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Still no change. Jeeze, I wish I had something good to report. I am still dealing with the never-ending sensation punctuated by periods of flares, despite the Elmiron, Hydroxizine, PTNS and PT. After my eighth instill with flaring afterward, my doctor agreed to let me pass on the ninth and final round.
A week ago, we added Lyrica into this mix. 150 mg/day last week moving up to 300 mg/day tomorrow. So far, I can really feel the prickly flip-flopping of my bladder. My frequency (along with that joyous full/pressure feeling) has intensified. Also, my face has broken out in quite a lot of acne. Can this really be happening? STILL? All I can say is, I believe I have an intimate understanding of what hell feels like.
Through the confidential employee assistance program at my work, I have begun to see a therapist because I recognize I'm in a deep dark place right now and not emotionally equipped to deal with this. The first session didn't really go that well. I cried the whole time. I don't really know how this will help me because it's not as if it's going to repair whatever is wrong with my bladder. It is always there. Sometime being prickly, sometimes sore and aching and too often relentlessly throbbing to the point where I think I will actually go out of my mind. I know many have been to this point and back and that keeps me going. Still, as the months pass, I feel less and less hopeful.
I'm going to a pain mgmt specialist on March 23. Through my primary care doc, I've tried Vicodin and now Percocet with no significant reduction in symptoms. I have kept a food diary but I'm still afraid to try foods from the "try it" list so it's hard to know what foods trip me up. I've been religious about the diet and do not see a connection between what I eat and how my bladder feels. It feels lousy most of the time no matter what "safe" foods I eat.
All I can do is keep trying, I suppose. My doctor brought up Interstim last week. I am horrified by that but I foresee that in my future, sadly. I wasn't able to take the Elavil or Pamelor because they gave me terrible rashes on my face. I would like to explore whether there are other drugs in that class that won't cause rashes. I would also like to know when I should pull the plug on the Elmiron. Seven months of this with no results. At some point I have to admit to myself to being in the percentage of people it doesn't help, right?
I can't get into see Dr. Parsons until June but my other doc is a gyno who worked w/ Parsons and is great. He's kind of baffled as to why the instills and meds aren't doing something. He's hoping the Lyrica will help but so far, no good. For now, my plan is to try all other drug options in Dr. Moldwin's book, one by one, to see if something clicks.
I am grateful for this message board and for several folks who have PM'd me with recommendations and ideas to try. I wish with all my heart and soul that something would work here. I appreciate this safe place to vent and the reminders that I am not suffering alone. Feeling really defeated and low. Thinking that, before IC, what I used to think were big problems were actually nothing at all. There is nothing I wouldn't give for those days again.
A week ago, we added Lyrica into this mix. 150 mg/day last week moving up to 300 mg/day tomorrow. So far, I can really feel the prickly flip-flopping of my bladder. My frequency (along with that joyous full/pressure feeling) has intensified. Also, my face has broken out in quite a lot of acne. Can this really be happening? STILL? All I can say is, I believe I have an intimate understanding of what hell feels like.
Through the confidential employee assistance program at my work, I have begun to see a therapist because I recognize I'm in a deep dark place right now and not emotionally equipped to deal with this. The first session didn't really go that well. I cried the whole time. I don't really know how this will help me because it's not as if it's going to repair whatever is wrong with my bladder. It is always there. Sometime being prickly, sometimes sore and aching and too often relentlessly throbbing to the point where I think I will actually go out of my mind. I know many have been to this point and back and that keeps me going. Still, as the months pass, I feel less and less hopeful.
I'm going to a pain mgmt specialist on March 23. Through my primary care doc, I've tried Vicodin and now Percocet with no significant reduction in symptoms. I have kept a food diary but I'm still afraid to try foods from the "try it" list so it's hard to know what foods trip me up. I've been religious about the diet and do not see a connection between what I eat and how my bladder feels. It feels lousy most of the time no matter what "safe" foods I eat.
All I can do is keep trying, I suppose. My doctor brought up Interstim last week. I am horrified by that but I foresee that in my future, sadly. I wasn't able to take the Elavil or Pamelor because they gave me terrible rashes on my face. I would like to explore whether there are other drugs in that class that won't cause rashes. I would also like to know when I should pull the plug on the Elmiron. Seven months of this with no results. At some point I have to admit to myself to being in the percentage of people it doesn't help, right?
I can't get into see Dr. Parsons until June but my other doc is a gyno who worked w/ Parsons and is great. He's kind of baffled as to why the instills and meds aren't doing something. He's hoping the Lyrica will help but so far, no good. For now, my plan is to try all other drug options in Dr. Moldwin's book, one by one, to see if something clicks.
I am grateful for this message board and for several folks who have PM'd me with recommendations and ideas to try. I wish with all my heart and soul that something would work here. I appreciate this safe place to vent and the reminders that I am not suffering alone. Feeling really defeated and low. Thinking that, before IC, what I used to think were big problems were actually nothing at all. There is nothing I wouldn't give for those days again.
i am in a dark place as well. im about a month in on the elmiron and i am experiencing soooo many side effects,makes me want to just throw in the towel on it.im thinking about purchasing dr moldwins book as well.i also agree what we thought were problems before ic,just dont compare to this. be strong. we will make it through.im hoping ic is not forever.
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