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Pain later on with IC

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  • #16
    Hi Peggy,

    I was diagnosed with IC a little over 3 years ago. My symptoms started abut 5 years ago with urgency and frequentcy. The pain started about a year after the symptoms. I described it as trying to pass cut glass. It took me another year to find a Dr. who could diagnose the IC. He told me after I had my first cysto, that I had Hunners Ulcers and a very small bladder. I suffered a lot of pain for about 15 months, then went on El****, which has helped with the night time pain. I also had a hysterectomy last september and it has made the biggest difference in my pain level. I also have Cysto/Overdistentions about every 4 months. Watching my diet and trying to avoid stress at work (a joke) helps too. Knowing when your pain is getting out of control and taking steps to curb it also helps. Some people never experience any pain, just urgency and frequency. I can tell you that while the pain never goes away, it can be managed. Hang in there and let us know how your are doing.


    • #17

      I just wonder what is a bladder suspension?

      Best regards from


      • #18
        I have IC with only frequency and sometimes urgency and burning. My frequency isn't bad, about 15 times a day when I'm in a flare. i can usually hold it for long periods if i want to, but i try to not do that. My doctor and my IC advocate said that if you take care of yourself your flares rarely get any worse than your first one and that it does not progress. i thought that everytime I had a flare it was doing more damage to my bladder. My doc says no. i do not have the ulcers. According to what I've learned the flares usually start then reach a peak and slowly taper off. That's true for me. I also read that if it does progress it does so quickly like over a period of 6 months to a year. Hope this helps.


        • #19
          MALIN; can look up more about the bladder suspension on the internet but i can tell you this much i will start to leak urine and sometimes have to wear a pad ..your bladder actually does slip down away into your vaginal area or close to will feel as if your whole insides of your vagina is falling out when you stand or walk..if you think that you have this problem ..please get a second oppion before you have any tyope of surgery for it..someone else had said they had the surgery but the sytoms are coming back..alot of times for some reason you have to have the surgery done again ...i have had alot of women tell em they have had it done more than once..hope this helps..DEEDEE angel
          dx'd i.c in 96,too many treatments and meds to remember before badder removed in 2000.pain returned..has since been on roller coster of narcs ad other things..3 suicial att..went into hosp to withdrawl from sooo many narcs and wt. got down to 85lbs....came out eating small amounts ad keeping them down..the only pain med was ultram 50mg q 6 hrs..and gabapintien sorry..can spell..600 mg q 6 2003..nowin 2006-ive had mesh pulled from myvaginal walls 3 timesso pain is severe again but also in rectum now..had to add hydro/app q 4 hrs.!!!but i still pray there is hope..i just need o find it.


          • #20
            When I had my bladder suspension is when the pain of my IC started.

            Now my uro wants to put me thru all kinds of tests because he thinks that my bladder is too high and it needs to be clipped so it will fall some and allow the urine to flow so that I won't have to cath all the time, meaning maybe the infections will go away. But, there is a 20%
            chance that I will leak more than I did before my suspension, which basically would mean I'd have to wear a pad all the time. I'm just not ready to go there yet. He doesn't know if it would stop the pain. No use being sliced and diced again again if it's not going to stop the pain
            Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


            • #21
              Teri, Just a word.."My Mom had that done,,,don't do it...get a second opinion from a doc not affiliated w/your current hospital..She had hers. "tacked up" to help that and is in hell all the helps nothing, Moving it didn't change anything,,it "shrinks" because over time, "scarring" causes it to not be flexable any more and that creates the "small bladder" usually this business about small is scars, but mine was physically small I am inside, but my Moms isn't. I hope this helps, we aren't all alike but sharing can help, sanctuary
              Never take a "No" from someone not qualified to give you a yes..


              • #22
                Teri, Have you asked your Dr. If you could have autonomic nerve damage, causing your need to cath.
                Do a search on that, before you try more surgery.

                My Mother has autonomic nerve damage and has the same problem. You might be diabetic, Hypo thyroid or have MS they cause that problem. My mom has thyroid disease and she had trouble peeing before treatment.

                I would search all other possibilities on this one.


                • #23
                  Before I had my total Bladder removed I hav those Hunners Unclers. Then Months after the Bladder removed I still had a tremdous amount of Blood still in the Urine. Well Three Blockages later and 19 years with a Urostomy I still suffer Horrible Kidney Infections. The Great Dr. said it is a IC" Grem" That just lives and Breaths in the Urine of people of IC. so I will always have trouble rest of my Life. But At Least i do not have to yell Help I have tp Cath or Pee all the Time now. I do not Mind the Bag after all.

                  Take Care
                  Have a Wonderful Day. Live each day to the Fulliest and Have a Good time while you can, cause you never know what is around the Next turn.

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