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  • Anyone else have to pee right after they just went??

    Hi Ladies.
    I was just wondering if any of you feel you have to pee right after you just went? This has been happening to me for a while now. It happened a few times a couple weeks ago when I had a UTI. But now it is happening all the time. I am sure I am retaining urine and not emptying my bladder all the way because I can pee, and then not even 5 minutes later I can go another ounce or two sometimes. I can even still feel like I have to go.

    I tried telling the nurse this, but she just said that it was because if the IC and tha I need the installations, which I am getting my first Friday. My pain feels like it is right at the top of the bladder opening. It feels like a constant severe deep burning feeling along with cramping. I also feel like I have to pee in the pelvic area, even after I just went.

    I swear dealing with these doctors, or should I say nurses since I can never get my doctor to call me back as she is soo busy, it gets really frustrating. This is so uncomfortable.

    Do any of you ever go pee, and then can get more out a few minutes later? I have tried all that relaxing stuff, but it does not really do much. I mean when I have to pee, I have no problem with starting to go. It comes out, just that after I get out about 6 to 8 ounces, that is it, nothing else comes out. I have been keeping a pee diary, but not sure what good that is doing. I try and drink alot each day, but I feel that I dont pee as much as I should be. I mean somedays, I would pee alot, but then other days like the last few days, I still am drinking alot, just not peeing as much I think I should be. I keep wondering if I am just retaining some of the pee in my bladder. I know actually that I am, but I am not sure how much though. I know it is normal for everyone to retain some urine, just I have no clue how much I am retaining actually. I had my post void checked a few weeks ago, but at the time it was fine and I was not retaining any at that particular time.

    This is so frustrating. especially when you cant seem to get through to your doctor or the nurses. It is like I am playing ping pong with the nurse. She calls me, I have to give her a message, she tells the doctor, then comes back and talks to me....etc. It is a joke. It would be much easier to just talk to the doctor myself. Anyhow, just wanted to see what you gals thought.
    Jen

  • #2
    story of my life

    to me...thats what a flare is.
    peeing all the time like that.

    it will pass
    then it will come back
    then it will pass..


    its usually brought on by something i ate/drank
    Quit ELMIRON due to hair loss
    Cystoprotek ROCKS!

    find me on FACEBOOK -
    search my email [email protected]

    Current Meds:
    AM Cystoprotek & ATARAX 50mg
    Dinner CYSTOPROTEK
    PM Elavil 25mg

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    • #3
      Oh yes all the time and for 2 yeas none stop!
      It drives me crazy running to and from the loo not knowing what is going on! Then is goes...then comes back etc etc!!!
      Started with symptoms 2004 after a severe infection.
      Was diagnosed with IC Feb 2006 after cystoscopy.
      Diagnosed with vulvodyina and PN in july 2006.
      Dignosed with ME and IBS Oct 2006.
      Currently taking Amytriptaline 50mg, regular pain killers and birth control!
      Also doing IC diet and regular use of heat packs.
      Still struggling with IC and controling my symptoms so looking for some help

      also recently had abnormal pap, CIN III and just had LEEP done 2007

      Comment


      • #4
        One thing that might help is to stand up part way after you urinate, then sit back down --- sometimes that will help to get that last little bit out. Just remember to avoid straining.

        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.

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        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


        • #5
          Yes like the others said this is the way a flare starts.. I am like kjd I went like this for almost a year until my GYN put me on elavil, What is making you have that sensation is a nerve pain.. Your bladder is very sensative and has alot of nerves in it.. I have found that when I am having a flare to drink more water I know this sounds crazy but it will dilute your urine and stop the burning you are feeling..
          Good luck and God Bless You
          Hugs
          Ronda

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


          Link to Patient Handbook:
          http://www.ic-network.com/handbook/

          Diet Reference Sheet:
          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



          ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          Comment


          • #6
            Thanks ladies for the replies.
            Thanks for the tip Donna. I went pee and then got up and had to walk around for a minute, but was still only able to get only one more ounce out, but it still feels like I have more in there.
            I do drink alot af water, usually 2 to 3 liters a day. I am thinking maybe I should not drink so much especially if I am retaining urine and not emptying my bladder completely which is what feels like is happening.
            When you ladies talk about flares, I am guessing you have times when you feel better. I am always in exteme pain with this lately for the last few months. I seldom have a day that I am not in alot of pain or not in a flare. Is it normal for a flare to be continuous all the time. ALso I am worried that by me not emptying my bladder all the way, I will end up getting an infection. This stinks and the doctor I have is really no help. All I get are the nurses who are no better really. They just keep saying to wait until Friday until I do the instillation. Thanks again for all your replies.
            Jen

            Comment


            • #7
              One thing that helps me get the rest out is to wipe with clean TP a couple of extra times. For some reason, that seems to stimulate my urethra to release what is still there.
              Sharon

              Shopping??? Did someone mention shopping? I'll get my hat... ;-)

              Where I can be found most days.



              Link to the ICN Patient Handbook:
              http://www.ic-network.com/handbook/

              Link to the IC Diet:
              http://www.ic-network.com/diet/


              IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              Comment


              • #8
                Jen another thing that causes retention is PFD.. Heres some info on it..

                What is PFD

                --------------------------------------------------------------------------------

                What is pelvic floor dysfunction (PFD)? This is non-neurogenic, uncoordinated behavior of the pelvic floor musculature. This is not like Parkinson’s or multiple sclerosis. This is a person who has no obvious neurological disease and the muscle function is uncoordinated. normally the bladder sits in a funnel of muscle. When one voids, the muscle of the bladder contracts, thereby forcing out urine. At the same time, the muscles of the pelvic floor, the levator muscles, and the muscles of the GU diaphragm have to relax. That is the normal process of voiding; it is a complex neurological mechanism. When this happens, there is a good stream of urine. In a patient with PFD, the bladder contracts and the muscles open up, but they are in spasm. They are not working properly. They open and urine does come out, but this can lead to disruptive symptoms.

                The symptoms of PFD are similar to IC. A patient with IC typically has pelvic pain, the pain often worsens with bladder filling. They usually have day and nighttime urination, and their symptoms are affected by foods, in many instances. The patients who have PFD have similar complaints with a subtle difference (keep in mind that PFD can coexist with IC): IC should not normally result in a poor urinary flow rate. One exception is that if you are urinating tiny volumes each time, you will never be able to generate a good force of the urine stream. If you still have a poor urinary flow rate, that is suggestive of something else going on. In a male, you have to consider the presence of the prostate gland, which can also be causing problems. The first focus of attention in a male is typically on the prostate as a cause of blockage.

                Constipation can also exist in a patient with PFD. Constipation occurs for the same reasons a patient will have problems with urination; the patient tries to push out the bowel movement, but the muscles around the anus and the pelvic floor muscles are contracting at the same time. The stool sits in the rectal vault.

                There are two different types of complaints regarding intercourse: either there is terrible pain during intercourse because the penis is coming directly into the rigid muscles, or there is discomfort the day later. This is commonly seen in both IC and PFD patients.

                Many patients have the sense of incomplete bladder emptying. They feel like they have to void again as soon as they are finished. Some patients cannot empty their bladder. Usually patients who have just PFD and no significant IC do not have nighttime frequency. They just have frequency during the day. There is also a typical history of straining with urination. It is interesting to see the number of patients who say they don’t strain, yet during testing that is performed, they are straining quite a bit.
                __________________
                Hugs
                Ronda

                ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                Link to Patient Handbook:
                http://www.ic-network.com/handbook/

                Diet Reference Sheet:
                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                Meds I have Tried:
                Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                Lexapro< Bad reaction to this med!
                Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                Dx With IC in Nov 2006 with Hydro/Cysto
                Hydro/Cysto Caused Bladder to Rupture.

                Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                Comment


                • #9
                  Thanks for that info on PFD. It is possible I have PFD I suppose. It is just weird because, I have no issues when starting to pee. It comes out fine, just that it reaches a certain point and then just stops and I cant get no more out. Really weird.
                  I know when I am retaining because there were times when I could pee out like 12 ounces and feel empty, but lately I cant get out anything over 8 ounces at a time now. And at that point I really have to go baaaaad.
                  My hubby suggested that maybe trying to hold it a little longer then maybe I would be able to get more out because of the vloume. This is just the worst feeling. Thanks again for replying.
                  Jen

                  Comment


                  • #10
                    One thing that I will do, especially at night so that I won't have to get up again, is once that I'm done, is to lean forward and get up just a little bit, and then sit back down. (my friend who has one kidney told me to do this and it seem to help-- I get the rest of it out).

                    Comment


                    • #11
                      It sure is the worst feeling, jen. That was how my flares were all the time - it's an awful feeling.

                      If I was concerned I might be retaining, and my nurse/doctor was not on board with that, I would probably keep a voiding diary where I write down when I peed and how much I peed each time for a few days. That way you have something black and white they can look at to help you figure out if it is just a flare or if something else might be going on. For me - it always felt like I had to go and I wasn't retaining, but some ICers do retain and it's worth checking out if your gut feeling is that that is what's going on.

                      Another thing - I don't like to deal with my uro's nurses at all. My family doctor? His nurse is great. But when I need to run something by my uro I leave a message asking if he can call me back whenever he has time - which might mean the next day, but I have a concise list of questions down on paper to ask him so I can be as quick as possible while still hitting my main points.
                      Kim

                      Diagnosed August 2001

                      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                      *****************************

                      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                      Comment


                      • #12
                        Hi Kim.
                        I have been keeping a diary of what I drink and how much I go. I have no clue as to what would be considered normal though. There are some days I pee more than I drink and some days I pee less than what I drink.
                        I already know that I am retaining some urine as I can pee more out shortly after I go at times. As far as dealing with the nurses, well I have no choice in that matter really. I have to leave a message with the nurses in order for it to reach the doctor. It is ridiculous.
                        It does seem that I can only lately get out no more than 9 ounces of pee at a time though, where a couple weeks ago I could get out 12. I am not sure what amount is considered normal or not as I really think it depends on how our kidneys are working. But I do feel like I am retaining urine in my bladder after I pee.
                        Jen

                        Comment


                        • #13
                          I have this symptom quite often. It is soooooooo frustrating it makes me want to scream. When I am flaring real bad I am only able to pee anywhere from a few drops to about 3 or 4 ounces. Ten minutes later I am back on the toilet again. For me lately I rarely reach the 9 ounce level. I am am kind of envious of that. LOL!

                          Take Care
                          TexasHoney
                          TexasHoney

                          Let's keep praying for a cure.
                          IC Symptoms began in early 2001
                          Divorced : Sept 2002 (Partly due to IC)
                          Diagnosed with IC in April 2004
                          Most recent injury - Rupurtured Left Achilles Tendon
                          Wed Jan 28 2009
                          (Ice Storm Accident)
                          2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
                          Other Injuries
                          Broken Left Ankle - July 2004 ( fell off ladder)
                          Broken Left Ankle (Again) - May 2005 (car accident)
                          Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

                          CURRENT MEDS
                          Elmiron, Pyridium

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                          • #14
                            I've been having some of these same problems as well. I got a yeast infection and that just seemed to throw everything out of whack. But with me I feel like I don't have any urine left but then like Sharon, I would wipe a couple of times, actually I was more like dabbing because I was sore and when I would dab on my urethra more urine would come out. It really freaks me out because I can't even tell that there is more in there and then all the sudden there it is. I also have noticed that when I stand up and start washing my hands, the sound of the water makes me feel like I have to go again. This really drives me crazy when I'm at work. I can't wait until my uro appt on Friday!
                            Christine



                            I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                            1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                            2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                            I have tried every oral medication as well as rescue instills and DMSO.

                            I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                            Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                            Also proud mom to the best Bullmastiff on earth, Claus

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                            • #15
                              Me too Lesa, I envy you. I wish I have the courage to have this surgery but I just can't bring myself to do it.

                              Sending hugs, Trishann

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