Announcement

Collapse
No announcement yet.

new with ic & so lost

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Sorry to hear you were just diagnosed. I am 24 and just diagnosed. At my worst I was going around 40 times a day, but now its in the 20's and I finally slept for 7 hours with waking up only once. It was a relief for the last 3 nights. I wasn't offered the hydro... at least not yet. They want to put me on meds (Elmiron, Elavil, Atarax, then Ultram for 2 weeks). It's amazing how much the Ultram and Atarax helps. I too don't have pain (except for the first day of my period or when I run or am too active). So, the pain you hear about here... I'm not like that either. My guess is that they got to my IC diagnosis early and I'm hoping there isn't too much damage to my bladder. I had a strong positive response to the potassium test and my chief complaint is urgency and frequency. Like I said, no pain really and no incontinence.

    I hope this helped!
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

    [

    Comment


    • #17
      HELLO,
      quinn24 do you think that the one bout of pain was from getting hydro done- and it was only that one time? i know you say overall it helped a great deal & i'm so glad to hear you got relief from it. that is what i hoping to achive as well. wow only going 2 times at work would be A BLESSING!

      jen74, yeah i'm getting it done in hopes of relief, he says he need to look for ulcers, so if he was to look more closly than as well i'm not gonna argue with that-rather be safe than sorry. thank you for your advice & i am deff. doing alot of research on this. i called the docs. office & they wernt that helpful, so i just have my list of q's to ask the doc. b4 the procedure.

      born2swim, i only had a leaking issue 1 time but other than that the same deal as you. i feel so sorry for people that have the pain as well.i've had this issue 2 yrs b4 being dx so hopefully that is early enough to prevent it from getting worse. i'm glad you found meds that help & your doing better!!

      thank you all again! like i said i didnt get the answers i needed over the phone so i'll just have to wait till the day of- but i will also have another set of ears this time(my mom) so i know that will help. i'm glad i'm not the only one who doesnt have pain- i was scared that i had been dx wrong- but i guess everyones diff. the only pain i ever which really made it worse was intercouse once but that was the last time me & my boyfriend have until i get this undercontrol- it deff. pushed me over the edge , SO PAINFUL & my stomach was spasing, now i'm so scared.it was my beaking point to really push me -my whole life is on hold.sorry about that it's easy to start looking at the bad side. i hope you all have a great day & always finding better ways to feel better.
      jessica

      Comment


      • #18
        Hi JDOOKIE,
        No the pain I had experienced had nothing to do with the Hydro. If I get pain, I have a Hydro and it takes away all my pain. I do not know how long the Hydro works for and of course everyone is different. My Uro said that sometimes it takes a couple hydro's/stretching to get the optimal effect you are looking for. My first hydro helped me for 3 months solid, hopefully this time it will last longer as my bladder is bigger again. Now my problem is that my Uro said my bladder was in worse shape in April than it was in December so now I have to ask him why he thinks that is and what can we do about it. I am a firm believer in Hydros in resolving pain and frequency.......they don't work on everyone as you have read here but for me, I swear by them. You would need to try one to see if it helps you. Good luck! Quinn

        Comment


        • #19
          In my experience the cysto/hydro came much later as a 2nd opinon diagnosis. My main symptom is pain. I will say that right after the hydro the pain was much worse for a day or two. I think once I got over the initial irritation it got better. I also had to have my urethra enlarged, which made things ultra sensative. I had the cysto/hydro done about 2 or 3 years after my initial diagnosis and had tried the bladder instillations, Elmiron, Elevil, atarax, etc. I still think the one thing that has helped me most in the long run was the hydro/cysto though. I will mention this....I don't know if anyone else has experienced this or not. After the hydro my "urge" feeling changed. Right up until the procedure I had been have a lot of urgency and afterwards it just turned into more pain. It took me a good two weeks or more to realize just what was going on. I noticed that I would start to hurt and then all of sudden it went away after using the restroom. It was a different pain. My IC pain is more like hot lava in the bladder or spikes or something. This was more of a pressure thing. Like being really full feeling after a large meal, but lower. Almost like gas, but different. I don't really know how to explain it, just that after a while I learned that if I started to feel that pressure I had to go to the bathroom. Not at all like the normal urge to go to the bathroom. But all in all, I haven't had very many problems since the hydro/cysto. Since pain is not a symptom for you it might do you a world of good.

          Comment


          • #20
            hey,
            thats good to hear!sorry to hear it's getting worse, hopefully something will help with that, good for now that your symptoms are better. i will take 3months- gosh b4 this i took things for granet, change my whole look on life. good luck on your next hydro, hope you see great results. thanks for the advice!take care

            Originally posted by Quinn24 View Post
            Hi JDOOKIE,
            No the pain I had experienced had nothing to do with the Hydro. If I get pain, I have a Hydro and it takes away all my pain. I do not know how long the Hydro works for and of course everyone is different. My Uro said that sometimes it takes a couple hydro's/stretching to get the optimal effect you are looking for. My first hydro helped me for 3 months solid, hopefully this time it will last longer as my bladder is bigger again. Now my problem is that my Uro said my bladder was in worse shape in April than it was in December so now I have to ask him why he thinks that is and what can we do about it. I am a firm believer in Hydros in resolving pain and frequency.......they don't work on everyone as you have read here but for me, I swear by them. You would need to try one to see if it helps you. Good luck! Quinn

            Comment


            • #21
              hi,
              i'm glad you also as many has good results with the hydro!! the doc. also informed me i have a small uretha- he has to use a smaller cath when he did the 1st cysto. but just the cath alone are enough to drive you crazy.sorry to here about your pain.pressure is better than pain but yet so annoying-especially when it's constant. do they take a biospy every time they do the hydro to let you know if theres any changes? how long has yours lasted for? thank you again for sharing you experince.wishing you wellness

              Originally posted by plaedes View Post
              In my experience the cysto/hydro came much later as a 2nd opinon diagnosis. My main symptom is pain. I will say that right after the hydro the pain was much worse for a day or two. I think once I got over the initial irritation it got better. I also had to have my urethra enlarged, which made things ultra sensative. I had the cysto/hydro done about 2 or 3 years after my initial diagnosis and had tried the bladder instillations, Elmiron, Elevil, atarax, etc. I still think the one thing that has helped me most in the long run was the hydro/cysto though. I will mention this....I don't know if anyone else has experienced this or not. After the hydro my "urge" feeling changed. Right up until the procedure I had been have a lot of urgency and afterwards it just turned into more pain. It took me a good two weeks or more to realize just what was going on. I noticed that I would start to hurt and then all of sudden it went away after using the restroom. It was a different pain. My IC pain is more like hot lava in the bladder or spikes or something. This was more of a pressure thing. Like being really full feeling after a large meal, but lower. Almost like gas, but different. I don't really know how to explain it, just that after a while I learned that if I started to feel that pressure I had to go to the bathroom. Not at all like the normal urge to go to the bathroom. But all in all, I haven't had very many problems since the hydro/cysto. Since pain is not a symptom for you it might do you a world of good.

              Comment


              • #22
                Chlorpactin

                hi everyone,
                i dont onkw if i need to start a new thread or if anyone can help me(new at this). i just found out my doc. wants to use chlorpactin while i'm under for my hydro?? has anyone here had this done before or been treated with it? i have already read about it in the handbook, and old forms. just wanted some new updated thoughts on this. thank you, any help would be great seeing how my hydro is schedualed for friday the 11th.

                Comment

                Working...
                X