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Post by jules82278 on Feb 5, 2011 21:50:23 GMT -5
More recent research has shown that there is a correlation between Endometriosis and Interstistial Cystitis. I had urgency/frequency, but it felt like UTI symptoms without the burning. I noticed that my frequency increased and had nocturia (would wake in the middle of the night to pee) closer to the time of my periods. My RE suggested that I have a cystoscopy done with my last surgery. Well, lo and behold, I have IC. The uro-gyn said there was no doubt about it. Bright red inflamation of the interior bladder wall. I also have endo on the outside of my bladder, so that can cause additional symptoms. The IC diet really helped ... but I only managed to stay on it for six weeks, but there are other treatments. I recommend that you ask your doc about IC.
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Post by jules82278 on Feb 5, 2011 21:53:03 GMT -5
A bit more on my symptoms ... When I have an IC flare, I have trouble going at times. Have to pee, but takes a while to start the flow and then feels like my bladder had not emptied. The urgency is not super intense.
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Post by hellsbells on Feb 6, 2011 6:54:27 GMT -5
I've searched and searched for a thread entitled Interstitial Cystitis, but I can't find one. A lot of members are having quite severe urinary problems, and there are lots if references to IC in lots of different threads, so I thought it wise to create a thread specifically for information on symptoms and treatment of IC. If anyone finds an existing thread please let me know!
Helen
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Post by JC on Mar 22, 2011 15:39:16 GMT -5
I'm reviving this thread since the topic came up in a personal message.
I couldn't find any other threads on this issue either. I could have sworn there was another one!
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Post by claireboe on Mar 22, 2011 15:49:44 GMT -5
When I did a search, two posts came up, but neither thread was very long. The article that pretty posted: findarticles.com/p/articles/mi_m0CYD/is_6_37/ai_84393307/is very interesting. 70-90% of endo sufferers also have IC!!!! So, why aren't all the ob/gyns sending endo sufferers to urologists?! There are days when I think that the frustration I have with the lack of help for you all, and my dd, is going to kill me. Dd doesn't have any symptoms of IC, other than near constant pelvic pain. It could be that the pelvic congestion syndrome is causing it, but there is basically no treatment for that. I am screaming in my head with frustration...
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Post by Heather on Sept 3, 2011 23:12:26 GMT -5
Saw a wonderful new gyno yesterday who thinks that I have IC. I'll be seeing a urologist to confirm it. I do pee a lot, but I figured that was normal considering how much water I drink (about 3 L a day). Lately though, I've definitely been having urgency... I'll feel fine then suddenly have this dire need to pee and damn near wet myself. I've been forced to use some really nasty public bathrooms because of this... glad I can hold it that long though. If I try to hold it too long I have this immense amount of pain.
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Post by omaklackey on Sept 3, 2011 23:52:08 GMT -5
gaispriestess, thats the same problems I had and the 1st cystoscopy was negative for IC, but they are checking again on tuesday!
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Post by painttheseconds on Sept 3, 2011 23:57:56 GMT -5
I'm wondering if I have this given the recent issues I've been having.
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Post by Karen on Sept 5, 2011 8:25:05 GMT -5
A few docs I saw swore my issues must have been IC, but alas, a cystocscopy showed everything was working fine and dandy in there (though the procedure hurt like hell!)... We later figured that the constant inflammation in the general area was probably to blame and once I got that under control, the big complaints went away. I still have some minor issues with frequency, but chalk that up to hormones.
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Post by omaklackey on Sept 8, 2011 14:12:45 GMT -5
I did get diagnosed with IC. It requried a partial hydrodistention to see it. (Something my first urologist did not do). She was unable to do a full hydrodistention because of the bladder defect she found. So I get to add to my long list of meds.... YEAH, UGH
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Post by Karen on Sept 8, 2011 18:14:57 GMT -5
Don't you want to go back to the original one and tell him to suck it? I'm glad you have some answers, at least that way, you know how to better approach it!
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Post by omaklackey on Sept 8, 2011 19:13:04 GMT -5
I'm doing some research on the Hydrodistention, that was mentioned in another thread. Apparently many patients with IC showed a clear cystocopy but under hydrodistention they then had very clear glomerulas which is tiny spider looking red marks indicative of IC. So all of us who were told there was nothing wrong, need to find a better urologist and request for diagnostic purposes, the hydrodistention.
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Post by Heather on Sept 9, 2011 0:40:11 GMT -5
One of the reasons I never went to the doctor sooner about possible IC is that I figured the amount I pee should directly correlate to the amount I drink. A doctor/friend told me I needed to drink more water, so I started. Right now I am up to a gallon of water a day, and I pee about 8 times a day (including getting up at night). I figure that makes sense. My husband now wants me to cut back on how much I drink. He is convinced my kidneys or bladder will shut down or become damaged due to overwork. I've tried explaining to him that more water means they will work more smoothly, but he doesn't believe me. Am I wrong? Should I really be worried about how much water I drink? Some days I will have a glass of apple cider as well, but other than that I ONLY drink the gallon of water a day.
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Post by omaklackey on Sept 9, 2011 12:49:32 GMT -5
I always feel better if I stay hydrated!! especially with my bladder pain. The more water I drink the better I feel. I'm going to be looking at the "trigger" things that will make it worse though.
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Post by Karen on Sept 9, 2011 13:05:00 GMT -5
The only caution I can think of about drinking that much water is your electrolytes. Too much water can dilute what your body needs in terms of electrolytes. I'm sure there's a better way to explain it, but it's escaping me at the moment. As long as you're keeping that in mind, I don't know of any other reasons why a lot of water would be a problem.
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