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New and not sure have IC but something happening!

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  • New and not sure have IC but something happening!

    Hi all my name is Angi (djbunnie),
    I began to have bladder spasms as soon as I woke up from my vaginal hysterectomy in 1992. What a way to wake up from surgery! Wowzers that was so painful I got sick to my stomach!! I cried and complained and the nurse finally called the gyn and he told her to give me 20 minutes to void and if I did not to straight cath me then recath me...It took me the whole 20 minutes but I peed on my own there was no way they were going to cath me again. I had never had that done before, so i have no idea what went wrong but it was horrible.
    I was extremely ill in 2004 and my daughter and son-in- law rushed me to the hospital, where it was found that my bladder could hold over 20 fluid ounces without my feeling it. So I went from spasming to no sensation, and now complete incontinence. My medical hx is really long!!

    Hashimoto's Thyroiditis 1990
    Sub-total then total Thyroidectomy 1991 due to papillary carcinoma
    Radioactive Iodine Isotope oral treatment for Thyroid Cancer Nov 1991
    Vaginal Hysterectomy 1992 due to cervical cancer from HPV - bladder spasm began also ovaries were left as I was only 25 at the time, however, the gyn did not take into consideration I had just 9 months before had Radioactive Iodine that went through my whole body, I began soon after to have menopausal issues, but was not believed.
    1993 began having episodes of waking up feeling like my neck was broken, could not lift my own head.
    Posterior Hypotension 1996 due to being completely Hypothyroid for 5 yr body scan, my body rejected the medication I had been on, muscle damage
    Bilateral Bunions 1997
    Gallbladder removal 1998 took a long time to recover as the neck of my gallbladder was full of stones and I had been misdiagnosed for about 5 years with kidney stones, gastritis ect....the problem with my gallbladder was caught by complete accident during a CT for swollen lymph nodes....
    Right breast dx of fibrocystic breast disease lump removed 2000
    Right knee Arthroscopic lateral release, after knee injury in which my quad muscle totally atrophied, and never recovered. DDD, OA DX 2001
    Dx FMS/CFS in 2005 (FINALLY A DX!) Had been having so many issues with FMS related symptoms and was told basically was all in my head before my very kind new doctor told me "No this is real it is not all in your head."
    Recently during a routine visit to my pain management doctor I learned that my previous doctor in 2005 had lied to me about the results of a Lumbar MRI...I have a bulged disc at L4, increasing arthritic in my thoracic spine, and I told him about my complete incontinence and loss of sensation in the whole region, he replied "had you gotten to me soone this would have been seen as a medical emergency and testing would have been done to reveal any nerve damage/pinching. I do not have any insurance, and like many have had to go to the FREE CLINIC in my area which is deficient to say the least. I have been denied disability twice, the last time I was denied I was told by the actual examiner of my records that I WAS TOO YOUNG! I have had thyroid level issues since June of 2006(yes 9 months now), which for me can be deadly. My TSH must stay suppressed at .01 and in December it was 6.989 and no doctor at the FREE CLINIC can comprehend my particular endocrine issue.
    At this point all I can do is pray for some help and answers, and try and understand the problems my body is going through. Could this new found truth about my bulged L4 and the spurring be why I have no sensation now? If that doctor in early 2005 had told me the truth would it have saved me from going through the complete incontinence and loss of all sensation in that region????
    So many questions and problems and 40 is just around the corner. I have been blessed with a very understanding husband and he is now my medical advocate. Our children help where they can, and I do get to spend time with my beautiful grandson who will be 2 in 2 weeks. Ethan is my inspiration for so many things, hopefully someday he will know what he means to his Nana.
    Ok basically this is what I have been through in the last 15 years or so. I look forward to learning more about this bladder problem I have.

    Blessings of Unconditional Love, Light and always Beautiful Healing Flowers to you alllllll

    Current meds:
    Levoxyl .137 qd Thyroid replacement
    Neurontin 600mg TID Nerve pain from FMS/MFS
    Flexeril 10 mg HS Constant Muscle Spasm
    Prozac 60 mg HS Severe Depression
    Valium 5 mg TID (prn) 10 mg HS Anxiety/panic attacks
    Hydrocodone 7.5/750 TID PRN pain

    Wishing all Unconditional Love, Light and always Beautiful Healing Flowers

  • #2
    WHOA!... Bless your heart.... you have been through so much!!.

    I just wanted to welcome you and say we are glad you found this site... This best way to find out things with IC is keep asking questions..
    Another good resorce is the IC handbook I will give you the link below.. again!


    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

    Link to Patient Handbook:

    Diet Reference Sheet:

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


    • #3

      Hi there and to the gang! And also like to say it's nice to see another Michigander, hee hee!

      Wow, you have been through the preverbial wringer haven't you? You are one strong woman!

      I really wish I had some answers for you, or some insights or something! I know what it's like to deal with the clinics, that sometimes is not easy as well. Have you seen a urologist yet? Have you discussed it with your doc that you do see to see if he/she has any ideas on why it's happening to you??

      I am so sorry you are having to deal with all of that, gosh. I am glad to hear that you have a nice and supportive husband to help you through all of this and hope you find some answers soon!!!

      Big hugs and once again welcome to the gang!
      How do you eat an elephant? One bite at a time...

      Harry arrived 2/23/09!

      *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      IC Diet Cheat Sheet:

      IC dx'd Nov 2004
      Lymphocytic Colitis dx'd July 2005
      Possible IBS
      Current IC Meds
      Vistaril 25mg in the evening
      Previous IC Meds taken:
      Cystoprotek - 2 caps 2x's a day
      Elmiron, 100mg 3x's a day
      Ditropan, 5 mg 3x's a day
      Wellbutrin 150mg 2x's a day for Anxiety/IBS
      Pepcid 40mg a day for GERD
      Zytrec for Nasal Allergies
      Align Probiotic daily for IBS


      • #4
        Welcome, Welcome, Welcome!!!

        You are going to find that alot of us have similar issues and it feels so good to have people who can understand what you are going through! It's okay, you aren't alone anymore.

        HUGE HUGS,