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Worse after an installtion?

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  • Ged
    replied
    Hi guys!!!
    Hope you are all feeling some level of relief most of the time now... I've found since I finished a six week DMSO a couple of months ago, things are much calmer.
    I think our bladders are a little like boats on the seas. Sometimes things are calm and sometimes a storm blows in n knocks the hell out of us... I've had to learn that DMSO treatment are not going to eradicate IC, , it just sets in on a normal course, but like storms and bad weather, risky foods, drinks or even having a bath rather than showering or going for a swim in a chlorinated pool can send us back into rough waters... Well, that's how I see it anyway

    So far so good, I love curries, wine, chocolate.... Actually I just live all food so learning to temper it all has been hard...
    Also..... Has anyone else gained weight during DMSO???? I gained 5kg and cannot get it off now. I heard that it's the cortisone that causes it!!!
    Any feedback will be helpful... Maybe it's just me getting fat and blaming the treatment hahahaha

    Love and best wishes to you all out there
    Ged

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  • Daisy Mae
    ICN Member

  • Daisy Mae
    replied
    Thanks for asking about me, that was sweet!
    Unfortunately, I'm still in a flare about half the time. Sounds crazy but it's like I can void ok one time and it hurts the next. It's most definitely an improvement, but after 6 weeks of DMSO I'm usually way better than this. I'm gonna try 2 more weeks of this and see what happens. I still have the option of another hydrodistention which usually helps, then I have an appt for Dec
    14th for a psych consult for my spinal cord stimulator. Still have options, and still trusting God to help me.
    I hope everyone's having a good bladder day, take good care of yourselves and stay in touch!~ hugs! xoxoxo

    Leave a comment:

  • Tura
    ICN Member

  • Tura
    replied
    oops those responses for daisy but you can read too bJ

    oops sorry the question olive garden was for daisy but how im doing now is for both.

    Leave a comment:

  • Tura
    ICN Member

  • Tura
    replied
    Hi

    Hi Bj,
    2 weeks ago i finished my 6th DMSO i think im 40percent better some days and others days back to square 1. Doc says 40 means its working but im still pretty bad so he wants to have me go in 1 time a month now for DMSO cause he is afraid if i stop i could go back to where i was before it. He now also has me on Hydroxyzine(spelling) 25 mg at bedtime to help me sleep and i guess for spasms. Its an antihistamine. His goal is to heal me. He also finally agreed diet affects my ic so to follow it as i have been.
    So when your in a bad flare no pain just extreme urgency frequency?
    I go to the movies but i sneak out after an hour to pee then back to my seat. Take care!! Gigi

    Leave a comment:

  • bjcov
    ICN Member

  • bjcov
    replied
    So how are you doing now after the DMSO? Its been about a month since you posted

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  • Daisy Mae
    ICN Member

  • Daisy Mae
    replied
    I know what you mean! Sometimes I'm worse right after the DMSO before it gets better. Usually after 3 or 4 treatments I'm really well on my way towards remission. Last Monday was #4 of this series and I'm still pretty bad off, which really surprises me.
    As for the nausea, yes, yes, and YES! My husband and I had been planning a date night, which we planned for last night. Surely after 4 weeks of dmso I'd be up for it, right? Well, I was so worked up over it I threw up several times in the evening. Probably from the stress and also from all the meds I took in attempt to sedate my bladder into behaving for a few hours. Grrrrr.... so frustrating!
    I finally felt better and we actually had a great time, we just went out to dinner and skipped the movie, no way could I sit in a theater for 2 hours! The dinner was great, we went to Olive Garden and really relaxed and enjoyed each other's company.
    Last night when we got home, though, I started being able to taste and smell the dmso again, along with the burning eyes I get right after a treatment. Wierd, huh?
    Tomorrow is treatment # 5.

    Leave a comment:


  • Ged
    replied
    DMSO instills nausea

    Hi Tura
    I'm so sorry you are feeling unwell. Yes I definitely recall feeling slight nausea associated with the bloated stomach. It would always starts a day or so after treatment then get worse for 2-3 days and gradually settle down again, then start all over again the next week. However all that said, it's a worthwhile discomfort for the immense relief the treatments gave my my bladder.. I've been finished treatment for 5 weeks now and so far so good. I hope yours goes well too xx

    Leave a comment:

  • Tura
    ICN Member

  • Tura
    replied
    Nausea

    Hi Ged,
    I had my third DMSO instillation last Wednesday and Ive been having nausea. You have that? Tura

    Leave a comment:


  • Ged
    replied
    DMSO instills

    Hello, I would definitely not wait 2 weeks, get back to your uro, clearly something needs attention.. Good luck!!!!
    I have had 2 cocktail instills in a 6 week set. They seem to be relieving my pain but I'm feeling very bloated with stomach cramps within an hour of eating or drinking... Anyone else experienced this???
    Many thanks
    Ged

    Leave a comment:

  • tigger_gal
    ICN Member

  • tigger_gal
    replied
    yes please call your dr. and let us know hou you are.
    Brat

    Leave a comment:

  • ICNDonna
    ICN Staff

  • ICNDonna
    replied
    By all means, call your uro. You need to at least be checked for infection.

    Warm healing thoughts,
    Donna

    Leave a comment:

  • Dixiefireball
    ICN Member

  • dixiefireball
    replied
    i understand how you feel about running to your uro but if the perocets are not helping I think you should call them tomorrow after the bladder treatment you may have gotten an infection to make things wrose. Call them and tell them how you are feeling and see what they tell you. and if they don't help you go to the er and get something to knock that pain out of you. no one needs to suffer.

    Leave a comment:

  • Crystal J. Skidmore
    Junior Member

  • Crystal J. Skidmore
    started a topic Worse after an installtion?

    Worse after an installtion?

    Hi. I had my 2nd installation Last Monday.
    I went in bc I was in a flare, and I was in so much pain. They said lets do another bladder cocktail. I said yes i think the last one really helped me.
    but i took pain meds almost daily.
    here i am .
    in so much pain i cant think.
    and i took perocet.
    it has been a week, i dont want to run back to my uro.
    i am sure he see's me enough.
    they wanted me back in 2 weeks. tommrow will make one week.
    what should I do??
    Anyone have any experince with this?
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