No announcement yet.

Newly diagnosed and in need of support

  • Filter
  • Time
  • Show
Clear All
new posts

  • Newly diagnosed and in need of support

    Hey, 23/f here, I was diagnosed about three weeks ago through hydro. It felt like my symptoms were pretty much gone after the surgery, but now it seems like they're coming back. I feel beside myself. I feel like IC is an abusive husband, that you have to tip toe around, and you have no idea what will set him off or placate him.
    My story is that I have NEVER had bladder problems. I had one UTI prior to the one that caused this mess and had never had any other bladder problems. I also have trouble forgiving myself because I KNOW I got the UTI that caused this from not peeing after sex. All I can think is that if I had just peed, none of this would have happened.
    My main symptoms are pain and urgency, not so much frequency. I only urinate about five or six times a day. I just have this constant pressure and pain in my bladder area. Most of the time when I pee, it hurts at least a little.
    I'm so glad that I found this network though, everyone seems very supportive, informative and understanding. It's good to have that support because I feel so pessimistic right now. When I tell people what I have, they always say, "well does it kill you" and when I say no, they're like, well, then what's the big deal? I think it's impossible for people who don't have this to understand how truly miserable it is. I also feel bitter because I'm 23 years old! I'm supposed to be drinking alcohol in bars or drinking coffee with friends and having sex, and I can't do any of those things without intense pain!
    Right now, the only thing that I take is prelief. I'm contemplating starting Elavil and Elmiron, because that's what my doctor wanted to start me on if the pain came back. Any feedback on that? Does Elmiron help to stop IC's progress? I know it generally doesn't get progressively worse, but just in case I want to stop it from getting worse!
    Thanks so much for letting me vent. Any feedback would be appreciated.

  • #2

    I am glad you found us..There is alot of imformation on this site that will help you.. I will give you some link below for the IC handbook..The biggest thing that has helped so many people here on the ICN is the IC diet.. I know if I eat spicey foods or foods with high acid I have pain and burning..Well if you need anything just ask...


    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.


    • #3
      Welcome! It's tough getting the initial diagnosis but the thing to remember is that it does get easier for most of us. Most find the meds that work and lead normal lives...well, sans margaritas and coffe, of course. But, that's a small price to pay to feel good. I drink almond steamers (steamed milk with almond flavor) at starbuck, myself.

      That said - this is NOT your fault. You did not get IC because you didn't pee after sex. Guilt/denial, anger, and depression are all part of the normal grieving process and you are grieving for your non-ic life. What you are experiencing is to be expected and you will work though it.

      If your uro is encouraging you to try new meds, please consider it. If you can stop the pain/pressure cycle early, it's much easier to get this stuff under control. But, always, it is YOUR choice.


      • #4
        I there! I am 32/F mom of 2 girls just officially diagnosed 2 weeks ago. Mine started in November with a really bad bladder infection and the bug I had was staph-aerous. That was the start to all my problems. I too have pain. Urgency/frequency isn't much of a symptom for me.

        I can relate to how other people respond. I got the same thing from one of my best friends. "Well....its not going to KILL you so at least it isn't CANCER and you know you will survive." Honestly, I haven't called her since.

        I UNDERSTAND your frustration. It sucks, really really sucks. I am only 2 weeks into this, and I can tell you I am already getting better. Get a really good uro-gynocologist if you can. Get a uro who specializes in pelvic pain and IC. Going to a urologist who mainly see's old men and does vasectomy's will not be much help to you. You need a doctor who understands women's pelvic pain issues.

        I am on Elmiron - 300mg a day. I also take hydroxydine - 30mg at bedtime, 10mg in the morning and 10mg in the afternoon. I'm having HUGE success with this which tells me my IC is having to do with a histamine response (allergies). I also take 1000mg of glucosomine with MSM. I take Prelief before I eat anything even slightly acidic - but I don't take it before EVERYTHING like some people do. I go into my doc's office twice a week for bladder instillation treatments. I've had 4 so far and they've done wonders for my bladder. My doctor agreed to do them twice a week until I am ready not to do them. I am on vicodin for pain when needed. I haven't needed it in 3 days so that is very very very exciting for me. My doctor is sympathetic to pain and wants me to stop the agonzing/irritating pain cycle. He said, "if it hurts, take a pain pill to stop the hurt until we get things healing and settled down". I also have physical therapy for pelvic floor dysfunction once a week. The PFD occured after my 2 daughters were born. Lastly, I am on the IC diet which is the hardest thing for me.

        Diet obviously is a huge huge part of this until your bladder lining gets restored and you can tolerate more foods. You sound like me exactly, you are getting treated for this early and THAT alone is a good thing. We may go into a quick remission.
        I am thinking of it now as healing my body - not a lifelong God awful change. I am only 32, I can't fathom dealing with this when I'm 52, so I'm only focusing on getting better NOW. I am eating tons of veggies and healthy foods - I even joined WW online. I am 5'4 and 129 pounds, but I'd like to weigh 120. SO since I can't eat what everyone else is eating, I may as well be on an "official" diet. Besides that, I can track and log everything I eat so I can go back and see if anything is irritating. Also, I am sure to get all the calories I need in a day, or not go over the calories I need in a day. Also, its easier to decline food when at a party or something if you are on Weight Watchers rather then getting into the "why's" you can't have something. Way too much to talk about to people who have never even heard of IC!!

        This board is so helpful. Start some meds and do your research and you will be on your way to good health. I'm telling you, 2 weeks ago I was sure I was dying and I was on my treadmill yesterday and roller skating today at a birthday party. You WILL get won't always be like this.

        Email me if you want to talk and get through this together since I'm a newbie too

        [email protected]


        • #5

          Since you gotten some great advice already, let me just add my to the gang! Glad you found us!
          How do you eat an elephant? One bite at a time...

          Harry arrived 2/23/09!

          *IC 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.

          IC Diet Cheat Sheet:

          IC dx'd Nov 2004
          Lymphocytic Colitis dx'd July 2005
          Possible IBS
          Current IC Meds
          Vistaril 25mg in the evening
          Previous IC Meds taken:
          Cystoprotek - 2 caps 2x's a day
          Elmiron, 100mg 3x's a day
          Ditropan, 5 mg 3x's a day
          Wellbutrin 150mg 2x's a day for Anxiety/IBS
          Pepcid 40mg a day for GERD
          Zytrec for Nasal Allergies
          Align Probiotic daily for IBS


          • #6
            I'm also glad you found us. I do think it would be a good idea to at least give the meds your doctor ordered a try. Elmiron can take six months or longer to become effective, but those who find it helps feel it's well worth it. Elavil works much more quickly and can help stop that urgency feeling. Usually doctors start it at a very low dose.

            Also, you'll want to give the diet a try.

            Stay safe

            Elmiron Eye Disease Information Center -
            Elmiron Eye Disease Fact Sheet (Downloadable) -

            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:


            Diet list:

            AUA Guidelines:

            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.

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


            • #7

              Elavil is my miracle in a pill. I had horrible pain when my symptoms surfaced and I thought my life was over. I went for months in that kind of pain until I found a new doctor who understood IC and gave me a prescription for Elavil 10mg. The next day, I was feeling better. That was in Dec of 2001. Today, I take 25mg of Elavil in the evening and live a pretty normal life.

              Shopping??? Did someone mention shopping? I'll get my hat... ;-)

              Where I can be found most days.

              Link to the ICN Patient Handbook:

              Link to the IC Diet:

              IC 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.


              • #8
                Just wanted to add some (((HUGS))) and say, please hang in there, I know it's been hard, but it will get better!



                • #9
                  I'm pretty sure if any one of my friends would have said to me, "Well, it must not be that bad if it's not cancer" then I might have gotten violent...I had so much pain in the beginning, that punching things seemed like a reasonable coping mechanism. Obviously, it's not, but again, luckily, nobody was insensitive enough to tell me that...which, I might have deserved, because I have been guilty (long before I got sick) of having that attitude towards friends who were suffering from other illnesses. It's just a "natural" response - your friends and family want you to go back to being "you," and since they don't know and can't know how you feel, they think offering this little tidbit of "perspective" might help you get out of the slump.

                  Let me warn you - chances are, you will hate this diet when you start. It will seriously make you angry, and depressed, and you might even find yourself getting mad at the very people who wrote the diet down for us, just because there'll be this part of you that will want to rebel. I know I did, even though I was fully aware at the time how irrational that response was.
                  Also, though, you're young, and you've caught things EARLY. Just try the diet out, if you can afford it, take the meds, and when you find a comfortable "baseline" point, you can start adding things in. Let me also tell you that it's not as bleak as it'll seem at first. You may well go back to being able to go out and drink, have coffee, and sex. Two months ago I thought all that was out of the question as well, but now, I can do all of those things with no problems (albeit, with a little more moderation than before...) It'll just take time...just like if you sprained your ankle, you wouldn't be able to walk on it for a couple of weeks.