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Hi everyone,
I'm new to ICN and was finally diagnosed with IC about 5 weeks ago. For as long as I can remember I've had bladder problems. I was dilated several times when I was 4 or 5 and after about the third or fourth time I decided I was no longer going to tell my mother that it hurt when I went to the bathroom or wet my bed! Looking back over the years, I can see where I have had pain off and on and went through "phases" of recurring "UTI's". I started down the trail of getting answers to my pain 4 years ago. I had my first cystoscopy then, was told by that doc that I was "fine" and was told by another doc that it was "all in my head" and that following a UTI my bladder could be inflammed for several months before it would settle down on its own. I just decided then that it was something I had to deal with and live with the pain. In January of 2007 I began another phase of what my GP thought were UTIs. After the third one in 3 months, I was referred to another urologist. He thought that I had IC from the first visit and immediately scheduled me for a cysto with hydrodistention. The cysto confirmed the IC and now begins my new level of frustration. My current uro has told me very little other than there are ulcers on my bladder and that it was extremely bloodshot. He started me on Elmiron but that is the only medication he put me on. I'm in pain constantly and he says just to keep taking the medication that it will eventually start working. From what I've read, Elmiron won't start working until about 3 months and needs to be taken for at least 6 months if not more. Is this right? When I asked my uro about this, he said he only kept his patients on it for 3 months and anything beyond that was too long. I feel so confused, overwhelmed, and frustrated at this point. I finally have a diagnosis of IC but now I can't get proper treatment for all of my symptoms. I called the University of Maryland today and was able to schedule an appointment with Dr. Toby Chai but he can't see me until July 3. Am I wrong in thinking that more can be done to help relieve my symptoms? Oh, it's also the week before my period and that is when my pain and discomfort really seem to skyrocket. Would continuous birthcontrol pills help with this? I had a tubal 6 years ago but will readily go back on them if it will help with the pain. Also, how is it determined what degree of IC one has? I have looked on the internet and can't seem to find the criteria for mild, moderate, and severe.
Thanks for taking the time to read all of this and listening to me vent.
I'm new to ICN and was finally diagnosed with IC about 5 weeks ago. For as long as I can remember I've had bladder problems. I was dilated several times when I was 4 or 5 and after about the third or fourth time I decided I was no longer going to tell my mother that it hurt when I went to the bathroom or wet my bed! Looking back over the years, I can see where I have had pain off and on and went through "phases" of recurring "UTI's". I started down the trail of getting answers to my pain 4 years ago. I had my first cystoscopy then, was told by that doc that I was "fine" and was told by another doc that it was "all in my head" and that following a UTI my bladder could be inflammed for several months before it would settle down on its own. I just decided then that it was something I had to deal with and live with the pain. In January of 2007 I began another phase of what my GP thought were UTIs. After the third one in 3 months, I was referred to another urologist. He thought that I had IC from the first visit and immediately scheduled me for a cysto with hydrodistention. The cysto confirmed the IC and now begins my new level of frustration. My current uro has told me very little other than there are ulcers on my bladder and that it was extremely bloodshot. He started me on Elmiron but that is the only medication he put me on. I'm in pain constantly and he says just to keep taking the medication that it will eventually start working. From what I've read, Elmiron won't start working until about 3 months and needs to be taken for at least 6 months if not more. Is this right? When I asked my uro about this, he said he only kept his patients on it for 3 months and anything beyond that was too long. I feel so confused, overwhelmed, and frustrated at this point. I finally have a diagnosis of IC but now I can't get proper treatment for all of my symptoms. I called the University of Maryland today and was able to schedule an appointment with Dr. Toby Chai but he can't see me until July 3. Am I wrong in thinking that more can be done to help relieve my symptoms? Oh, it's also the week before my period and that is when my pain and discomfort really seem to skyrocket. Would continuous birthcontrol pills help with this? I had a tubal 6 years ago but will readily go back on them if it will help with the pain. Also, how is it determined what degree of IC one has? I have looked on the internet and can't seem to find the criteria for mild, moderate, and severe.
Thanks for taking the time to read all of this and listening to me vent.
to the ICN! Sounds like you have been threw it with the IC battle also.
I am so sorry that you have been getting the run around. Elmiron, if this particular medicine works for you, you have to stay on it. I think you did a wise thing and got an appointment with another doctor. Usually a doctor can tell if you have mild or severe IC. I hope your new doctor will work with you and give you more help. Certain foods can irritate your bladder more and cause more pain, and taking alot of certain medicine can also do the same. You can go to the Home page and get this information. I think you are on the right track of seeking help and not given up until you do find out what is going on with the bladder. Hope you get help soon and start to feel better.
:woohoo:
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