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Never have I felt worse!!!

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  • Never have I felt worse!!!

    diagnosed 12 years ago but the last 2 have been HELL. Hunner's Ulcers cover my bladder wall and the pain in beyond. I sarted PFT after I was told my only relief would come from a bladder removal. So far no help with therapy and then trigger point injections are a no go. Saw Dr.Peters at his clinic and he suggested that either cauterizing the ulcers would give me a temporary relief of what it would be like for me but can't find a URO in southern Ontario Canada so after much debate, tears, excruciating painful sleepless nights I'm opting for the removal. I'n weak, nauseaous all the time and so depressed I don't know how anyone puts up with me. Just need some positive feedback from someone who has been in this situation.
    I'm scared to death I'm making the wrong decision and my miserable life will continue as is.


  • #2
    Oh poor you,best of luck with your brave move, I am sure that you are making the right decision. Of course this posting could then truly belong in the Success Stories section - let us know how it all turns out.
    Every time things start getting tough, I just put on my Big Girl Pants and get on with it


    • #3
      I hope it goes well for you.

      Stay safe

      Elmiron Eye Disease Information Center -
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      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.

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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
        Just wanted to let you know I had my bladder and urethra out way back in 1986 and I so thankful I did! Having the surgery enabled me to lead a normal life. I was 30 years old at the time and scared too, but really it was the best thing I ever did. I would be happy to answer any questions you might have. Judith


        • #5
          Dear Judith

          thank you for your reply and any info you can give me to enter into this fully armed would be much appreciated. Do you have an ileum loop and stoma? and just where are they located? Hope this isn't too personal. I was in a much better state of mind until I saw my GP today and he took away my pain meds to try some other anti-depressant. Why do they do that? It wasn't doing the best job but at least made it more bearable. My URO (who is 220 miles away) has conferences all this month so I can't see him until June 3 and he leaves any pain control up to my GP anyway. Another miserable night and so much anxiety needed to get it off my chest. I'm at the end of my rope and I think my husband is, also..................All I do is cry.


          • #6
            Just out of curiosity did you say the pain meds weren't working too well, I have heard of this before where a person says this and the Dr. response is well there is no point in taking them.

            I have also read the tricyclics help make the pain meds work better, so I would have thought he would have added them not taken the pain meds away.

            I would go back to the gp and talk to him again about it, not only is it cruel to just take them away you can have withdrawals etc for stopping abruptly.

            Just my thoughts MG
            My are with you all. May you all find a way to peace and joy in your lives.


            • #7

              I have just read your post and I feel so desperately sorry for you. I had a urinary diversion done in 2003. I have a ileal conduit as I no longer have my appendix which they would have used to make a neobladder.

              I'm going to be absolutely honest and tell you that it was a really tough decision and when it was done, it was all done as an emergency and I was so out of it on Morphine, I didn't really have a clue what was going on.

              My pain was totally removed and after getting over all the post operative pain I was pain free for the first time in years. I can't say that it has all lasted and I have been suffering from ongoing pain since 2005 but that's because my ureters have shrunk and there is concern that the IC has spread. I would point out though that my pain is nowhere near the pain I was in before the operation, and I still maintain that it changed my life for the better.

              I am under the care of a pain management team and wear Versatis patches which are a lidocaine gel patch, which really seem to work alongside Pregabalin and Duloxetine.

              It is a big decision but if you have tried everything in the past, then how much more are you expected to be put through. Have the docs considered a temporary nephrostomy which would see if diverting the urine would help in the short term.

              Contact me anytime if you have any questions and I will do my best to help you at this really difficult time.

              Take care, Fiona
              Diagnosed 1999
              Urinary Diversion to Ileal Conduit in 2003
              Ileal Conduit revised in 2006
              Coping everyday with IC, but life is now more that I ever thought it would be and I'm happy and in love!


              • #8

                Hi I am sorry in my last post I forgot to say how sorry I am to hear you are in such a postion not a nice place to be.

                I can't speak about having my bladder removed, all though before I was diagnosed (which took many years, Long story) I certinaly thought about it.

                I do have expirence with putting off surgeries and being afraid.

                Starting at 30 I was told repeatedly 10 years I need a hysto and I wouldn't have one.
                1. I think this is a sugery that Dr's do because it's an easy out for Dr.'s rather than actually figuring out what is wrong.
                2. I had a few friends who had problems afterwards, prolapse, early meno etc.
                3. I wanted it done vaginally, they wouldn't said my uterus was too big and it was too dangerous to do it this way. I didn't want the incission, vanity and scared of recovery, vain I know but that was my thoughts at the time.
                4. I wanted at least one more child, although I was told I probably could not.
                5. I was plainly scared, to me it was a big decission, and at the time my kids were young, and my husband worked 24/7, and felt I needed to have housework done etc by the time he got home form work, at the time he was not very good about stepping in when I was sick for a day let alone a 6 week recovery.

                Anyway I did have another child at 34, everything went fine for the most part, had a major flare and ended up in hospital for a week and bed rest for 2 months, but I ended up with a son who has brought me so much joy in my life it was worth it.

                After he was born my menstral problems became much worse and I was told no more children for sure, I could have them but should not. Two years later I had a prgenacies scare and realized I don't want more children any more, I wasn't sure till this point.

                I had my tubes tied, the Dr.'s were really tring to get me to consent to a hysto at the sametime I refused. I am stubbron type and just not ready, but the thing is I was really suffering, and suffering I didn't need to go through.

                Some where along the line I started getting gallbladder attacks which should be pretty straight forward to diagnose, but this too took years to diagnose and many attacks. I had a polup in my gallbladder that would from time to time fall down and cover the outlet of the gallbladder, although they would say this and then say but I am not 100% sure if we remove your gallbladder it will help, I needed to know it was going to help.

                Anyways between these 2 things and IC I finally figured out I was not liveing anymore, mostly out of fear. Then I had a gallbladder attack in Hawaii, and put a real damper on the holiday for the whole family.

                After this I decided time to find a new surgen for my gallbladder and a more up to date gyno.

                I got luck and found ones I liked right away, the surgen said he was 100% sure that was my problem and I needed out ASAP or I was going to have to done as an emergency, I found a gyno who said a hysto would help me alot but he figured I had something else going on as well ( I know now it was the IC, and I think he had an idea), he took my case to a gyno convention and presented it and was told there was nothing else that could be done other than a hysto, so by now I figured I must need it, and this gyno promised me he would try to do a vaginal hysto, but made no promises because he said my uterus was the size of being about 3-4 mons prego.

                So it turn out one hospital called and said I could have my gallbladder surgery the very begiining of Jan 2000, by now I was 40. The surgery went fine, he said it was getting quite infected so would not have lasted much longer and the choice would have been taken awy from me. I felt better from this part right away, the recovery was a peice of cake. 6 weeks later I had a hysto, the gyno did a vaginal/lap assisted hysto, the recovery nurse said it is a type of sugery that was not done in that hospital at the time but it went fine and I was told I would need to be in hospital 5-7 days, but I felt so much better after having the surgey than I did prior to surgery, he let me go home after 2 days.

                I now shake my head at myself for putting myself through all that for nothing but my few stupid concerns.

                So no I have not had my bladder out and that is a way bigger deal than what I had. Only you can decided, make sure you are comfortable and ready to do it. Even thought I really suffered all those years I still don't regret not doing it sooner I just was not ready to do it, and I think part of your healing has to do with your state of mind too and if you are regretting it, in my opinion you will have a harder time recoverying and I hear it is a very hard recovery.

                I am sure there will be people who think I was absolutely crazy to do what I did and I do wish now I had done things differently, but hind sight is 20/20. You have to to what is right for you, and get many different opinions on your case.

                Good luck with what ever you do, I will pray for you.


                The surgen couldn't figure out why someone had not taken out my gllbladder he was quite sure that was my problem
                My are with you all. May you all find a way to peace and joy in your lives.


                • #9
                  Dear Fiona

                  Thank you for your kind words and advice. Yes, It is a VERY difficult decision to be making but the depression is just getting deeper since I have no life. I have 2 grandchildren whom I want to spend quality time with, at least, in the future. I'm scared to death but the pain from the Hunner's is getting impossible to bear and I have a Dr. who isn't much help. Even after 12 years I'm not sure he believes anything I say. Have had 3 wonderful Urologists involved (1 in Michigan and 2 in Ontario) The 1 in Michigan is the closest and the most compassionate man but the cost is out of the question for surgery over there. The other is 200 miles away and the third in 600 miles away. Just trying to figure out all the ins and outs before the big day. (Not booked yet)


                  • #10
                    Dear MOTHERGOOSE:

                    Thank you for your reply and prayers. This ugly disease didn't rear it's ugly head until after I retired at 49 (thank goodness for that) I had no surgeries, accidents or stomach trauma so who knows where it came from. My capacity is diminished greatly and I have lots of pain due to Hunner's ulcers. I've tried every treatment, medicine and therapy to no avail. I'm scared but am at the end of my rope at 62. I have a DR who doesn't listen and my Urologists are out of town. The car ride isn't a pleasant experience. Will keep you posted.
                    Thanks again.


                    • #11

                      I am so sorry that you have to made this decision. I had my bladder removed Jan 7 2010 and although I have had many complication and still do , I DO NOT have any regrets. All that horrid pain is gone!!!

                      The last 2 months before getting my bladder removed were total hell. After I made the decsion to have it removed I felt very relieved and knew that it was the right choice.

                      I would encourage you to read all that you can of the old posts in the bladder removal section. Ask many questions here even IF you consider them dumb or whatever????

                      I have an Indiana pouch and love it. Since having it removed I have had many infections and my family got together and had a discussion and want me to have it put on the outside. Isn't family fun at times.

                      Also during my healing process I had many life alterning events happen, which I believe that impeded on my healing process. That's slowing getting a little better.

                      Two weeks out of the hospital, I lost my sister and 13 days later my husband lost his brother. I miss her so much. Just this morning, there was something I wanted to share with her, and for a momment, I reached for the phone..........

                      I am here for you!!

                      Many blessings and hugs,

                      Serenity isn't freedom from the'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....


                      • #12
                        Go for the removal!

                        Of course no one can make the decision for you, but for me it was the best decision I have EVER made. I was diagnosed with very severe IC when I was 14 years old, the worst case my doctor had ever seen. After 6 years of trying everything any specialist could come up with I had my bladder removed. There were some complications but all-in-all it was an amazing outcome for me. i am basically painless for 5 years now, after being in severe pain for seven. If you have a doctor that can do, go for it. It was worth it for me, and if they cant find any other relief for you, I think it will be worth it for you as well.

                        I hope you find something to help you! This is a terrible disease to be stricken with. Good luck!


                        • #13
                          I am not to the point of removal yet, but my Dr. just told me I should be thinking about it, as he is sure the time is comeing for me too.

                          So I guess I will being do some research on this topic too.

                          My are with you all. May you all find a way to peace and joy in your lives.


                          • #14
                            Originally posted by Mothergoose View Post
                            I am not to the point of removal yet, but my Dr. just told me I should be thinking about it, as he is sure the time is comeing for me too.

                            So I guess I will being do some research on this topic too.

                            I'm so sorry.....If I can help at all please let me know!

                            Hugs and blessings,

                            Serenity isn't freedom from the'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....


                            • #15
                              Thanks Mary, I kinda muddle through it myself for a bit first, and find a new uro as mine closed his office due to medical reason a couple of weeks ago.

                              Thank You MG
                              My are with you all. May you all find a way to peace and joy in your lives.