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Any guys have hydrodistention and did it work?

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  • ICNDonna
    replied
    In some instances hydrodistention does help. In my 36 years with IC, I have had over forty --- the most recent was in May of this year.

    Donna

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  • ouch_a_lot
    replied
    All your stories are very similar to mine. My pain came on over a number of years.

    I have had frequency issues since I was in my early teens. Proper full on pain now for 4 years. Im 41.

    I have tried every pill, procedure and instill you can name. None of them have helped apart from elavil which doesn't really do much apart from mask the pain slightly. I hate it and quite often stop taking it as I cant stand the drowsiness.

    I would love my old life back. Some times I think removing my bladder is going to be the only way. That will probably get edited.

    The good news is that I manage to work and have the love of a very strong family.

    Anyway back to upgrading my iphone which seems to be taking a rather long time.

    :-|
    OUch.

    Oh and to answer your question. I have had three hydro-distensions. None of them did a thing. The first one put me in hospital for a week as my bladder went atonic. Evidently the uro over inflated it. I was catheterized and sat in a hospital bed racking up a huge bill. You can guess my advice about hydros.

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  • Cal2DC
    replied
    Hydro did help me

    I got a hydrodistention about six months ago. It was a major shock to my system for a couple of days, but it did increase my bladder capacity after that for a couple months. I think it's just wearing off right now actually, which is sort of annoying.

    They took a biopsy at the same time, which probably aggravated my bladder more than the hydro.

    Someone mentioned using heat to manage flares. My physical therapist suggests cold packs. Cold calms down nerves and reduces swelling. Heat can aggravate nerves and does nothing to reduce inflammation. It does relax muscles though and depending on your condition might help.

    I usually sit on an ice pack (make sure it reaches the full length of your perineum) for 5 to 15 minutes. Icing my lower abdomen helps too.

    Good luck.

    Leave a comment:


  • 1982
    replied
    He said there was some mild hyper vascularity upon strectching. I saw pictures and it looked irritated put it didn't look like the round bleeding shapes. Do Dr's normally saw glomerlution is mild hypervascularity the same thing?

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  • sshannon74074
    replied
    So the doc said he couldn't see any signs of IC? Maybe you just have an overactive bladder. Usually on IC patients have glomerulations visible with the hydro. I think there is a drug called ditropan? for that.

    I've done the instillations but I think its worthless because the elmiron wont dissolve. They need to make a liquid elmiron for this.

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  • 1982
    replied
    I have been deeling with urgency frequency for almost a year and a half. I had the hydro it didn't make things better or worse. It wasn't conclusive for me. I was wandering if anyone of you guys has tried the instilled medicine. If so does it hurt? I have read great things but the two uors I have seen said that this isn't a good option for guys my age 29.

    Leave a comment:


  • Wyllyam
    replied
    I agree. It's been three years, and has accompanied me through every major event in life. It's getting hard to remember being pain free. I have improved a bunch recently due to figuring out that MILK was a trigger...(really???)..., and was actually happy to have a flu for a few days, as I was symptom free. It's weird, but I've read of others that this happens to.

    I have read about Uracyst on this board a couple of times. The website still lists only Canada. It is also an instill apparently. Does it work? Do we have a chance of seeing it in the US?

    Leave a comment:


  • sshannon74074
    replied
    Not everybody has the same severity of symptoms. You may have better luck than me. This disease has affected every aspect of my life for the last 5 yrs. If you are not enjoying life, everything changes. This includes career, relationships, family, friends, money, travel, diet, overall mood. Its like your soul has been destroyed. Nothing seems to matter except getting better so you neglect, don't have time, or don't feel like doing anything else. The disease consumes you inside out. But..you keep fighting to survive and get better and hope for a breakthrough in research.

    Leave a comment:


  • Rope_Wrench
    replied
    Not trying to be to nosey but in what way do you feel your life is wasting away? Are you married? What have you had to change? I can assume that never having enjoyment while having sex would take a toll on you. Has it effected your job?
    Reason I am asking this is to try to get ready for what is to come.

    Leave a comment:


  • sshannon74074
    replied
    I forgot to tell you all a couple of things that have helped me and that is hot baths and a heating pad. I usually fall asleep with the heating pad.

    Also when I wake up in the morning my symptoms are usually gone or almost non existent. As the day goes on they get worse and peak in the evening.

    Leave a comment:


  • sshannon74074
    replied
    It came on gradually for me. There were a couple of times when I was 35 or 36 that felt like I was getting a urinary tract infection for a couple of days and it went away on its own. I never had any problems my whole life in that area. When I turned 37 I had a lot of misfortuned and stress and that's when the symptoms got worse. I thought it was related to the dipping and thought when I finally quit the symptoms would go away, well they didn't. To answer your question, the best I can remember is the pain and frequency happened together. As far as the symptoms getting worse over time, I don't think so. Actually a little better now that I am tobacco free and abide somewhat to the IC diet/lots of water etc. Emotionally its taken a toll because its so frustating watching your life waste away and there's not much you can do about it.

    Leave a comment:


  • Rope_Wrench
    replied
    Scott,
    It sounds like we are all having a lot of the same stuff and we all started showing symptom at the same age. With 5 years of living with this you are the veteran. I hope and pray for all our sakes that your experience is not the norm for the rest of us.
    I do have a question for you, did you start out with pain or just frequency? Did it progress from the first time you were diagnosed?

    Leave a comment:


  • sshannon74074
    replied
    I was 37 ish when I first started having symptoms. Seems like dipping tobacco set it off at first and then I finally stopped dipping, took me about a year to quit, still have symptoms though. I'm 42 now and have had this for 5 yrs now and its been a miserable 5 yrs. worst part is the sex life isn't what it used to be because you don't enjoy it due to the pain. I think I've tried almost everything including self instillations. I had a hydrodistention and it helped with the frequency for a few months. It was excruciatingly painful afterwards and I ****** blood for 2 weeks. I think the only things that have helped are:
    lower stress level, drinking lots of water and not holding (flushing your system), IC diet, pelvic floor relaxation and stretching, and maybe d-mannose a little bit but I'm not convinced just yet. I've tried too many things to start naming here including almost every antibiotic in the book. Right now I'm just hoping that some researcher finds a big discovery before I'm too old to start enjoying my life again.

    Scott

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  • Rope_Wrench
    replied
    Hi there panthesfan,
    I am just making a guess here but I think you will have a lot of hair loss in the following weeks.......... Panthers are at a 1 and 2 season and not real sure they will get their stuff together by play offs.
    All kidding aside I have no idea. Not on Elmiron yet.

    Leave a comment:


  • panthersfan
    replied
    Guys, I really do feel your pain (literally). I posted in a intro thread my short 7 month story of going from a normal 35 year old to one that feels like an old man and debilitated. Just got back from a Uro appt. and now I have a prescription for Elmiron. I am worried about the possible hair loss side effect. Anyone on it can say whether it is common or rare?

    Leave a comment:

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