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Does this sound like IC to you?? X Post

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  • Does this sound like IC to you?? X Post

    Hi everyone

    I wanted to get a few opinons on my "IC story"....I wanted to see if you think this is really IC or not..My uro wanted to do a hydro, but I am still recovering from a C-section so I can't do that for another month or more. Anyway, here is my story...

    About 20 weeks into my pregnancy is when it ALL began....The frequency and pain. Now, everyone was saying it was all because of the pregnancy is why I was expereincing agonizing frequency, urgency, and pain after urination (well, I am a month past partum and the symptoms are WORSE than during pregnancy!). I had, and still have, frequency to the point where I feel my bladder all the time. Even after I just use the bathroom...I get up, wash my hands, and this strange feeling is left in my bladder/bladder area where it feels bruised and then the feeling like I need to go to the bathroom comes back IMMEDIATETLY after I just went. I get no break at all!!! I get no relief. Also, sometimes I get this funny feeling in my urethra where it is very sensitive, sometimes spasms, and sometimes feels like a needle was inserted into it. It happens about half the time after I urinate, for no rhyme or reason. Would this whole experience be called a "flare"? It's been THREE months of this! I ALWAYS feel the need to urinate. It never goes away. (Actually, I recall one or two hours during the three months where I felt normal...) I always feel internally bruised in my bladder, and irritated. I also have pain on my pelvic "floor"...All near the vagina and lower-abdominal area. I seriously can't take it anymore. Does this all sound like IC to you? My uro thinks so, and my OB thought so during the pregnancy. I now take Elmiron (for 2 months so far), Ditropan XL (1 week), Cystoprotek, Desert Harvest Freeze Dried Aloe Vera, and I am going to push for Elavil and maybe Prosed/DS when I see my uro tomorrow.

    When I look back before this hell of a flare, I recall days when I thought I had a UTI, but it turned out to be nothing. It seems like they were "mini" flares or something. I can recall them all the way back to a year ago, maybe about 4 or 5 of them. Also, since 2005, I have had SEVERE UTI's with a lot of bleeding...Many of them that kept recurring. I have a feeling that these led to the IC and strange feelings in my urethra. I also have endometriosis, which I am told many patients with endo have IC I had a laparoscopy 3 months before my pregnancy and there is no endometriosis sites on my bladder at all. I thought maybe that was causing the frequency. It still crosses my mind that maybe there is scar tissue there or something from the surgery...I don't know. I was going to ask my gyno to do another laparoscopy to check it out, but he didn't seem to keen on the idea. We just reviewed my pics from my old laparascopy and he said "no endo on the bladder". I saw the pics and it was clean.

    So, in review, my symptoms are: Constant frequency, "bruised" feeling in the bladder and urethra, urethral sensitivity and spasms, and pain. Does this sound like IC? What OTHER conditions can cause these symptoms, if not IC??

    (Sorry this was so long! Thank you for reading!! )
    Diagnosed with IC April 2007
    Stage IV Endometriosis - April 2005

    Current Medications:

    Elmiron - 3x/day 100mg
    Elavil - 50mg at night
    Enablex - 15mg/day
    YAZ - Birth control to stop my period (Period = FLARE!)

    Additional Herbs & Supplements:

    Cystoprotek (6 pills/day)
    MSM/Glucosamine Capsules
    MSM gel (For Urethral Pain)
    Omega 3 Fish Oil
    Indole-3-Carbinol (For the Endometriosis)

    Too many medications for a 25 year old!

    I WILL conquer this disease!

  • #2
    I am so sorry you are going through so much pain. I defintely would let your uro. check and see if it is IC, it is a possibility and it sounds like a good chance of it but it is good to rule things out. I hope it is not IC.

    I am glad you are already taking medicine for it. It is really important to get treatment ASAP if you have it. You then have a better chance to get better results. That is good your doctor is looking to see if this is a possibility. Hope you found out soon.

    Take care, Trishann

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    • #3
      ...

      Welcome to the ICN and CONGRATULATIONS on your new baby ! ! !

      Sounds like IC to me.....

      Your symptoms sound exactly like mine. And I have definite IC and highly probable Endo. It is horrible to feel like this all of the time, I know. I don't have children and I can't imagine what it's like to feel like this and care for a baby at the same time.

      My guess is the Endo and the IC are working together to make your life miserable.

      When you have two diseases going on it can be difficult to figure out which one is causing pain.......ugh! So annoying!

      If you can get both the Endo and the IC under control you'll feel a lot better. For the Endo a birth control pill will help you feel better b/c the estrogen your body produces is making the Endo hurt. So if you take the pill it will balance out the estrogen with progestin. Hopefully, that is.

      You can see in my signature all the meds I'm currently on and they all help to control my IC pain. I think Topamax and Neurontin have helped a lot w/ the pain. The antihistamines definitely help w/ the inflammation. If you have a history of allergies I would strongly encourage the antihistamines. I also have vicodin (a narcotic) on hand for when I just can't take it anymore! Sometimes when the pain really gets out of hand I can't sleep----and for those times I have temazepam to help me sleep. I only use it when I truly need it though b/c it can be addictive. I rarely use these types of medicines though.

      Sorry I don't know if I actually answered your questions. But yes this sounds like IC.
      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


      • #4
        I am sorry to hear that you are not feeling well. It must be so hard to be having these symptoms and trying to care for a new baby at the same time. It is my understanding that IC is primarily a diagnosis of exclusion - so if your doctors can not find another cause for your bladder pain and frequency they might diagnose you with IC. Then they will try to find a treatmeant that will work for you. I am keeping you in my thoughts and hoping that you will be feeling better soon. Sending healing energy...linda.
        Sudden onset of UTI like symtoms on Dec 27, 2006.
        Diagnosed with IC on March 12, 2007.
        Current Meds: 50mg Elavil
        "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

        Comment


        • #5
          Originally posted by k.ozer View Post
          Hi everyone

          I had, and still have, frequency to the point where I feel my bladder all the time. Even after I just use the bathroom...I get up, wash my hands, and this strange feeling is left in my bladder/bladder area where it feels bruised and then the feeling like I need to go to the bathroom comes back IMMEDIATETLY after I just went. I get no break at all!!! I get no relief.

          It's been THREE months of this! I ALWAYS feel the need to urinate. It never goes away.

          I also have endometriosis, which I am told many patients with endo have IC I had a laparoscopy 3 months before my pregnancy and there is no endometriosis sites on my bladder at all. I thought maybe that was causing the frequency.

          (Sorry this was so long! Thank you for reading!! )
          The frequency/urgency feeling is exactly how I feel (getting up from the toilet, only having to return moments, sometimes seconds later). I don't have pain, but with my periods it is devestating (or running hurts). I have been having this since November, so I know what you mean about getting no relief! I'm still waiting for a normal day!

          My doctor said that women with endo get IC more often than not. My doctor also said that people with IC tend to have a higher rate of endo. Which comes first? Chicken or the egg idea. Since my symptoms are not going away (the feeling that I have to urinate every second of the day), my gyno is considering exploring for endo soon. I have an appointment at the end of July to talk with him. Elmiron has not helped (been on it for over 2 months) and none of the other IC meds have helped. They want my internist to give me Topomax. My gyno doesn't prescribe it, but has people on it and get some help with that "gotta go feeling" or pain. I figured, nothing else has helped (and one thing that did help a bit was Ultram and I have been having gastric problems from it). My point is, there are many things you can try, but try! Try the diet (which I know sucks). I am terrified to add things back, but I take Prelief before anything questionable. Coffee was the death of me yesterday/today. I haven't had it in months (tasted like heaven), but now I know to never touch it again.

          Good luck! I hope you feel better! If your doctors are thinking IC based on laparoscopy ruling out endo on your bladder, and a cystoscope indicating a possible IC diagnosis (and previous UTI's without infection)... sorry to say it does sound like IC... if not... I don't know what. Urethritis? They wondered if that was me at first since my urethra is sensitive to the touch.

          Don't worry about your post being long! Mine tend to be if you can't tell!
          [SIZE="1"][B]Be well, Alyssa :hi:[/B]

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