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My story of how I.C. has been a crazy, crazy mess!!!

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  • My story of how I.C. has been a crazy, crazy mess!!!

    My pain started about 10 years ago. It all started with an ear, nose and throat doctor giving me an over abundance of antibiotics that caused me to have candida throughout my body. Ever since, I have to watch how much bread and sugar I intake. I don't know if this led to the I.C. but, I'm convinced it did.
    The I.C. pain started about 4 years ago. I went to the Gynocologist and he did a hysterectomy, that didn't help so the Gyno nurse told me this pain wasn't female related. I go to my family doctor and he sends me to another doctor and said I had a hernia, so I have ANOTHER surgery. Guess what!! pain still there. (Actually, pain was worse). I go back to my family doctor and he wants me to have a colonoscopy. He found colon cancer (at 43 years of age). Luckily, he got it all, but, the pain was STILL there. My doctor sends me to a urologist and he diagnosed me with I.C.
    I then go to a doctor that specializes in I.C. She had me to come in once a week for cocktails (heparin/lidocaine). I finished the treatments, I can't remember how many treatments it was. I couldn't drive because the pain was unbearable. My daughter drove me back and forth for doctor visits and treatments which was about 3 months. The drive itself was 45 minutes to 1 hour getting there. After the treatments I am unable to urinate. I have to use a catheter every time I urinate. The cath adds more pain to my I.C.
    After this, I go to ANOTHER urologist because he's closer (15 minutes away). He asked me if I was sure I had I.C. and I told him both doctors confirmed it. So, he proceeded and did the D.M.S.O treatments. After the first treatment the pain was so bad, I litterally thought I was going to pass out. I felt like I had to have a bowel movement but, couldn't. The second treatment did the same thing but WORSE. Ever since then I have had that same feeling. Now, I can't urinate and I feel like someone shoved their fist up my rectum.
    My next physician I think was a medical doctor. He told me I had scar tissue built up around my hernia and it needed to be removed. So, he sends me to another physician and he does that surgery. It helped that pain but, I'm still in severe pain and NEVER thought I would be taking so much medication. I have tried everything. I have to take at least 6 to 8 tramadol pills to function and to get out of bed by 11:00, I guess that is an accomplishment, it used to be 1:00. I take 2 pills for Irritable Bowel, zofran and phenergan (depending on what time the nausea is brought on due to phenergan makes me drowsy). I also take atarax but, can't take it everyday because it knocks me out at least for a whole day. I also insert valium at night. The valium seems to help at night but, the pain is right back the next morning.
    I forgot about the Neurologist that told me I needed to quit taking my pills. He insisted that was my problem. The crazy thing is he didn't even know what I was there for. Another physician sent me to him because of spinal stenosis he diagnosed me with. He was ONLY suppose to read the scans. He had my husband convinced I needed to get off the pills. That was the most devastating day of my life!!!
    After this I went to ANOTHER urologist. You would think I had learned my lesson but, no I like an idiot let this doctor start all over. He had his nurse to do a test on me, I can't remember what kind but, it felt like she had a brush with wire bristles going inside my bladder then, slowly take it out. I didn't know if I was going to pass out or throw up. I told her I couldn't take it anymore. That did it right there. I am not going to let anymore doctors touch my bladder. The more they do, The more pain and problems I have. Thanks for reading my story. I don't know if any one has had any experiences like I have and hope noone does. I don't know if it's the meds or the I.C. but, I have a very hard time remembering and thinking clearly.

  • #2
    Hi, nener63 ~ I'm so sorry to hear your painful experiences for so long. I did notice that you said you get some relief from using the valium at night. Just this week my PA told me I can use them up to 2xDay for the pain. I just can't get my urine stream started. It definitely helped having more than 1xDay. Also have you been diagnosed with PFD? When our bladders get so irritated, our muscles try to protect us by tightening up. Then more problems.

    I sure hope you find some relief of your symptoms. Sounds like you're overwhelmed with so much.

    Blessings and maybe someone here on the ICN will have some info for your. Keep us posted.
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

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    • #3
      IC diagnosis 3 weeks ago.
      Vesicare 10 mg once daily
      IBS and Gerd-Zegerid
      IC diet
      Elmiron 100 mg three daily
      Hydroxyzine 25 mg at night
      Amitriptyline 10mg at night
      Diovan 60/12.5 daily
      Topral 50 mg daily
      Zoloft 100 mg at night
      Klonopin .5 twice daily

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      • #4
        I'm sorry you're having such a horrible time. I hope you're not taking that many tramadol pills within only a few hours --- that could be dangerous. Are you following an IC diet? If the diet and drinking six to eight cups of water daily doesn't help at all, I suggest you talk to your primary care doctor about a referral to a pain management specialist.

        I hope you feel better soon.


        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        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.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

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