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Well, I had my Urodynamics testing

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  • #16
    I have had 4. Before I was diagnosed 3 other gyne. each did one. Dr. Dell did a study, not to diagnose IC but to see if I needed reconstruction surgery for prolapse. I saw the pinpoint bleeding during the one he did. He turned the monitor so I could see and explained everything to me. It was not unpleasant. He doesn’t do unrodynamics to diagnose IC.
    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

    Comment


    • #17
      I personally wouldn't do it. Of course, I'm the same person demanding general just for the scope.

      You're already diagnosed, have been around here for awhile, I just don't see how that can help with anything. What's he gonna do, bring out the secret gold standard cure for IC if those tests indicate something interesting?
      • 27 year old student
      • Had symptoms since I was 5
      • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
      • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
      • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
      • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


      Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

      What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

      What didn't work: Elavil, vistaril (12/22)

      Comment


      • #18
        Having one

        I'm scheduled for a urodynamics test in a couple of weeks. The doctor needs to put in a bladder sling due to incontinence and said this test was necessary prior to surgery. Has anyone had a bladder sling?

        Comment


        • #19
          I have a sling and have never regretted having it put in.

          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


          • #20
            Originally posted by bjwright View Post
            Controversial in already diagnosed patients. Please... I agree w/Sailaway-- they don't need to buy a new car, house, etc. They didn't even TELL me it was urodynamics-- just "we need you to urinate into this toilet." I refused the "take off your underwear, cough and stand over the chux." Demeaning .... and stupid. When I'm flaring, I lose urine anywhere from5-30 cc's... measured it myself. No need for further $$$. Saved myself some $$$ but it makes me I missed the urodynamics refusal.

            I like the doctor... but you have to watch out for the "high rent zip code guys."
            A medical editor friend said my instincts were right about the urodynamics; a lot of the uro guys on the inside track think it's a waste.

            And WHAT/WHY do they need an in office cysto for an already diagnosed patient? Torture--not having it and check the zip code. errrr
            I just want to add , I have a LOT of faith in the training and experience in this doctor. Apparently the doc that that did my first cysto/hydro was less than forthcoming with the info he sent to my new doctor. Which frankly, doesn't surprise me. His advise to me was to "Go home and suffer".
            My new uro/gyno has done tests to verify what he thinks is going on and also had to disregard a lot of the info that was given by the other doctor as it was vague and basically made no sense.
            Once I got past the pain, I don't have a problem with the tests. I learned that I have a VERY small irritated bladder. Probably smaller than normal from birth. And I also do have hunners ulcers which will be lazered off at my next hydro. And of course, IC.
            As far as his "zip code" goes, he's a VERY well respected doctor and chief of the uro/gyno dept at UT southwestern Medical School. Yes, it's a prestigious area of town, but I have faith that the things he's doing are being done in order to get more knowledge about me personally. We always say here on this board that we are all different. If I'm different in anyway, I WANT my doctor to know about it regardless of his zip code. I feel that although I have gone thru quite a bit of pain and discomfort in this process it will be worth it if he can find the answers to my particular problems. Contrary to popular opinion, the doctors are not the bad guys. I went to HIM. And it would be irresponsible on my part to not follow thru on tests and treatments he recommends in order to give me a better quality of life because I think he 'needs a new car'. For the people who choose not to accept their doctors suggestions, I can only say that I'm doing my part. And I trust and believe that my doctor (who has had a LOT more experience in this area than I do) is doing his best to help me with the limited information he got from my first doctor. I understand being bitter and resentful about a treatment program not working for you. But I'm doing everything I can to make sure that whatever program we come up with is done with as much information on both our parts.

            I quit posting on this board as I felt attacked for following my doctors instructions. I feel as though, since we're all different, this was my choice to make and therefore when I shared what had happened to me I was looking more for support and not for a hanging of my doctor and a degradation of the choices I had made.
            I wish nothing more for all of you who suffer than to find a program that works for you. And just as importantly, that when you discuss you treatments and or tests, you are supported by the people here and more importantly the people in your "real" life who's support, caring and concern matter the most.

            This will probably be my last post because I have thought about this particular thread longer than I should have. I realize that I trust my doctors, my husband and kids are my BEST support and I just don't need the negativity in my life. Good luck and best wishes to you all.
            Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
            Lexapro-20 mg
            Aciphex
            Ambien-as needed
            Percocet-7.5 up to 3 per day as needed
            Valium-10 mg x2 per day
            Phenergan-1 at night
            Prelief w/everything
            Now recovering from acute pancreatitis

            Currents treatments that help somewhat:
            Heating pad
            Hot baths
            Ice
            Being VERY still while lying down with legs elevated

            Comment


            • #21
              I had a sling put in several years ago along with several other procedures to correct pelivc prolapse. It was a successful surgery. I am glad I had the surgery.
              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

              Comment


              • #22
                KatieB

                I am sorry you feel this way, i did not agree with the person who posted back to you that way.

                I actually agree with you I have had lots of tests I didn't really want to do but figured if they gave my Dr. one more piece of info about my case that was good enough for me.

                I really think having a urodynamics test was one of the best things I have done on my road to diagnoses and treatment.

                I have never figured a Dr. was doing a test to pad his pocket, it took me a few trys to find a good uro and a good gp whom I can work well with and be part of the decission making process.

                I am really sorry you are leaving us, there are many really good people here who really do care about others and really do try to help others.

                I can't say what was going on with the person who posted to you in an inappropiate way, but everyone is human, maybe she was having a really bad day and took it out on you, no this does not make it right but it happens, maybe she is just a sh** distruber and you got the brunt of it i don't know.

                What I do know is there is way more good people here than bad, and with a bit of time the people whos motives are not good get weeded out.

                I am sad to see anyone leave over something like this, people do come and go but often it is because they are doing so much better they no longer need the support.

                So I would ask you to reconsider, I will tell you I am here quite often, not everyday but most days, if you have questions or concerns and don't want to post them, feel free to PM me.

                I am sure lots of people I have far to much to say about a lot of things, and think I probalby post too much about my opinion, but you know I don't care, don't read my posts if they are too long or you don't want to know my opinion.

                I myself find it very theraputic to have a place to write all this stuff down, and it is a good place to find out about meds others have tried, tests, etc.

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

                Comment


                • #23
                  bladder sling

                  Thanks all for your info re: bladder slings. I don't know much about it and value everyone's opinions and stories. Thanks.

                  Comment


                  • #24
                    Unfortunately I'm one of those bad cases when it comes to the "sling".
                    I wish I never had the surgery. At the same time I had a Perineorraphy, anterior and posterior repair and the tvt (monarc mesh) under my urethra.
                    I'm one of the unlucky ones.
                    Canadian daisy

                    Current Medications: doses go up and down..
                    Dilaudid, Elmiron, Neurontin ,Flexeril ,Pariet, Ibuprofen, Ativan, Valtrex, Vitamin D, Caltrate, Premarin Vag Cream, Triamcinolone Injections in Perineum, Depo-Medrol for Trigger Point Injections, Biscodyl, Citromag, Milk of Magnesia, Xylocaine Jelly

                    Comment


                    • #25
                      Ask for anesthesia or conscious sedation

                      Hi, I have had a cystoscopy and I DEMANDED that I be put out for it and let them know I had lots of concerns re pain management after the procedure. Because I was assertive (yet respectful!) everything went off without a hitch and I was much less fearful as a result. It may seem a little extreme to demand anesthesia for this procedure to some doctors, but for me getting cathed hurts for days and causes flares, so there was no way in hell I was going to let them use a cystoscope on my already painful bladder. Not to mention the distention.

                      I also declined to do urodynamics testing bc I already had a cystoscopy. For me a (at the time) it was too much pain, stress, and damage to my system.

                      Remember, you are in control of your body and what is done to it. Often I think we forget that doctors are not gods, and they have to have our consent. If he does not understand when you tell him your concerns it might be time to see another doctor. Good luck!

                      Comment


                      • #26
                        In about 2 weeks I am going to have Urodynamics on a tuesday and cysto/hydro on the next day. This will be 4 hours from my home, not sure how long it will be until I can come home after wards. Part of the urodynamics is to confirm or deny whether or not i need my bladder and urethral suspension fixed.
                        I am not really sure what to expect, from any of it.

                        Comment


                        • #27
                          awww i hope katie really isnt leaving us.i myself have had to take mini breaks from this board because of some of the negativity here makes me feel worse just reading it.in the beginning around diagnosis time, about 4 months ago,i was at a depressed,negative point too so i can relate to alot of the "negative" posts here.

                          this board is a good place to vent and i am glad we have it.we just have to pick and choose what we decide to read and take to heart. all of us are humans here and living with a chronic condition or more than one.we are all very different in our personalities,opinions,and even ic/our bodies.we all should become united by what we have in common--our illness--and not become enemies.

                          no one is right or wrong for what treatment plan or options for their health they choose to take. its their choice. if theres "no cure'' we might as well try everything possible we can to get better or do as much research as we can right?

                          i agree with poohs post about" Remember, you are in control of your body and what is done to it. Often I think we forget that doctors are not gods, and they have to have our consent. If he does not understand when you tell him your concerns it might be time to see another doctor."

                          if something is not working for you or a dr isnt,its time to make a change.dont just sit around and complain about it.express your concerns.

                          i've decided i'm going to live my life anyway through all this pain and believe there is a cure or almost a cure for me.i am not going to wallow in self pity..my life is not over.i am not giving up on the race.

                          be thankful and grateful for what you DO have. life can change in a minute and you could lose everything you have/own and/ or people who care about you or make life better for you. that's one of the many lessons i am learning from watching the recent tornado victims on TV here in the South.

                          for example a roof over your head, a job or social security disability, a spouse or relationship,food,family,friends,access to the internet,access to doctors and medications and so on.

                          i realize alot of the older women or people who have dealt with this for awhile and have not found a good treatment plan or what works for them continue to wallow in the self-pity stuff. one thing my counselor tells me is to never ever give up,even when life seems hopeless.

                          having support from other non judgemental ic patients,caring family and friends and professional health care workers are what are helping me get through this. like many of us i never thought it could happen to me,but it did and now i have to live with it the best i can for myself and try to have a positive attitude about it.these are the cards god has dealt us. we can overcome adversity,or,we can wallow in self-pity.i choose to overcome.

                          i do know theres a lot of us suffering out there that need to vent but maybe we should do so in a blog or write it down in a journal sometimes.i agree with the people who keep emphasizing we are all different and theres no treatment that works for everyone. it is hard living with an illness the medical community says theres "no cure" for.add other illnesses on top of this illness like many of you have and it can make life unbearable at times.
                          Newly IC diagnosed as of February 2011.

                          Medications I'm on that seem to work:
                          Zoloft- one once a day
                          Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                          Failed Meds:
                          Elmiron-after 4 months,digestive side effects got to be too much
                          tramadol-allergic
                          DMSO treatments(5-6)
                          probiotics

                          THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                          AROMATHERAPY-candles,incense
                          Village Naturals Aches and Pains Peppermint Bath Salts
                          Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                          ACUPUNCTURE/HERBS
                          Significant pain relief so far.

                          MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                          ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                          Add me on facebook Angela Hasic

                          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                          Lord, make me an instrument of your peace;
                          where there is hatred, let me sow love;
                          when there is injury, pardon;
                          where there is doubt, faith;
                          where there is despair, hope;
                          where there is darkness, light;
                          and where there is sadness, joy.
                          Grant that I may not so much seek
                          to be consoled as to console;
                          to be understood, as to understand,
                          to be loved as to love;
                          for it is in giving that we receive,
                          it is in pardoning that we are pardoned,
                          and it is in dying [to ourselves] that we are born to eternal life.

                          Comment


                          • #28
                            flowerangela

                            I agree with what you wrote totally, well written, if I come across posts I don't like, I just don't read them, once in awhile I find there is a person I just don't agree with or they always seem to be looking for an arguement, I just choose not to read their posts.

                            I agree we need to stay positive and be prooactive with our own health care, keep your self educated about IC, and be willing to help educate you dr's, and other healthcare workers.

                            Yes sometimes it takes searching a lot to find a good dr. no there is no cure at the moment, but that could change tomorrow. At least thats what I focus on.

                            Lucky for us there are quite a few treatments that can help, maybe not all of them will help all of us, but most people do find things that do help them.

                            I have had IC forever and as my body changes I find what works and dosen't work changes, so I find I have to keep on open mind and sometimes I need to go back and retry things that didn't work in the past, or as I read here try past things in a different ways.

                            Sometimes pain blinds me and I need someone here to remind me of something simple I can do for myself.

                            I think one of the hardest things is you find something that works for you and then you get a bad flare and you just don't know what you have done to get the flare. It is hard to take that you feel you are back to square one again. Sometimes it passes quickly and maybe you don't figure it ouy maybe it lasts and you have to change what you do, but stay positive and it will pass in time and some hard work.

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

                            Comment


                            • #29
                              I am having one tomorrow.

                              Uro says he needs to rule out other things. I'll let you all know how it goes.

                              Comment


                              • #30
                                My uro used lidocaine gel and spray before my cysto, I had little pain during the procedure it was after that the severe pain started. I have my first hydro scheduled next friday and I'm terrified:
                                IC diagnosis 3 weeks ago.
                                Vesicare 10 mg once daily
                                IBS and Gerd-Zegerid
                                IC diet
                                Elmiron 100 mg three daily
                                Hydroxyzine 25 mg at night
                                Amitriptyline 10mg at night
                                Diovan 60/12.5 daily
                                Topral 50 mg daily
                                Zoloft 100 mg at night
                                Klonopin .5 twice daily

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