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  • Wheres the bathroom

    Hello,
    I was diagnoised with ic 6 months ago. I had a hysterectomy and she destroyed my bladder. I have went threw 11 urologist. I am on my 12th now. He wants to do another surgery in August. I went to him for a second on a bladder pacemaker and he said that i was too sick for that. I have kidney infections every 6 weeks. I swell so bad i have to wear maturnity clothes. People ask me when my baby is due. I have pain everyday and it is so hard to try to do everyday things. I have a wonderful family that supports me. My husband is the best my oldest son is a U.S. Marine returned safely from Iraq thank god. My youngest son is in the Navy sea Cadets. My new urologist said that he is taking over me because i am too sick for the other urologist. I am going to moffit cancer center now. He is talking about doing botox treatments, i have to start physical therapy, and have this explority surgery in august. He said that the disease is worse. Also there is a pocket in my bladder from the original surgery and to fix it it is very risky and i could loose my bladder completly. My head just spins all of the time. It is so hard to just try to get by. My family has to take care of me so much that it makes me cry. I just want to be a wife and a mother again. I am in the hospital so much the nurses know my sons name and he knows every inch of the hospital and where he can go to get his goodies. Just want to talk to some others with this disease to feel like i am not alone. Every time I go to the doctors I get worse news . Thanks for letting me vent. Everyday is an adventure

    Medicines

    estrace, elmiron, klonopin, dilaudid, pyridium, macrodantin, sanctura, cipro

  • #2
    Oh, I'm so sorry to hear you are struggling right now! I hope this new urologist can help you, even if it does mean removing your bladder. There is a woman on this board who got her bladder taken out and is so much better now. Take a look through the topics and see if you can contact her. She just finished schooling to be a medical assistant.
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

    [

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    • #3
      I am so sorry to hear this.... So you are saying your symtoms started after you hyster?
      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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      • #4
        i'am so so sorry i will say a prayer for u before i go to bed 2nite.
        Angela aka sleepyangel30

        Comment


        • #5
          (((toucan))) I'm so sorry you are suffering all this, it sounds terrible. Good luck with your exploratory surgery, I do hope that something can be done to help you. Let us know how you get on. Hugs

          Comment


          • #6
            My IC also showed itself following a hysterectomy. Many years ago, when the ICA main office was in California, I participated in a survey that showed a large number developed IC following a major surgery. I also had an exploratory laparotomy to try to identify the cause of my pain. It turned out that I had grown adhesions, which had grown so smoothly they couldn't be felt during exams. After the exploratory, my surgeon told me I had a reason to be in pain --- getting rid of the adhesions didn't get rid of the IC, but I could at least stand up straight without doubling over in pain so it was well worth it.

            Good luck with your coming surgery.

            Warm hugs,
            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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            • #7
              Wow!! Do you think it was possible that you had maybe mild IC before your surgery? Then w/the Dr messing you all up it just made it worse. It's funny how the Drs always give worse case senarious--you get a little freaked before surgery but you never think it'll happen to you--and in most cases everything goes fine. I'm sorry yours didn't go so well. I've had 10 surgeries and besides me hating every single one of them they've all gone as planned. Your new surgeon is giving you worse case with a bladder removal. Maybe with repairing some of the damage, getting rid of the pocket, you'll have a much better handle on your IC. To ease your mind I'd check recommondations on this Dr--to see if he is as skilled as he thinks he is. Ask around--other Uro's nurses. My brother-in-law and s-i-l are nurses--if I ever want to know what is thought about any Dr in the area they know or can find out. I'm so sorry your going thru this--pain is no fun--depending on our families is hard. Especially when it's not the norm. For me it's the messy hse and not spending anytime with my family. If people want to see me I'm in bed. (in a messy rm--drives me crazy) Your not alone. I may not have had to go thru what you have but I do understand. Take care~angie

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              • #8
                I am so sorry you are having to go thru all of this. Glad that you have found a doctor that is taking care of you though.
                When I had my hyster. in 2000, I was in remission for over 5 years, however, after that I did come out. So since then I have been pretty much out of it, can't take a lot of medication or the doctors can't do a lot for me due to my heart valve or coumadin that I take. So between diet, and the little bit of medications that I'm on and the hydro's that I have every 6-8 months I do ok.

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                • #9
                  I am sorry you are going through all this. That is interesting about the relation of IC after having a hysterectomy. I just read an article in the ICA update I recieved today in the mail. It said that you would not believe how many women today have had hysterectomies needlessly. When asked why they had the hysterectomy, alot of the women said it was because of chronic pelvic pain. It is very scary that gyne's are pushing women to have hysterectomies before trying less risky things first. I know some people have no choice and have to have it done, and that is understandable. But they said that 4 out of 5 women have unnessasary hysterectomies. That is scary.
                  I am very sorry you are in so much agony. I pray you get some help and relief very soon. This is a dreadful disease. You are in my prayers.
                  Jen

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                  • #10
                    I know how you feel. When this disease was first showing symptoms I was in and out of the hospital with severe kidney infections and would run 103-104 degree temperatures. I also had kidney stones that passed, but those landed me in the hospital as well. I was SO sick for a while, about a year. I finally found a decent uro here where I live and he did the cysto and hydrodistention and gave me the diagnosis of IC.

                    I don't know what you've tried in the form of treatment besides the elmiron, but there are so many things out there now that are worth the time before you have a major surgery and have your bladder out.

                    There are several people here that have a wonderful life now that they've had this surgery, but it's not something to take lightly, and there is a long recovery time involved.

                    Read, read, and read some more on this site and educate yourself as much as you can, then come armed with all this information for your next uro visit. Maybe the two of you can come up with a treatment plan, along with the botox and maybe get your symptoms under control.

                    There is a section here on this board about bladder removal. You might want to check out that section as well.

                    I hope things turn for the better for you. I'm glad that you have a loving and supportive family. That always helps!

                    Take care, Sandy
                    *IC-- Summer 2004; PFD--October 2005
                    *Fibro--Fall 2000; CFS-- Fall 2000
                    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                    Total Abdominal Hysterectomy--adenomyosis--9\08

                    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

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