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constant urge that never goes away !

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    Mothergoose
    ICN Member

  • Mothergoose
    replied
    I too have lots of food allergies, so I have a more restricted diet than just IC, is isn't optional for me as eating these things make my lips, tongue, throat swell, I wheeze and cough etc.

    I have to carry an epi pen with me all the time. Even just something touching mt tongue will cause an reaction. I am pretty good at tasting things in food so I almost never eat more than one bit of an offending food. Also I have learned that if I take 2 benadryl as soon as I know I ate something or start to react, it will greatly lesson the severity of my reaction.

    I truly don't know if it bothers my bladder because of taking the antihistamine right away.

    It is hard to do but avoiding IC irritants and food allergies is so worth it to me, I just do it. Of course I have always had to food allergies so it is just a way of life for me I never have been able to eat the spices, herbs or seasonings.

    To begin with as I kid I used to just get itchy after eating offending foods, then I got hives and itching, then it changed to chest pain. Chest pain with lips, tongue, throat swelling, I wheeze and cough as well.

    The more you're exposed to things you are allergic too the worse your reaction can get.

    I wonder if benadryl cream would help with the itching, it is for itching from allergic reactions.

    Good Luck MG Read those labels

    Leave a comment:

  • nonni
    ICN Member

  • nonni
    replied
    treatments

    Thanks for the info about the treatments. Don't want to go that route. I am having a problem giving up coffee.... Trying to wean myself off a little each day. Many things seem more irritating like Vitamins, C in particular, and some spices really get to me.
    QUESTION PLEASE: I really need to know if anyone suffers severe skin itching before, during or after a flare?? I seem to almost every time. I know it is due to eating something that I am allergic too and it also irritates my bladder. My bladder problems seem to be all food related. And as I have many food allergies also...well, looks like I am on this involuntary strict diet forever and it is trial and error on some things.

    Leave a comment:

  • MaryS
    ICN Member

  • MaryS
    replied
    I had 9 dmso treatments and it did NOT help me. The last treatment I suffered severe side effects. I came home and after using the bathroom I then took a hot shower and suddenly I had severe stomach cramping, nausea, dizzyness, then my arms and legs went numb and then i passed out. I told the uro and she became defensive and said no way it was from dmso. I said i never ever had this happen to me before in my life. i did a search on here and found several women had similar reactions. This happened to me, it doesnt mean it will happen to you. I am sure this a weird freak thing. I do believe it somehow got into my system. I dont want to scare you but justed wanted to tell you my experience. Some people are helped with this treatment.

    Leave a comment:


  • Nal
    replied
    Thanks. I'm trying. Does anyone have luck with DMSO treatments?

    Leave a comment:

  • nonni
    ICN Member

  • nonni
    replied
    Meds help me. I understand your frustration though. Newly diagnosed here. But I know how difficult it is. I quess the diet is the best thing to help ourselves.

    Leave a comment:


  • Nal
    replied
    You And i are exactly alike!! It's the worst thing ever. Nothing ever ever works for me other thN it may die down from time to time. I hope you find something that helps

    Leave a comment:

  • SandraCT
    ICN Member

  • SandraCT
    replied
    The symptoms you describe are my biggest symptoms too. Constant urge to urinate and burning. The neurontin I take and pain meds do help a bit. My flow is very weak and next to none though and I leak too. After living with this for over 13 years, I can't remember what normal was like so I guess I'm learning to adapt to this. It's not easy and I feel your pain. Hope you can get some relief soon.

    Leave a comment:

  • curlycue
    ICN Member

  • curlycue
    replied
    urgency

    You know what really helped me was Toviaz 4mg it took the edge off,

    Leave a comment:

  • hope4eva
    ICN Member

  • hope4eva
    replied
    thanks alot im goin 2 stop drinking coffee & its a challenge 2 say the least im also gonna eliminate all acid / vitamin c & see if i feel better ! this is driving me crazy ! im hoping i can still tolerate coffee after i feel better lol i really just need meds 2 stop the constant urge & burning doc gave me pyridum helpd sum but not really & i want somthin else cuz thats not a long term med well thanks again bye

    Leave a comment:

  • nottoc4
    ICN Member

  • nottoc4
    replied
    I agree with MG....you need to cut out the coffee and let the bladder heal up.
    Then you can try low acid coffee. I actually can now drink decaf with no problems but I gave up all coffee for 3 months in the beginning to heal up.
    It's hard to do but so worth it.Feeling like I had to pee all the time drove me crazy.

    Leave a comment:

  • Mothergoose
    ICN Member

  • Mothergoose
    replied
    I forgot to say the diet is hard but well worth it.

    The thing is it is an all or nothing kind of thing, cut out the coffee and everything else for at least a month and then see how you bladder feels.

    The coffee still irritates, so even though you cut out other foods, you may not see a difference till the coffee is gone too.

    Leave a comment:

  • Mothergoose
    ICN Member

  • Mothergoose
    replied
    I too had this, I was told to double void, pee wait a few min go again, if need too get up walk around void again, it did help some.

    While waiting for diagnoses, most of us our bladders look normal, with reg cysto, they often need to fill bladder with fliud to see IC.

    I find AZO otc helps with this feeling, I would ask you doc about tring this in the mean time, you may get a bit of relief.

    MG

    Leave a comment:

  • kadi
    Support Leader

  • kadi
    replied
    Yes, I felt like that in the beginning. I was very very sick, needing to void 60x a day, completely unable to sleep, function at all. My days now are usually good I work fulltime, exercise when I'm not too tired from work, go to church, wear jeans every day just because I can, and even travel. Please know that the way you feel before you get your treatment plan together is not how you have to feel the rest of your life. Also know that the vast majority of IC patients do find relief and go back to their lives.... (They just don't post here much because they're too busy, which is a great thing!)
    Wishing you better days soon,

    Leave a comment:

  • earthlady
    ICN Member

  • earthlady
    replied
    At one time I felt like you do now. My initial beginning flare was four months long before I was diagnosed and my symptoms came and went while trying different medications and supplements. I've been in remission now for a good while with only slight frequency at night so yes it can get better and it can improve. Don't lose hope. Coffee, tea and wine were my worst enemies and my symptoms didn't resolve much until I eliminated all three for at least a month or more.

    Leave a comment:

  • Toto
    ICN Member

  • Toto
    replied
    I do feel as you do. I go to Physical Therapy because it was determined that I have pelvic issues. The muscles in and around the area are tight because of IC, stress, childbirth, posture, etc... So the muscles affect the nerves, therefore the nerves produce feelings such as burning, itching and discomfort in the surrounding areas (stomach, vaginal area, pelvic region). I always feel I have to pee and am currently doing "bladder training" to help with these symptoms. My PT said I have to adjust my bladder because for so long I've training myself to go pee at the slightest feeling of having to pee, even though many times hardly any pee comes out. So I'm on a 1 1/2 hour voiding schedule. This is REALLY hard but I did manage to do it for one day and was shocked. I was very uncomfortable but was actually able to do it. I was told if a flare comes I can go pee but that otherwise I should retrain my brain and bladder.

    Also, I am on a liquid schedule. I drink 2 to 4 oz. of liquid per hour. I was drinking hardly anything before and it was making my pee more concentrated, therefore causing a burning uncomfortable sensation in my urethra and bladder. I have no conglomerations in my bladder (had the cysto).

    The reason I share my treatment is in case it can help you or anyone else for that matter. I hate the feeling of having to pee all the time. Makes me nuts!

    Leave a comment:

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