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Had for three years and in a flare

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  • Had for three years and in a flare

    Hi, I've read a lot of posts but I've never contributed but I'm at my wit's end. Before developing IC for years I had IBS and was told I had fibromyalgia and/or some undiagnosed autoimmune disorder. I also had migraines and I am infertile. I didn't realize that possibly all these things are related but when I go to the doctor's they just treat each thing separately and treat the symptoms. I only had bladder urgency up until two years ago when because of perimenopausal problems I had a uterine wall ablation to get rid of fibroids. The burning, pain and urgency increased after that. Then I went to a urologist in Santa Ana and have been going to him ever since but he only treats the bladder. Sometimes the pain spreads to the vulva. When I went to the gynecologists they didn't know what to do and that sent me back to the urologists. Three years later I only have temporary relief and on top of that I've gained 30 pounds (I'm on elavil, prozac, elmiron (which doesn't work for me), and three different high blood pressure meds because that has sky rocketed). The only answer my doctor gives is to solve the immediate flare with rescue distillations of DMSO/cocktails. It is so painful that sometimes I'll stay in a flare instead of calling for an appointment. I'm a teacher in a high school and this is making it very difficult to do my job. But then the doctor always points out to me that I must do something about my stress levels. Learn how to handle stress better. Or that it must be something I'm eating. Also, no one seems to understand when you tell them that there isn't a "cure." I'm tired of just maintaining and coming home in pain and then just curling up and going to sleep just to get up the next morning and hope I can make it through my job. Recently, I read Dr. Vliet's books and I found it encouraging, but because of a previous experience with a doctor who promised he could holistically solve all my problems (vitamins and herbs that sent the IC in overdrive that I had to buy from him was his "cure") I'm afraid to try someone new. Dr. Vliet says that she looks at all the syndromes and instead of treating symptoms tries to find the root cause. Has anyone gone to Dr. Vliet? The reason I ask is usually these clinics require money up front and then you have to deal with the insurance companies and it isn't cheap. I think Dr. Vliet's is 3500 for testing etc. and that doesn't include flying to her place and staying at a hotel during the visit. I'd like to know if anyone has tried this and if this has already been posted, I'm sorry. Just tired of it all. Teewren,MV, Ca

  • #2
    I am so sorry you are going through such a rough time..
    About this doctor my opinion is if she really did cure IC then all of us would be jumping on a plain to see her.. So just be careful on how you approach doctors or herbelist that say they can cure IC, because as of right now there is no cure.I really wish there was though...

    Well I hope you find something to help your suffering.. God bless you and hope you have pain free days really soon

    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.