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Hydrodistention- Neg or Postitive Results

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  • whybrewm
    replied
    Worse after hydro

    I had my 2nd hydro ten days ago and feel worse than before I had it. I am thankful to see some other people had trouble too, because I was getting worried we were going down the wrong path. I was bedridden for several days and very very sick. I have more energy now, but still feel "inflammed" on my lower left abdomen and pelvis. Hoping this will go away soon. Supposed to go back to work on Tuesday. Anyone on an anti-inflammatory? I'd like to explore that with my urologist next Monday.

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  • Katarina8349
    replied
    Tell the doctors!

    Originally posted by StephN View Post
    Negative experience. I did get a diagnosis but now they are even wondering about that and also it definitely made me feel worse and haven't still recovered and it has been almoost 4 months.
    I would never get another one of these done!
    Tell your doctors about your experience. It is the only way we can turn this horrible upsetting experience into something good. Let the doctors know and save others from going down the same, painful road. The doctors should be informed about the risks, and make them clear to whoever they ask to have this procedure done. The patient has a right to choose, and to have all this information - the pros and cons - outlined to them. I didn't. I blame the doctors, fully, but in order NOT to go crazy with anger, I have decided to believe that my "poor" doctors did not know the risks. This is why I wrote EVERY SINGLE doctor who has treated me in the last 9 years and told them of my experience. Not surprisingly for some (and surprisingly for me), neither of them acknowledged the letter (which was formulated as a simple account of my experience and as an advice, NOT as a blaming letter).

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  • StephN
    replied
    Negative experience. I did get a diagnosis but now they are even wondering about that and also it definitely made me feel worse and haven't still recovered and it has been almoost 4 months.
    I would never get another one of these done!

    Leave a comment:


  • Katarina8349
    replied
    Originally posted by Snowden1 View Post
    Katarina,
    I agree with you. Doctors should tell you that you "can" get worse from having this proceedure done. My uro keeps pressuring me to do this and has not said anything about more pain or getting worse. I will not have this proceedure. I am glad it works for some, but it seems I am always falling on the bad side in the coin flip.
    Teresa
    Good for you. Wish I had read these forums before I had the procedure done. Don't follow doctors' advise blindly: consult things with other specialists, with other patients, and with yourself before doing anything with the part of your body, which is fragile. Do what feels right, not what people tell you to do.
    Recently, I spoke to a renown surgeon, who told me: if you were my daughter and I met you earlier, I would have told you not to have the procedure done. ...I just cried. That's surgeon, well practiced in operating in the uro-gynecological sector, speaking! Am full of anger towards the doctors who pushed me into this and feel like speaking out and letting others learn from my bad experience. I know that for the operating doctors, mine was a "succesful standard operation" with nothing out of place. That's what the books and doctors mean when they say: it is a standard thing that bears little risks. Yes, my bladder was not punctured, I recovered well from the anesthetics, I did not get an infection, .. but I am 100 times worse off than before the operation. This is not acknowledged by the doctors ... at least not publicly.

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  • Snowden1
    replied
    Katarina,
    I agree with you. Doctors should tell you that you "can" get worse from having this proceedure done. My uro keeps pressuring me to do this and has not said anything about more pain or getting worse. I will not have this proceedure. I am glad it works for some, but it seems I am always falling on the bad side in the coin flip.
    Teresa

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  • ICNDonna
    replied
    I, on the other hand, have been able to live a normal life thanks to hydrodistentions. I've had over 40 in my 34+ years with IC. I had one just a month ago and feel back to my normal now. I can't imagine how horrible my life would be without them. When I went in my pain was at a 10 --- My bladder is now down to about a 2.

    Donna

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  • Katarina8349
    replied
    Originally posted by Moonheart View Post
    I absolutely would recommend against this procedure. I know this is a fairly even split positive and negative, however, for those negatives, that rue the day they accepted the procedure, there is no positive.

    My symptoms were horrible before the procedure, but I could manage to struggle through if I ran out of meds or something. But after the procedure, it's enough to make my eyes roll back in head and ask to be put out of my misery.
    I just wish doctors read this forum. It is not ok for a procedure to have a 50-50 chance of making things worse as making things better. I was told by the doctors, who asked me to have this procedure done, that it is a standard procedure that bears no real risks. I was told that the chances of things going wrong are really really low. This is why I agreed to have it done. Now, had I known that 50% of the people who have it done actually feel worse after, no way I would have agreed! The procedure took my life away ... now all I do is try to handle the consequences. I wish I could sue the doctors to pay for all the treatments on the world, because dealing with this illness is hard financially as well as emotionally.

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  • Moonheart
    replied
    I absolutely would recommend against this procedure. I know this is a fairly even split positive and negative, however, for those negatives, that rue the day they accepted the procedure, there is no positive.

    My symptoms were horrible before the procedure, but I could manage to struggle through if I ran out of meds or something. But after the procedure, it's enough to make my eyes roll back in head and ask to be put out of my misery.

    Leave a comment:


  • Katarina8349
    replied
    Hello Branmun, can you please tell me more about the Theiles massage? How does it work? Is ot painful? Is it something osteopaths practise? How long does it take for effects to be seen/felt?
    My main problem is pain and I too have been told that I have high tone pelvic muscles. I am now seeing an osteopath for another problem (reoccuring shoulder pain) and he wants to treat me for the IC too. Let me know please a little more about your experience.

    K.

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  • branmun
    replied
    Originally posted by Katarina8349 View Post
    I would discourage everyone from having this procedure done. I have been suffering from IC for 9 years, without it being properly diagnosed. The health problems associated with it have always been troublesome but nothing compared to how they have been since the procedure. I've had more pain and discomfort than ever before, with little respite, since I had it done: nearly 8 months ago!!! I got to the point of actually wanting to sue the doctors for not having talked to me about the possible risk of having my symptoms worsen. If you've had problems for a long time, if antibiotics don't work, if doctors find nothing wrong via non-invasive tests, then just take it for what it is: a set of urogynecological symptoms classified as IC. Doctor's certificate is no better than your own conclusion. Get treatment for it - see if they work. Do not invade a sensitive area with more invasive instruments. You might end up like me, blaspheming the day I had it done. I am seeing a specialist in Rome, who is IC guru. I get alternative treatment for IC because I refuse to take drugs and refuse to be pumped up or probed EVER AGAIN.
    I'm right there with you. I've only been diagnosed by my symptoms. My IC symptoms are extreme to me, however, I believe I would still only fall into the mild IC category. I refuse to have the procedure done fearing it could possible make things worse. I have had a lot of success with physical therapy & lots of milk-pretty natural alternatives if you ask me. I believe in being as less invasive as possible.

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  • Katarina8349
    replied
    Sorry, just copying in a reply I sent another girl. Apologies for the very late reply. I was put on 2 things, by the doctor who treats me, both of which are alimentary integrators and NOT medicines. They helped me almost instantly, but their effect did wear off somewhat. They are Pelvilen and Basen Polver Pascoe. The first is actually an Italian product. The second is from Germany and is composed of minerals. It serves to alkalize the body. I take these regularly and I feel they are helping me a great deal. The other thing I was prescribed, when the pain intensified, were B12 vitamin injections. NOt sure how it all works, but I am determined to fight the disease without making other things worse (which is what traditional medicines do for me). IF you wish, I can keep you updated .. Best, k.


    Originally posted by Landish View Post
    I also have been suffering from IC for 9 years and I would be interested in hearing about any new alternative treatment.
    I can't take drugs. A small amount of any chemical substance makes me feel indescribable pain. I have been treated like Guinea pigs. Sometimes I was prescribed for 6 pills a day when just one hurts me a lot. I think this entire chemical makes my bladder worst.
    The hydrodistention makes me feel close to normal but a short period of time ( a week ) and I can’t have general anesthesia every week. I think general anesthesia is very risky, you never know if you will be back.

    Katarina if you are trying something’s different please let me know.

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  • Katarina8349
    replied
    alternative treatment

    Originally posted by Salsa View Post
    Are you having any luck with alternative treatments? I would be interested in hearing anything that might be helping you some! Thanks!
    Apologies for the very late reply. I was put on 2 things, by the doctor who treats me, both of which are alimentary integrators and NOT medicines. They helped me almost instantly, but their effect did wear off somewhat. They are Pelvilen and Basen Polver Pascoe. The first is actually an Italian product. The second is from Germany and is composed of minerals. It serves to alkalize the body. I take these regularly and I feel they are helping me a great deal. The other thing I was prescribed, when the pain intensified, were B12 vitamin injections. NOt sure how it all works, but I am determined to fight the disease without making other things worse (which is what traditional medicines do for me). IF you wish, I can keep you updated .. Best, k.

    Leave a comment:


  • Diamic65
    replied
    It was positive for me. I've been having IC FALRES more than normal. Its not UTI. So I'm thinking about having my URO do another one. It seems to help. The last one I had done I felt really good maybe a couple FLARES after that.

    DIAMIC65

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  • squeezielouise
    replied
    I had two hydro-distensions last year and the first one helped me somewhat, but the second was of no help at all, and just caused me to have a week off work.
    Interstingly I went and saw a pain management consultant last week who told me that the hydo-distensions probably did me more harm than good as they likely just aggravate the already brittle nerves in the pelvis more. He recommended I steer clear of them. Am seeing a new urologist next month, so will be interested to hear what his opinion is.
    But this pain guy wasn't a surgeon, so that probably has something to do with his advice.

    Leave a comment:


  • maryla
    replied
    Hello,

    I'm glad to hear that your mom's hyro was a success. I usually have 2-3 a yr. The last few have been kind of bad though. But, I keep hoping that they give me some relief. I just had one in May, but I think it's time for another one. So, probably sometime in Nov. I'll have it done.

    Hugs and blessings

    Leave a comment:

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