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still feeling clueless and afraid...6th months later...

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  • #1

    still feeling clueless and afraid...6th months later...


    I was officially diagnosed six months ago.....I still feel like a newbie though... I'm still trying to understand IC (in general) and my own personal IC (because it's so gosh darn personalized). Then of course there is the whole conceptualization of "why me?" "why do I feel like no one believes me?" <---- (the worst part aside from the pain!)

    why do I never really feel like I fit into any symptom category?...I feel like most people w/IC have a lot of other related things I've never even heard of. Will I get those in time?

    I only have urethral pain, bladder pain and frequency (and sometimes spasms after peeing)...should I expect a pain increase? Is that how it seems to go?

    I am taking Urised all the time...I wonder if I'll have to take it for the rest of my life!

    I'm 20...trying to imagine what my future will be like...

    this site has been so helpful to me when i feel alone here...thanks to all!
    Diagnosed: December '06
    Meds: Urised (looking for more non-invasive options)
    I did not have any flares in Caracas. Patch explained this phenomenon to me as a type of "reverse" healing. When all of your energy and love is focused upon abating the pain of others, you, in turn, may heal.
    "Doctor Yaso" (Caracas, Venezuela) and "bolaroja" (Lima, Peru)
    Tags: None
  • #2
    As you've already figured out, IC symptoms vary from patient to patient. And I don't think 6 months is all that long as far as getting familiar with the condition and the treatment options.

    I was right around your age with my IC was diagnosed, though I'd been having symptoms for a few years. IC pain does not necessarily get worse, I don't think its a progressive disease.

    For me, once I had a diagnosis and was able to focus on treatment options, I found that my symptoms eventually decreased. It took quite a while for me to determine what works best (which for me is diet modifications), but now I feel I have more control over the symptoms than they have over me.

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    • #3
      My IC was diagnosed over 32 years ago and, if anything, I am better than I was at diagnosis. I think I do well because I've learned which foods and drinks are a problem and which treatment options work best.

      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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      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.

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      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
        You are sooooo normal! I was 19 when they first brought IC up in a possible diagnosis and the same age as you when it was diagnosed. I went through a good year or two of trying to figure out the whole IC puzzle. And it wasn't just that, but you go through a grieving period, too.

        And why shouldn't you?

        It's a serious, chronic health issue and you are so young. Give yourself time to adjust and get to know your health better. Don't rush it--it will come in time.

        I'm almost 25 now and I can tell you that the adjustment was not easy by any means. I went through depression, bounced from treatment to treatment and doctor to doctor, trying to figure out what helped and what didn't. It's time consuming, sure. It's a pain, definitely. It's depressing--absolutely.

        Anytime you start feeling unsure and need support, just come here. That's what we're here for!
        Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

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        • #5
          here goes...

          I really hope "they" get to the bottom of this puzzle..."Progressive"--THAT'S the word I was looking for!
          As for now...I guess it's time I start organizing the pieces...and I'll probably be looking here for clues a lot. You guys are my saving grace!
          Diagnosed: December '06
          Meds: Urised (looking for more non-invasive options)
          I did not have any flares in Caracas. Patch explained this phenomenon to me as a type of "reverse" healing. When all of your energy and love is focused upon abating the pain of others, you, in turn, may heal.
          "Doctor Yaso" (Caracas, Venezuela) and "bolaroja" (Lima, Peru)

          Comment

          • #6
            I too am still trying to figure out what is best for me. I started having symptoms in January and was told in March from my uro that he thinks I have IC. I am not doing the hydro right now because my symptoms had improved and I did not want to mess that up. I have felt depressed lately because I was in a flare and sometimes I forget what it is like to not be in a flare. But then yesterday came, and I almost felt completely normal. A little burning throughout the day, but that was about it. I was able to play indoor soccer with my husband and play two slow pitch softball games. That is the most exercise I have had since this began. I just knew I would pay for it today, but so far, just sore muscles, not a sore bladder! When I am having a bad day from here on out, I am going to try to remember the times when I did feel better and know that they are just around the corner.
            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

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            • #7
              Originally posted by KristiV View Post
              I was able to play indoor soccer with my husband and play two slow pitch softball games. That is the most exercise I have had since this began. I just knew I would pay for it today, but so far, just sore muscles, not a sore bladder!
              example of murphey's law:
              Oh my gosh! I went on a hike Saturday afternoon. I put the key to my car in my sportsbra...when I got to the car (5 miles later), the key was gone (DUH!). I don't have a spare within non-mailable distance so we had to go back Sunday during the day and do the whole thing over looking for it! I had forgotten to bring water the day before...and so I was fine on Sunday during the hike, but I remembered to bring a big water bottle for the key-quest. Good news is: found the key (PHEW, I'll never be so stupid as to put anything in my bra for 'safe keeping' again!) Bad news: I am PAYING for it today...I think the difference was the hydration!?! I guess it makes sense...but it's so frustrating when doing something as healthy as hydrating is so painful!!
              Diagnosed: December '06
              Meds: Urised (looking for more non-invasive options)
              I did not have any flares in Caracas. Patch explained this phenomenon to me as a type of "reverse" healing. When all of your energy and love is focused upon abating the pain of others, you, in turn, may heal.
              "Doctor Yaso" (Caracas, Venezuela) and "bolaroja" (Lima, Peru)

              Comment

              • #8
                i know how you feel

                Hi Pee&Me
                I know exactly how you feel. I started having symptoms in January, and like KristiV, was diagnosed in March 2007. I have been dealing with the same feelings of confusion and fear since this all started. These message boards are so helpful, its unbelievable! The women and men are so supportive and understanding.
                I feel as though I have a mild case of IC, and so I should consider myself lucky. However I have been dealing with the depression and fears that my condition will progress, or that I will develop other diseases, such as some of those of the people on the board. Im trying my hardest not to let these fears affect me.
                I went through a grieiving period, which was very hard. But I feel as though I am coming out of it again, and am slowly learning how to deal with my IC, and how to live with a disease. Currently I have mild symptoms, so Im doing my best to stay positive and to live every day as best/happy as i can, because you never know when things could get worse. Im so scared of that, but Im hoping that I will be able to find treatment that keeps me as healthy as possible.
                I know exactly how you are feeling, so if you ever want to chat please PM me anytime.
                Take Care, and know that there are other people in your shoes!
                Hugs
                jube


                "Its a troublesome world all the people who're in it
                Are troubled with troubles, almost every minute
                Just tell yourself Duckie, you're really quite lucky
                Some people are much more, oh muchly much more
                unlucky than you!" Dr. Seuss



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                • #9
                  Hi Pee&Me, I was also diagnosed aprox 6mo ago and still not quite sure of what lies ahead for me. I have a harder time reading my friends and family's faces when I complain or say I can't go here or there becuz of the pain and urgency to pee ALL THE TIME!!!! My own family who loves me, I catch there eyes rolling or hear them talk about "mom in bed again." I feel so alone except for my wonderful husband,my 13 yr old son and I have 4 other kids ranging from 28 to 16 and it's the youngest one who constantly asks me how I'm feeling and comes to me to talk as I lay in bed (not where I want to be) but people think I do.Thank God for my waterbed! It helps. The only other people I can truley relate to are the cyber friends on this wonderful website! I'm a nurse and never heard of this disease! It is so debilitating and widespread and never covered in 4 yrs of college! Worked in nursery at local hsp for 19 yrs and had to quit last yr cuz of migraines but have been going through menopause and on hormones now and migraines almost gone. I don't think I can even think about going back to work peeing every half hour. If I take pain meds I can last up to 2 to 4 hours! But don't want to work on meds. Hang in there kiddo I'm praying for all of us! Sandy

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                  • #10
                    I still don't have a diagnosis but have been flaring on/off since April. I am so confused and now my Uro-GYN is not sure it's IC. I just want an answer as to what else it could be. The diet thing totally confuses me because it seems like sometimes I eat things and feel great for a week and the next week no matter what I eat, I hurt. I don't have frequency and only minor urgency when I drink anything besides milk and water. My symptom is pain in both the urethra and bladder. It feels like bad menstrual cramps and like someone is sticking a knife in my urethra. I actually feel best when I'm on my period which confuses me even more. I see my Uro-GYN on Thursday and I am really nervous that I'm going to leave that appt with no more answers. I just wish someone knew what this problem was. I cleaned the house today and did a lot of activity and am hoping I don't end up paying for it later. The most frustrating part of this is not being able to exercise!!
                    The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                    First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                    Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                    Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                    Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                    BABY GIRL 10/28/08 *** BABY BOY 7/8/11

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                    • #11
                      It's amazing how personalized IC is...I'm really hoping for some new research to turn up so we don't have to feel so trapped. I can totally relate to the "knives in the urethra" I have a diary full of that saying...
                      Diagnosed: December '06
                      Meds: Urised (looking for more non-invasive options)
                      I did not have any flares in Caracas. Patch explained this phenomenon to me as a type of "reverse" healing. When all of your energy and love is focused upon abating the pain of others, you, in turn, may heal.
                      "Doctor Yaso" (Caracas, Venezuela) and "bolaroja" (Lima, Peru)

                      Comment

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