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  • #1

    Leaking urine?? Please read....

    Hi all
    I have had IC for about 4 years now, but over the last 6 months I have noticed yet another wonderful symptom of IC. I noticed that every time I pee, even though I can spend 5 minutes wiping...I still stand up & leak urine! I can hold my pee, but it seems that no matter how many times I pee, wipe, etc...there is still leakage when I stand up. I have taken to wearing a light pad most days to soak the excess up, but it is embarrasing because sometimes I can SMELL the urine on me. Needless to say it is affecting my life in a variety of ways:-(
    Is this happening to anyone else and if so, what are you doing to stop it??
    I have spoken to my urol. about this & he said that because my bladder is so inflamed there will always be a bit of leakage...now that doesnt make me feel ANY better. I am hoping someone out there has some advice to this embarrasing problem.
    Karen
    Currently Taking:
    20 mg Celexa
    fentanyl patch 12.5 mcg chgd every 3 days
    morphine IR 15 MG, up to 3x daily
    Xanax 1mg as needed (not taken daily)
    900 MG Oxycarbizine (mood disorder)
    300 MG Welbutrin
    Tizanidine 4 mg up to 20 mg daily as need
    Prevacid 30 mg
    Ambien as needed

    my heating pad is my best friend, use daily on my lower back & pelvic area
    blessed to be able to receive massage & Amma , along with Avazzia therapy 3x weekly

    Been diagnosed for 10 years now, consider myself pretty well versed in this disease & would love to help out with new IC sisters or brothers, feel free to message me.
    Tags: None
  • #2
    HI! Oh gosh.......I feel for you! I have fought incontience for years. I had the bladder sling surgery (that didn't help much) and the collagin injects around my urethra (that didn't help at all!) I use the Oxytol patch and that is suppose to help dry things up and help with bladder spasms. It makes me thirsty and I still have the incontinence. I too wear a 'lightdays' pad and hate every single minute of it. My Uro doesn't want to try anything else because of my IC and I sure don't want to make my IC worse with another bladder surgery. SOOO I put up with it and hate it! If you find a solution please let me know! 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:

    Comment

    • #3
      One thing that might help is to stand up part way after you urinate, then sit back down. I also will take the folded toilet tissue and hold it in place while I stand and for a few seconds before I drop it in the toilet and flush. That really helps get those last drips.

      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

      • #4
        Hi,
        I also have that same problem and it drives me crazy. I have to wear a pad too. I was told to lean forward at the end of urinating to get the last bit out or stand and sit again. My dr. prescribed Detrol but I haven't tried it yet.
        Nancy

        Comment

        • #5
          I have the exact same problems you have. I leak if I stand up, I leak if I I laugh, cough, sneeze, or hiccup. I also leak if I pick up my daughter(she is 6)the wrong way. My uro says my urethra and internal sphincter have failed. You can PM if you want.

          Hus,
          Barb
          (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

          [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
          :angel: IC Angel Volunteer Coordinator :angel:
          :) Contact me via PM or e-mail if you would like to help
          I have learned all about life in 3 words: It goes on! :D--Robert Frost
          PCOS 7/85
          RSD 7/94 :headbang:
          Endometriosis 9/98 :toilet:
          Antiphospholipid antibody syndrome 9/99
          Kidney stones--too many to count
          Factor V Leiden mutation 10/02
          IC 6/03 :evilsmile
          Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
          "Spirit is an invisible force made visible in all of life"--Maya Angelou
          "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

          Comment

          • #6
            When I started complaining of leaking my urogyno sent me for Pelvic Floor Physical Therapy. Not a pleasant experience but I don't leak anymore.
            I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

            DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.

            I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

            Comment

            • #7
              WEll at least I know I am not alone, not that it is a good thing:-( My uro. gave me some Enablex to try so I have taken that today to see if it helps with the constant peeing & leakage, so far nothing has changed since taking it. Still averaging 20 min. between peeing.
              I have tried the trick of leaning forward, even pushing on my belly to get every last drop. Then I stand up with tp between my legs to catch any OTHER drops...I still leak. I am only 32 years old, so needless to say, I am having some issues with this!
              Has anyone tried any pee stoppers (enablex, Detrol, etc...) that have actually worked???
              Karen
              Currently Taking:
              20 mg Celexa
              fentanyl patch 12.5 mcg chgd every 3 days
              morphine IR 15 MG, up to 3x daily
              Xanax 1mg as needed (not taken daily)
              900 MG Oxycarbizine (mood disorder)
              300 MG Welbutrin
              Tizanidine 4 mg up to 20 mg daily as need
              Prevacid 30 mg
              Ambien as needed

              my heating pad is my best friend, use daily on my lower back & pelvic area
              blessed to be able to receive massage & Amma , along with Avazzia therapy 3x weekly

              Been diagnosed for 10 years now, consider myself pretty well versed in this disease & would love to help out with new IC sisters or brothers, feel free to message me.

              Comment

              • #8
                My Physical therapist said no matter what, do not ever strain for those last few drops. I guess it tightens things up more and makes you have more retention the next time. She had me put my hands on my knees and pee until I was done then walk away. If your muscles are so tight that you can't do proper Kegals to stop the flow you may need therapy.
                I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

                DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.

                I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

                Comment

                • #9
                  Hey,

                  I also leak when I pee. (I've actually been thinking of posting about it myself so thank you for posting about it.) I have really enjoyed reading all the suggestions. I just wanted to say that in your thirties, you are not alone....I am ONLY 24!!!!!! The other day, I was talking to a coworker who is 60 and she was complaining about her body falling apart... I said "I know what you mean..." and she said "no you don't, you're young yet..." and I was thinking "Oh, but if you knew!!!!!"


                  So FRUSTRATING.... the pain/ frequency/ urgency is awful of course, but I've found the leaking to be SO ANNOYINGLY embarrassing!!!!

                  Comment

                  • #10
                    I leak after I pee as well! I have to wear poise pads now. No matter what I do(sit up, sit down, bend over etc.) I still leak. I have gotten use to it!
                    Meds I take:
                    Elmiron, Elavil, Vagifem- for IC
                    Albuterol, Flovent, Atrovent- for Asthma and lung problems
                    Paxil, Clonazepam- for depression and Anxiety
                    Atenolol- for rapid heart rate
                    Nexium- for Gerd
                    Levothyroxin- for Hypothyroidism
                    Lasix, Pottasium- for edema
                    Lipitor- for High Cholesterol
                    I coated aspirin
                    02 at bedtime

                    Comment

                    • #11
                      This has only just started happening to me. I finally have decided to go to the dr to see whats going on. Just when you get one thing under control, something else pops up I thought it was just old age creeping up on me.
                      I do feel sorry for the younger girls here getting this symptom. Hopefully there will be some answer that can sort it out in the future.
                      Rosalie


                      http://community.webshots.com/user/gypsyrose52

                      Comment

                      • #12
                        i have this same problem too!! i hate it!! i'm only 21, i feel too young for this! i have to wear pantyliners every day. it always seems especially bad in the morning and afternoon for some reason. its also bad if i'm nervous/excited/mad, etc. i don't know what to do. my urologist hasn't really offered any solution to this problem. it's just embarressing and frustrating! if anyone has any good suggestions, please pm me and let me know.
                        [SIZE="1"]
                        I've tried:
                        Ditropan
                        Detrol LA
                        Levbid
                        Prelief
                        Elmiron
                        Elavil
                        Vesicare
                        Cystoscopy/hydro
                        Sanctura
                        Enablex
                        dmso and heparin instills
                        Interstim

                        Comment

                        • #13
                          same problem!

                          I had the same problem, esp when taking ditropan. i had to stop taking it b/c i peed my pants AS I WAS STANDING UP after peeing. Plus i couldn't feel much benefit from it so i quit taking it.

                          with that said, it's been awhile since i was off the ditropan and i'm in the middle of a BAD BAD BAD flare up right now. so i tried the AZO (pyridium) which helped a little, but no a lot, and it turns your pee super orange. once my pee was dyed like this i noticed that i must be leaking a little all the time and not noticing it. b/c with the azo i'm noticing that i must be leaking out a few drops. enough to stain my underwear so i'm using pantyliners.

                          does anyone know why we leak?

                          is it weak muscles or overly tight muscles?

                          or just from the inflammation as one poster said?

                          kegels make me hurt worse......

                          and not to be gross but my husband says he thinks i'm really tight down there.

                          which makes me wonder if i would benefit from PT with the massage stuff down there.

                          has anyone had a PT do this to them? also, do they teach your spouse to do it for you at home?

                          again, sorry i'm not trying to be graphic or off-color. any advice would be appreciated.
                          Lee Ann
                          Current Rx Meds:
                          Atarax, Ditropan, Elmiron
                          Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
                          Hooray for babies!
                          Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
                          Didn't work for me:
                          Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
                          IC (Mod-Severe) since 1996

                          UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


                          My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

                          Comment

                          • #14
                            Hello,
                            I asked my uro about leaking, because I do too! He said it was part of IC, sometimes the bladder can't hold it (even though it feels like we are) and also due to bladder spasms. What I do just wear panty liners. I know it's not much, but I don't know what else to do either. I understand about the smell, makes me feel dirty or something. But as long as I have panty liners and change them often, the smell is okay. Sorry you have leaking too!

                            Comment

                            • #15
                              I have this problem as well even though I was diagnosed with a different type of cystitis (Eosinophilic Cystitis) very similar to Interstitial Cystitis. My Doctor said it was from the inflammation and bladder spasms. I don't know what to do about either. I take Enablex and that helps with the frequency and urgency but does nothing for the leakage. I wear pads as well.

                              Comment

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