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  • I would be thankful for any advice you might have for me.

    I am a man in my mid forties. For the past three weeks I have been feeling a persistent urge to urinate that doesn't go away after urination. There is no pain or blood. I've had an ultrasound of my bladder and prostate. It found that the prostate's "central zone is slightly prominent in size, and protrudes slightly into the bladder". The prostate wasn't found to be enlarged. Also "No significant postvoid bladder residual volume (15 cc)."

    I've had a urine test done, and it hasn't revealed an infection.

    I began taking Tamsulosin/Flomax two days ago. I began taking Aloe Vera gel pills at the same time. The past two nights my symptoms were noticeably better. Yesterday during the day my symptoms were a little better. In an attempt to figure out what it is that is reducing my symptoms, today I haven't taken Aloe Vera pills in the morning and it so happens that my symptoms during the day today are bad again. I am not sure whether my improvement at night was due to Flomax or due to Aloe Vera...

    I read that to be diagnosed with IC, one needs to have the symptoms for at least 3-6 months. Is it the case that there is Still a chance that these horrible symptoms might go away? What else could it be besides IC? What tests should I ask my doctor to do next?

    Several years ago I began experiencing ringing in my ears/Tinnitus. I have been active on tinnitus forums, making over a thousand posts, many of which helped the newbies to stop panicking. Tinnitus often fades and mostly goes away after 2-3 years. I realize that this is not the case for IC. Is there still hope for those whose symptoms have lasted for less than 6 months?

    As you can imagine, I would be extremely grateful for any advice, information, or tips you might have for me.

  • #2
    p.s. Normally, I don't drink alcohol. Back in December I discovered fruit wine. I bought a bottle each of blackberry, raspberry, and blueberry wine. I consumed a glass or two a day for several days. My symptoms began at around the time I was finishing up the last of that wine. Drinking that wine might have been the last straw that gave me IC - I have been eating a lot of cocoa powder (about 1-2 tablespoons a day for several years), large quantities of tomatoes, etc. The summer of 2020 I had been suffering from insomnia, and I would add 3-5 teaspoons of instant coffee to a cup of boiling water. On two of the days I had a total of 8 teaspoons of coffee in my coffee...

    Of course I had eliminated all of those acidic foods from my diet now.

    Comment


    • #3
      First of all, I'd like to say to the IC Network.

      It is not necessary to suffer for six months before being diagnosed. It sounds like you are working with a urologist --- and I do have some suggestions. First, I suggest you give the IC diet a try for at least several weeks to see if that helps. You already have a start since you've omitted some of the things that are a problem of a lot of ICers. By the way, even though those acid things can irritate an IC bladder, I doubt they actually cause IC --- if they did, a huge percentage of the population would have it.

      Keeping a detailed diary can help with diagnosis --- jot down times, everything that goes in your mouth, urinary frequency, activities, pain levels. When it feels like you might have an infection, it's good to be checked to be certain, but that can also be an IC symptom so it's important to talk to your doctor when that happens.

      If you're still feeling irritation, I suggest you mention IC to your urologist.

      Please feel free to post questions --- and let me know how you are doing.

      Sending well wishes,
      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
        Thank you, Donna

        Have you ever heard of cases where someone gets the persistent urge to urinate symptom for weeks (with no infection or prostate enlargement present) and then experiences it going away?

        Thank you!
        Last edited by BillB; 01-19-2021, 11:39 AM.

        Comment


        • #5
          I haven't specifically heard of any, but that doesn't mean there are none. It's probably possible to have an allergy problem arise --- if that's the case, you might be able to identify it by keeping the diary. I have also heard of men who couldn't tolerate knit undershorts, but if that would probably have shown up sooner. You might want to try thinking of anything different you have done recently, such as cleansing products (personal or laundry). Exercises? Clothing changes? Strained muscles or injuries? (I'm trying to think of possibilities).

          Do you know how much your bladder will hold? Reduced capacity doesn't always mean IC, but it's one of the symptoms that are usually considered. Normal bladder capacity when awake is around 500 cc (about a pint), but your normal could vary either way. Under anesthesia it can double that.

          I hope you have an answer soon --- not knowing is the worst time.

          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


          • #6
            Thank you.

            Comment


            • #7
              I felt normal for about 12 hours. But now it is 100% back...

              Is it the case that one could have IC and not feel pain (and just feel a full bladder sensation 24/7)?

              By the way, my ultrasound showed that my bladder had a normal volume.

              My body got cold (including my lower belly) for about an hour before the onset and also before today's onset. Might that possibly have something to do with it?
              Last edited by BillB; 01-20-2021, 10:08 PM.

              Comment


              • #8
                Even though many ICers do have reduced bladder capacity, not everyone does. Is that urge to urinate uncomfortable? It does sound like you are feeling at least some pain.

                I've never had a cold feeling with my IC --- my temperature does vary some during the day, but I think that's normal. Have you had a cystoscopy? In my case, my bladder appeared to be normal and healthy until it was stretched under anesthesia, but sometimes an IC bladder will show some inflammation.

                Have you started a diary so you can look at the past day or two to see if you can see something that might be an irritant?

                I know it's frustrating --- in my 46 years with IC, the absolute worst time was before I had a diagnosis.

                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


                • #9
                  Thank you for your reply.

                  >Is that urge to urinate uncomfortable?

                  It is a regular urge to urinate.

                  >It does sound like you are feeling at least some pain.

                  The only pain is psychological pain.

                  >I've never had a cold feeling with my IC

                  The cold isn't a Symptom, it is what I suspect might have caused the symptom of persistent urge to urinate. I had been sitting in a room that was somewhat cold. The upper part of my body didn't feel cold, but the lower part of my body felt cold.

                  >Have you had a cystoscopy?

                  Not yet.

                  I have been eating the same food on my bad days and on my good days...

                  Comment


                  • #10
                    Is the urge still there right after urination? That's one of the worst symptoms of IC. It does sound like IC is a distinct possibility. Do you have an appointment with your urologist? I think it would be a good idea to mention that you have symptoms. If you scroll to the top of this page and click on "Home Page" --- then do a search for symptoms, you can compare and share those things that match what you are experiencing.

                    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


                    • #11
                      >Is the urge still there right after urination?

                      Yes. That's what got my attention...

                      > Do you have an appointment with your urologist?

                      I saw my family doctor earlier today. He told me that I will be able to see a urologist a month or two from now.

                      > If you scroll to the top of this page and click on "Home Page" --- then do a search for symptoms

                      Thus far, my only symptom is the persistent urge to urinate...

                      Comment


                      • #12
                        Last night had been the worst night ever. The first sleepless night.

                        It is strange that cystectomy (removal of the bladder) is said to not help with IC symptoms. I can't see how it could possibly not help with My symptom (persistent urge to urinate).

                        Comment


                        • #13
                          In some instances it does eliminate IC symptoms. But any time there is an organ or limb removed, it's possible to have phantom pain. The nerves don't recognize that an arm, leg, bladder, are gone. It can take a long time for the phantom to go away.

                          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


                          • #14
                            I forgot about the phantom pain...

                            I see the guidelines state that one's symptoms have to last for at least 6 weeks.

                            Also, I found out that an ultrasound won't reveal small tumors. I will attempt to get a cystoscopy at a private clinic next week. I am quickly running out of the possible diseases that might be producing these symptoms.

                            My urine test showed no signs of an infection. I wonder whether there are other (more sophisticated?) tests out there that I should be asking my family doctor about that might reveal that I have an infection, after all.

                            The ringing in the ears tends to fade for many sufferers. Is it the case that with IC, in the long run IC normally ends up being at the level of discomfort that one has during one's first few weeks? I realize that IC has flareups, and it looks like I am in the middle of one right now. Is it the case that for a person with IC, the flareup 20 years after the onset will be similar to a flareup early on?

                            Thank you!

                            Comment


                            • #15
                              IC can worsen for up to five years --- in my own case, the IC hit like a bomb --- at that time (1975) about the only way to diagnose was by hydrodistention --- it's how I was diagnosed and it gave me two years without symptoms. It doesn't help everyone, but I'm fortunate to be in the group who experience remission. I definitely have to avoid my diet triggers, but feel good most of the time. When I had my first hydrodistention, biopsies helped confirm the diagnosis.

                              For me, my IC has not changed in the 46 years since diagnosis --- I feel good unless I get careless with diet. Back in my pre-IC life, I loved a drink called POG (pineapple/orange/guava). I hadn't seen any for a long time and a few weeks ago I spotted some, bought it and tried a glass --- HUGE mistake. It took several days to come out of the flare. It was a valuable experiment --- it let me know in uncertain terms that the diet is a permanent thing for me.

                              If you opt for a cystoscopy, you might want to ask about biopsy.

                              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

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