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  • More surgery!!

    I have had 12 abdominal and pelvic surgeries, starting when I was 15 and had a lemon size cyst on my right ovary, so the doctor removed the cyst, ovary and also the appendix leaving me with a 12" long ugly incision and problems with scar tissue.

    Of those surgeries, two involved placing 8 Titanium plates and screws in my pelvis to fuse my pubic bone which was fractured when a F150 truck backed into the right side of my vehicle. Because I have severe osteoporosis from a young age due to an early hysterectomy and family history, the pubic bone was very soft and osteoporotic, so the O.S. had to use twice as much of the pieces as planned. After a year I was experiencing severe pain from the titanium because I am a petite lady and there just wasn't enough room for all this in my pelvis. So I asked the O.S. to remove them. He was concerned (in fact he was very stressed because I was already experiencing a lot of pain) what the surgery would do to my bladder. Well, what it did was to royally flare it up!

    I went 22 years feeling as if I had a UTI and bladder pain but lab tests always showed sterile. So as we found out eventually I had IC all these years but was receiving no treatment. So in 1999 my GP finally came up with the diagnosis of Interstitial Cystitis as the cause of all my symptoms and in particular the severe pain.

    So for the last 12 years I have tried almost every IC treatment in the books but the pain was getting much worse and my husband and I don't have much of a life.
    My uro suggested trying a C & H to see if it would give me some relief and I was at the point where I needed some HOPE in my life to continue. So four months ago I had the one-day procedure which turned into a week stay at the hospital because once the uro got me under and started the procedure, my bladder was perforated and I had infections. I was rushed back to the ER at 4 a.m. the next day with excruciating pain.

    After I got back from recovery, my uro spoke to my husband and told him what happened and that he had never seen a bladder in such a terrible condition as mine in all his years in Urology. It is paper tissue thin, scarred and shrivelled, very small with low capacity and prone to further perforations. So I now have as stated above an end-stage bladder and his only option is to remove my bladder. As I stated at the beginning, I have already had 12 surgeries and the last thing I want is another one, and especially not one as major as removing my bladder. I am so worn out from years of pain, surgeries, treatments,
    family problems that right now at least I definitely am not ready for this major surgery and my uro says he needs four to six weeks notice if and when I decide I want the cystectomy.

    We are having a very quiet Christmas this year as I need
    to R & R, both emotionally and physically. I fear I will never feel strong enough to get through this devastating surgery at this point in my life.

    Thank you for reading a short version of my life story and MERRY CHRISTMAS to all of you and I wish you a pain-free holiday!!


    Louise

  • #2
    I'm so sorry. I hope you enjoy your quiet Christmas.

    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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    • #3
      Merry christmas everyone!!

      Donna, thank you for the "group hug"! I will admit I could use it this year. I hope everyone has as comfortable as possible a Merry Christmas and New Year!!
      My husband and I have some thinking to do about making the big decision of having my bladder removed!!
      HUGS,
      Louise

      Comment


      • #4
        Louise,
        I can imagine that you are exhausted from all that you have been through. You have a big decision to make. I am sure you will do what is best for your situation. I will pray that you get some peace from this. Take Care!
        Teresa

        We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

        Comment


        • #5
          Teresa

          Thank you so much for your nice message! I am fortunate to have people like you thinking good thoughts for me.
          But as Scarlett O'Hara in GONE WITH THE WIND said, "I'll think about that tomorrow"!!

          You are perfectly right when you said I am worn out; these past 30+ years have been very difficult and with all that Christmas "commands" of us, I feel doubly exhausted.
          So I told my husband I was planning to take this week to recuperate and think a little more of myself and not everyone else like I did and enjoyed over Christmas.

          Thank you again!

          HUGS
          Louise

          Comment


          • #6
            Louise, as much as the thought of another surgery especially one so major and life changing scares you, from what you have written it seems like the right thing to do. I really think that after all is said and done once the recovery period is over your life will will be so much better. Many are surprised at how good they feel once the bladder and urethra are out. The sentiment is usually one of why did I wait so long to do this?
            I know I could not have lived or done as much as I do now or will in the future if I kept my bladder. New Years Eve is the anniversary of having it taken out way back in 1986 and I am so thankful that I did the surgery. These last 24 years have been good.

            Comment


            • #7
              Judith

              I am so happy for you that the surgery has turned out so well all these years. My main concern (and both my GP and uro have the same concerns) is the 12 abdominal/pelvic surgeries I have had: I think I mentioned the first major one at age 15, then I had a complete hysterectomy at age 31 and went almost a year with no estrogen as my second ovary decided to die with the hysterectomy, but the doctors didn't pick up on my symptoms and at age 31 neither did I!! I was finally diagnosed as having a "surgical menopause" and a GP started me on estrogen shots immediately, but I have been told the year I was not getting any estrogen may have been the start of the bladder and bone problems the rest of my life.

              Years ago, my uro once told me he would not remove my bladder because of all my surgeries and two MVAs; now due to time and no treatment benefitting my IC I have an end-stage bladder and I live with constant, severe/excruciating urethra and bladder pain and I am sure you can understand that it is becoming more and more difficult to cope with this pain. Plus my pain doctor advises me NOT to have my bladder removed as he has had two or three other IC patients who had the surgery and they are in WORSE condition after it!!

              I feel as if I am between a rock and a hard place and all I know is that I am so tired and fed up living in pain!

              That is when my bladder and my bone problems started: as I mentioned my bladder at age 31 and the osteoporosis was diagnosed at age 34 and I have had two compression fractures in my back.

              But back to the surgery, the doctors are concerned what amount of scar tissue they are going to have to deal with while removing my bladder. With the 12" incision about 2 to 3 inches below my belly button and the other 5 to 6" incision above my pubic bone which has been cut about five to six times due to severe pelvic pain caused by the
              adhesions. A nurse once told me if we had known that incision was going to be opened so many times, I should have had a zipper put in!!

              Joking aside, Judith, these 30+ years dealing with many health conditions as well as the 24/7 extreme bladder/urethra/pelvis/low back pain, I almost feel as if the last thing I am ready for both emotionally and physically is a major surgery like having my bladder removed. But I haven't decided which is worse: continue to live like this the rest of my life or take a risk and have my bladder removed. I have been told due to my many surgeries and problems, there is no guarantee that I will still not be in a lot of pain after the surgery!
              That is a thought I cannot even think about.

              Thank you, Judith, for your interest and your help.

              HUGS
              Louise

              Comment


              • #8
                While I certainly did not have as many surgeries as you did before my cystectomy, I had several done prior and did have lots of scar tissue. When I converted over to my internal pouch the surgeries took 15 &1/2 hours partly because of my prior surgeries and partly due to the procedure, though who knows what your case will be like. I guess what might be helpful for you is to write down a list of pros and cons and see if they equal out or if the shift is more in one column. All I can tell you is that my life with 2 young sons under 5 before my surgery was horrible and that after wards I was able to rejoin the world. Like I said everyone is different, for me it was the right choice and really my only option at the time. I hope that what ever you choose to do things get better for you.

                Comment


                • #9
                  Louise,

                  I am so sorry that you are confronted with this decision. It is indeed a hard one.

                  My bladder removal journey actually started in 2007. At that time my reg uro sent me to the surgeon that did end up taking it out last Jan. At that time, he told me he would give me a 50/50 chance of it even helping due to the kind of pain it was and if and when I was ready he would be there.

                  I felt at that time that I had not exhausted all my options trying to heal my bladder even though it was so bad. I hadn't tried the interstim, and a few other IC treatments, conventional and unconventional.

                  Last Nov, I felt physically and emotionally I just could not take anymore and decided it was time. And had my bladder and my urethera removed Jan 7th 07

                  I won't lie to you, it was not an easy surgery. I had many complications. But my bladder pain is gone. Thank God!! And I have no regrets!!

                  However, we are each so different in how we respond not only to treatments, but to surgery as well.

                  Mike on here that had his removed a few months ago did wonderfully. I haven't seen many posts from him lately, but I'm sure he is out enjoying his new life.

                  Just know that whatever you decide to do, we are here for you!

                  Praying that you get plenty of rest and enjoy the rest of your holiday!

                  many hugs and blessings
                  MARY


                  Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

                  Comment


                  • #10
                    Thanks, mary!

                    Thanks for relating your experience with the bladder surgery. Mary. The more information I can gather will help me to make this major decision for this major surgery!

                    I agree with Judith what she said about family. I know my being sick and in pain for so many years was very difficult on my family through those 30+ years, but when it took 22 years to get the IC diagnosis I went through a lot in those years trying to find out what was causing my bladder pain.

                    Then when I had the MVA that fractured my pubic bone that made the diagnosis even more difficult because then I was having pain in the bladder, urethra and pelvic areas and after the accident I had a lot of pain in the pubic bone. So I had a major surgery where the plates and screws were put in to fuse the bone but they drove me crazy after a couple of years and I had them removed. But that pelvic surgery really flared up the IC, even though I didn't know that!!

                    One day my GP had this info about IC, Elmiron and a RX for it. He then referred me to a very good uro here in Canada and he did the C & H and agreed with my GP's diagnosis of IC. So after 22 years of misery and going from doctor to doctor at least I finally found out what was causing the major part of my pain. But the doctors also say I am probably getting pain from the scar tissue from all my surgeries. So they are not saying that I will also not have any pain if I have the surgery and that is what concerns me the most - that I have my bladder removed and even though the pain may be different from the bladder pain I could still be in a lot of pain from the adhesions which can cause a lot of pain because they don't stretch.

                    Many thanks to the responses and sincere thanks to you, Judith, for sharing your experience with having your bladder removed.

                    HUGS
                    Louise

                    Comment


                    • #11
                      Hugs

                      Big decision I pray and hope all will be well with you. Hugs and
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                      • #12
                        Complete sympathy and understanding

                        I have to say I completely understand what a big decision this is. I have had several surgeries in my life for various reason's beginning at the age of 8. I have now been in chronic pain for the last 12 years and seems to progress as time goes on.I have tried every treatment and drug I can get my hands on, so finally I asked my uro surgeon if he would remove my bladder. I have severe IC and low bladder function. My life is controlled by this disease. He said that he removes few bladders because of this disease and does not think that it would cure the pain. I'm so desperate for a 2nd opinion but also fear that I do not have the emotional strenth at this point, that it would take to recover from such a major surgery. But then again I have absoulutely no life and the depression get's worse as the days, weeks, months and years pass by with no change. I am now waiting to hear from the Mayo clinic to see if they will even see me. Love how I have good insurance and still the doc's have my fate in their hands. Anyway I hope nothing but the best for you. Lots of hug's love and prayer's for you and your family
                        Tracey Babbitt DX 2005

                        Comment


                        • #13
                          Tracy, hope you get into Mayo. As far as getting your bladder removed, the doctors are right in that for some it does not always remove pain so they are reluctant to perform the removal just for pain. They tend to do it more for small scarred bladders where frequency and capacity are the main symptoms. Of course they also do it for other reasons and there are some uros who will do it for pain, but just want you to know that just because you have good insurance it is also not always up to the doctors. The insurance company plays a big part in what they will pay for. Let us know what happens.

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