Latest Blog Article: Europeans Release Updated Chronic Pelvic Pain Guidelines
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  1. #1
    Registered User pmap's Avatar
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    First bladder installation, help have ?'s

    I just came back from seeing my uro. I was not expecting an installation today, but got one. He says this is going to make me feel better. I go back every other day for 2 weeks for these! My questions are for those that have traveled before me. Has this helped? Right now all I feel is this unrelenting need to pee! IT won't stop. Much worse than before this treatment! I also have intermittent "Holy Cow" kind of pain, luckly it does not last long and goes away. Is this normal? Just looking for info from any others that have been there and done this. thanks
    pmap

  2. #2
    ICN Member Dixiefireball's Avatar
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    what type of treatment did you have today did you have a dmso or a cocktail treatment?
    i use the cocktail treatments at home and they have helped me so much even with the pain i hope what ever type of treatment you taking will help you.
    if you know the name of it i may be more help to you.
    if you can come to chat tonight and there is great ladies there that can help
    sending you hugs and pryaers
    Rhonda
    Medicine taken daily or as needed:
    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
    2. MS.Cotin 100mg 3x daily
    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
    4. Fentanyl 100 mg Change every 48hrs.
    5. Gentamicin 80mg install after each rescue treatment
    5 Leviquin 500mg self start as needed.
    6. Klonopin 1 or 2 daily as needed.
    7. Prosed/DS as 1 every 6hrs as needed.





    I have IC, but IC doesn't have me anymore!

  3. #3
    Registered User shennan's Avatar
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    Smile pmap,

    i have heard it gets worse before it gets better with dmso instills.

    what kind did ya get?

    dixie has good luck with heparin. nothing for me so far, except a little less peeing, but the pain and pressure are bad still. the urgency comes back after abot 5 days. it doesn't last for me.

    hang in there......




    dixie, happy b-day late.....

    shenna

  4. #4
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    /comfort

    Yes, for me in the beginning, they hurt and I needed to urinate all the time. I also sometimes had flares afterward. Unfortunately, mine were done at the same time they were brute force stretching my urethral opening, so that only increased the problems. It took some time, but most of the time now, they don't hurt and the increased urge doesn't last more than a day. You might try taking Uristat before hand so it numbs things a bit. Maybe even a pain killer, if you have them. But it did take months to reach the level of semi comfort I now have with them. I think they have helped, but it wasn't easy to keep going when they were hurting.

    One thing my uro did for me was to numb me both before and after the treatment, which often made it possible to hit home before the pain and urgency hit.

    Currently, I am able to hold the DMSO on average of two to three hours before I have to urinate. If urgency hits, sitting on my trusty icebag stops the need. So, for me, it is working and I have a lot more good days than bad. :woohoo: Hang in there, it could be worth the effort and pain, but do talk to your doctor about it.


    Myli

  5. #5
    Registered User XoChelsey03Xo's Avatar
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    I have been doing installations for about two weeks now. I have been peeing like crazy since my second one. My first one I did really well with. I can actually eat anything without getting pelvic pain. I hope it gets better. I hate having to pee all the time. Chelsey

  6. #6
    IC Friend kelly McC's Avatar
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    I have been getting instills for about 6 months now for me it was a bit uncomfortable in the beginning but I do get some relief from from them now. Good luck and hope your feeling better,
    Kelly
    To the world you might be one person but to one person you might be the world..
    I am a newbie Angel ~IC Angel 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.

  7. #7
    Registered User pmap's Avatar
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    I'm not sure what was in it, lots of stuff. Uro did call it a "cocktail" 6 different drugs two I rember was Rimso ( sounded like that) and heparin. I go back tomorrow for my next one and every other day for 2 weeks. Is that a normal schedule for "cocktails"?

  8. #8
    Support Leader kadi's Avatar
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    Rimso is the name for DMSO. It is usually instilled once a week for 6-8 weeks initially, then if it helps, once a month for awhile after that. The first few treatments are pretty well known to make you flare, but after the first few treatments are over, it can get better. I've never heard of having DMSO more than once a week... (Heparin? yes, every few days, I've heard, but never heard that for DMSO).

    I have been helped by the DMSO cocktail (Rimso, Heparin, Solucortef, Sodium Bicarbonate & Marcaine). I hold it for 20 minutes, then void. When I was having the initial series of 6 treatments done, I took Darvocet about 2 hours beforehand & Pyridium the morning of the instill. Those helped me be able to hold it the 20 min. (The first one I could only hold 10 min). I noticed some small improvement around the 4th treatment, but the bigger improvement came about 10 days after the series was over.

    I have less pain & less frequency now. My energy level is better & I sleep better. I am now able to do some exercise, which I could not do before this. I am still limited in diet, which is disappointing, but have no regrets. I don't think I really realized how sick I was til I started feeling better.

    I wish you much success with your treatment & better days soon!
    Kadi

    -------------------------------------------------------------
    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
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    Current treatments:
    -IC diet
    -Elavil 60mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic to prevent UTI infections from 2x daily catheter use
    -Colace & Senna to treat chronic constipation from meds
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

  9. #9
    Forum Manager ICNDonna's Avatar
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    It can take a while before the DMSO helps. I know it took several treatments for me before I had any benefit. I'm on a monthly schedule now and still have some discomfort on DMSO day, but the rest of the time I do well.

    Sending encouraging hugs,
    Donna
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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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  10. #10
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    installments

    So I was just diagnosed with IC I am so glad I found this site I was starting to think all this pain was in my head, and the Dr. just made this up to satisfy me since they had done every test there was and found nothing. I was diagnosed with Fibromyalsia about a year ago and have alot of symtoms due to that. When I was diagnosed with IC I was upset all I could think was what next? I had my first installment last week and go for another one on Thursday. I have to have 4 installments 1 time a month I am wondering how well these treatments are working for you guys and if you think there is anything else other than the treatments. I still have severe pain and I am really hoping these treaments work. Does anyone else on here have fibromyalsia also? My Dr. told me these go hand in hand.

  11. #11
    ICN Member Diamic65's Avatar
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    I had a installation and it was awful for me. The pain was bad. But maybe it will work for you. I told my DR that I do not want to do it again. I was in so much pain that my husband had to take two days off from work to take care of me. I do hope it works for you

  12. #12
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    installation

    I guess it went better for me just because a week before the installation I had to have a scope of my bladder done..now that is pain my friend.. But seriously the installations are painful but I am in serious abdominal pain and anything has to be better then constantly being in pain. I feel very uninformed right now though and I thought this was a condition that would go away after the installations only to read on the internet today that it is a condition that will haunt me for the rest of my life. I am trying hard to stick to the diet but finding it very difficult since all the stuff I love I can no longer have! Did your doctor put you on oral medications to help you instead of the installations then?

  13. #13
    ICN Member Diamic65's Avatar
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    Red face

    Hi, yes she did. I see a PA instead of my uro. I only see him when I have surgery. I feel lucky to have her since she is a women and understands the female body. When I take Darvocet and Lortab when it gets really bad. And at night I take Vestral. Do you feel like you have IC brain? You can not remember things and get confused? I have been that way ever since I came down with IC.

  14. #14
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    Pa

    I would like to see a doc a little closer to me right now I drive a hour to and from the appt. I have to go once a week. It is tough and I hope that the pain gets better I never thought about asking for pain medicine but I am goign to when I go in Thursday because I just cant take the pain anymore. as far as the IC brain goes LOL I am fuzzy all the time I forget everything, I read that it may be from the fibromyalsia! I am just glad they diagnosed me with something I think my regualar doc was starting to think I was coo coo. I have also read that just 4 installments may not work either..so now I am kinda freakin out thinking this is never going to go away. I get constant headaches also is this something that you have also?

  15. #15
    ICN Member Diamic65's Avatar
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    Red face

    Yes I have headaches all the time. My family Dr thinks its because of my age LOL. I finde that the pain meds do help with the IC. Also stress can cause flars. I try to stay stress free but I'm type of person thinks she can help people like my family. So why do you have to go once a week to your URO? My drive is about 30 mins.

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