid mixed into it. They have to catherize you and put this stuff up into your bladder. Then you immediately taste garlic and sour milk combination in your mouth. You lay there for about 15 minutes with this stuff inside of you. I can't remember the interval between treatments, but it takes several days before you don't wreak of sour milk garlic smell.

    Cut out ALL oranges and orange juice, they will do you in every time.

    Did they put that camera thing up inside of your bladder to diagnose the interstitial cystitis? Get to a different Dr. if you can't get results with the one you are seeing. The interstitial cystitis is quite painful. Joyfully
    [This Message was Edited on 08/15/2004]
  4. joyfully

    joyfully New Member

    mary124 posted some information on the chit chat site. try talking to her-
    [This Message was Edited on 08/19/2004]
  5. sadgirl1950

    sadgirl1950 New Member

    thanks for the reply i have been diagnosed and am on elmoron i am afaid to eat when i do i get flairs is your ic gone? wish mine would go
  6. EllenComstock

    EllenComstock New Member

    and can understand your frustration. I just went to a new urologist and he gave me some sample of Prielipp that takes the acid out of food. I saw a list of foods that can irritate the bladder and there were quite a few. You take it with your meal. I just started them so can't say how they work yet. You can get them without a prescription.

  7. joyfully

    joyfully New Member

    I never took either of the drugs mentioned. I always had to do the full course of DMSO with steroids in my bladder. I dreaded those treatments! But-they did work.

    I don't know if i have it again right now or not. I can get it from anesthetic and all of the injections after surgery. Too soon to tell. Avoid oranges like the plague!
  8. mary124

    mary124 New Member

    Sadgirl1950, I also have I.C. not a fun thing to have. There is a variety of medications to try. (I'm taking Elmiron -which takes up to 6 months to work) and Ditropan-XL (just started taking this, so don't know if it helps me yet).The diet is also very important, You need to find yourself a urologist. Treatment varies, I have mostly tried DMSO, which doesn't do much for me now, so I have started doing a hydrodistention - usually have one every 6-8 months. If you need anything else, let me know, I'm usually around, but don't post too much.


  9. jeanann

    jeanann New Member

    IC in January I have not had a flare for over a year and I have no food restrictions....I give my success to the Lord and to taking certain supplements....

    I drink regular oranges....grapefruit and tomatoes.....and today my baldder is better than ever....

    it took about 2 years to fix however I did it...and I am grateful...not saying I could not go into relapse I will tell you STRESS is the big one....must stay away from stress....

    Will pray for you

    jean ann
  10. TexasGram

    TexasGram New Member

    Just wanted you to know that you are not alone. I have taken Elmeron for 4 years. it has helped more than any other treatment. I even had those silver nitrate treatments........Best of luck to you.
  11. chngthnmtoME

    chngthnmtoME New Member

    I've had IC for 21 years, though it was misdiagnosed as "nervousness" (because of my frequent urination), "nothing wrong with you!", and "you don't have it, you're very lucky, just learn to hold it longer." Finally about a month ago it was correctly diagnosed. I have it very severely, my bladder walls are oozing blood and I've lost some bladder capacity, and my doc put me on twice the normal dosage of Elmiron. I am having the weekly DMSO, heparin, steroid/or lidocaine installations, but they are NOT helping- they have made it worse and caused a flare-up of Fibro pain and pelvic pain that I hadn't had in years. We don't know what to do. I also take Detrol LA which made a big difference for the first month (only had to go once or twice at night), but doesn't work anymore. I'm waiting for the doc to come back to town to talk to her about switching to something else as she originally suggested.

    It is very painful, very difficult for others to understand (like everything else we suffer), and keeps you chained to a bathroom for most of your life. Sorry to hear you have it and are suffering. I hope you get proper treatment and the support of those around you.
  12. Jennifer

    Jennifer New Member

    Hi sadgirl, I have had I.C. for 20 yrs. I got it right after my hestorectomy. My bladdar dropped and I was almost house bouond for 7 yrs. I could put up with the frequent pee stops, but the pain was like having a baby everyday. I would have to hold myself to get to the kitchen to get a pain pill for it. I didn*t want to live. After yrs of dictor visits they found out I have endometrios along with I.C. and bad colon and 2 rectm operations. So everything hurts. Anyway they finally came out with elmiron and Praise God it worked in the first week. I took all the garlic treatments and stretching the bladdar ( dr. said I had a little girl*s bladdar) I peed every 15 minutes and never really emptied out. But this is what I want you all to know. The nurse there at the urologist*s office told me to get corn silk tea bags at the health store and drink tea 3 times a day. I do this soon as I feel a flar comming on. I have no insurance now so have to cut way back on meds. I am doing much better. I am off elmiron now, keep it on hand, and the tea! Please try it Sisters of I.C. If the health store does not have it they will order it for you. Only $4.95 a box. Let me hear from you who try it. I love passing on something that really works. I have R.A and fibro and low thyroid and restless leg syndrom among other things. Let*s help each other if and when we can. Take care Sherry
  13. lonestar26

    lonestar26 New Member

    I have been on Detrol La for years now, and have leakage at times. The problem is it gets worse if I am constipated, and the pain is deadly. I , too like jennifer have had to hold myself and barely make it to the bathroom from both pain and urgency. Mine has calmed down lately as I started takening Reglan for "slow stomach". Not much seratoin in my system left from immune virus and stress. Stress is big factor. I beleive I may have this too but they are so busy trying to dx other things they haven't paid much attention to this one. It's miserable for sure and I hope you stay on your Doc's rearend to help you. you will be in my Prayers.