Hello all!
I am new to this community, although I have been lurking for over a month, gathering much knowledge from your posts.
I finally joined, and wanted to introduce myself and tell my story:
I am 28, and married 5+ years now, with a lifetime of UTI's and kidney stones (over 7 so far since I was 16). 2010 I started having symptoms of IC, thinking they were UTI's - but the "tummy bloat" is what threw me off - that and no urethral pain. My husband and I move around every 3-4 years due to his work, and being new to the SpaceCoast area of FL, I found a local Urologist - Prodromos Borboroglu. Supposed to be one of the "best" urologist in the area. Well, after my full experience with him, I think his field of expertise is NOT IC.
After a month of different tests, he Dx'ed me with IC. I DO believe his diagnosis. It's the treatment I've been having difficulty with....
I began Sanctura for the spasms/urgency and Elmiron in 9/2010 and it solved all my problems.....until over the course of 6 months 50% of my hair fell out, broke off, and became almost irreversibly damaged to the core
. I had to quit the Elmiron (as my studies showed no hair loss issues with Sanctura).
FFWD - August of this year, 2011 - I quit Elmiron, and stayed on Sanctura. My Uro was NOT happy about this, and not open minded at all to "alternative methods" like Cystoprotek, Aloe Vera, nothing! He offered me nothing, and I left there empty handed and lost.
That's when reserach led me to IC-Network! After a few weeks of study, I ordered and started taking Cystoprotek and Desert Harvest Aloe Vera capsules. I hoped the weaning/transition would be smooth - but it is not. Within the month, my symptoms have returned, and NOW I have to follow the IC Diet, which I have never had to do before.
I returned to my Uro, telling him that I AM taking these new "non FDA regulated" meds, with the Sanctura, but the Sanc isn't helping enough. He was not open minded to anti-depressants, and skeptical about antihistamines.
I had to PUSH him into giving me other meds, and just this weekend began Enablex and Atarax to help the Cystoprotek and Aloe Vera.
I am thinking that none of these meds have been in my system long enough to know if they are going to work, and bring me back to normal. But I don't know how long is long enough to wait, before moving onto another combo.
In conclusion - I feel like I am floundering in the water, guessing at which direction to take. I will NOT be going back to Dr. **** in Melbourne, and now have to seek out a new Uro who understands how to treat IC! I am willing to drive to Orlando.
If anyone has any suggestions on a great Uro - PLEASE message me or respond. If anyone has any comments on my ongoing plight - commiseration or thoughtful hugs are always welcome. Just trying to find out my "dynamic combo" and eat each day without winding up in stinging, distended, urgency riddled pain.
Thank you if you read all of this...... you deserve a cookie!
I am new to this community, although I have been lurking for over a month, gathering much knowledge from your posts.
I finally joined, and wanted to introduce myself and tell my story:
I am 28, and married 5+ years now, with a lifetime of UTI's and kidney stones (over 7 so far since I was 16). 2010 I started having symptoms of IC, thinking they were UTI's - but the "tummy bloat" is what threw me off - that and no urethral pain. My husband and I move around every 3-4 years due to his work, and being new to the SpaceCoast area of FL, I found a local Urologist - Prodromos Borboroglu. Supposed to be one of the "best" urologist in the area. Well, after my full experience with him, I think his field of expertise is NOT IC.
After a month of different tests, he Dx'ed me with IC. I DO believe his diagnosis. It's the treatment I've been having difficulty with....
I began Sanctura for the spasms/urgency and Elmiron in 9/2010 and it solved all my problems.....until over the course of 6 months 50% of my hair fell out, broke off, and became almost irreversibly damaged to the core

FFWD - August of this year, 2011 - I quit Elmiron, and stayed on Sanctura. My Uro was NOT happy about this, and not open minded at all to "alternative methods" like Cystoprotek, Aloe Vera, nothing! He offered me nothing, and I left there empty handed and lost.
That's when reserach led me to IC-Network! After a few weeks of study, I ordered and started taking Cystoprotek and Desert Harvest Aloe Vera capsules. I hoped the weaning/transition would be smooth - but it is not. Within the month, my symptoms have returned, and NOW I have to follow the IC Diet, which I have never had to do before.

I returned to my Uro, telling him that I AM taking these new "non FDA regulated" meds, with the Sanctura, but the Sanc isn't helping enough. He was not open minded to anti-depressants, and skeptical about antihistamines.
I had to PUSH him into giving me other meds, and just this weekend began Enablex and Atarax to help the Cystoprotek and Aloe Vera.
I am thinking that none of these meds have been in my system long enough to know if they are going to work, and bring me back to normal. But I don't know how long is long enough to wait, before moving onto another combo.
In conclusion - I feel like I am floundering in the water, guessing at which direction to take. I will NOT be going back to Dr. **** in Melbourne, and now have to seek out a new Uro who understands how to treat IC! I am willing to drive to Orlando.

Thank you if you read all of this...... you deserve a cookie!
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