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  • No Longer Crying

    You all know what it's like... not being able to sleep, not wanting to have sex, crying in frustration because you don't know what you ate this time to cause such pain. I remember standing in my closet crying because I didn't want to put pants on. Those were the worst of times... I'm better now!

    It took ME years to figure things out. The doctors weren't any help. The best they tell you is you don't have bladder cancer. They said I didn't have IC because my bladder looked normal. BS... normal bladders don't make you cry! IC or sensitivity, I don't care. Pain is pain.

    Everything I've learned to help came from this website and years of paying attention to what I eat and odd luck. I'll take luck....once I got the flu and couldn't eat a thing. That night I had the worst spasms. You know, not the burning, screaming bladder but the one that actually feels like it's contracting. I had taken Sudafed (for a stuffed up nose). It was Sudafed PE Non-Drying Sinus to be exact. I used it often. And that's when it hit me...it was the Sudafed that caused the spasm. Not food or liquids, but a pill. So no more antihistamines for me. I don't have spasms any more. But that was only a small piece of the answer.

    I did the IC diet and things got better. Once in a while I would crash and burn and not know what did it. Like I said, I would lay in bed at night and cry because I didn't know what I did that I shouldn't have. I'd feel like a loser because I did it to myself.

    Too shorten my sad part, let's just say it took a long time to figure out what I was eating that was hurting me. I kept a chart with ingredients of all processed foods I ate. (I'm not much of a cook and lived off can, boxed and premade products.) I don't do that anymore. I cook. No boxed mashed potatoes, no rice a roni, stove top stuffing. Don't do it, there's too much chemicals and preservatives.

    Here's a list of things that have almost killed me:
    Snow Cones/Shaved Ice. Sodium Benzoate (also found in soda)
    Bacon and any cured meats (Sodium Nitrate, Sodium Cassinate)
    MSG... OMG MSG is everywhere!!! It's a killer!!!
    Lettuce...not lettuce, the chemicals on lettuce! WASH IT WELL.
    Jack Cheese...not that surprising, but holy cow.

    My best advice is take time to make your own food. I never eat chicken (MSG) in a restaurant and won't eat any lettuce I haven't hand washed.

    For those of you that are in a place where crying is often, know this... You absolutely can get better.

    Sex can be good again, and on occasion you may even sleep through the night.

  • #2
    I'm glad to hear things are working for you. It often takes quite a while to figure out your triggers. I hope you continue feel good. We need more sucess stories like this.
    TexasHoney

    Let's keep praying for a cure.
    IC Symptoms began in early 2001
    Divorced : Sept 2002 (Partly due to IC)
    Diagnosed with IC in April 2004
    Most recent injury - Rupurtured Left Achilles Tendon
    Wed Jan 28 2009
    (Ice Storm Accident)
    2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
    Other Injuries
    Broken Left Ankle - July 2004 ( fell off ladder)
    Broken Left Ankle (Again) - May 2005 (car accident)
    Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

    CURRENT MEDS
    Elmiron, Pyridium

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    • #3
      Thanks for sharing. I also cannot take Decongestants like Sudafed or I'll be peeing constantly. They seem to irritate the bladder a lot. However, I can take antihistamines and they seem to help a lot of people.
      Frances

      Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

      Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

      Other conditions: Migraines, allergies, mild IBS.


      "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

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      • #4
        thank you for posting this! you just made me feel a lot better. i have been crying all night and not cause of IC pain but because i live my life in a bubble terrified of getting IC pain again from a UTI (since thats how i got it in the first place). I have severe OCD about it and wash my hands like 100 times a day and do other ridiculous things. my family wants to send me to a loony bin. Im happy my IC symptoms are better but i just cant shake what it did to me mentally and i feel like i will never have sex or do anything fun again. hearing you though did help and that is definitely what i needed to get me through the night! so thank you!

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        • #5
          Scarednconfused... Why don't you try to get treatment for the OCD? Washing your hands one hundred times a day can take a serious emotional toll on you. And not the mention the other aspects of OCD. Therapy and meds (best together) work really well. There are some great books out there on OCD, such as Howie Mandell's memoir. (he has OCD and handwashing is a major issue with him) Your "worries" about sex could be partly related to OCD thinking. (not at all saying IC isn't coming into play...but it's something for you to consider and I bet you can better with help)

          Hugs... Hope you can get the help you need!
          Frances

          Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

          Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

          Other conditions: Migraines, allergies, mild IBS.


          "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

          Comment


          • #6
            Chemicals...no

            Yeah this sounds kind of familiar. I found my worst offenders (other than pure citrus, Coke, beer-dangit), was bottled water! I was convinced that bottled water was bottled water, but thanks to this site, I know that's not true.

            I was in a wedding, outdoors, and it was hot. I asked if the venue had any water and tried a brand I didn't know. Within a little while I was BURNING, and turned the bottle around and began to read the chemicals added "for flavor". I suffered through, but won't make that mistake again.

            It's partially trial and error, but I seem to be way more affected by chemicals than even acidic raw foods.

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            • #7
              Can anyone tell me what bottled waters are safe to drink. Thank You!
              Nancy

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              • #8
                If you google "bottled water ph" there's quite a few lists people have posted, but I stay with those that I know have a pretty high pH listed on the bottle or on their site: Evian, Fiji, Icelandic, etc. Brands vary a lot by region, so the smaller companies may not be available everywhere.

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                • #9
                  thank you for the information regarding bottled water.

                  Comment


                  • #10
                    I don't want to cause people any more alarm regarding foods/drinks than we already all live with, but I recently bought some Icelandic water that said Ph 10 on it, and I tested it with the strips I bought to test all the water at my house, and it was only a Ph 6.5-7!!!
                    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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                    • #11
                      Thanks for the tip about the water PH level. You never know what's really in anything now days.

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