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cysto / hydro Friday - need encouragement

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  • #16
    Everyone is different in how they are affected when going through invasive procedures. If you are having any doubts, maybe you should talk to your doctor and tell him/her your concerns and ask him/her all the questions you may have,( i.e. all the pro's and cons's of this test etc..).
    I wish you the best of luck in whatever you decide to do.
    Jen

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    • #17
      I just had mine on monday. I was so nervous that I told them as I was heading in to the OR that I was heading for the door!!!
      They were not able to start the IV first in me but if they had then I would of had medication to relax me. So they put me out in the OR. I feel very crampy & sore like I have done a ton of sit ups but I could work today if needed.
      I am glad I had mine done. They took biopsies & burn stuff off my bladder. I will find out more at my post op appt.
      Hang in there! You will do fine!
      After the hydro they were great! I asked for a warm blanket to put on my lower abdomen to help with the pain and ice for my burning. They gave me fentenayl(?) and dilaldid ( again sorry ?) for the pain. it was the drive home the was awful---for my tummy!
      mom to 3 wonderful kids


      IC symptoms 7/03,
      hysterectomy 11/04,
      prolapse cervix 7/07
      diagnosed: IC 2007
      IBS 2008

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      • #18
        It is kinda strange that they use general anesthesia for that kind of procedure. They don't even put you under for a colonoscopy - just sedate you a little. When I had the colonoscopy I asked if they could just give me demerol or something instead of using the sedation and my gastroenterologist said that was ok. I felt a little jabbing here and there but nothing horrible. Is it possible you can request to be just sedated or possibly given something to ease the pain for cysto/hydro?

        Regarding in-office cystoscopy, I had my first one last monday and it wasn't that bad. My urologist doesn't really recommend cysto/hydro for many reasons - one being the unnecessary general anesthesia and she also said that they can't really see anything more then they can with in office cysto. I know her and all the urologists in this practice are highly reputable and are the best where I live. However, from seeing how many people have had cysto/hydro done it seems many other urologists recommend it for accurate IC diagnosis so it's hard to say. It seems my doctor didn't "definitely" say IC was causing some of my problems, but said I could try the pain meds for that to see if it helps. Luckily, since I had the cysto, I have felt much better for some reason (knock on wood) and havent had to use any meds. I have a bottle of Urelle tablets that I haven't used as of yet. I guess my recommendation would be that if your urologist recommended cysto/hydro for more accurate diagnosis I would probably just go through with it, but maybe you could ask if they could use another form of sedation or pain killer?

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        • #19
          As a "veteran" of many hydrodistentions, I will state that I would never want to have one without anesthesia. I also had a colonoscopy with just versed, but there is absolutely no similarity between the two procedures. In a colonoscopy, an instrument is inserted into the rectum and fed into the colon to view it; sometimes polyps will be removed (mine were). There was absolutely no pain afterwards.

          When I have a hydrodistention, there is definitely some pain immediately afterwards for a few hours, which tells me that the procedure would not be fun without anesthesia.

          I hope you will find that you have some relief from your symptoms from the procedure, as well as a diagnosis.

          Donna
          Stay safe


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          • #20
            Hi everyone out there in IC-land!!

            Sorry I don't have any experience with Hydrodistension therapies, but what I may now say may actually help some of you right now. I have only been diagnosed with "possible" IC for 2 months, and am currently taking amitriptyline 10-20mg for enough relief to sleep. I have spent several days on the internet now, and yesterday, finally, I feel like I am coming to understand my particular problem, so bear with me as I tell you just how I came to my breakthrough conclusion, and self!!-diagnosis. I guess you could say this is completely off-topic, relative to one's upcoming hydro-distention appointment, but then maybe my information is absolutely a perfect fit.

            I won't go into all the details, but I felt I had a bladder infection, and the docs said no. Then they started to treat the symptoms of an irritated bladder, you know the routine, all of a sudden your diet is called into question, you start blaming yourself that you had that one cup of delicious coffee every day, and maybe you yourself set your body up for this terrific fall from grace. I went through the dread, doom and gloom phase, thinking , "what could be wrong?" and finally went to a Kaiser urologist with a laundry list of symptoms. After an office cystoscope, he declared possible IC in the early stages. Now I had to run around telling friends and family I had this new disease wherein my bladder lining was either leaking or disintegrating. I stumbled over saying the word "disease." It just didn't feel like I suddenly had acquired a disease. I read early on a Moldwin interview wherein he said that many IC women had scoliosis, or a history of bicycle riding for long periods of time. Bingo!!! That was me. I lived on a bike for 41 years, living in Davis, California off and on for 23 years without a car. But as I researched further, and even mentioned these possible links to my doctors, I did not get their attention. I joined an NIH study in Stanford for amitriptyline, so this drug could get recognized as first line treatment for IC patients, received the placebo, and bowed out of the study, got the drug from Kaiser, and Voila! the nocturnia went away, as well as many of my day time symptoms. But I could still feel that the bladder pain was just being masked by the drug, not particularly healed. I read about Jill's story of going to the SF Doc who treated her with electrical stimulation in the ankle, the end-point of the third sacral nerve, that also innervates the bladder and pelvis. She declares that along with Vistaril, an antihistamine, the S3 stimulator she could use at home really did heal her bladder. Of course I wanted to go right to that doc in SF, but haven't yet.

            In the meantime I have been taking Aloe Vera juice, Gotu Kola tablets, Glucosamine with MSN, and Quercetin, all in an attempt to heal the lining of my bladder. I have been reading various posts here on this wonderful website, hoping to find my own cure. Yesterday I think I finally read about the real cause of my particular problem.

            Kara-29 added a new diagnosis to her situation. She mentioned PNE, pudendal nerve entrapment, and as I had been thinking lately that my problem is one of nerve damage, I immediately went to that website: International Pudendal neuropathy association.org will get you to their website. The urologist originally asked me how I get relief, and of course I said my symptoms go away while sitting on a toilet seat. And in the course of these two months I noticed strange products on this website, those little donut cushions with the hole cut out for sitting. And someone mentioned sitting with spread legs, or knees pullled up to relieve the pain we get. If the root of the problem is our bladders, why does varying one's position relieve some of the pain?? If my bladder is the root of the problem, why do I have a difficult time sitting in front of this computer, getting numb and very uncomfortable? Pudendal nerve entrapment seems to be the real diagnosis for me. This nerve can become flattened with repeated pressure from a bicycle seat, and can form some kind of fibrosis around it as protection. With a thickened or flattened nerve, it no longer comfortable squeezes through two sacral ligaments, hence the nerve is not properly innervating the bladder, the pelvis, the vulva, and the urethra. Here we are trying to heal the lining of our bladders, but the poor nerve is still being squeezed. For me, the lining of my bladder is not the root of this problem. One look at the complicated tangle of muscles, ligaments, and nerves of the pelvis tells you why our 15 minute doctors at Kaiser aren't getting down to the real root of our problem, or maybe just my problem. I encourage everyone who thinks they have bladder problems, and also has trouble sitting comfortably to head to that Pudendal Neuropathy website. I will soon see a Neurologist at Kaiser, and will come back to post my diagnosis. My suspicion is that many IC sufferers have nerve damage of one kind or another. The bladder lining is not functioning properly because of improper innervation. Let's stop putting the bandaid on the lining of the bladder and get down to the real basic nerve issues. I hope this helps at least one person out there. And thanks again to Kara29 for giving me an awareness of her very important diagnosis. The ability to come here and read all of your stories has lead me to my path of healing, even if it requires a trip to France for surgery with the pudendal nerve entrapment specialist, Professor Robert, in Nantes France. The power of the web is amazing, and I so appreciate all the time you all have spent sharing your medical histories, therapies, and coping strategies. Heart-felt thanks to Jill and the contributors.

            Margaret in Sonoma

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