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Do you think this is IC? (long, lots of Qs!)

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  • Do you think this is IC? (long, lots of Qs!)

    I went to the ER with severe lower abdominal pain in October, and they found I had a bad UTI, the first one I'd ever had. I never did have pain while voiding, but my bladder itself hurt a great deal.

    I was then treated for 3 subsequent UTIs, all of them painful but only 2 for which urine was actually taken. The last one, they did a culture to see what type of bacteria we were dealing w/--and found only gram positive (most UTIs are gram-negative bacteria). Gave me abx anyway. I took them, and the pain left then returned. This time, the culture showed NOTHING, totally clear.

    I have an appt with my ob on Tues., Feb 1. What kinds of tests do they need to do? How can IC be diagnosed, and will I have to go to a urologist? I've already (just today) cut out coffee, and I've been off soda for a few wks. We've had a sulfur taste in our well water for a couple of months, so I've been squeezing lemon into most of the water I drink from home--but I'll be calling the water treatment guys TODAY! No more putting that off, if this is IC!

    Honestly, I think the coffee may have triggered this, if it is IC. I never drank it much till this past summer, and I got hooked on the rich, dark coffees from South America...and now I'm an every-morning coffee drinker. Well, I was. I'm also a vegetarian, and I had anorexia/bulimia about 13yrs ago, and I worry that having to further restrict my diet now will trigger those pathologies again.

    Ah, well. I overcame that, I can overcome this. Right? Right.

    Anyway. Do you all think this could be IC?

    ETA---Other than the bladder pain, I don't really have other symptoms. I don't have frequent urgent voiding, although I have noticed that I NOTICE it sooner when there is a smaller amount of urine in my bladder, if that makes sense.
    --Josie

  • #2
    Read, read, read and educate yourself. There are different ways of diagnosing. Is your OBG familiar with it at all? That is the first question to ask. Sometimes it is diagnosed just with symptoms alone. It could be a lot of things, don't get too stressed out about it. Hopefully it is not. Let everyone know how you make out. Jill, wife of Bob

    Comment


    • #3
      Originally posted by bob04951 View Post
      Read, read, read and educate yourself. There are different ways of diagnosing. Is your OBG familiar with it at all? That is the first question to ask. Sometimes it is diagnosed just with symptoms alone. It could be a lot of things, don't get too stressed out about it. Hopefully it is not. Let everyone know how you make out. Jill, wife of Bob
      Thanks Jill! But I must know---I've been reading about other things that it could be causing this pain, and I'm not much encouraged by those, either ("Oh, yay, it's just bladder cancer!" ). What else could it be, that would be a "better" dx? Thanks again! I so appreciate your time.
      --Josie

      Comment


      • #4
        If your gyno is not able to answer your questions then you need to see a uro. Frankly, maybe you should see one anyway just to ease your mind if it's not IC or start treatment if it is. Good luck.
        Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
        Lexapro-20 mg
        Aciphex
        Ambien-as needed
        Percocet-7.5 up to 3 per day as needed
        Valium-10 mg x2 per day
        Phenergan-1 at night
        Prelief w/everything
        Now recovering from acute pancreatitis

        Currents treatments that help somewhat:
        Heating pad
        Hot baths
        Ice
        Being VERY still while lying down with legs elevated

        Comment


        • #5
          I was having some bladder issues afew months ago. Had a bladder infection and then it went away after the antibiotics but kept having this urinary hesitancy issue. Anyways, my OB tested me for Bacterial Vaginitis and yeast of which I had both ( probably from the antibiotics I was on ). Once I finished the BV and yeast treatment my urine issues went away. They also tested me for all STD's. It's worth looking into and easy to fix.

          Comment


          • #6
            Your obg can certainly test you for bacterial vaginitis and yeast, (though usually there would be definite signs of either of those with discharge). Unless your obg is super educated I find they don't cross over into that urology field much. Doesn't mean yours does not but I agree you might want to go see a urologist or a urogynecologist (a doctor who specializes only in womens pelvic issues) and would be very aware of IC.

            Also, the lemon water could be causing terrible symptoms so quit using lemon and switch to bottled water until you can figure out whats going on with your well water. I am on highly mineralized well water and never drink it even though we have both a water softener and a filtration system to get rid of the sulphur smell. We had an RO system put in but those are expensive and bottled water can work as well.

            IC is diagnosed both by symptoms and tests together. There are two main tests:
            1) in office cystoscopy where they look at your bladder with a camera and fill it using steile water. This only catches the worst cases but does allow them to rule out other conditions like cancer etc.
            2) cystoscopy with hydrodistention under anesthesia performed at the hospital. Basically the same as #1 but they stretch your bladder to an uncomfortable amount which is why you have to be put under and look at it with the cameras again. This catches pretty much any case of IC. With milder cases sometimes the doctor will put this off and try treatment instead (this is what my doctor has opted for me thus far).
            3) Potassium test - in office procedure during cystoscopy where they put a potassium mixture in your bladder briefly. It really hurts if you have IC. I don't know how many doctors do this test as it causes alot of pain if you have IC.
            If I'm missing any more tests, maybe someone else can chime in.

            Good luck!
            Cindi


            Gelnique for frequency/urgency - works great
            Macrobid after sex
            Prilosec, continuous birth control pills
            synthroid .088mg, mucinex-d, restasis

            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

            IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
            AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
            AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
            Great treatment flowchart on page 19 of the pdf

            Comment


            • #7
              Originally posted by cmclien View Post
              Your obg can certainly test you for bacterial vaginitis and yeast, (though usually there would be definite signs of either of those with discharge). Unless your obg is super educated I find they don't cross over into that urology field much. Doesn't mean yours does not but I agree you might want to go see a urologist or a urogynecologist (a doctor who specializes only in womens pelvic issues) and would be very aware of IC.

              Also, the lemon water could be causing terrible symptoms so quit using lemon and switch to bottled water until you can figure out whats going on with your well water. I am on highly mineralized well water and never drink it even though we have both a water softener and a filtration system to get rid of the sulphur smell. We had an RO system put in but those are expensive and bottled water can work as well.

              IC is diagnosed both by symptoms and tests together. There are two main tests:
              1) in office cystoscopy where they look at your bladder with a camera and fill it using steile water. This only catches the worst cases but does allow them to rule out other conditions like cancer etc.
              2) cystoscopy with hydrodistention under anesthesia performed at the hospital. Basically the same as #1 but they stretch your bladder to an uncomfortable amount which is why you have to be put under and look at it with the cameras again. This catches pretty much any case of IC. With milder cases sometimes the doctor will put this off and try treatment instead (this is what my doctor has opted for me thus far).
              3) Potassium test - in office procedure during cystoscopy where they put a potassium mixture in your bladder briefly. It really hurts if you have IC. I don't know how many doctors do this test as it causes alot of pain if you have IC.
              If I'm missing any more tests, maybe someone else can chime in.

              Good luck!
              Thank you, this helps tremendously. I want to go in Tues. knowing the options and somewhat in charge of what they do to me!

              Re: well water--mineralized well water is bad for IC???
              --Josie

              Comment


              • #8
                Originally posted by JosieWales View Post
                Thank you, this helps tremendously. I want to go in Tues. knowing the options and somewhat in charge of what they do to me!

                Re: well water--mineralized well water is bad for IC???
                Oops, I actually meant quit drinking your water with the lemon which is very bad for IC. As far as mineralized water goes, I think you'll hear both opinions here. Some people swear by spring water, no minerals. It wouldn't hurt to test the theory by only drinking spring water for a few days.

                I forgot to mention your OB can palpitate your bladder from within during a pelvic. People with IC often have pain when their bladder is touched at all during a pelvic, same with inserting a tampon and having it rest against the wall where the bladder is. Both of those cause me pain.
                Cindi


                Gelnique for frequency/urgency - works great
                Macrobid after sex
                Prilosec, continuous birth control pills
                synthroid .088mg, mucinex-d, restasis

                Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                Great treatment flowchart on page 19 of the pdf

                Comment


                • #9
                  Ah, gotcha. Thank you! I'll def. ask about palpitating, too. Sounds like fun! <snort>
                  --Josie

                  Comment


                  • #10
                    Josie, I see you are in the midwest. If you are around Chicago, I know a fantastic urogynecologist if you need one.
                    Cindi


                    Gelnique for frequency/urgency - works great
                    Macrobid after sex
                    Prilosec, continuous birth control pills
                    synthroid .088mg, mucinex-d, restasis

                    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                    IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                    Great treatment flowchart on page 19 of the pdf

                    Comment


                    • #11
                      Hi!

                      I'm in chicago, can you please post the name of the urogyno? I have endometriosis and was having some issues with urinary hesitancy during my period. I've been sorting this all out because I also have an L5 that is out of alignment ( working with chiro to get it back into place ). Only when I'm having my period on my worst day for pain I will have this issue where it's very hard to pass the urine out. I'd like to have the name of someone to see next if this doesn't start to improve. I'm very sure I don't have IC. I have been charting all of my potty habits for 3 months now and I'm averaging about 6x a day for peeing. I'm under the impression that those of you with IC have urgency and pass urine alot thru the day which I'm not experiencing either though sometimes I have a sensitive bladder and can feel it ache from time to time.

                      Comment


                      • #12
                        Originally posted by endogirl2 View Post
                        Hi!

                        I'm in chicago, can you please post the name of the urogyno? I have endometriosis and was having some issues with urinary hesitancy during my period. I've been sorting this all out because I also have an L5 that is out of alignment ( working with chiro to get it back into place ). Only when I'm having my period on my worst day for pain I will have this issue where it's very hard to pass the urine out. I'd like to have the name of someone to see next if this doesn't start to improve. I'm very sure I don't have IC. I have been charting all of my potty habits for 3 months now and I'm averaging about 6x a day for peeing. I'm under the impression that those of you with IC have urgency and pass urine alot thru the day which I'm not experiencing either though sometimes I have a sensitive bladder and can feel it ache from time to time.
                        I don't have urgency either, not do I void more often than normal, I don't think. Man, it hurts, though. What do you think it is, for you?
                        --Josie

                        Comment


                        • #13
                          Bladder cancer is typically not painful, but a lot of blood and cells n urine. Read about it before you go. You don't want to get diagnosed with something you don't have, and hopefully you will not have IC either. Good luck to you girl, let everyone know how you make out. Jill, wife of Bob

                          Comment


                          • #14
                            Well, I have endometriosis so it could be that. I also slipped down the last 4 stairs in my home sometime in July/August. When I get my period I have a hard time passing the urine. I just sit there and struggle to push to get it out and eventually it comes but I feel like I'm going to bust a vein in my head doing so. Back to the slipping down the stairs part - I am seeing a chiropractor and we did an x ray which showed my L5 was crooked. The L5 he said is tied to the bladder as well so it's possible when I'm on my period, I have inflammation, that causes the L5 area to inflame and then the other problems happen. This is all just a guess. I also had bacterial vaginitis and yeast of which I didn't have the more common symptom of the nasty discharge. After I took the BV treatment the urine issue went away as well. I felt like I had a UTI, no burning, just a feeling like I needed to pee and the gyno said that bv can cause that feeling because it's around the urethra. Most recently, I was taking an anti inflammatory for the L5 and sciatica type symptoms it was causing and that helped me alot during my last period so it's still a toss up. I'm just doing trial and error. I guess I'm not educated on IC because I thought if you have IC you are going pee 15-30 times per day, have major frequency like you might pee your pants getting to the toilet and the bladder pain all the time but I think I might be wrong. ICers please correct me so I can learn more.




                            Originally posted by JosieWales View Post
                            I don't have urgency either, not do I void more often than normal, I don't think. Man, it hurts, though. What do you think it is, for you?

                            Comment

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