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Officially a Member of the Club That No One Wants to Be In

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  • Officially a Member of the Club That No One Wants to Be In

    I finally got diagnosed with IC today.

    It really comes as no shock being that I pee twice an hour and have had fake UTIs with high WBC count but no infection since I was 15. (almost 27 now)

    I am the opposite of most people. It seems like everyone else I meet online or in person gets diagnosed with IC first and other pelvic issues later. I found a doctor to diagnose my pelvic pain finally in 2009...but took almost 2 more years to get help with the IC.

    On a bright note, my new URO is SO SO NICE. Way better than the one that was snarky the last time I tried to see a URO.

    He diagnosed me with the potassium test and his opinion based on my symptoms and medical history.

    He does still want me to get a cysto done because he wants to take a look at my urethra just to make sure there are no abnormalities. He is going to put me out b/c he doesn't think I can handle being awake since I have so many pain issues.

    I was even talking to him about my past biofeedback pelvic floor treatment and he gave me a referral to someone who does internal massage incase I want to try that too.

    One more issue and one more medication to add to my list. At least maybe I will stop leaking urine now that I will be properly treated.
    DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

    Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

    My Pelvic Pain Blog

    FB Fanpage for My Pelvic Pain Blog

  • #2
    At least now you know and can begin to treat your IC. I know for me the worst time with interstitial cystitis was the time before I was diagnosed. Once I found out what I have, I could begin dealing with it.

    Sending encouraging hugs,
    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

    Comment


    • #3
      It just doesn't seem right to you to this little club. Because you're right, nobody really wants to be a member! But I'm glad, after so long, you got your diagnosis. And you're right, by the time I was diagnosed, it wasn't a huge revelation to me. Just confirmation of what I already knew!! Glad you got your diagnosis!
      Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
      Lexapro-20 mg
      Aciphex
      Ambien-as needed
      Percocet-7.5 up to 3 per day as needed
      Valium-10 mg x2 per day
      Phenergan-1 at night
      Prelief w/everything
      Now recovering from acute pancreatitis

      Currents treatments that help somewhat:
      Heating pad
      Hot baths
      Ice
      Being VERY still while lying down with legs elevated

      Comment


      • #4
        I figured I would give you another welcome now. I am a male, by the way. None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! We don't enjoy being members of the club, but it is good to have others that do understand. Besides, it seems like you have got a plate full by now.(of diagnoses)Oh! I did notice you are not new to the website at all.

        Comment


        • #5
          Ic

          Sorry to hear you have IC, but this forum is great for info. Oh make sure you stick with the IC diet.
          <center>
          <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
          </center>

          Comment


          • #6
            Thanks everyone

            Luckily, from all my other pelvic issues and research and this forum I know a lot about IC already, so I am less scared then I was back before I went through the whole long process of getting diagnosed with Vulvodynia.

            Being as I am only in my late 20s, I hope this is my last chronic diagnosis for a while lol. (doc was asking me if I ever had tests done to me for IBS or Fibro...don't even wanna think about it right now).

            One day at a time.
            DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

            Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

            My Pelvic Pain Blog

            FB Fanpage for My Pelvic Pain Blog

            Comment


            • #7
              Originally posted by statesboro View Post
              I figured I would give you another welcome now. I am a male, by the way. None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! We don't enjoy being members of the club, but it is good to have others that do understand. Besides, it seems like you have got a plate full by now.(of diagnoses)Oh! I did notice you are not new to the website at all.
              Thanks


              Yep, not new to the forum just to IC.

              I found this forum in 2009 when I was crippled with pelvic pain to the point where I couldn't get out of bed and was doing Vulvodynia research online. I was one of the rare posters who had PFD/V only and no IC confirmed until now.

              It's weird how so many people have the over lapping conditions. I wonder which comes first...the IC or the PFD. It's like the chicken and the egg.
              DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

              Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

              My Pelvic Pain Blog

              FB Fanpage for My Pelvic Pain Blog

              Comment


              • #8
                Sorry VC, but at least you now know and maybe you will be the one who gets the right combo of treatment. So extremely happy to hear you have a good doc. That is a big :woohoo: Hang in there, many go into remission, and it sound like you are on the right path. Good luck to you, let everyone know what works for you, please. Jill, wife of Bob

                Comment


                • #9
                  So sorry you've become an official member of Club IC! But like the others have said once you can put a name on it you can start to deal with it.

                  It is weird how so many people have overlapping conditions. You'd think that might be a key to unlocking some mystery.

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

                  Comment


                  • #10
                    I am just wondering if there are people with JUST ic? I haven't seen anyone without some other DX too. How do you test for Fibro and IBS. I really feel I have both of those now as well as IC. But, for me, they developed after having IC. Sorry you have to be here - sorry anyone has to have IC (and all the other stuff). Hoping someday this website will not be necessary for anyone.
                    Teresa

                    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                    Comment


                    • #11
                      The only things I have are IC, high blood pressure, and diabetes.

                      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

                      Comment


                      • #12
                        Donna,
                        So you are one who doesn't have all the other overlapping conditions that many other IC patients have. I know you have said that your IC has not gotten worse either. I wonder why some have these things and some don't. Maybe there are different "types" of IC. Maybe "IC" isn't just one thing. It is good that they are doing research in this area too.

                        Vicki,
                        I love your painting! That is really beautiful. It seems like you are getting more and more finished quicker now. I really enjoy getting on here and seeing what you have created.
                        Teresa

                        We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                        Comment


                        • #13
                          Just IC For Me

                          Originally posted by Snowden1 View Post
                          I am just wondering if there are people with JUST ic? I haven't seen anyone without some other DX too. How do you test for Fibro and IBS. I really feel I have both of those now as well as IC. But, for me, they developed after having IC. Sorry you have to be here - sorry anyone has to have IC (and all the other stuff). Hoping someday this website will not be necessary for anyone.
                          Hi Theresa,

                          I have noticed that a lot people here have the overlapping DX. Other than well controlled High BP and asthma, so far I have only been diagnosed with the IC. But I also get the horrible cramping at any time of the month, so I wonder if that is a symptom of the IC or is that what PFD is? Maybe I have that too.
                          My heart goes out to those of you with multiple DX!

                          Jana

                          Comment


                          • #14
                            You are right Jana, there are so many who have other health problems as well, related or not? Who knows? Did those other conditions cause IC or just get forward to that diagnosis? So much research to be done. Have gotten so much helpful info off this site, it has really been a blessing for Bob. He also has multiple health issues, COPD, asthma, IBS, depression, blah, blah, it goes on and on. Only 55. But he had symptoms way back into his early forties, so who knows. Will say though that the IC was the thing that took him down and made his other stuff worse.
                            Not being able to move around a lot because it just hurts too much is not good. His prostate surgery just triggered the IC into the painful state rather than just frequency. Ummm....And then an umbilical hernia surgery, IC got even worse.
                            PT just felt him down there and could feel the scar tissue. Bladder trauma? Oh my, so many possibilities, but there are folks who ONLY have IC, and there are small children who have it, so it seems it will be a mystery for a while. Don't think IC is on the top of the list over cancers, hopefully our children will never have to go through this. But you hang in there, a lot of women get a lot of relief from different combos of things, don't be discouraged, it takes time. Wish you a lot of luck, stay informed, and never be afraid to express your feelings to your doc. Stay smart GF. Take care, Jill, wife of Bob

                            Comment

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