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New to IC and having trouble being optimistic :(

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  • New to IC and having trouble being optimistic :(

    Hello. My name is Andrea, I'm 27 years old, and I was just diagnosed with IC two weeks ago. I had been complaining of bladder issues for almost a year now. It took me so long to go to a doctor because I didn't have health insurance, and because I'd have days that felt like things might get better, so I'd wait it out just to have a worse day the next day! I feel blessed to have been able to be diagnosed so quickly, because I've read of people living with this for YEARS before a diagnosis and treatment. So for that I'm grateful. However, I'm in pain every single day. My "good days" are painful and my "bad days" make me wish I didn't exist. I'm on Amitriptylin and Hydroxyzine, have been doing bladder instillation, and start pelvic floor therapy this week. My whole world has been turned upside down by the pain (bladder, back, and upper legs), the frequent urination, and the way the meds make me feel. I feel as if my youth has been stolen right from up under me. I have no PTO left at work because I had been so sick over the past few months (Now I know some of that was due to the IC), and so all the time I miss from work goes unpaid. My boss and HR person talked to me about going on short-term disability until my symptoms can get managed. That way I can take sometime to focus on getting better, without have to go totally unpaid. I'm so upset by this... and quite honestly, embarrassed. I'm only 27. I shouldn't be going on disability. I'm so afraid of my life now being totally defined by this. I get no relief, very little sleep, and since I'm tired all the time I get stressed easily.... which we all know makes things worse. I'm so sad over this....

  • #2
    Hello and Welcome to the IC family, you've found a great site with lots of information. I would like to say we've all been in your place at one time or another and when we flare we may very well find ourselves in that "not so good place" again. Please know we are all different and it takes time to find what treatments will work for us. You don't mention if your on the IC diet, if not please start it does make a difference. It sounds like you have a Uro that knows what he or she's doing and is working to find a teatment. It's hard to stay positive in times of a flare but do know plenty of IC members live a normal life. Sending healing prayers your way.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily


    • #3
      We Understand

      I truly understand the pain, frustration, and irratation that often accompanies IC. Because the baggage was too much, I sought the help of a counselor. This has helped tremendously. I needed a safe place to "dump" and receive tools that would help me cope with IC.

      It was suggested that I follow the IC diet. This has been most beneficial. At first, I was not as serious about the diet as I am now. The diet has been a lifesaver.

      I did not believe things would ever get better but I can definitely see growth. Hang in there and never give up.

      You have found a place of love and acceptance. So sorry for why you came to this site but so glad that you had a place to come.

      Praying for the cure


      • #4
        <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


        • #5

          Hello!!!! I am 24 and have also felt like you for since Dec! I was very very sick to begin with. Had to come home from university in my last semester!! ALMOST didnt graduate!!!


          HOWEVER. Since then I have been my own best Dr. like many of us are, (within reason I suppose) and mostly geared toward diet and lifestyle!!!

          FOLLOW the IC diet! its a helper

          You know your body best so take some time and think of this a HEALING your body. Dont think of disability as a bad thing right now, try and look at it as a step forward.. time to spend on you

          I know that is hard. and honestly when I had to come home from university sometimes I didnt think I was gonna make it, sometimes I was SO low I didnt know how I was gonna put my body back together.

          I am still learning, as this wasnt to long ago that it all happend. but the progress I have made is incredible from where I was.

          When I first started having symptoms I had to be hopstpitalized and catherterized because I could not pee on my own!!
          THEN I had to learn how to self cath and take it with me to UNIVERSITY and self cath in the bathroom.. talk about low.

          I want to give you some hope though, that even though your low now, does not mean you will be for long if you can change your diet, lifestyle and attitude!

          I stopped feeling sorry for myself and look at this as something that is supposed to make me take care of ME. I look at food in a whole new way, i LIKE veggies. Where as I didnt before. I have just started to eat quinioa and I like it more than potatoes and rice combined! I am healthier because of it and eventually I feel like my ladder will heal

          I have done a TON of research. Mostly on the effects of yeast, and the benifits of alaklizing your body through diet.

          Currently I am on the anti candida diet, as I was on a ton of anti biotics before this all happend, which I believe contributed to IC. I have eliminated sugar, bread and eat a diet now (trying reallly hard haha) that is 80% alakaline and 20% acid. A good book to get (which I am in the process of getting) is Amrit Willis- Solving the IC puzzle".

          As of now. I have no pain. I pee fine on my own where I once couldnt at all. I am currently only on elmiron and plan to go on cystoprotek as it is natural, and eventually off all meds. I still have frequency that drives me MAD haha, but its definatley improved, and some days its actually normal. I have already had 3 weeks of symptom free... until I ate the wrong thing last week! .... but its all trial and error still!!

          Dont give up on yourself, just think of this as a set back. Like lots of folks on here tell you, it might be hard, draining, and painful sometimes but many find a combo that works for them to acheive normalcy.

          Good luck!

          28 yrs old,

          I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

          What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

          Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!

          Me in my graduation gown!


          • #6
            to the IC Network family. I do understand how you are feeling. I agree that allowing yourself some time to heal is a good idea. Once you have a chance to be on the diet for a while and learn which treatment options work best for you, you will be better able to handle working.

            Sending gentle hugs your way,
            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
              Hi Andrea,

              Welcome to the board! I really, truly and sincerely mean this when I say - you've been given some great advice already by the ladies in this thread. I have used some, if not most of the techniques mentioned here to get myself to a better state - and believe me, things have improved. They're still not perfect, but a far cry from where I was two years ago or so.

              What I've seen is that IC is an individual thing - different things work for different people. But have heart that you CAN and you WILL get better. I have no doubt about it. It's just gonna take some time, take some trying, and as others have already mentioned, if you can take some time off, do so. Think about it - what will a few months, a year be in the grand scheme of our lives?

              Give yourself a chance to heal! And chin up - as hard as I know it is some days. You'll get better!