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DMSO OR "rescue" instillation??

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  • #16
    Re: DMSO OR "rescue" instillation??

    Hello, i just had my first dmso coctail instillation yesterday. It did not hurt while i layed in office for 30 min holding it nor did it hurt when i peed it out but the cath did irritate me afterwards i actually gave myself a panic attack thinking i was back to square on with all my pain but after 2 hours i was back to my normal level of pain. So i dont think it did extra harm. Today is also normal level of pain i dont expect to see results immediately but hopefully after a few weeks i will. We do eight weekly treatments and then we go from there. I also stay on my elmeron until symtoms go away then i guess it is reduced as a maintance. I prey that is the case and will not have bladder on my mind all the time. I been on elmeron for 4 months now and i feel a mild difference but i think of 8 weeks feeling so much better with instills is amazing. But thats if it works for me. I know my dmso was a cocktail it had other things in it but not sure what. But reading all the negative posts about dmso has me nervous. I was told by my dr it does not go threw the blood stream. Now i am so curious what was in my dmso coctail. It is 2016 i was reading posts from 2006 so i am sure some things have changed. I think lidicane was also in it. I guess cocktails are hitting the ic symtoms from all angles.

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    • #17
      Re: DMSO OR "rescue" instillation??

      Remember. Many of the people who post are looking for answers because their IC has not been resolved. There are far more people who have found effective treatment for their IC than just the ones who post. It sounds like you are comfortable with your MD. If you have questions about what you have read here I am sure he would be happy to talk with you and ease your mind. It is great you are so positive and your MD is working trying different treatments. He sounds very involved in trying more than one approach. Many find the treatments do take a fews or even months to show significant improvement. Key in what I read is you are some better but you don't think the treatments are causing you more pain. That is very encouraging. It may not be working the way you would hope but it's not getting worse.
      TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
      My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

      Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
      Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
      I post to encourage and offer total support for rescue instillations.
      Find me on facebook: L. Clark Thomas
      Louann

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      • #18
        Re: DMSO OR "rescue" instillation??

        Thank you so much L.Thomas your words are very encouraging

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        • #19
          Re: DMSO OR "rescue" instillation??

          Hi, I just wanted to say that o did my first rescue instillation two days ago. It didn't hurt anywhere near as bad as I thought it might. She used the smallest size catheter on me and that helped. I laid there for 15-20 min, then peed it out. I felt no pain the rest of the day. No burning or urgency/frequency. Just a little sore from the catheter, and from probably doing more than I should around the house (I have small kids). The following day was pretty great. Today, things are back to normal. Urgency/frequency starts up if I deviate in the slightest from my very limited menu of rice and veggies. My Uro told me to have one a week for four weeks, then see how I feel. She said not to expect any improvement for at least a month. Does that sound about right?

          She said I may need to do two more if not feeling better by one month. I would really like to see a reduction in my symptoms by one month so that I can eat more without pain.

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          • #20
            Re: DMSO OR "rescue" instillation??

            Hello. I was told 4-6 weeks before improvement. Tomorrow is my second of 8 that i will be getting. I was due for my period yesterday and it is always the worst time of the month for me 3 days before my period and also 3 days during ovulation. Well so far my pain level is down to a 3 where i would be a 8 this time of month. Also my pain is at a constant 5. I been dealing with this since. July but was much worse then. I was diagnosed in november and been on strict ic diet since november. I also take mybetriq at night and elmeron 3x a day. Elmeron is a 6 month med before feeling if it is going to work. I am on month 4 so i do see improvement so far since dmso. Hopefully after 8 weeks of it and 4 more months of elmeron i will only need elmeron 1x a day as maintenance. Fingers crossed. I guess if you felt good for 3 days then back to regular state of pain it would be discouraging but try your best to not be and enjoy those good days.

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            • #21
              Re: DMSO OR "rescue" instillation??

              Hi, I just finished my 6th Dmso instillation. My biggest problem is urgency, I felt like I always had to go but after my first dmso I felt like I got my life back. Usually I feel great 3 days after I get the dmso, then I start feeling the urgency again but is nothing close to what it used to be, it got a lot better. Since I just finished my 6th dmso my doctor wants me to wait and see how I feel before deciding if I should continue going twice or once a month. I also take aloe vera pills which I feel help me a lot when Im not feeling well.

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              • #22
                Re: DMSO OR "rescue" instillation??

                Hi everyone,

                Thanks for your replies. I had my second treatment five days ago. I held it longer, 35 minutes this time, because I've read so much on here about longer dwell time equaling more relief. I also found a new dr, a Uro gynecologist, who confirmed 20 min up to two hours, depending on how long you can hold it. This is for the rescue installation. I did not ask her about the DMSO installation. She feels like I chose the correct installation, however, she recommended adding an anti-inflammatory, kenalog, which is a steroid. She said this really helps to calm things down and help you to get over this. She kind of made it seem like doing a rescue installation without it was not nearly as effective. So, my next three installations will include the kenalog.

                She is also recommending pelvic floor therapy and interstimulation. This part is really expensive, but I have read a lot here about how it helps and both urologist have recommended it now. So, maybe I'll do it.

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