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  • Jinny Jean
    replied
    Hi!

    I was also a lurker for awhile too!! hahah Hope you find lots of good info on here!!

    xoxoxo Jenn

    Leave a comment:


  • ICNDonna
    replied
    to the IC Network. I know you'll find a lot of information and support here.


    Donna

    Note: AZO is the same as pyridium --- but a lower dose.

    Leave a comment:


  • Jadia
    started a topic Introducing....me! >.<

    Introducing....me! >.<

    Hello everyone. I am a long time lurker but finally just signed up tonight to be able to post. I'm 34 years old and have been diagnosed with IC for roughly a year and a half. It took months prior to this to be diagnosed.

    My onset of IC symptoms was after a round of IVF treatments. At first I actually thought I had a catheter injury from the implantation procedure (where they perform the dreaded reverse filling of the bladder to aide in uterus positioning). When it did not clear up (after months of silent agony and being told there was no UTI) I went to my urologist (who I had previously seen since high-school for kidney stones and reoccurring UTIs) for help. Long story short he tested me for UTI's..found nothing, treated me for them anyway, with no luck for about 4 months before he said "well...maybe it's IC...and there is nothing I can do." I desperately sought out a second opinion at that point. As luck would have it I found a young doctor int he area who had done a residency with one of the countries top IC care providers in an IC clinic. It took him a month to convince me to allow him to do an exploratory surgery (I am so petrified of catheters now that they induce panic attacks so I would not agree to any tests involving those while conscious). After the exploratory surgery he confirmed the diagnosis of IC.

    For me, IC manifests in bladder cramping, spasms, urgency, frequency and the dreaded urethra burning and stabbing sensations both when and when not urinating. The easiest way for me to describe it to friends and family is to tell them to imagine passing the biggest kidney stone ever while having a UTI and that will get them about half way there.

    My doctor tried the standard medications. I seem to be allergic to pyridium as it induces vomiting after just a few minutes of taking it so I used over the counter "Azo standard maximum strength" which did offer me some relief...but I was having to take so much of it to stay relieved I was concerned about over dose. Elmiron was tried but with all the studies I researched on it, the cost + wait time (to see if it even helped) + it's focus upon the bladder and me having symptoms so bad in the urethra, I stopped this medication to watch for further studies on it's actual effectiveness. I was given Enablex to help with the bladder symptoms...this did work for me. I also was taking an over the counter acid reducer that you take before meals to absorb acid. This helped a touch, but taken to soon before eating, also made me very sick. I have a dual diagnosis with fibromyalgia so I take lyrica as well to help with that pain.

    But still this did not relieve the pain. I was terrified to eat or drink anything and with the IVF failing I wanted to try again...but there was no way with this much pain. I read on this forum about pain clinics...and I sought one out, praying this doctor could help me more than my urologist. The doctor there had seen 2-3 IC patients and had been successful with a caudal nerve block relieving their pain with narcotic pain killers for "emergency flares". The first block helped some, but only lasted maybe 3 weeks. The second block lasted about 6 weeks, the third 2 months as he got better with the location and medication amount.

    Sadly, due to insurance reasons, I had to change pain clinics. My new doctor did a caudal at my request (he had never used them for his IC patients)..but it didn't work..at all. Nor did his second one. And they didn't work for his other 2 IC patients her encouraged to try them at my raving of it's help. So I decided there -had- to be a difference int he medication being used. After some hounding of my old doctor, I got what he was using and took the "cocktail" back to my new doctor who was actually surprised to hear what it was; Sarapin (Serapin, pitcher plant extract). As soon as he added Sarapin back to my caudal nerve block..it worked. It also worked for one of the two other IC patients who said it was the first relief she had had in about 5 years of treatment.

    Sarapin is a natural plant extract that is used on race horses with certain types of inflammation. My doctor has used it in patients who needed trigger point injections for back pain..but never in a caudal nerve block for IC. Now though, I get my caudal once every 3 months and experience almost no flares no matter what I eat or drink or do. A word of warning, Sarapin is not rated by the FDA since it was around before the FDA and therefore "grandfathered" in. From my understanding it is also only manufactured by 1 drug company in the USA.

    So with all that behind me, my pain controlled, and a years worth of research on IC and pregnancy, my IVF doctor reminded me how old I was getting and said "now or never". So I had to drop -all- of my medication. Bye bye lyrica, enablex, pain killers, etc. Working with my urologist, pain specialist, my fertility doctor, and my OB we determined a course of action that we hope to be "safe" for a pregnancy. I was given my last caudal when I started my 1 month IVF cycle. This gave 1 month for the steroids in the caudal injection to work their way out of my body. After this month I went through the final parts of the IVF cycle and this time I actually conceived. With that out of the way, the trick has been to survive the first trimester and pray the caudal lasted. unfortunately my caudals last about 2-3 months...not 4...so around my 9th week my nerve block was fading. Luckily, even though it is fading, it is still hanging in there enough to keep the worst of it at bay. The worst of it has been not being able to sleep the past 4 weeks because of the spasms and urgency and frequency in my bladder. It wakes me up every single hour during the night to go to the bathroom.

    Tuesday I will be in week 13, officially out of my first trimester. My doctors believe that the benefits of the sarapin caudal for me out weigh the un-evaluated risks. So I am crossing my fingers and praying that all our educated guess are right and I will be able to get through the rest of my pregnancy comfortably and safely.

    I was wondering if anyone else here has used Sarapin Caudal blocks and if so, what about while pregnant? It's been very hard to find encouraging news about pregnancy and IC...but I am trying my best to get through it the best I can for baby and me. I will be posting that question in the nerve block section though where it belongs!
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