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  • severe incontinence

    I am new here and have been reading as many posts as I can to see if any of you have my problem. I was diagnosed with IC by a gyno specializing in IC about 4 years ago and I am 60 years old. My only sympton is incontinence. I do not experience the pain that I keep reading you all have. I am now beginning to wonder if I was diagnosed correctly since I don't have the pain. However, the incontinence has progressed to the point where I am very miserable and my life is certainly curtailed. I have to wear diapers and even then I am not safe because I pee so much they always leak, especially at night. I always wake up in a river of pee. It is horrible. I thank God I have a wonderful, understanding husband who loves me anyway. I never want to spend the night at my children's homes but sometimes have to because they want me to but I make them put plastic sheets on the beds and furniture. It is embarrassing to say the least. I just have absolutely no control over my urine and I rarely make it to the bathroom in time. None of the Detrol, etc helps me at all. I have since lost my job and my husband was laid off. I don't have medicare yet so I have to go to a clinic for the "financially challenged". I love my doctor, he is understanding and nice but I know I need a specialist. It is a good thing I don't have the pain because I have diabetic neuropathy and am in horrific pain from that in my hips, legs, knees, ankles and feet. I can barely walk or stand more than 10 minutes at a time, so I can relate to chronic pain I just don't have it in my bladder region. One weird place I have been hurting for about a week is right over my pubic bone on the fatty part I believe they call the "mons pubis" or something like that. It feels sore or bruised and even hurts when I cough or sneeze. And before you ask, no, it is not from sex. That is another subject I won't go into now. Does anyone know what this could be and also does anyone else have just the incontinence without the pain. Thanks for listening. It feels good just to let it all out to someone who has this disease

  • #2
    Incontinence is not usually a part of IC, especially as bad as it is for you. I really think it would be a good idea for you to see a urologist. Hopefully your problem can be corrected. I think there's a distinct possibility you were misdiagnosed.

    I hope you are able to find a solution to your problem; it has to be extremely frustrating.

    Donna
    Stay safe


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    • #3
      Tirza, I think I would get a second opinion also. Maybe you can get more help with this problem, it sounds very frustrating.

      Hugs, Trishann

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      • #4
        Incontinence was part of the IC questioning my doctor gave me. He seemed to think it was related.
        That bruised feeling also is a part of it. It's not the kind of pain everyone has, but I have it as well as the stabbing, knifelike pains.
        I do think that it would be best to go to a specialist like ICDonna and Trishann suggested. Maybe they'd be able to help more with the incontinence.
        http://www.TheCraftyEwe.etsy.com

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        • #5
          Hi! I too believe you need to find a Uro who specializes in I.C. It made a world of difference for me.
          I suffer from incontinence also and have had a few procedures that's helped some, not totally. My Uro has another procedure he wants to try after I get the IC under control more.....which is happening now that I've started using MSM gel. I feel for you! Good luck! Roxie

          Double Spinal Cord Stimulator surgery 8/09
          Unsuccessful MiniArc sling surgery 12/07
          Dx'd Hypothyroid
          Dx'd Chronic Axonal Neuropathy & Myopathy
          June 2007
          Dx'd IC May 2006 (after suffering for 25+ yrs!)
          First Cysto 1979
          First Hydro 1981 (Many treatments since then!)
          Collagin"Durasphere" injections for urethra
          Gall bladder surgery Aug. 2004
          Gastric Bypass Dec. 2004
          Dx'd: Barrett's Esphogus July 2004
          Dx'd: Vaginal Atrophy 2005
          Bladder surgery 2000
          Dx'd: IBS 2000
          Hysterectomy (fibroids) 1999
          Laminectomy 1989
          Dx'd: Degerative Disk Disorder 1989

          For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
          I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

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          • #6
            I just wanted to you to the board. I'm sorry you're having so many problems with incontinence. The pain you are referring to may actually be a type of referred pain from the bladder. The pelvic nerves are in such a jumble down there that pain in the mons pubis may actually BE bladder pain. Of course I dont know this for sure, it's simply a guess. How were you diagnosed with IC? A cysto/hydro, potassium sensitivity test?

            I know that there are a lot of surgical procedures that they can do for women with incontinence, especially as severe as yours is. I agree with everyone else that you need a specialist as soon as you can afford to get to one.

            We're glad to have you here.....and I hope that you feel better very soon!

            Sandy
            *IC-- Summer 2004; PFD--October 2005
            *Fibro--Fall 2000; CFS-- Fall 2000
            *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

            Total Abdominal Hysterectomy--adenomyosis--9\08

            04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

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            • #7
              I want to thank all of you so much. I can't express how much it means to me to have people who understand how I feel and empathize with me. I was diagnosed with the potassium sensitivity test. When they put that stuff up in my bladder I about hit the ceiling. They, of course, didn't tell me what they were doing so I wouldn't be expecting anything and it would be a big surprise. And if I didn't feel anything it would mean I didn't have IC, but since I was clinging to the ceiling the doctor said it confirmed it. Is this correct? I know there is some other test that can be done but he said it was more invasive and not necessary. Thanks again to all of you.

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              • #8
                I'm glad that you have a firm diagnosis for the IC. Most people think that the pot. sensitivity test is a pretty defenitive answer. The good things about the cysto/hydro are that the doctor can inflate the bladder and see exactly what's going on in there to rule out other problems. At some point, especially if you have a procedure done for the incontinence, I would recommend having it done at the same time, just to let the doc have a look in there.

                Please ask all the questions you want/need to ask. We're always open round here!

                ps...do you take pain meds for the neuropathy? Just wondering if you did because they might be masking any actual bladder pain. Not that masking it is a bad thing...I surely don't want to feel that pain!

                Hugs, Sandy
                *IC-- Summer 2004; PFD--October 2005
                *Fibro--Fall 2000; CFS-- Fall 2000
                *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                Total Abdominal Hysterectomy--adenomyosis--9\08

                04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                Comment


                • #9
                  I have to agree with Sandy about having the cysto/hydro done. It will tell you if you have inflammation, pinpoint bleeding, ulcers, stiff bladder, and they do a biospy to rule out cancer. Just having the cysto. does not tell you all of this. Did your doctor tell you if you have a mild case or a severe case of IC?

                  Trishann

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                  • #10
                    Thanks for your continued help for me. I will definitely have more tests like the one you all are talking about as soon as I am financially able or get disability. Also my doctor didn't say if my case was severe or mild. At least I don't think he did, I was so dumbfounded at what he told me about the disease I may not have taken everything in. (and the shock of the pain from the potassium was still with me). I love hearing from you all. Thanks again.

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