Announcement

Collapse
No announcement yet.

PETRIFIED of having cysto/hydro

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • PETRIFIED of having cysto/hydro

    My dad & husband want me to have it done...but I pretty much have my dx W/O the cysto/hydro. I really don't think I can tolerate the pain it would cause - and they don't seem to understand! A simple catheterization w/a PEDIATRIC cath at the ER left me feeling traumatized for days...the cysto/hydro could put me over the edge!

    On the other hand, I don't want the potassium sensitivity test either. My urologist (who is pretty much a waste right now) is confident it's IC (so am I). I CANNOT handle the cysto/hydro test, even if it DID bring me a few months of relief.

    Sorry, I needed to vent. Just THINKING about the test scares me. If I HAVE to have one done...any suggestions?

    Thanks.
    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

    I'd like to be on House, MD as a medical mystery.

    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

    Connor & Mommy by the tree:


    Connor with Santa...so happy!


    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

  • #2
    I understand they can seem barbic and awful. But really they can help. The cysto/hydro can actually not only diagnose IC, but help with the symptoms and put you into a remission. When I had mine if I had a cath it was done in the OR and I never came home with one, and dont even rememeber one. That is a postive side. Now for the other I am one that have not benefitted from them. I have had 3 and none helped with my symptoms. I was done with the first one several days and unfort. with the last one I ended up with a really bad UTI. NOT that this will happen to you.

    The Postassium test in it self is not all bad. It is done in office, but with this one you have a cath inserted to instill the meds into the bladder. The inject different solutions in to see if you have a reaction to the potassium or not. And if you have a postive reaction they remove it right away and instill some numbing med to help with the pain. For me it only hurt when the potassium going in and once the other med was in it did not bother me any more. I did not flare from it or anything.

    We are all different. And it is your choice to choose what to do with your body. Now days doctors are diagnose IC with symptoms alone and not doing either of the above.
    God grant me the serinity to withstand the days ahead!!!

    My myspace link...
    www.myspace.com/patricia_luvs_matt


    Patricia

    In Memory of My Father (Lawerence) 1/25/2007

    Procedures:
    Interstim Sept 2001
    1st InterStim Removal May 2005
    2nd Interstim Implanted May 2005
    2nd InterStim Removed March 2007
    Hysterectomy 1999
    Tubes Tied 1997
    C-Section 1996


    Me and my kids


    Taylor (my daughter) Me and my daughter My son Cody and Taylor

    Comment


    • #3
      Thanks. The more I read, the more I think I'm sticking to my dx W/O cysto/hydro. I have enuf retention issues, don't need any more.

      Sigh.
      (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

      Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

      I'd like to be on House, MD as a medical mystery.

      Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

      Connor & Mommy by the tree:


      Connor with Santa...so happy!


      I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

      Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

      I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

      Comment


      • #4
        When I had just the cysto in the office it was bad for me. But when I had the cysto/hydro under anthes. as an outpatient I still hurt but somewhat under control because they gave me pain medicine through my IV and had pain medicine already at home. You can ask your doctor about how he/she goes about it. It might ease some of your fears.

        Also some patient do very well with it. You might want to consider what to do because the cysto/hydro can show if you have ulcers, pinpoint bleeding, and it can tell you if your bladder is capable to hold much urine. This is something that you have to decide and I can understand your fears of it.

        Sending hugs, Trishann

        Comment


        • #5
          I know you're afraid. I'm a nurse, and I was TERRIFIED. I really did not know what to expect, but now that I've had it done I would do it again just to get the clear, and accurate diagnosis that it gave me. You need to have your doctor look in there to rule out bladder cancer. I'm not saying this to scare you, but it's always better to be safe than sorry.

          It took me a few weeks to recover, and I'm not going to lie to you, I was sore all over and needed extra pain meds, but like I said, I'd do it all over again if I had to just for the peace of mind that there is no cancer in there.

          Hopefully Donna will chime in here and tell you about her experiences. She has them done regularly and gets a lot of relief from the hydros.

          Talk with your doctor, make certain you will have pain meds if you aren't already on them for after the procedure. You might not even need them.
          They put you to sleep for the procedure, you will not be awake and you won't remember a thing. They will also give you a sedative before they take you back to the OR.

          My hydro lasted less than 20 minutes.

          I really wouldn't lie to you about the possible benefits from having it done.
          *IC-- Summer 2004; PFD--October 2005
          *Fibro--Fall 2000; CFS-- Fall 2000
          *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

          Total Abdominal Hysterectomy--adenomyosis--9\08

          04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

          Comment


          • #6
            I agree with Sandy...

            The piece of mind in my case made up for the pain...I knew I wasn't crazy after all. Yes We do need Donna, don't we?! She, like Sandy mentioned is one who truly benefits from the procedure. The only way to know if you would too is to have it done! Dont be scared!

            Erika
            IC diagnosed officially via cysto/urodynamics 1/26/07

            Grade II Endometriosis diagnosed via lap 12/11/07

            "Fall down seven times, Stand up eight."

            "Life is a tragedy for those who feel and a comedy for those who think."

            Current Treatments:
            Interstim Since 5/25/07!
            Birth Control

            Comment


            • #7
              I have had 11 hydros in the past 15 years and they have been a lifesaver for me. While it takes me about a week to recover it is well worth it. I agree with Sandy that it is important to rule out bladder cancer as well. Everyone is different and I believe you shouldn't make a decision based on other people's experiences. Not only will you get a diagnosis with a cysto/hydro you might be one of the lucky ones like myself who gets relief.

              Comment


              • #8
                I was terrified too!

                They tried to do the potassium test on me in the office and I could not withstand the pediatric catheter. My doctor said that I needed the Hydro. I bawled at that moment up until the moment they put me under for the hydro. My uro was fantastic about this. She put Tramadol in my IV while I was under anesthesia and the second I opened my eyes they stuck a belladonna and opium suppository in my rectum. I was also given 200mg of pyridium. I was terrified to pee, but it did not even burn. I went home with pyridium and suppositories. I was sore and uncomfortable for a few days but it was worth it....I knew exactly what shape my bladder was in. I had a moderate to severe case and my doctor was then able to treat me aggressively. I also was happy to know that I did not have any ulcers that would need attention!

                Dawn

                Comment


                • #9
                  Of course you are frightened. That is the most normal thing to be feeling. I know I was so scared. Just the thought of it made me nauseous. Thank God that from the time the uro said he wanted to do it to the time it was done was only a couple of days.

                  Oh you should have seen me the day I went in to have it done. I was such a mess. After I was admitted and had the gown on, I became a complete lunatic. I kept telling my husband that I loved him and no matter what happened to me that he was to remember that. The nurse came in to put in the IV to be used during the procedure and asked if I was nervous. Whatever gave you that idea, I thought. Was it the fact that you could see my hands shaking and the death grip that I had on the sides of the gurney? Or was the permanent indention of my fingers on my husband's hand? She then told me that she was going to give me something to make me relax. Boy oh boy, did it ever. :woohoo:

                  The procedure (which only took about 20 minutes) was done while I was completely asleep. When I woke up in recovery, I did have a catheter that had been inserted once I was out but they removed it right after I woke up. I was given pain meds right after I was awake plus prescriptions for more pain meds and an antibiotic and was released to go home and rest. I never had to take the pain med but I did take the antibiotic. The first time I urinated, it saw a little blood on the tissue and felt a burning, both of which I was told to expect. I rested that afternoon and got up, made myself a bowl of oatmeal and watched TV with my husband. The next day, I was able to do my usual daily stuff without discomfort.

                  I am not going to tell you not to worry about this procedure should you decide to go ahead and have it done because I know you will still worry. We all do. I hope that what I have told you about my experience will lessen that worry. I will agree with Sandy, though. I am glad I had it done because it gave me a "for sure" diagnosis which, in turn, started me on the road to recovery and a more normal life than spending every day in pain.
                  Sharon

                  Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                  Where I can be found most days.



                  Link to the ICN Patient Handbook:
                  http://www.ic-network.com/handbook/

                  Link to the IC Diet:
                  http://www.ic-network.com/diet/


                  IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                  Comment


                  • #10
                    I know you are affraid. And I am going to be honest with you.. I wish I had never had it done.. My bladder ruptured after the hydro, this is very very rare, but if I would have went with my better judgement I would not of had it done.. I even had went and got a second opinion..

                    So you do what you feel comfortable with, its your body! I would have done the potassium sensitive test if my uro would have ask me, then I would not of went through all the agony of the cysto/hydro..
                    Just remb, This is just my opinion

                    God bless you and good luck with whatever decision you make..
                    Hugs
                    Ronda

                    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                    Link to Patient Handbook:
                    http://www.ic-network.com/handbook/

                    Diet Reference Sheet:
                    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                    Meds I have Tried:
                    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                    Lexapro< Bad reaction to this med!
                    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                    Dx With IC in Nov 2006 with Hydro/Cysto
                    Hydro/Cysto Caused Bladder to Rupture.

                    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                    Comment


                    • #11
                      I just read a medical journal report that said 89% of the patients who had hydrodistentions done got relief...24% of this group only had short lived relief and the other % had relief for an average of almost 5 months.

                      I really hate it that Ronda's bladder ruptured, but it is SO, SO very rare. I still feel there was malpractice in this case. Get a 2nd, or 3rd opinion and if you still don't feel comfortable then don't do it, but make sure you know all your options and are willing to risk an undiagnosed bladder cancer. Bladder cancer isn't all that common either, but if there's any risk of cancer that I can prevent then I'm going to do it...i.e a colonoscopy, upper scope, pap smear, etc.

                      Whatever you do we'll respect your opinion.
                      *IC-- Summer 2004; PFD--October 2005
                      *Fibro--Fall 2000; CFS-- Fall 2000
                      *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                      Total Abdominal Hysterectomy--adenomyosis--9\08

                      04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                      Comment


                      • #12
                        I know you are terrified and I was too! I am the biggest wimp in the world ever.
                        Now I am not going to lie to you...........I wish I had never had it done as I was left with more pain for 8 months afterwards and felt traumatised!!!

                        Now if you are happy its IC from your symptoms etc and so is your urologist then maybe this is something you dont need to do? At the end of the day there are risks and it didnt help me at all, but this is just my opinion!!

                        some people have had some good results from the Cysto/hydro and have had lots and lots as it eases their pain so you never know it could help you!

                        Either way its your body and your decision and I wish you luck
                        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


                        • #13
                          I've had about 8 hydros done in about 5 years. (average about 2 a year). They help me for about 6 months or so. I usually have them done on a Thursday so that I can recover and rest on the weekend and return to work the next Monday. It takes about 20 minutes or so to do them. In fact, I'm in the middle of trying to schedule another one. (I've learned the hard way, don't wait till I'm so bad off that I can't take it anymore!!)
                          Either way, whatever you do, good luck.

                          Comment


                          • #14
                            you're definitely not alone - I was adamant that I would not have those done, but upon doing some talking with the urology clinic staff & our family doctor, they told me what to expect and that it's done for other reasons too (ie: ruling out other problems)...

                            honestly, it was scary going in, but the people I had were very kind and patient...and when I woke up after it all, I felt incredible, like I'd had the best rest ever!...and it didn't hurt to pee at first (think they numbed the whole area up there)...it stung like crazy for the first afternoon, but motrin helped, along with heat and lots of fluids...I know it's not always that easy for everyone, but don't let the negative stories you hear deter you from it because that's what happened to my husband & I - until we spoke to the health care professionals attending to me; the internet can be your best resource and also your worst enemy sometimes because everyone's experience is very different...

                            think it through and talk more with your doctor(s) before you decide - I am VERY glad I did it; it didn't really give me tons of relief, but calmed my horomonal flare ups some and gave me peace of mind knowing it wasn't cancer or something else in there!

                            good luck in whatever you choose to do!

                            Comment


                            • #15
                              Oh I agree with you Sandy... I know there is so many people who have had relief from the hydro/cysto... My case was very rare, but all surgeries can have there risk..Like I said I had a even gotten a second opinion,and that dr said the same thing, so it is highly recommend by the medical field..
                              Hugs
                              Ronda

                              ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                              Link to Patient Handbook:
                              http://www.ic-network.com/handbook/

                              Diet Reference Sheet:
                              http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                              Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                              Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                              Meds I have Tried:
                              Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                              Lexapro< Bad reaction to this med!
                              Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                              Dx With IC in Nov 2006 with Hydro/Cysto
                              Hydro/Cysto Caused Bladder to Rupture.

                              Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                              ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                              Comment

                              Working...
                              X