by ihateic, 26 minutes
I have been diagnosed with interstitial cystitis since 2005. Managed well with bladder installations only for several years. In 2010 I had a bad reoccurrence and have struggled since. In march 2012 I had a hydrodistention which made the condition worse. My uro was prescribing vicodin 5/500 since march. I requested pain management and they gave me baclfwn and cymbalta, neither of which address the severe pain of a flare. Now my uro has cut off the vicodin and pain management will not fill. What should I do? I'm considering going to the er but not sure what good that will do as this condition seems poorly understood. I feel ghat the doctors do not understand how much pain I am in.
IC can be quite difficult to manage since there is no specific treatment. Management is largely symptomatic with anti-inflammatory measures and pain control. Without knowing the relevant clinical details or a detailed clinical evaluation it would be difficult to comment on the situation or suggest a management plan. It is best advised to discuss the situation with a urologist/ pain management specialist.
Most uros will not continue to prescribe pain meds for a condition like IC, you have to go thru your GP or find a doc who will help you. Don't know why, maybe their prescribing limitations? or that they are not considered your GP. My hub has severe IC with Hunners and the whole shebang, and his nurse practitioner is his main man. He has been really, really good to us, altho he never had a male IC patient. He's been thru it with us since the beginning, and has educated himself quite thoroughly, and we always bring him in something new when we see it on the net, save him time too. Don't know what relationship you have with your GP, is he/she familiar with IC and if not, print some stuff out and take it with you. If your GP won't help you, you may have to go doc shopping. Have you looked at the ic-network or association, sometimes they will allow members to post of doctors in different areas of the US. In any case, our NP is very liberal with pain meds, and hub is pretty much maxxed out at this point, and got script for medicinal marijuana as he can't go any further with pain meds unless it's methadone, which scares the bejezeus out of us. The medicinal marijuana helps a lot, don't know if it is legal in your state. Our NP could not prescribe it himself, but supported it 100%, and got RX from a clinic in state (Maine) with no problem. Let me know how you make out, maybe we can stay in touch thru this "journey"
Thanks for your post. Since my last post the NP at pain management has prescribed 20 5/500 mg vicodin. I'm managing ok but I don't know if that amount will take me through to the next appointment. I just get soooooo tired of explaining myself to doctor after doctor even though I have a documented history of 7 years of bladder instillations, countless meds (nOn narcotic) and a hydrodistention that showed severe glomurations. I don't have hunners ulcers. Sending you and the hubby prayers for coping with this hateful disease. My husband is wonderful always supportive and my strongest advocate. Keep me posted on your husbands progress. I appreciate your response.
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