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Going to be having more surgery-IC HAS spread

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  • Going to be having more surgery-IC HAS spread

    Hi everyone,

    I have been in terrible pain in the urethra region along with the abdominal pain the last four weeks. Saw my urologist who did the augmentation and the ileo-conduit on me yesterday. He tried to do a cystoscopy but due to the immense spasms and pain could not stand it beyond the initial squirt of water. BAD NEWS-the Interstitial cystitis has spread to my urethra. I WISH that the urologist would have taken it out when he took out the bladder. I am being booked as an emergency so should be soon. I am sooooooooooooooooooooooooo uncomfortable and have to sit like in that commercial "I should have used Preparation H" while on one cheek, and with my legs crossed most of the time. Luckily the break-through oxycodone is helping somewhat.

    I wish everyone the best in their struggle with this disease, I wish I was diagnosed and treated when I was 21 instead of 41 grrrrrrrr.
    God Bless you all, I enjoy using these posts and it helps to keep me sane in my hours of pain.
    Thanks for being there.

  • #2
    {{{{{Yvonne}}}}} sending prayers that your surgery goes smoothly and your dr's hands are guided by God~
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


    • #3
      Hi Teri,

      Thank-you for your post, appreciate the encouragement so much. I find that I get so discouraged with this dreadful disease due to the face that I have had augmentation, ileo conduit and am still in excruciating pain. I am praying that the removal of the urethra will really make an impact on my pain,I would sure enjoy that.

      God Bless.


      • #4
        Very best of luck with your surgery. I hope so much that this will relieve your symptoms. Let us know how it goes, okay?

        Sending healing wishes,
        Melanie J.
        "The sun shines not on us, but in us." John Muir

        Living a happy life in spite of IC!


        • #5
          hi yvonne, i talked to you when i first came on the message board.i to have my bladder removed,i also begged to have my urethra removed. i just knew if i had it removed my pain would be better or gone.well,it was neither.i would tell any one getting their bladder removed to get their urethra removed if for no other reason to save themselves from the pain your going through now.i am so sorry for you.i had no idea you should have gotten on here sooner. i am still doing ok living on painpills and hoping my next surgey works if it does it will be good for all of us take care my thoughts are with you deedee oh i for got here is a big hug to make you better!!!
          dx'd i.c in 96,too many treatments and meds to remember before badder removed in 2000.pain returned..has since been on roller coster of narcs ad other things..3 suicial att..went into hosp to withdrawl from sooo many narcs and wt. got down to 85lbs....came out eating small amounts ad keeping them down..the only pain med was ultram 50mg q 6 hrs..and gabapintien sorry..can spell..600 mg q 6 2003..nowin 2006-ive had mesh pulled from myvaginal walls 3 timesso pain is severe again but also in rectum now..had to add hydro/app q 4 hrs.!!!but i still pray there is hope..i just need o find it.


          • #6

            Thanks Melanie J,and Dee dee for your good wishes, I appreciate your support so very much. This is such a fantastic support and wish that I would have found this 20 some years ago. Thanks again.

            Thanks Kara for your good wishes also, appreciate them. Kara, I have been following your posts for some time now and have been with you all of the way. I will be thinking of you as you go in for the surgery with the new doctor. Good-luck kiddo, I am rooting 100% for you. I wish I had had my surgery when I was your age. All the best.

            God bless you all in your various phases of a painful disease. There is a reason for everything but sometime I wonder why God has some of us suffer so much.


            • #7
              Hi Ladies,

              I've been off for a few months in posting, but it seems to me that alot of you are getting your bladders removed.......may I ask how long you've had IC and any other conditions you have? What other treatments have you done/been through? I was told 5 years ago and as recently as 3 years ago for bladder removal and I said no. Some on here have had it done and it has helped them to a degree, but PLEASE make sure you know that getting your bladder removed most times does not make the pain of IC and its related conditions (if you have them) go away - sometimes it makes things worse. Have you all tried every other option? I'm one of those IC patients that nothing has worked for and I've been through every med and most med procedures and have turned down Interstim (not a candidate, bladder is too small less than 250 cc under hydro), a SCStim, a pain pump and a few other things. I've been through countless surgeries including a complete hysterectomy at 30 with the chance I was told then 50/50 of relieving the PFD and Chronic Pelvic Pain, severe back pain and IC. I took that chance and it got me nothing.

              I'm just wondering if there is something new that I've missed? I have articles that I've obtained that concurs that IC does indeed spread to other areas, including the intestines, which is why when I asked them to rebuild me a new bladder vs. having a bag put in place, Johns Hopkins and NIDDK stated that in patients that have had that procedure done, the IC has returned. It also has been found in those of us with IBS - the mast cells are the same in the intenstinal lining of those with IBS that have IC.

              I'm just curious....also, what are your ages? I'm going to be 33 - I was dx at 27. I must of missed something along the way, but so many are having their bladders sounds so alarming.

              Tons of love,



              • #8
                Hi Deb,

                Thanks for your post. No I don't think you have missed anything and no there aren't that many people getting their bladders out. Once again until you walk in a person's shoes don't judge ok. I have had IC since I was a teenager and unfortunately was in a small town and didn't get diagnosed until I was 40, I am now 46 years old. I suffered during all of the time, enduring numerous urethral dilatations but by the time I was diagnosed my bladder was so diseased with the IC that elmiron and all of the other treatments and medications did no good. I had an augmentation done three years ago and the new bladder rotted in a month so nine months later had an ileo conduit done but they didn't remove my urethra, they weren't thinking ahead. When one has gone through as much as I have and as much as Kara has it is a decision where one has to decide within themselves that that is the right decision . No one else knows what you endure during all of those years before diagnosis that you are going crazy with the pain. Deb, I hope you have success in your treatment of IC but please do make judgements on people before you know the whole story ok. I know Kara had a real problem with someone that posted that judged her and it isn't really fair until you walk in our shoes.

                Sorry for the long post but had to make the point here that no you didn't miss anything and no there isn't anything new with IC as far as I know but I now have IC in my urethra and it is causing me immense pain so it has to come out.


                • #9

                  Whooaaaaaaaaa...back up the pi$$y train here. First of all, my post was in NO WAY meant to pi$$ anyone off...I have been a member of this site since 1997 and have seen MANY things and have helped and been helped by many on here. My posting was a series of questions regarding, as "new users" per your id's to this site - I had personal questions as to why a bladder removal. Please go back and re-read my post. And as far as "walking in someone else's shoes" - as the bible says " do not judge others least you be judged" - so I can turn that statement you made around onto YOU and state the same cannot judge me either, as you do not have the type of IC I have nor the other syndromes or pain I have - every one of us is different when it comes to their IC and other conditions. I think your post was very uncalled for. Those on here that know me - know I would NEVER post with the intent to piss someone off - EVER. So I take offense to your posting. I simply had questions that I would like to know for my own personal experiences, as I stated, its been told to me more than once to have my bladder removed. That is a very personal descision that only that individual can make and for some it is a lifesaver, for others it makes things worse. I also posted that in my post above.

                  Do not judge least ye be judged. I hope your bladder removal and Karas bladder removal goes very well and gives you your life back. I was questioning if this was a first opinion or had either or ANYONE, not just you and Kara, but other IC patients discussed all the pros and cons to this surgery? Did you not think that possibly MY doctor is considering doing this yet again with ME and I had questions myself?? I believe I stated that as well.

                  I wish you and Kara luck and best wishes in your surgeries, but before you jump down someones throat - KNOW that person and read their posts a few times to ensure you are reading them correctly as to ascertain the "tone" of the situation. I read yours 4 times before I posted this statement, and I dont think I'm far off from how you are coming across.



                  • #10
                    And I feel like I know all of you to some degree. I don't think any of you would intentionally post something hurtful.

                    I know each of you is trying to help the other ... so let's debate the issues, not the people ... 'kay?

                    Sending warm personal regards to each of you,

                    Stay safe

                    Elmiron Eye Disease Information Center -
                    Elmiron Eye Disease Fact Sheet (Downloadable) -

                    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:


                    Diet list:

                    AUA Guidelines:

                    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


                    • #11
                      Yes Donna you do....and I agree wholeheartedly, thanks for your posting.

             have been through and I are not too different in when we were dxed and ALL the treatments we've been through. Our life stories could mirror each others, minus the Interstim because I cannot have it - but basically they mirror right down to medications, reactions, suicidal thoughts...and attempts (on my part anyway - too many to count and some Angels on here pulled me through THOSE moments and I thank them every day). I posted my first posting because I havent been on in a while and those that know me, know I cannot get on here and sit, read and respond like I used to due to the pain I experience, which I why I posted above that I had not been on in a while and was alarmed when I read about surgeries being done. You dont know my story - and I dont know yours (well now I do) but its so great that you posted all that you did - I know how hard that was to "relive" everything and tell it, but you just helped SO many patients with IC by doing so. My doctors have suggested yet again, in the past 6 months bladder removal, but at 32 w/2 young children - for me thats not an option - but for others, such as yourself, that is such a personal descision and only one that YOU can make and you alone. No one was bashing anyone when posting - that I can assure you - I hope that everyone that reads ALL of these postings under this topic read everything fully and from a non-judgemental point of view - thats how I read them and thats how I posted.

                      I hope your surgery goes well - I hope it works and you are to some degree pain free and can get your life back - I KNOW in your early 20's and having this disease is devasting, he&&, its devasting at ANY age and I wouldnt wish this awful disease on my worst enemy - not even my old Boss (and I say that lightly even to this day...) who forced me to resign from my gov't job working intelligence for over 10 years - he and a few others who like so many, didnt think anything was wrong with me - that is a LONG story, one that a lawyer messed up and cost me MILLIONS of dollars for not meeting a deadline - but again, another story and not for here. But know that there are so many others out here that are JUST like you but are afraid to post - or are so scared to even THINK about having their bladders removed because they have weighed all the options and the pros and cons of a removal. I know I have - and some days I just want this damn awful bladder out of me, then other days I dont want to live with a bag, but that is ME and MY personal thoughts for MY body and my life - for others, its a blessing and I wish all those soooooooooooooo well on their surgeries, but most of all - to keep the faith and KNOW that no matter what - everyone on here understands to a certain degree the frustration, pain, hours of tears, thoughts, doubts, and exhaustion of having this disease along with other conditions we have that go in conjunction with IC or separately.

                      God Speed with your surgery and we will be thinking of you and of Yvonne....



                      • #12
                        yvonne and kara... my hearts go out to both of you, you both seem to be informed patients and it is your choice to make. I hope to god that the surgery gives you the releif you desperately need and deserve. Good luck to both of you. [img]biggrin.gif[/img]
                        As an after thought to those who would verbally attack echother... my mother once told me if you can't say something nice, don't say anything at all. These people need our support more than ever right now.
                        It is only with the heart that one sees rightly, that which is essential is invisible to the eye. THE LITTLE PRINCE


                        • #13
                          Yvonne and Kara
                          I just want to say you both are in my thoughts and prayers. As well as all the others who deall with this. You both have been thru enough. Sending you tons of Hugs-JOJO


                          • #14
                            Deb, just wanted to let you know that I had my bladder out when I was 30 and my children had just turned 5 and 3. Yes, it was a little hard at first because I had a new routine to do as far as personal care, but because I no longer was running to the bathroom every 5-15 minutes and the urethral pain I had was gone, I was in better shape after the surgery to care for my sons and enjoyed being a mom that much more. That was over 16 years ago and I am glad I took the step to have the surgery. At the time I had every treatment available and my doctor told me I had no choice but to have surgery if I wanted to have chance at a normal life. I do not regret doing it even though I have had some health things to deal with because of it. My life is so much better than it would have been if I had continued to live with my bladder. Judith


                            • #15
                              Hi Jo JO, Unicornintherain,

                              Thank-you so much for your posts, I really, really appreciate having this site to go to, helps to keep me sane in the midst of the 24/7 pain of the IC. God Bless you all.

                              I am soooooooooooooooooooooooooo sorry for my post of the other day. I was in terrible agony when I wrote it and have learned since how miserable my life is with this IC. Please forgive me for all I said, I guess in a lot of ways you happened to be handy that day as I was having more pain than usual after seeing the urologist and being examined. I realize now that it was a big mistake on my part and I hope that yo will forgive me.
                              I hope that your journey with IC will improve and if you ever decide to get your bladder out that things will be good for you and your family again without IC. Such a horrendous disease.
                              I also was misdiagnosed for twenty years and by the time they did my bladder was so diseased. All those years of suffering with no help and no one to turn to. Even now after my bladder is out I am in such terrible pain 24/7 and the urethra is spasming like crazy 24/7 grrrrrrrrrrrr.
                              Here in Canada the doctors are in a real dispute over wages so surgeries are being cancelled all over. I am going to see my family doctor and force his hand about the surgery, I want it now and be done with it.
                              God Bless DEb and all, I promise from now on I won't post before I have taken my pain killers ok.
                              xoxoxooxoxoxoxo. All the best to all of you.