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Question for anyone who has been diagnosed

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  • #16
    Thanks Sandra- I must say this has to be the nicest and most responsive forum out there. Everyone on here is just so helpful and compassionate.


    • #17
      Hang in there!

      I am actually amazed that you clearly know it is your bladder that is causing the pain. All I could keep describing to the doctors with my pain was that it felt like it was right above the cervical area. I did not realize it could be a bladder problem at all and in fact balked at the doctor when he suggested it saying that it hurts really low down there (but higher pelvic area)... I could point directly to the very spot it was radiating from but that was the best I could do. I think the fact that you clearly know it is your bladder is a huge step in the right direction because I didn't even believe I had IC when they first told me! I wish you a lot of luck. It is very frustrating when you are having so much trouble and you feel like no one is giving you any clear answers. I will say a little prayer for you today! All the best! Nicki

      "What doesn't kill us makes us stronger!"

      Elmiron 100 mg / 3 times per day
      Meloxicam 7.5 / 1 time per day

      Diagnosed IC Feb 2011, working diagnosis for AI waiting true diagnosis and relief!


      • #18
        Thanks Nicki. Good luck to you too with all this. I never realized there were so many people with this type of problem. It's way more common than I had ever imagined.


        • #19
          Earth Lady, Hang in there. I thought the back issues I was having were complicated...I would do anything to have just those problems and those alone, back. This IC thing has me a confused, nervous wreck as well. I think there are a few things that most doctors like to rule out before diagnosing you with IC. My doctors ruled out a TON of things first and I swear the weeks dragged on and on and I wondered if theye were ever going to come up with anything. I finally had the bladder distention last Friday. I'm not going to lie...I have felt kind of rotten afterwards, but the procedure itself went fine. I am wondering if part of the reason I have been feeling so rotten aftewards is because now I finally have a diagnoses...and it's not what I wanted to hear The weird thing about my bladder is that when the dr blew it up, it looked fine and held a large amount of urine. But everytime it went back down to normal size, it would begin to bleed. Anyhow, as we have found two cases of this are the same. If they were, I'd hope there would be an easy fix. I feel confident that my dr is on the right path (as much as is stinks) but he has at this point ruled out everything else. I hope you find some answers soon. I'm rooting for you!


          • #20
            hi my name is jody and i got diagnosed with ic about 4 years ago. my dr has me on elmiron, prosed, ditropan, and ampillicin to keep the bladder infections away i get a bladder infection every 2 months. my symptoms are pelvic pain, sharp pains in my bladder area urinate alot, also i have a problems sitting up over 2 hours and then i have to lay down to take the pressure off my bladder, i dont know if anyone has that problem would like to know if there is , because i think im crazy, lol . i have found one thing that helps if i have to go out in the day time and that is lidoderm patches you can put up to 3 patches on its 12 hours on and 12 hours off. it helps a little until the numbing agent wears off. thank you


            • #21
              Rough Week...

              Hi Everyone! I have had a pretty rough week. My family doctor saw me last week and we had a really good talk. He said that my swollen lymph nodes, the numbness in my limbs, the rash on my face/chest from sun, the hair loss, and the terrible aching all over and extreme fatigue do not seem to be symptoms of IC. The severe abdominal pain and bladder symptoms though he said clearly are. He feels there is more going on and highly suspect of Lupus (SLE) at this point. He ran a lot of bloodwork, urine, x-rays of every joint in my body, back, and neck, and ultrasounds of all the lymph nodes and said they are seeing the lymph nodes, seeing arthritic conditions in my joints, scoliosis of my back, but nothing in the bloodwork... We just found out a week and a half ago that my grandfather had an extremely aggressive form of leukemia. He showed no signs of it in his bloodwork, despite extreme fatigue, chest pain, etc... and finally when he got too weak to climb stairs at home they ran a bone density scan and found the problem. He passed away Sunday morning, and I am devastated. It was so sudden, and there was no sign of anything in his bloodwork at all. When I had osteomyelitis I had no sign of it in my bloodwork either (and I should have had a raging fever and high white blood cell count) and nothing showed up. The doctor luckily believed me and put needles down into my hip bone and that was when he found it. I am just wondering if some people just don't show things up in their blood. Even with the negative ANA test, my doctor feels that I most likely have Lupus but that it could take some time to diagnose until I have a bad enough "flare" for it show up. But when I spoke to someone else, they told me that they are only able to test for one specific B-cell antibody and that they suspect that people with Lupus can have different problems with different antibodies and that is why some people with full-blown Lupus have never tested postive on the ANA test.... I just don't know... But what I do know is that I have been progressively getting sicker for the past couple years, the only thing that has really helped has been corticosteroids, and that the symptoms keep changing. By the time I go to see a specialist half the time the symptoms are gone or not as severe, and then return shortly afterwards. I don't know if I should start taking pictures or what?! I just wish I could find a doctor that could figure this out for me!!! I am grateful that my family doctor is finally getting so pro-active about this situation though and really trying! Up until now, I was seeing his co-worker doctor who did not seem to care and he just took over my case (thankfully) and seems to be trying really hard to help me figure out a diagnosis. If anyone has any help or suggestions or information on IC in relation to other autoimmune diseases, I would be so grateful for any help! My doctor said for sure that I have some form of an autoimmune disease with the IC, but although he is "fairly sure" it is Lupus, he cannot say definitively unless a rheumatologist diagnoses it by symptoms or if I have a positive ANA blood test... Thank you all for any help and encouragement. I am so devastated that my grandfather is gone. He was just like a father to me as I lost my parents at an early age (they are part of a religious community group and I can't ever see them). So it really hurt bad as my grandmother passed of a brain tumor just a few years ago and now I feel so alone with no family! Take care everyone!! All the best! Nicki

              "What doesn't kill us makes us stronger!"

              Elmiron 100 mg / 3 times per day
              Meloxicam 7.5 / 1 time per day

              Diagnosed IC Feb 2011, working diagnosis for AI waiting true diagnosis and relief!


              • #22
                How & where would you use the pads. My pads are rather large, but in pain. If it would work for 12 hour the antibiotics should be taking effect.


                • #23
                  For Nicki: I'm so sorry about your losing your grandfather --- my heart goes out to you.

                  It sounds like you have a caring physician who is working to get to the cause for your feeling so rotten. I hope some answers show up soon --- not knowing is the worst possible time.

                  I'm sending well wishes 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


                  • #24
                    Symptoms alone. 3 Doctors confirmed. Have had internals and was told I have a inflamed bladder by gyno.
                    Diagnosed and Told to do the diet 12/12/12.
                    Went to Gyno in January, she confirmed diagnosis, said my bladder was VERY responsive to pain during exam.
                    Went to EXCELLENT new GP in February. Feeling better from Hyoscamine once spasms stopped.
                    Went to Uro on Valentine's day 2013. I was told "lots of options" (things to try) no cure, not a progressive disease.
                    NOW to decide on Hydro/Cysto procedure. I have put it off for now...
                    Doing Diet - STRICT and aloe DH-like, Cystoprotek and D-Mannose
                    Singulair - New and hopeful it will be helpful, 1x a day
                    Hyoscamine -as needed for spasms aka pain - best defense yet! Hate taking, dry mouth n thirst.
                    Valium - if needed for sleep and stress
                    Uribel (prescribed as a daily thing) was doing as needed. Am doing pretty regularly as I am pretty much always symptomatic
                    Amitripyline (prescribed as a every pm thing). Doing when I feel quite symptomatic or want to sleep longer then 2 hr intervals.
                    Side effects of dry mouth, extreme thirst and tired. Not a fan of SSRI's
                    Zyrtec for allergies - 1x a day
                    Prerelief when I am nervous (gulp) about a food.
                    Practicing self care, listening to my body, reducing stress, being grateful...


                    • #25
                      Originally posted by earthlady View Post
                      Maybe I should be glad he's willing to exhaust all other possibilities to make sure there aren't other things causing the bladder problems.??? I guess that would make for an accurate diagnosis. I think I need to calm down. This condition is the most anxiety producing medical thing I have ever had- and I've had some doozy medical things in the past, but this is by far the most confusing.
                      I completely understand the anxiety I have been thru alot myself but this is by far the worst. It took years I didn't know what was wrong with me but I knew it wasn't all in my head. I've had it hurt so bad it was like kidney stones, I would go to ER and no stones. Finally a diagnosis, it has been a lifestyle change completely. I can't just go and come like I used to. Lifestyle change and pain management has helped me the most. Best of luck to you.