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  • How I did it right or wrong!

    Jan 2011 I got a new joband moved my beautiful wife and son to Texas, life was good right?...

    Literally the second we got into Texas I started to have the burning sensation. I was drinking excess coffee in the morning and the beer at night for the drive. I hardly drank water because I was driving to Tx from the east coast and like a typical male I did not want to stop. The last day of the drive that should have taken 2 hrs lasted 5 hrs because of me stopping at every light peeing. My wife said I had a UTI. I bought cranberry juice, Vitamin C, and anything acidic I could think of. I had probiotics and a massive amount of zinc(all of those ingredients I realize now was probably the worst thing for me)
    Three days in I went to the doctors and they gave me antibiotics because of the UTI. They hardly helped. I drank beer less which is why my flare might have went down. So after 3 days of being in TX I dislocated my shoulder(another story, another thread).
    I started my new job having to pee every hour for a week. That was better than the road trip. Then it subsided for 1 month.
    The world came down crashing a month later. Every 20 mins. I would pee I could hardly drive to work, sit in meetings, the pain started to get bad. I also would have blood in my semen So I saw a urologist. The guy was like Doogie Houser. He was like "Ya your old and this happens, Your prostate gets big. we can give you drugs to make you feel more comfortable. But you will have to deal. Here take this drug" I forget the name of the drug but it was something to chill the bladder and make me pee less. OH! did I mention I am 34... OLD! really!! Thanks Doogie!! Also he gave me NO prostate exam. So he said come back in a month and see what happens.
    After a month of this and working 16 hour days I did not feel right. I hate medicine. I did start taking prostate supplements which seemed to help maybe by 20%. It had mint and Pumpkin seed extract in it. I went back to him and without him even seeing me or talking to me he wanted to scope me. This guy was nut's in my mind. I left and went for a second opinion.
    I went to Dr. Sandeep G. Mistry, MD. This guy (Is awesome by the way)spent time with me, talked with me, and told me it was IC, prostate, or Pelvic floor muscles (I did get a prostate exam, eek) By this time I was confused, I had this for 3 months. So he started me on Imipramine and had me go to physical therapy at Hands On Therapy in Round Rock Tx for pelvic floor work. After 1 month of this my symptoms went down by 40%. BTW my job got more intense and I had to hide this from my brand new team I was leading!
    I then decided to throw Acupuncture into the mix because I was stressed out and needed to relax and again I was under a lot of stress (BTW good stress, not bad stress, I LOVE MY JOB). That seemed to really help with healing. He gave me herbs as well. I was doing the pelvic floor work and that was painful but great. Katrina Barton is an angel at Hands on Therapy. Everyone there was truly amazing and supportive. This was an embarrassing and humiliating time for me and they made this very easy on me. But just to point this out Katrina was a guardian Angel and really helped me get through this, I think she became my mental therapist more than anything!!!!! Plus as much as it hurt during the therapy I always ended up laughing. Once I hit the threshold of extreme pain I laugh, what else are you going to do right
    So between the pills from the urologist, supplements, and the herbs which are pills. I was downing 96 pills a day!
    I went back to the urologist 2 months later and told him that I was 75% better. He asked how my diet was and did I think food triggered it at this point. So he gave me a list which is basically like the list that is on this site. I went to the extreme and only ate food on the left hand side with a * of the list on this site. I truly love Blueberries now!!! I also did the Jillian Michaels workout. Did I mention I was 280pds at that point, So I needed to lose weight, plus my acupuncturist called me fat. Hey I needed to hear it! Nothing like being naked on a table and having an Asian man look down at you and say "your fat pushes on your bladder, this is because you are fat"
    Within 2 months I lost 25pds. I was 90% healed and feeling great. I also cut out beer except for Cider beer and White wine because it is fermented from fruit (I like to drink, I am from Boston what can I say) After 3 more months of consistent exercise, eating, acupuncture, and physical therapy, I was healed. It has been 3 months ago since my last flare. I can eat and drink whatever I want in moderation but that is a GREAT thing.
    I feel 100 percent better now. I am not having acupuncture, herbs, therapy or anything like that now and again it has been 3 months since I have stopped.

    -From my first episode to my last was 11 months, I am 3-4 months free of symptoms.
    -So here is the breakdown that I BELIEVE healed me:
    for 6 months straight I ate the following and nothing much:
    breakfeast - a package of blueberries and go lean with milk
    Lunch - chicken/avocado/pumpkin seeds
    Dinner - Beer can chicken and jasmine rice, carrots, avocado, 2 cider beers
    Beer(mostly weekend and a flare afterwards but minor, after 2 months of this no flares)- Cyder beer (Crispin) St. michele white wine, sometimes miller lite, sometimes Jack daniels. Althought tequila was ok.
    no liquid except for 100oz of water(no water after 7 pm)
    Working out: Jillian Michaels Making the cut
    Therapy: Hands on physical therapy, acupuncture

    I write this because knowledge is power. I hope I can help someone with this thread because I have had some wonderful people help me!!! thank you especially to Hand On Therapy(Katrina), Dr. Mistry, and Dr. Hao

    PS - Now that I can drink and eat anything, I gained the weight back I lost, but I enjoyed every pound mmmmm Pepperoni pizza for a week straight with red wine! Now back to the Jillian Michaels diet CRACK that whip!

  • #2
    It's really great that you are feeling good and don't have interstitial cystitis. Keep up the good work --- you do need to slim down a little.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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    • #3
      Nice news

      I love to hear about people going into remission. Can you tell me what herbs you were taking?

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      • #4
        Thanks for posting this! Encourages me to keep looking for a PT!
        IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
        Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
        Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

        Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
        Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
        Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
        Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

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