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3 weeks post op hysterectomy and IC PAIN VERYsevere right now HELP!!!

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  • 3 weeks post op hysterectomy and IC PAIN VERYsevere right now HELP!!!

    i just joined your group. I have been diagnosed with IC fir 3 years now.
    I had a hysterectomy 3 weeks ago, and I am having very painful spasms of the bladder and the urethera. The pain will bring me to my knees, along with the pain of the hysterectomy this is very painful [everyday } Has anyone had a hysterectomy out there, with IC, and had pain constantly? Will it get any better? I just need sombody to talk to and tell me her experience. I often cry out of frusteration and I feel alone. The surgeon got frusterated with me post-op, gave me some flavoxate, ( that never works past and present) 1 week of pain med and said, ADIOS, and good luck! It seems Dr.'s are annoyed with us with IC. They can't fix it, they get annoyed, give us urispas or bladder relaxants,, and send us to somebody else. I have been to a couple of urologists, but there is nothing that has worked I tried the elmiron antidepressants ,instills, everything available. I am very fortunate to have the same primary care doc for 25 years, and he is kind, and he helps me with my pain meds as needed. If anybody can help, please reply to my post!
    Thanks! G

  • #2
    I am glad to see you have found our site, you will learn a lot with in these pages. The gals here are great and offer so much support. I flared a lot after my hysterectomy for a few weeks, so it is common to hurt especially only after 3 weeks. Have you had your post op check up with your primary doctor yet? There are a few of us that has had them in the last couple of years.
    I really hope you feel better.
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      Please check in with your primary care physician. Hopefully he will have some help for you. It does take time to heal from a major surgery so that could be it, but you need some pain relief.

      Warm healing thoughts,
      Stay safe

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      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.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Ouch, sorry to hear that you're hurting so much. I would imagine that having a major surgery like that would throw you into a flare. I would go see your primary care dr. If he can't do anything to get the flare under control at least he can give you some pain meds to help you get through it more comfortably.

        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


        • #5

          I am so sorry you are going through all this pain.. There are a lot of us on here that has had a major surgery or surgery to find that it made our IC worse..Yes it does settle down but it takes time.. Have you tried peridium for the spasms or any anti spasm medicines.. I take Ulmar-T and it works great when my bladder decides to spas out..I would have hoped that the doctor gave you some pain meds..Well there should be alot of great ideas here on he board I hope you find something that helps..

          Good luck!

          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:

          Diet Reference Sheet:

          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.


          • #6
            Post hyster

            So very sorry to hear you are having such a hard time. I am 9 weeks post hyster. I had a laproscopic which took everything; uterus, ovaries, cervix.
            I have written you a private message, hope it helps. It is unfortunately not unusual after a hyster to have the bladder go ballistic. I had bad, bad frequency which only responded to Enablex. Believe it or not as each week passes the bladder begins to get the idea it isnt going to be yanked out next, and then begins to stop its hissy fit.
            Most Doc's also will give you pain meds for post surgery.


            Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
            Diagnosis: IC, PFD (both in remission)


            • #7
              I'm sorry to hear that you are in so much pain. I also had a Hysterectomy. Mine was done in Dec 06 and I was still having the same pain that I had with all my parts. That's when I was dx with the IC.

              It takes time to heal after major surgery. But first and foremost your DR that did the Hyst should give u some pain pills.

              The only thing I can tell you is to make sure and get up and walk. I know you don't want to cause of the pain but you truly need to. Also use a heating pad for your bladder.

              I had abdominal (sp?) Hyst cause I have had 3 c-sections and I had a tumor removed. Way to much scar tissue lol

              Well take care and wish u luck. Remember to get up and move around!! Stand up as straight as you can each time.
              Live your life to YOUR best, and Love to YOUR best!!!

              DX in 03 with Shingles
              Removal of Left ovary due to Cyst in 2005,
              I have had cyst since I started my period as a child age 12
              Hysterecotmy December 06
              IC DX March 07 by PST
              2 "rescue" instills in March 07
              Cyco May 07 confirmed IC
              Uro study June 07
              1st Pain Block July 17,08
              Hydro/Cysto Nov 11, 2008
              12-11-08 was told I had alot of inflamation

              Meds: Allergic to 6 things
              Premarin......taking the gen cause I get it at Walmart for 4$$
              Presique for my drepression :woohoo:
              Abilify for my depression
              Adderall ...found out I'm ADD...makes sense now
              Kolopin for anxiety
              Noroco for my pain
              Valtrex for my shingles as needed

              Sorry if my spelling is off on the meds [/FONT]