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    I'm a new member and wanted to say hello. The doctor think I have Interstitial Cystitis. I'm interested in knowing how other people's pain started, exactly how the pain feels, how often it comes/goes and what medications tend to help. My pain is so bad at times, I'm in bed curled up, sweating from the pain, etc.. It makes me feel like something really bad is happening inside, but the doctors can't find anything wrong and say it's ICN. I don't know. I had a Hysterectomy 2 years ago and haven't had any pain or problems from that. I thought it was my bladder, not tests show nothing. I'm very concerned and scared. Hopefully I will find some relief coming to this site and finding out if this is in fact what I have and getting support from others who may have the same symtoms as mine. Thanks all!

  • #2
    Hi , nice to meet you ! Im sorry your going through this , alot of us have been where you are now . When my IC first started it was because I had surgery for kidney stones , and it was more like an on going UTI then actual pain , then it went into remission for 3 yrs. When it re-reared its ugly head after an operation to remove ovarian cysts, I was just like you curled up in the fetal position thinking OMG something must be terribly wrong , the doctors mustve have left something inside of me ! And yet NOTHING was wrong , they couldnt figure it out . This went on for years , my pain came and went but had become more steady til it was just all the time . My pain worsened after sex , bowel movements , standing too long , car rides , pretty much anything . My pain was low in my pelvis , throbbing and steady yet also stabbing and sharp . My one doctor said the best explanation of it that he ever heard was when I told him " It feels like a lightning storm going on in my pelvis and vagina " I also have severe nerve damage in my vagina and rectum area . When my pain started it wasnt exactly a burning type pain , which threw doctors off the trail of it being a Uro problem.
    What you can do right now is check out the diet and try omiting some of what your see on there , its trial and era . I am lucky that I am not effected by many foods , however , alot of IC'ers are and it can help alot by taking out some irritating drinks and foods . Medication wise standard IC meds include:Elmiron ( only FDA med approved for IC , helps rebuild the GAG layer in your bladder altho the doc's dk why ) , Elavil which is an antidepressant used for chronic pain , Urelle - Cystex- Pyridium etc are all Bladder anagelics which can help w the burning , spasms etc , Narcotic pain relivers such as vicodin , percocet , oxycotin etc . You also have your standard IC treatments Bladder Instills , which is a combo solution put directly into your bladder by quick catheterization , Hydro-distension which is done under general anthesia , where kind of same as an instill but they also see how many cc's of fluid your bladder can hold , some people get a few months relief from this . However you will find EVERY IC patient is different from the next , what might help one person might not help the next , which is very frustrating to us and the medical community . ALSO , just because they didnt " see " anything wrong w your bladder does not mean that you do not have what they call PAINFUL BLADDER SYNDROME or PBS rather than IC , which really is the same thing w out the lesions or glomurations on your bladder walls , but it feels the same .
    I know thats alot of info to throw at you , if you have any questions you can private message me , this site is GREAT for people listening and helping , I dont know what I would have done if I had not found it a few years ago. I know it is scary and lonely , but you arent alone . Please please trust yourself and your body , if you know something is not right keep pushing doctors until they figure it out ! And if your current doctors arent handling it , then trust me they arent worth seeing , move on . It took me 6 years to get a diagnosis for my severe pain , it was exhausting BUT it was worth the fight just to find out that I was right , something was wrong and I wasnt crazy , and then I had a starting point for treatment . Try seeing a Urogynocologist , they special in both uro and gyno issues including PBS , IC , PFD ( pelvic floor dysfuntion , which can also cause pelvic pain ) these docs are usually pretty good at figuring things out , at least they were the only ones who took me seriously about my pain . I hope you find answers and start to feel better


    Lauren

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    • #3
      to the IC Network. I know you'll find a lot of information and support here.


      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

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      • #4
        Hi VLT, welcome to the ICN!

        What Lauren said about one IC patient being different from the next is very true so I imagine you'll get a variety of answers to your questions.

        For me, it all began following a string of nasty UTIs. All of a sudden the UTI symptoms remained (frequency, urgency, tenderness and burning with urination) but urinalysis kept coming back clear of infection. As time progressed a few other symptoms joined in on the fun, like sharp pains and an inability to pee even though it feels like I'm going to burst. Doctors kept telling me there was nothing wrong with me.

        As for how often it comes/ goes, this has changed over the years. When it first began it was maybe once or twice a month. Then it started happening in streaks that would last for weeks or months at a time with a week or two off in between. That was when I was at my worst, -a horrible, horrible time! Soon after diagnosis and treatment I steadily became better & better to where today IC rarely affects my life anymore.

        The medications that helped me were Elmiron, amitriptyline and hydroxyzine. (keep in mind that results vary from one person to the next as far as treatments go) What I feel really helped me the most was the IC diet and that still remains my main defense to keep the symptoms at bay today.

        It's rough in the beginning. Have your doctors started you on any sort of treatment plan? I hope so. Most of us do get better following diagnosis, treatment, and making a few changes, so hang in there!

        Vicki
        "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

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        • #5
          first like everyone said you need to get on the ic diet. but you need to be checked for ic so they can start a treatment plan. my ic started with a uti one after another till it was unbearable. the uro suspected ic and sure enough thats what it was. i am on the dmso treatments it took about the 3 or4 instill till i got relief. but every icer is different and you have to work with your uro to get to the bottom of it all . i wish you the best keep in touch we all understand here.
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          • #6
            I figured I would give you another welcome as well. I happen to be a male, but I was still diagnosed with IC back in 1997. None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! I did notice you just mentioned pain and not anything about frequency and/or urgency. Of course, it is not really too unsual to be scared. (or feel alone, lost, confused, and/or depressed) At least, I felt lost for a while. OK. I do know you have gotten some responses by now.

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            • #7
              IC for almost a year

              I've had IC for almost a year, and was diagnosed last November. It was horrible in the beginning. i had terrible pressure all day, but it was much worse in the morning. Frequency was bad as well. I felt like there was a knife in my vagina, and bled almost every time I urinated, with pain at the end of urination. For many months I worked and spent the rest of the time in bed, in pain every time I moved. I was up many times a night, and was nauseated by the pain. I was horribly sore, and had a hard time sitting and driving. I didn't understand what it meant when people described flares, because I was in pain all the time.

              I started Elmiron at the end of November. In January I started hydroxyzine. I noticed a decrease in pain about 2 months ago. I also had horrible itching and swelling in my vagina which hydroxyzine really improved. I was a diet coke addict for years, and drank very little water. The last cup of coffee and diet coke i had was at least 6 months ago. I drink nothing but water now and follow the IC diet, which has been a big help.

              I was terrified. I was never an athlete or outdoors person, but I had a life, a husband, and amazing career, and feared it was all over. I can say now that I am healing. I have symptoms daily, but they are nothing compared to what i had 6 months ago. Most days I can wait 2 hours in between bathroom visits. Sometimes 3 or 4 hours. I still have pain after urination but it has lessened considerably. This past weekend for the first time in months, I was active, shopped, cleaned and did everything I used to do.

              I will say this: I really really had to force myself to work a few months ago. I worked about a 6.5 hour day, and my boss was very understanding about this. I can now work 7.5 hours. The biggest improvement has been in the horrible pressure and burning i felt, I think the ICdiet and elmiron are responsible for this. I also had to make myself leave the house on the weekends. Even if it was only for a couple of hours. it was very hard and painful, but I believed if I didn't maintain some level of activity, I would be disabled. I should also mention that i have a wonderful URO.

              I know it seems dark now, but you will feel better. I am 51, and had no health issues before this. It is still hard some days but i know now that
              I can have most of my life back. I hope you will find something that works for you. God bless!!

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              • #8
                Hi there! My name is Patricia ! I am new to this site but not new to IC . I was officially diagnosed with this in 1997 and suffered with it till around 1999. It is now April 2013 and I have been pretty much symptom free till now ! I thought the IC was gone for good since it has been like 12 years without symptoms ! Is it because I am in menopause that my IC symptoms are returning ? Please advise what I can do ... Thank you

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