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  • My Story....

    Hello everyone, its been so long since ive posted... I hope this finds everyone doing well. Ive had IC for sure sine June of 2000. Im 29 years old now-and it began at 27. My urologist feels that most likely ive had it since the age of 18, when I began having UTI's consistently. In 2000-is when a UTI hit-and seemed to never go away-or at least the symptoms didnt. On top of being a million times worse-then the previous UTIS. Ive had tons of doctors-who have tried every medication possible known to man or so it seems. My main problems being burning, extreme pain, and pressure. The frequency for some reason seems to be lessened-with my Pain meds? Ive been on so many medications-a few months ago-I was on 26 different meds daily-and at that point. I finally said enough was enough. I do have alot of other health problems-that began when the IC did-I now have IBS-and Fibromyalgia-my immune system seems to be shot. I am sick all the time-with UTI's-Kidney Infections-Ear Infections-you name it, it seems to happen-even jaw infections-that no one can figure out why? My monthly cycles have been so messed up since this all began-and always seem to cause my symptoms to be worse. My doctors have now decided I need a full Hysterectomy-there hoping this will help to alleviate some of my symptoms? Im so scared that its going to make me worse.. Ive had two cystoscopies one with hydro-that only seemed to worsen me. Also laproscopy, and hysteroscopy. And a jaw surgery-after each im so ill. IT takes weeks to get back to what I was before. Even just having my yearly women exam-placed me in such a horrific flare-I was just placed on Prednisone-a week or so ago-for yet another jaw infection-and ended up flaring so badly I really thought I was dieing, it was that bad... and all I had taken was two dosages. I have stuck to the IC diet-and do notice alot of foods will trigger my problems to worsen. I feel so angry and depressed most of the time. I dont get good sleep ever.. The pain and pressure-seem to run my life. I have had several primary physcians-and gynecologists-and urologist-to try and find the best care possible. I am lucky that I have found a doctor who truly cares-and works her hardest-to help me lead a better life-but we have tried everything-the latest med has been the Cysta Q-and sitll no luck.. I also havent been able to work-or do anything physcial-Any activity makes me hurt even worse. Basic things like shopping-Kill me. I feel so ill all the time-like the flu but worse. I have a careprovider that comes in daily-to help with cooking and housework etc. I no longer can drive-and even riding in a car-makes frequency and pain worse. I have tried so much-and just want a life again. I have two children 6 and 9. And I cant even be a normal mom-Im a wife, who cant even have intamicy, my husband is great-but I feel everything slipping away. I just dont know what else to do? I cant imagine the rest of my life like this-somedays I wish that IC would just end my life. Anything would be better then the suffering. I would never do such a thing-I just dont know what else to do-or where else to turn. Ive had all the tests-and medications-ive even tried acupunture. anything to relieve this nightmare. If anyone has any suggestions-id be ever so grateful. Sorry for being so down, and thanks so much for being here-its so wonderful to have people who truly understand... Big Hugs and healing prayers to all.. ) [email protected]
    [email protected]

  • #2
    Hi Kaye Kaye, I can honestly say I have been there in your situation, You must see a pain spealist, that is there job, and they are really good at it, they will keep on trying new things until your pain is like a two or three. I was on oxycotin for a long time and it has done some damage on my liver, but thru time, that will rebuild and heal. I now have the implanted pain pump, which is wonderful, some days I would never think I ever had a problem. I take some oxycotin when I need it like if I over did it. Please go to a pain doctor and discuss the pain pump, there is nothing to loose and everything to gain. I hope things get better for you soon. The pain specialist is the only way to go. Please keep in touch and let me know how things are going, I have a new email address. [email protected]
    Sue

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    • #3
      Hi Sue, I have gone to one pain center-a few months after all my problems began.. All that happened was the doctor said all she could possibly do for me was prescribe pain meds--and due to the fact I had to travel over an hour just to get there-she said that she couldnt see why my regular physcian couldnt prescribe the meds just like her.. She did write him a letter and told him what meds to try and dosages etc.. The first doctor I had was very against using anything for pain--He would tell me I had the right not to suffer-but then turn around and give me very little support either.. I ended up going to a whole different set of doctors-the second doctor-was more into the natural approach for treatments--thats when I had the acupuncture etc.. He was really great-in some ways. But my insurance wouldnt cover the treatments-and it just got to spendy for me to cover. I was recommended to the doctor I have now by my local hospital, one of the doctors in the emergency room-was telling me Id recieve better treatment etc.. Switching was the best choice I ever made. I now have a female doctor--and Id tell anyone to switch until you find a doctor who truly listens and cares. Shes so wonderful> She was going to refer me to another pain clinic-if I reallly wanted. But instead, shes agreed to do whatever it takes-to help me to not suffer with this pain> So im grateful for this-and with her being a woman-shes seems to understand and care more.. I have discussed the pain pump with her. And she feels that she wants me to have the hysterctomy-and see how im doing after-shes hoping it will alleaviate my pain a great deal-shes wonderful, but sometimes she has more hope then I.. Its to hard to hope so much-and at every turn, get knocked down. Its more devastating-then just having the IC and accepting it. Maybe this is a bad way to look at it--who knows??? So I hope she does follow through and after the hysto-She will send me to a doctor that can perform that surgery-do you know what type of doctor does that?? Do I have to go through a pain center?? Please let me know.. Thanks Again-Sending Healing Wishes For Us All!!! Feel Free to Email [email protected] :p :p
      [email protected]

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      • #4
        {{{Kaye Kaye}}},

        I am sorry you are having so many problems.
        Like Teri I have no real advice to offer, but know that I am saying a prayer for you and keeping you in my thoughts.

        Healing Hugs,
        ~tracy
        Things change. The truth does not change according to our ability to stomach it. Without change, something sleeps inside us, and seldom awakens. The sleeper must awaken......All things change.

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        • #5
          Hi Teri and Kaye Kaye, I am so sorry you are having such a bad time. To answer your question about who did my surgery, my pain doctor was also my anthesialogist,(s/p) he did the surgery, like I said along watching him was the rep from Medtronics. Call the 800 number from Medtronics, or check out their web site.They are there to help. I am very lucky to have such caring doctors. My surgery was done in Danville, Pa. By a Dr. John Han. If there is anything else I can do for any of you please let me know, you all were there for me when I needed a friend.
          Take care and keep in touch..You are in my prayers..With the pain pump I only take oxycodone for break thru pain. I am as near to l00ยบ as I will ever be, and I am happy...
          Sue

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