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  • #1

    I need advice, encouragement or anything I can get!

    I had a hydro done with overnight stay to irrigate on March 26. I am still hurting HORRIBLY!!! When I pee it feels like the worst period cramps ever and I have not had a period in 5 years. Does anyone else have this problem and what was the outcome. Now I am hurting all the time....ALL THE TIME and I have no clue what to do. I was diagnosed with this disease in 1997 and have not needed any regular medication (please don't hate me I am one of the FEW and FAR BETWEEN that can get by with little or sometimes no medication). I have had a hydro once a year for the last 4 years and that seems to help me. Now don't get me wrong I have had my share of horrible flare ups and that is when I need my meds. I keep a IC Emergency Kit with me at all times. I do have a lot of frequency but the urgency goes away with my hydro. (not this time) My doctor is trying me now on Vesicare but it says that it can take a while to get in your system so I am patiently waiting on it to work. So now I am very emotional and ill as a hornet all the time. All I want to do is sleep and take my pain meds. OH YEAH and I wet myself all the time...sometimes I just have a little leakage and sometime I actually wet myself. The uro thinks that this is 2 different problems???? ADVICE PLEASE!!!!!!!!!
    THANKS IN ADVANCE!!!!!!!
    Last edited by Autumn B. May; 04-13-2007, 02:08 AM. Reason: Left something out....
    Tags: None
  • #2
    Hi, Autumn, I'm so sorry you are in so much pain and suffering. Does your uro think there might have been some damage that happened by accident during the hydro? Ruptures occur only very rarely, they aren't a usual occurrence at all, but I have heard of them happening in the medical literature.

    Does the pain seem worse or quite different than your usual IC flareup pain?

    Also, I'm guessing the uro probably has ruled out a UTI, hopefully? One hydro I had, I didn't get my usual brief remission from symptoms, and instead I seemed to have a more irritated bladder than usual even. Turned out I'd been walking around with a UTI for a month or longer, and it was just caught on a routine test! So sometimes a person can get a UTI after a hydrodistention, even when the test itself is done under very sterile conditions.

    Does your uro think that the Vesicare will take care of the cramping/spasms type of pain? Is he helping with the pain via meds now? If he isn't, you can ask him to give you a referral to a pain management center, where hopefully they will bring your pain under control ASAP.

    Incontinence is not normally thought of as a symptom of IC, it is more a symptom of overactive bladder (and the meds like Detrol LA, ditropan etc. can be very helpful for overactive bladder) and it sounds like your doctor is aware of that, and is trying to pin down exactly what your diagnoses are and how to treat them.

    If your uro hasn't been very helpful or understanding, and you aren't happy with him, it might be time to seek a second opinion (might be time even if you are happy with him) and especially to just make sure no damage was done during the hydro and no infection is present. Just to rule those things out.

    Hope you feel better soon!

    Blessings, and welcome!
    Lori

    Comment

    • #3
      It does sound very much like you could have an infection brewing. Are you following an IC diet? Are you on any medications or supplements?

      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

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      • #4
        I had alot more severe pain after my cysto/hydro and thats been 6 months ago and I still have alot of pain. It was never this bad before..
        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
          Wow...thanks for getting back to me so soon!!

          Thanks you guys for getting back to me so soon.
          To answer your questions...I am TRYING to follow an IC Diet sometimes I slip up and pay for it in the end. (but it is so good when I am eating or drinking it, HA!) I have these symptons a lot and go to the doctor and have NO infection....my uro says (or did the first time I used him after being diagnosed by a specialist in a hospital 2 1/2 hours away I transferred because my uro is closer) that I did not have a horrible case but that has been 4 1/2-5 years ago so sometimes I feel like a fool when I go into his office complaining, ya know? I just know that I hurt and feel VERY alone and depressed about it. NO SLEEP! Most nights I am up every hour and 10 minutes to go to the bathroom and I will only pee about 2 ounces. FRUSTRATING! My cramping comes at the end of peeing....it is like I have to squeeze the last of it out...I have to hold my breathe just to get through the end. I NEVER push down...I have a fissure that I am trying to get well without surgery right now so pushing down would really be bad for me! I am just at my wits end because usually after my hydro at this point I am feeling great and back to life. I have 2 children ages 9 and 7 and they are involved in everything and I work in Court Referral which we help drug addicts so my life is very full and I just can not afford to be down right now!

          Comment

          • #6
            I'm confused as to whether or not you've seen your uro since you had the cysto w/ hydro to rule out a UTI. It sounded in your post like you had, but I couldn't tell if you meant you'd been to him with these symptoms in the past, or that you've been to him since the cysto w/ hydro to get a urinalysis and culture.
            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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            • #7
              I have not...

              I have not seen my uro, my follow up appt. is April 26 and it is now about to be the weekend and he has surgery on Mondays all day. I guess my pain will be partially my fault this weekend.

              Comment

              • #8
                Oh, I only asked b/c if you haven't seen him since then you very well could have a UTI. It is somewhat common to develop a UTI after a cysto w/ hydro. Anytime we are catheterized the risk goes up b/c it introduces bacteria into the urethra.

                Worth getting checked out, even at an urgent care, just to rule out a UTI.
                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
                  Thanks

                  I will probably get checked out at the ER tonight....getting to be a 10 on the pain scale rate....10 being worst! Do not know how I am at work drug screening people all day!

                  Comment

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