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  • Maybe not IC afterall???

    I saw the urogynecologist today and he said that I should give the IC meds some more time because he feels that IC is the most likely culprit, but there is a chance this is endometriosis instead (or in addition to IC). The fact that my frequency/urgency symptoms came on so quickly after an antibiotic dose for tonsillitis perplexed him. I didn't have any bladder problems growing up except for the increase in urination with my periods. The fact that my periods were so horrible and then now my frequency/urgency problems made him think that I could have endometriosis. He said I'm the most interesting case he had all week because 1/2 of my symptoms are like endometriosis (the pain) and 1/2 are like IC (frequency/urgency). I don't have the "peeing razor blades" feeling. I don't have pain with urination or holding my bladder. I just get this horrible build in urge that makes me feel sick, but no pain. I only really have pain with running or with my period. In that sense I am more likely to have endometriosis, but the urgency/frequency is more like IC. So, if by July I'm not feeling better on these bladder meds (which should help IC because I'm tolerating Elmiron well), I will have to have an exploratory surgery to look for endometriosis. If there is nothing there and meds don't work, he said that I'd be the prime candidate for the Interstim because I don't have bladder pain (even on a physical exam, pressing on it just makes my urge to pee stronger, no pain with it). He said of course that would be the last possible step and we should exhaust all meds first... but if by July I'm not feeling better, then we look for Endometriosis. If that is negative, then we have to be creative in terms of IC meds before considering anything drastic. He is a wonderful doctor and I trust him completely. He's the best in town. When I don't take Ultram, I feel so much worse... so I'm afraid I'll become tolerant to it. I thought I'd use it lightly and skip the morning dose and just do my night dose but that set me up for one of the worst days I've had in a very long time.

    He is putting me on Lexapro due to the depression I'm getting. I hope it helps that, but also helps to dull the signal coming from my pelvis. Anyone have experience on that med?

    Well, thanks for reading. Just thought I'd let you guys know what is going on.
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

    [

  • #2
    I swear all of this stuff is so confussing. Pelvic pain can be so hard to pin point. When my gyn first told me that she thought I might have IC I thought she was crazy. In my case though when she did the pelvic and pushed on my bladder it hurt like hell. Then a whole bunch of light bulbs went off for me.

    I on the other hand I already had confirmed endo at that time so I had a totally different situation. It's very possible to have endo and IC a lot of people do. I actually had endo growing through my bladder a couple of years back and I seriously wonder if that surgery to remove the endo is what ended up causing my IC.

    I hope you get the answers you are looking for soon and start to feel better.
    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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    • #3
      well....I hope you don't have IC and it is just endometriosis
      Onset of symtoms November 1, 2006

      Diagnosed December 8, 2006 with cysto/hydrodistention... Gradual relief with elmiron around month two, keep feeling better and better. and then remission

      2008 Update...still in remission

      Diagnosis: IC
      Meds: Elmiron 300mg/day, hydroxyzine 25 mg 1x/day

      Myspace: Add me! Im always looking make new IC friends. http://www.myspace.com/45171133

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      • #4
        Born2 swim...
        I am telling you I had the same symtoms.. I didnt have the razon feeling when I peed and did not have pain when I held it.. So its still possible you have both....
        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.

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        • #5
          Christine,

          It's funny that pushing on my uterus doesn't hurt. Pushing on my bladder doesn't hurt (it just makes me feel like I have to pee more). I sure hope I don't have endo and IC. My doctor is leaning toward IC, but if the meds and diet doesn't help by July (over 3 months on Elmiron by then), he'll want to explore just to make sure it isn't endo either. He said I'm not typical either way, but there is obviously something bothering my pelvis and he'll get me fixed. He said with confidence that he is good at what he does. All his patients get improvements (which is why every doctor in town refers patients to him, which is also why his wait list is so long).

          So... which one would I rather have... sad that I'd take endometriosis over IC, but that doesn't involve a diet change! Chocolate helps endo right? LOL! To be honest with you, I have no idea which could be the case. I just know that the feeling to pee all the time is driving me nuts... and I can feel that my period is approaching... and I am not happy because each day is getting worse.


          Originally posted by GriffsMommy View Post
          I swear all of this stuff is so confussing. Pelvic pain can be so hard to pin point. When my gyn first told me that she thought I might have IC I thought she was crazy. In my case though when she did the pelvic and pushed on my bladder it hurt like hell. Then a whole bunch of light bulbs went off for me.

          I on the other hand I already had confirmed endo at that time so I had a totally different situation. It's very possible to have endo and IC a lot of people do. I actually had endo growing through my bladder a couple of years back and I seriously wonder if that surgery to remove the endo is what ended up causing my IC.

          I hope you get the answers you are looking for soon and start to feel better.
          [SIZE="1"][B]Be well, Alyssa :hi:[/B]

          [

          Comment


          • #6
            Isn't it sad that endo is considered not as bad as IC? I guess because it doesn't involve anything diet, that it is easier to stomach? Frankly I don't want either!

            Originally posted by BAM23 View Post
            well....I hope you don't have IC and it is just endometriosis
            [SIZE="1"][B]Be well, Alyssa :hi:[/B]

            [

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            • #7
              Are you saying that with endo you didn't have the razor feeling when you peed or pain with holding urine? Or are you saying you didn't have those things with IC? My doctor said I'm not typical either way, but he figures July is enough time to let the Elmiron to work before surgically looking for endo. Now, I'm going to have a hard time sticking to the IC diet if there is a possibility that I have endo and not IC (but I could still have both?). This is so frustrating!

              Originally posted by leelee88 View Post
              Born2 swim...
              I am telling you I had the same symtoms.. I didnt have the razon feeling when I peed and did not have pain when I held it.. So its still possible you have both....
              [SIZE="1"][B]Be well, Alyssa :hi:[/B]

              [

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              • #8
                I've been on Lexapro for awhile now and it's helped my depression and anxiety tremendously - and it unexpectedly helped my bladder, too!
                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

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                • #9
                  VM, That's good to know! I don't have anxiety, but my bladder situation is giving me depression and it's been too long. I though maybe it would interfere with my bladder signals! Ultram helps the most, so maybe something else affecting nerves will help me, but first and fore most, I need it to help my emotions. My doctor also wondered if it will help my nerve signals comeing from the bladder in light of the Ultram being the most helpful med...
                  [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                  [

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