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Interstitial Cystitis

Posted , 11 users are following.

lorraine48045
lorraine48045

I developed excruciating burning in my bladder within the last two weeks. After ruling out a bladder infection, and after doing much Internet research, my symptoms (burning 24/7) seem to match interstitial cystitis. Has anyone received this diagnosis? It appears that the condition is chronic and very very difficult to treat, and that there are no proven treatment. There are treatments but they are pretty extreme (you can Google them under treating Interstitial Cystitis.) 

So what a low blow. Can anyone out there help me? I see a urologist for the first time tomorrow. Can anyone tell me what I am in for to cure this horrible burning?

1 like, 32 replies

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  • Ladyjanis
    Ladyjanis lorraine48045

    Posted

    Hello. I have interstitial cystitis or IC. My main symptom is vaginal burning. Feels like it's on fire. I thought I had a raging vaginal infection. My gynecologist sent me to a urologist who dilated my bladder and found I have IC. HE put me on Elmiron and Uribel. Finally I have relief. Eating certain foods triggers a flare up. And having food allergies cause flare ups, as well as stress. My allergy Doctor tested me for food allergies. I'm allergic to oranges, onions, garlic and chocolate among other things. Unbelievable. If I eat any of those foods I get the vaginal burning. Coffee and tea are bad for IC patients. I have gotten relief with Elmiron - very expensive, But only thing that works. So watching trigger foods and controlling stress is what helps me most. I take the Uribel when I get a flare up. Hope they find what is causing your problem and you get some relief. 
    • lorraine48045
      lorraine48045 Ladyjanis

      Posted

      Dear Ladyjanis,

      Thank you for responding. So few people write about IC, I feel alone. Glad you are there. My IC started two weeks ago. I believe it was a reaction to the Omnipak I drank for a cat scan for chronic gastritis. But I'm not sure. Anyhow, before today, I felt like jumping off a cliff. Constant burning extreme 24/7. I couldn't handle it. Then I went to the Head of Urology at Long Beach Memorial (California) and he gave me a drug called Myrbetriz (Mirabegron) extended release tablets 25 mg, once daily. Free samples so I did not have to pay. And after 4-5 hours almost NO PAIN OR URGE TO URINATE ("frequency" ). On Monday, he instructed me to bring in first urine of the morning so it won't be diluted. He will send the urine out to a lab for a "FISH" Test. Then after that, he will do a cystoscopy to look inside the bladder. WAS YOUR CYSTOSCOPY PAINFUL? He said it would be done with a numbing agent. I will ask him about "Elmiron." How do you control stress? I have never been able to conquer my stress or meditate. I can't do yoga as it upsets my GERD from my hiatal hernia. I will also ask him about Uribel. But I gotta tell you this Myrbetriq (Mirabegron) is a miracle. In just one day, I feel that I don't have to jump of a cliff. I only drink water now. Do you like your urologist and where are you located? What is his name? Mine is Stephen Hightower, MD. Great doc, nice good bedside manner, etc. IC is difficult to cure. I guess you just have to manage it. I started out with irritable bladder in my 30's and wake up after 5 hours of sleep to pee. I can never get past the 5 hour mark. Do you sleep through the night or do you wake up to pee? I also have a history of UTI's. I believe the alkaline diet I am on will be good for the IC. Hope to stay in touch. I would like to hear from you everytime something goes wrong, please.

    • lee12629
      lee12629 Ladyjanis

      Posted

      Id see a gynocoligist too. Lots of women have Vaginal atrophy. Lots on google about it.
    • Ladyjanis
      Ladyjanis

      Posted

      Lorraine,

      You are not alone. Many of us suffer with this. I'm happy to share with you. I'm in Louisville, KY. My doctor is Dr. John Hubbard. The one thing I do when I realize I'm stressed is to close my eyes and inhale deeply through my nose all the way down to my belly, hold 4 seconds and slowly release the breath through my mouth. I do this 3 times. Then I try to center myself. If the burning is there. And it usually is, I take a Uribel. It only takes 15 or 20 minutes to work. Sometimes when I think I have gastritis it's really the IC kicking up. Hard to tell sometimes. My cystoscope was not painful. They put me in a sort of twilight sleep so I wasn't aware it was happening. I did have a burning sensation after I got home but they gave me pain meds and Uribel. I do sleep all night. Only if something wakes me will I get up to pee. I feel like I don't empty my bladder all the way sometimes and have to sit a little longer to get more out. That is aggravating. I am glad the drug they gave you works. I will have to ask about it. My bladder lining has little pin pricks on it and is very red and irritated from the IC and acidic foods. The elmiron repairs the lining somehow. I know if I eat one of the foods I'm allergic to I will pay for it later. There is also an over the counter Med you can take before you eat that helps some people. It's called calcium glycerophosphate. Your doctor will tell you if you should try it.

    • lorraine48045
      lorraine48045 Ladyjanis

      Posted

      Wow Lady J,

      Great tips here and names of meds. I'll keep u posted on 2-12 when I have cystoscopy. Thanks so much

  • Anna777
    Anna777 lorraine48045

    Posted

    Hello Lorraine,

    I replied several days ago, but apparently my post was removed.  It may have been because I mentioned a brand name.  I have IC as well.  I found that avoiding acidic foods (citrus, tomatoes, carbonated beverages, etc) helps a lot.  I couldn't give up coffee so I found a non-acid coffee on line and it works great for me.  Also, for vaginal burning, try a diaper rash ointment. The one I use, which I can't mention by name is diaper rash paste maximum strength. The zinc oxide in the formula creates a protective barrier.  It's available in the US, not sure about the UK.  Meditation helps too, since stress seems to make it worse.

    Good luck!

    • evelyn39594
      evelyn39594 Anna777

      Posted

      I also had vaginal burning, My Dr prescribed Premarin cream . and it is much better now.I am past menopause so my needs might be different to yours, Ask your Dr.
  • Kablois
    Kablois lorraine48045

    Posted

    Just a word of advice - I have had IC for 8 years and have used the patient forum on the IC-network website, particularly at the onset of my illness. There is a wealth of information on there and as this is a complex illness, you need to arm yourself with as much info as possible. At the beginning I thought my life was over, but with time and perseverance, trial and error and Elmiron + painkillers when needed, I am pretty well most of the time. Try and keep positive - I know how hard it can be but it really does get better for the vast majority of people.
  • raigan84492
    raigan84492 lorraine48045

    Posted

    I've had interstitial cystitis for a few years if this is your diagnosis, way to go is slowly increase exercise, makes the body more durable. Get enough sleep and eat well. May seem stupid and simple but those are the best ways at management for me personally. Some people say no tea(diuretics), chilli, gluten etc, doesn't make a difference for me but perhaps for you. It's a condition that makes you feel like your life is ruined, but if you take it the right way it can turn you into a very strong person smile (gotta be positive). Life can be perfect just about even with devastating pain if you have the right frame of mind. 
    • shirley84100
      shirley84100 raigan84492

      Posted

      Or as they say, it's not what happens to you that matters, it's how you deal with what happens to you that matters.
  • shelliemarie
    shelliemarie lorraine48045

    Posted

    I have a question about Myrbetriq, my doctor gave me this the other day, but I am afraid to take it. A couple years ago a urolisgist gave me another urination frequency medicine called Vesicare, and I was in severe pain all day, because my bladded wanted the urine out, because of inflammation, but the medicine would not let me go as much as my bladder wanted to go, and I just was in agony. Felt so much pressure , but could not go.  Did you have anything like this with the Myrbetriq?  thanks
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