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Hello!
This is my first post. I was just diagnosed with IC 2 weeks ago. Here’s some info:
I was diagnosed with Endometriosis last year during a laparoscopy, but have had symptoms of it for 13 years. For the last year I suffered chronic pain and kept complaining about it to my doctors, but they kept saying that it was all in my head. I finally found a specialist in my state who treats endo and he did a lap 2 weeks ago to remove all the endo deposits he could find. Since I had endo removed by a specialist, the chances of the endo coming back is very slim.
The doctor also knows about the connection between endo and IC, so the urologist he works with did a cystoscopy of my bladder during the lap. (I didn’t know anything about the disease before then.) He found a pretty bad case of IC and performed hydrodistention. During the surgery, he was cauterizing a bleeder in my ureter and left the heating element on it for a second too long, which slightly burned my ureter. Because of that, he put a stent in it that goes from my kidney to my bladder. Because of the condition of my bladder, the stent has been bothering it and I ended up in the ER a few days after the surgery with a fever of 102.7. After 10 hours of tests, they determined the stent is just irritating my bladder and causing a fever. The stent gets taken out next Monday.
Anyway, I’m totally new to IC and don’t know much about it. I have a million questions and concerns, but the first one is about pain. Since I’ve spent the last few years chalking my pain up to endo, I don’t know what a flare is. How do I tell that apart from the endo pain? How do I know if it’s a food that’s bothering me, instead of something else in my pelvis? I’m even more confused because of the stent, because I don’t know if that’s what’s causing pain or if maybe it’s a flare. If any of you could give me tips or suggestions, I’d greatly appreciate it.
Thanks!
Allison
This is my first post. I was just diagnosed with IC 2 weeks ago. Here’s some info:
I was diagnosed with Endometriosis last year during a laparoscopy, but have had symptoms of it for 13 years. For the last year I suffered chronic pain and kept complaining about it to my doctors, but they kept saying that it was all in my head. I finally found a specialist in my state who treats endo and he did a lap 2 weeks ago to remove all the endo deposits he could find. Since I had endo removed by a specialist, the chances of the endo coming back is very slim.
The doctor also knows about the connection between endo and IC, so the urologist he works with did a cystoscopy of my bladder during the lap. (I didn’t know anything about the disease before then.) He found a pretty bad case of IC and performed hydrodistention. During the surgery, he was cauterizing a bleeder in my ureter and left the heating element on it for a second too long, which slightly burned my ureter. Because of that, he put a stent in it that goes from my kidney to my bladder. Because of the condition of my bladder, the stent has been bothering it and I ended up in the ER a few days after the surgery with a fever of 102.7. After 10 hours of tests, they determined the stent is just irritating my bladder and causing a fever. The stent gets taken out next Monday.
Anyway, I’m totally new to IC and don’t know much about it. I have a million questions and concerns, but the first one is about pain. Since I’ve spent the last few years chalking my pain up to endo, I don’t know what a flare is. How do I tell that apart from the endo pain? How do I know if it’s a food that’s bothering me, instead of something else in my pelvis? I’m even more confused because of the stent, because I don’t know if that’s what’s causing pain or if maybe it’s a flare. If any of you could give me tips or suggestions, I’d greatly appreciate it.
Thanks!
Allison
(lapex surgery done by specialist 3/07; now pain- and symptom-free!)
), and Depot Provera (the worst thing my body’s ever gone through!
to the ICN, Allison. So glad you found us. 
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