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Is this a case of IC? I am going out of my mind here...Help please!

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  • #1

    Is this a case of IC? I am going out of my mind here...Help please!

    Hello everyone I am new to the thread and wanted to ask a few questions....

    I haven't been "officially" diagnosed with IC yet as I am pregnant and can't have the full cystoscopy under anesthesia until after the baby is born. I wanted to ask if any of you truly think this is IC. My OB and urologist seem to think so..

    My symptoms are EXTREME urinary frequency/urgency with negative urine cultures for a UTI. I have constant urges that my bladder is full even immediatly after voiding. I still feel like I have to go, but only a few drops come out. Plus, only after I go, I feel extreme pressure in my lower abdomen like a bowling bowl is there. Granted, I AM pregnant, but this feeling is completely different than where my baby is sitting. I'm not sure if I can classify this pressure as pain, perhaps sometimes. It's all confusing.

    I am at my wits end with the constant urge. This flare is lasting 3 weeks so far - going strong with no hope in sight. I can't even leave my house because the bladder pressure/urency is so strong, even though there is little to no urine in there. I force myself to wait to use the bathroom because I am afraid of the pressure/pain that comes after I void. Everyday, it's like careful timing. I feel like my bladder will explode, yet there's a tiny amount.

    I had a quick cystoscopy done while awake, and she said she saw no inflammation indicative of IC, yet she wrote me a script for Elmiron anyway...A very low dose (only 1 100mg. pill a day). Nothing for the pain that is safe for pregnancy was given...She said she doesn't really give pain meds. anyway. I tried Uristat (OTC) and it didn't work.

    I walked out of the clinic that day in disbelief...I wish she could feel my pain...I cried all the way home because I am just sick of this urgency feeling. I am so uncomfortable. The bathroom is like a torture chamber...I cringe at the sight of a toilet

    Does this sound like a classic case of IC? What else can it be? And, most importantly, WHAT can help for the urgency feeling???? It's not so much the pain as the urgency that gets me here...I want to feel satisfied after I void for once. Does 3 weeks with no let up of symptoms sound normal for an IC flare?

    Oh, and the urologist mentioned Detrol LA for the urgency (after pregnancy). Does that help for IC patients at all or is she clueless?

    Sorry for all these questions...I am so confused here. This has seemingly come out of no where suddenly...Although I do remember a short flare a few months ago that lasted a day or 2 (maybe a few flares). Why this is lasting so long is beyond me....


    Thanks for any responses/help I receive!! I greatly appreciate it!!
    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!
    Tags: None
  • #2
    Sorry you are feeling so lousy. I know you are really frustrated and rightly so. It does sound a lot like IC, but I never had IC when I was pregnant. I just want you to know that there are people out there who do understand and empathize with you and what you are going through right now. Hope you feel better soon.

    Janice

    Comment

    • #3
      I am so sorry that you are having all these symptoms. Though it sounds like IC, so many women who are expecting have similar symptoms, so it could be pregnacy related.....I just dont know. But, I pray for your sake that this will go away when your baby is born.

      I realize they cant do the cysto/hyrdo now, but there is another test that they might be able to do. It is called the Potassium Sensitivity Test. I am not sure if it is safe to do when a lady is pregnant or not. Some of the others here or your Dr. may know. Anyway, if it IS safe to do it, then I would definately go for it so you can at least get some answers.

      Meanwhile, there are still several things that you can do that would be safe for you and the baby. The first would be to go ahead and start the IC Diet. Even if you dont have IC, it wont hurt you. And if you DO have IC, it could make a huge difference in your symptoms. Here is the link to where you will find it. http://www.ic-network.com/handbook/ It is in the patient handbook and there is also alot of other great information in there.

      Also, you might ask your Dr. to prescribe a TENS unit. It is an electronic device that you wear. It has leads that you attach to different locations and it sends pulses to your bladder, back, or wherever the pain is. Many patients find this helps alot. It sort of distracts the nerves. It is hard to explain, but there is info about it in the patient handbook too.

      Regarding the pain, I know that there are several ICers whose Drs have allowed them to take a small amount of pain meds when needed. Mine did. I took Mepergahan-Fortis (Demoral w/ Phenegrin) from about the 5th month until I had my son. But, the first OB I saw would NOT give pain meds or nausea meds AT ALL! This seems to vary considerably from Dr. to Dr. Though you may love your Dr. otherwise, if you are suffering that much, you may need to switch to a more compassionate Dr. or at least go to a consultation with another to see if another Dr. could help you more. I just hate the thought of you suffering the whole time!

      Also, I am not sure if this is approved for Pregnancy, but hopefully someone else here or your Dr. will know, but you might look into Rescue instills. They give many of us alot of relief. Mine contain Lidocaine or sometimes Marcaine, heparin, sodium bicarb, and Kennalog. The Lidocaine and Marcaine numb the bladder giving significant relief. The kennalog is a steroid used to help with inflammation and things. There are different formulas, and I dont know, but it could be poss to do this while pregnant. (This is instilled into the bladder w/ a small cathater.) I do mine at home now when I need to, as do many ICers.

      But, another thing you can do now is to try Antacids like Tums. That is the thing w/ IC, generally when our urine is too acidic, it burns and causes more pain. So, antacids help neutralize it. (Of course, always ask your Dr. before you try anything someone suggests, but particularly since you are expecting!! We arent medical authorities or anything.) If you dont have Tums or another antacid, some ICers put a few Tsps of Baking soda in a glass of water and drink it and it can also neutralize the acid, (much quicker than the Tums.) IT is nasty tasting, but it can help!

      There are also some antihistimes that are safe to use during pregnancy. (But some arent) A Dr. or Pharmacist can tell you for sure which ones are ok or not. But, alot of ICers take antihistimines and are helped by those. Some require a r/x and some dont.

      Heating pads and or ice packs may also be helpful when flaring. They make those heat strips now that you can wear for when you are not near your heating pad.

      That's all I can think of right now, but hopefully others will have better ideas that can help. I hope for your sake that it isnt IC. But, if it is, then we will be here ready to help whenever you need us.

      Hope you feel better soon!

      Hugs,
      Amy
      Last edited by ihurttoo; 04-21-2007, 05:54 PM. Reason: add info

      Comment

      • #4

        I think Amy has some great advice..
        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

        • #5
          You got great advice already... so I'm just going to say
          ****
          Jen

          *Diagnosed with severe IC in 2004
          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

          **I am not a medical authority nor do I offer definitive medical advice. 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.

          Comment

          • #6
            I'd like to add another to the IC Network. I also encourage you to give the IC diet a try.

            Warm healing thoughts,
            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

            • #7
              NO, the detrol did not help me at all, and I'm pretty sure that is the same with most ICer's..I'm sorry your having such a tough time, especially being pregnant that has to be really hard on you..Wishing you the best.

              Kari
              Kari

              I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

              Comment

              • #8
                Detrol LA is one of the meds I have tried to stop, but every single time I do a flare begins. It's one I will be on forever, probably. It does help some ICers, but as with any medication - it helps some and doesn't help others.
                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

                • #9
                  hope

                  i hope for your sake its not IC

                  i think alot of pregant people have that problem...as the baby is sitting on their bladder.

                  i wouldn't worry too much about it.
                  as worry is not good for IC

                  but if you notice your symptoms increasing...if you drink soda, OJ, or coffee..
                  then it may be IC

                  well be here if you need us
                  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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