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Newly diagnosed and am so confused.

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  • Newly diagnosed and am so confused.

    Hello, I was diagnosed with IC a week ago but I've known for a couple of months I had it. It all started about 2 yrs ago for me. I was using the bathroom alot, sometimes every 15-20 minutes. It became very irritating and I went to see my General Pratice dr. He took a same of my urine thinking it was a UTI, but there were no signs of a UTI. So I just let it go. I don't remember exactly when I started feeling the burning feeling in my pelvic area but I have been seen my several drs. and they all had me feeling like I was losing my mind. I was given several different medications trying to correct the problem, even antidepressant (?????). For a while I actually thought I was imaging what I was feeling, I also thought I was losing my mind. I finally came across a dr. who took my seriously and referred me to a uro. I had my cystoscopy last week and it was a very frightening experience for me b/c I thought I was a perfectly heathly 26 yr old. Finding out I have this condition has been very devasting for me and I am having a hard time coping with the fact that my life will never be the same. I constantly ask myself what did I do wrong in my life to bring this on? My medication ended yesterday and my bladder has been burning more than ever. I have a follow up appt on Wed. and I hope there is something the dr. can give me to ease my pain. I am SO GLAD I found this site b/c trying to explain how I feel to my family is useless. I felt like no one understood what I was going through until I found this site. Reading other peoples stories has made me feel alot better and I no longer feel alone!

  • #2
    Well first of all to the IC network. I'm so happy you found out site. There is a lot of great information here. I don't know if I would have made it through some of my days w/o this site.

    I know how upsetting it is when you are first diagnosed but once you know what the problem is then you can start to treat it. There are so many treatment options out there and so many dr's have so many different approaches. Hopefully your dr will give you something that will help with you pain pretty quickly.

    Until your next appt have you tried using a heating pad. Alot of us here will say it's our best friend. When you're in pain it can really make you feel better. If you're feeling burning you can get AZO which is over the counter and it turns your urine orange. It really helps with the burning. I would also suggest that you up your water intake. The more you drink the more you will go to the bathroom but at least the burning will be less. I hope you feel better soon and I'm so happy that you found us.

    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus


    • #3
      Hey and welcome. You are definitely not alone. I hope your doctor can find a treatment that works for you. There are people who find an effective treatment plan. I am praying for us all and praying for a cure so that we can go back to being normal.


      • #4
        I think in the beginning of learning you have IC is the most frightening time.
        I know it was for me.. I had not even heard the name Interstitial Cystitis..So yes it was very scary, But it does get better maybe not your symptoms right away but at least know what you have been feeling is real is a big step now you just have to learn what works for you..There are so many differant treatments for IC and the way IC works is it effects all of us differant so you will just have to try different things until you find something that works best for you..
        I have found that this site has helped me more than anything it seems the more you can learn about IC the easier it will be to accept this disease..The people here on this site are wonderful and will answer any questions that you may have, well to thier knowledge of course, we even have some nurses on here that have IC and they are alot of support..So try not to be scared and always know you can come here for information or even to vent, scream or cry we dont mind we will just hug you and help you through it
        God bless you! and again welcome..


        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

        Link to Patient Handbook:

        Diet Reference Sheet:

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


        • #5
          Hi and
          When I was first dx with this back in 1992 I like a lot of others never heard of IC- never even heard of this board--until a few years ago infact. The only person I had to lean on was my husband, luckily, he is very understanding and since then has been through a lot of this with me--(IC and my other illnesses).
          Like the others have said, there are treatments that will work for you. Until then your heating pad is your best friend, (watch out, though your husband/boyfriend might get jealous!!- especially if you name it). Good luck and let us know how you are doing.


          • #6

            I'm sorry you got diagnosed with IC. I am young too, 26 y/o, and I'm crushed that I have to deal with this for the rest of my life. I hear about catching it early, getting the right treatment, and following the diet (avoiding individual triggers) will send someone into remission. I pray that I go into remission as well as everyone ever diagnosed with IC. I'm amazed that they don't know more about it, but I hope you have a good urologist who can help you feel better fast!
            [SIZE="1"][B]Be well, Alyssa :hi:[/B]



            • #7
              I too am 26 years old and have just been diagnosed in March with IC. I have found that the adhesive heating pads that the IC shop sells are the best. You can buy some that are similar at Walmart or Walgreens, but I like the ones here better. If you buy them in bulk they are also cheaper than Walmart. I also bought a squirt bottle here and spray cold water down there every time I use the restroom. I have also heard the MSM gel helps with burning down there. I have not tried it yet, because I am waiting to talk with my uro but if you are desperate you might want to give it a go. Another very important thing is to not read the horrible messages that much. I went through a pretty severe depression about a month ago because I think I was not reading enough of the success stories. I believe that I need to know what lies before me but scare myself in the process. It seems alot of people have found the trick to be able to live life after IC. I am still struggling but have had four or five days in a row that have been pretty good. That hasn't happened since January. I think I am finding my food triggers finally. Make sure that you do the IC diet as well. I believe that might help you as well.
              Diagnosed with IC - March 2007
              Diagnosed with vulvodynia - June 2007
              -Lots of prayer
              -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
              -Taking Prelief as needed (stopped because of pregnancy)
              -IC diet