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  • cystoscopy again!!!! Please help me!

    Hi Ladies

    I yet again need your advise please??!!!
    Well I went to see my urologist a few months ago ref my IC and he mentioned bout doing another cystoscopy and biopsy!


    Anyway I had a cystoscopy done under General Aneasthetic about 2 years ago and It left me in agony for a year! what a mean by this is that my vulval pain got a thousand times worse and I felt like my clitoris was being pierced daily. Also my bladder problems (freqency, urgency, burning etc) also got worse and I promised myself not to do that again and had to take 4 months off work and go to councelling! Well not a nice experience ha ha!

    Anyway they didnt find anything to worry bout in my last cystoscopy but just wanted to do a biopsy (why the didnt bloody did it at the same time I dont bloody know) but I told him there is no chance in hell I am having it done as its not worth it!

    I dont know if it irratated the nerves are something but it was awful! I was having pain all over my vulva, legs and bum all day everyday to the point I had to have morphene. Do you think I am right in deciding to not have it done??? It's not the operation I am worried about its the after affects!

    Dont get me wrong I am no where near cured now and still suffer but I am a lot better than I was 2 years ago!!! I am on no medicaton for the urgency and freqency as they have never given me anything but I do know there is medication out there!

    Let me know your thoughts please ladies as I am feeling a tad confused and worried. I want whats best for myself and just worried bout making myself worse


    thanks so much
    xxx
    Started with symptoms 2004 after a severe infection.
    Was diagnosed with IC Feb 2006 after cystoscopy.
    Diagnosed with vulvodyina and PN in july 2006.
    Dignosed with ME and IBS Oct 2006.
    Currently taking Amytriptaline 50mg, regular pain killers and birth control!
    Also doing IC diet and regular use of heat packs.
    Still struggling with IC and controling my symptoms so looking for some help

    also recently had abnormal pap, CIN III and just had LEEP done 2007

  • #2
    I wish I could help. The best advice I have is to do your research; it's a decision you will have to make for yourself.

    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

    Comment


    • #3
      I've read so many women lately getting worse after this procedure, and even the medical community is rethinking it and trying to diagnose without such an invasive procedure.
      If you had such poor results (to say the least), then you need to go with your gut feeling and tell you doctor no thank you.
      If you've been diagnosed already then there isn't any real point in my opinion for him to make up his mistake two years later. Like you said, he had his chance. You shouldn't pay for his mistake!

      Hugs,
      Moonheart
      http://www.TheCraftyEwe.etsy.com

      Comment


      • #4
        Thanks so much Moonlight I appreciate it.

        its very worrying that some women get worse isnt it. I wonder why it affects us all differently.

        thanks againx
        Started with symptoms 2004 after a severe infection.
        Was diagnosed with IC Feb 2006 after cystoscopy.
        Diagnosed with vulvodyina and PN in july 2006.
        Dignosed with ME and IBS Oct 2006.
        Currently taking Amytriptaline 50mg, regular pain killers and birth control!
        Also doing IC diet and regular use of heat packs.
        Still struggling with IC and controling my symptoms so looking for some help

        also recently had abnormal pap, CIN III and just had LEEP done 2007

        Comment


        • #5
          You're welcome.

          I am beginning to think it's the ones who do better who are in the minority now.

          I wonder if there is something they are doing differently now that they didn't do years ago and that's why there is such a discrepancy in the responses now?

          Sad isn't it?

          Take care!
          http://www.TheCraftyEwe.etsy.com

          Comment


          • #6
            thank you so much Briza, its so nice to know that you understand how I feel and I totally agree with everything you have said!

            I havent actually tried those meds you have mentioned so will go ask my doctor about them...........thank you so much.

            lots of love x
            Started with symptoms 2004 after a severe infection.
            Was diagnosed with IC Feb 2006 after cystoscopy.
            Diagnosed with vulvodyina and PN in july 2006.
            Dignosed with ME and IBS Oct 2006.
            Currently taking Amytriptaline 50mg, regular pain killers and birth control!
            Also doing IC diet and regular use of heat packs.
            Still struggling with IC and controling my symptoms so looking for some help

            also recently had abnormal pap, CIN III and just had LEEP done 2007

            Comment


            • #7
              hi kjd:
              I had a cystoscopy with hydrodistention in 1995 for diagnoses of IC.
              I was in excruciating pain for about a year after and since that time my urgency, frequency and everything got worse than before i was before i was diagnosed.
              I don't know why. and no one could ever tell me why. No one knew... i am still on a ton of meds. still suffer terribly. I just don't think it works for everyone..some get relief from it. while others it doesn't bother and others makes them worse.. go figure??
              If the docs and researchers don't have the answers...... i stopped trying to figure it out~~
              But think carefully, ask a Ton of questions, and weigh your decision carefully..
              why do they feel you need another one?
              Best Wishes and i will pray for you.

              Comment


              • #8
                oh KDJ: one more thing have you tried vaginal valium suppositories? they have to be compounded by a compounding pharmicisit.. but they have helped me somewhat>> not a ton but i will take any relief i can get.

                Comment


                • #9
                  I myself decided not to have the hydro after doing much research on it and getting the opinions of my other doctors( gastro doc and gyne). There are so many things they dont tell you about this procedure and what can go wrong. I have to say I really agree with Briza, that it is a Huge $$$$$ maker for the doctors who are doing this procedure. First off, it has to be done in an operating room so right there you are going to pay just for that, not to mention for the procedure itself. Now dont get me wrong, if the doctor told me that I would most likely get better or have less pain after this procedure and that there were not so many risks, I would have done it without hesitation no matter what the cost. But sadly, that is not the case. I go to a group meeting and meet with different women who have IC, and out of the women I have met, maybe 20, only one has had good results with the hydro.
                  Like I said before, I would do tons of research on it first if I were you and also ask your other doctors what they think. My Gastro doc seemed to know more about this procedure and IC than some of the uro's I have seen in the past. Also, always go with your gut feeling. I know the hydro will always be there if one day I decide to do it, but that will be a very last resort for me after all else has failed.
                  Jen

                  Comment


                  • #10
                    I would never discourage anyone from having a procedure that might help alleviate the pain of IC. I'm very thankful that nobody talked me out of having my first hydrodistention --- because hydros have given me enough relief to allow me to live a normal life for my 32+ years with IC.

                    I had my last one in February of 2006 and will probably have another sometime in early summer.

                    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

                    Comment


                    • #11
                      No offense intended, but I have to agree with Donna. I wouldn't survive without the relief that a hydro provides. Before my last hydro my Uro tried almost everything to try to bring me pain relief. Pills that made me sleep all day, physical therapy, instills. I didn't feel even remotely better until after the hydro. I know that it doesn't work this way for everyone, but if you are one of the ones that it does work for, nothing else compares. I was very frightened before my last hydro after reading some of the horror stories on this forum, even though I had gone through the procedure numerous times in the past. I remembered the wise words about the squeaky wheel and realized how much more likely we are to report a bad experience than we are a good one. I am not trying to disregard anyone's negative experience, but I was looking through the boards last night and was reminded by someones comment that sometimes it takes two to three months after the hydro before you start to feel relief, so it is possible that poor results are being reported before the treatment has had time to take effect.
                      Note to kjd: I hope you can find a Uro that is informed about current treatments. It is awful that your symptoms are not being treated properly, especially with what you have been going through for the last two years.
                      Last edited by cia; 05-17-2007, 04:57 AM.
                      I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

                      DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.


                      I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

                      Comment


                      • #12
                        There are so many options for treatment. I would think that your uro would be sensitive to your concerns and try other treatments since you have has such horrible experiences before. Did your uro explain why he is choosing these particular procedures for you? Has he explained the other options he is comfortable with?

                        I know in the past when I am concerned with the treatment that the doctor was suggesting I always started my conversation with, "I would never ask you to do something you are not comfortable doing and I hope you will work with me because I'm not comfortable with what you are asking me to do, could we talk about this?"

                        In all my 50+ years I have had only 1 doctor that was arrogant enough to say no. So I found someone else who would work with me.

                        There have always been other options. Actually sometimes in the end I have returned to the doctor’s choice. But I was ready to make the choice and be confident that it was the best choice for me.

                        After the othopeadic surgeon told me I needed total knee replacement I chose 4 less invasive surgeries (over 4 years). Even though my surgeon was recommending TKR he was making other choices available to me because I was not ready to have the TKR. I respect him for his choices and he respects me for mine. We have to work together.

                        The relationship you have with your physician has to be a partnership for it to be successful.
                        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                        My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                        Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                        I post to encourage and offer total support for rescue instillations.
                        Find me on facebook: L. Clark Thomas
                        Louann

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