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Post by omaklackey on Sept 9, 2011 12:44:27 GMT -5
Sounds like endo of the bladder which causes IC like symptoms. You can call it IC or endo but it still freaking sucks. I'm looking up some of the things that can irritate the bladder (also you can go into "remission" with IC as well) So here is a list of top forbidden foods: 1. coffee of any kind 2. Regular and Green tea 3. soda and diet soda (fake sweeteners make IC flare) 4. Fruit Juices 5, multi vitamins, vit. C and vit. B are apparently the worst 6. artificial sweeteners 7. chocolate. I could never figure out why it was so much worse sometimes, and now I think that it may be some of the food/drinks I do. I know orange juice is horrible but I never made the connection on these other things. Here is the address with a better explanation: www.ic-network.com/diet/#forbiddenfoods
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Post by jessabug on Sept 11, 2011 12:11:38 GMT -5
I do have endo on the outside of my bladder for sure, I found that out when I got my papers from dr. redwine. And jeeez.... i consume everything on that list except soda and artificial sweeteners! no wonder..
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Post by tarabobara17 on Oct 31, 2011 15:16:31 GMT -5
I am so confused. My symptoms fit a uti perfectly. i have to pee frequently, and it's very urgent. urine is cloudy or dark colored. i went to my gyn, but they found no evidence of an infection anywhere. So i have all the symptoms of a uti, but no uti? the only thing i think is off is this has been going on for a month +, and the peeing problems seem to be on and off. I just dont know what to do. any ideas? and should i go back to my gyn again after that test came back negative?
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Post by omaklackey on Oct 31, 2011 15:41:58 GMT -5
That's why I keep posting all this information on Interstitial Cystitis ( or IC ). Mine was missed the first time with a cystoscopy done by a urologist. I went to my gyn-urologist and she did a cystoscopy with Hydrodistention and it was very, very evident that I had Interstital Cystitis. It takes a lot of people a long time to get to this diagnosis but the hydrodistention can help you find out. You defintily should contact your doctor and get a referal to a urologist, preferbly one that is also a gynecologist and describe the symptoms just like you did, "a UTI, that isn't one", which is the perfect description for IC. Cloudy urine, painful urinating, frequency, blood in urine, protein in urine, all signs and symptoms of IC.
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erna
New Member
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Post by erna on Oct 31, 2011 18:18:11 GMT -5
It's amazing to be directed to this thread, this is totally ME! I have been dealing with These symptoms for the past 9 years. I knew that it had to be something else when my doctor said that it wasn't a UTI and told be to go home and wait it out. I knew that I had endo on my blatter and did some research and it said that these were sighs of endo on the blatter, but to hear that so many other ladies are dealing with the same issue is eye opening. It's sad to say but missary loves company. It's comforting to know I'm not alone and truly depressing to know there's not cure. In all my years I have found that the best relief is WATER and lots of it, NOTHING else until the urgentcy has passed. I usually give it a long time to make sure it's better and then when I let it go it starts again, granted it's sometimes worse then others but it comes and goes.
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Post by omaklackey on Oct 31, 2011 21:26:42 GMT -5
Yes, there isn't a cure but there are several very effective treatments. Get a doctor to diagnose you ASAP and you can start on those treatments. I had gotten so bad before my diagnosis that I was up every hour all night long. I usually had to go four times in a hour and a half movie. You can look at my IC thread for some of the treatments. There are antihistamine H2 blockers (I use vistarel) that I take at night to help sleep, I take Hyophen four times a day and I do bladder instillation's myself but you can also have that done by a professional if you'd rather. They are the most effective treatment (see the IC thread for the information on instills or PM me, and I can explain) but the combination of all them is helping SOOOOOOOOOO much! BUT you won't be able to get any of this help if you can't get in to a urologist and get the IC diagnosed. So, please, its worth it!
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Post by tarabobara17 on Nov 1, 2011 10:10:15 GMT -5
This explains soooo many of my health problems!!! i am not getting good sleep because a wake 1-3 times a night to go potty. my gyn is good, but he seems to not care about this. I guess i need to talk to my gp, shes great. i got tested for every possible infection down there. nothing. everythings just right, but they arent doing anything else. i guess they dont understand what its like to have to cross you legs in an elevator, leave class 2 times, wake up all night or not watch a whole movie. so i'll call the gp and get a move on today. this is just driving me crazy.
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Post by tarabobara17 on Nov 1, 2011 10:12:12 GMT -5
I just went to a rheumatologist who said i NEED to figure out how to get good sleep. she diagnosed me with fibromyalgia because i hurt all the time. my joints and bones hurt after using lupron. i think i have a different problem. maybe if i have something to prove that it's pain and having to potty all the time she will look deeper
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erna
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Post by erna on Nov 1, 2011 19:33:42 GMT -5
Yes, there isn't a cure but there are several very effective treatments. Get a doctor to diagnose you ASAP and you can start on those treatments. I had gotten so bad before my diagnosis that I was up every hour all night long. I usually had to go four times in a hour and a half movie. You can look at my IC thread for some of the treatments. There are antihistamine H2 blockers (I use vistarel) that I take at night to help sleep, I take Hyophen four times a day and I do bladder instillation's myself but you can also have that done by a professional if you'd rather. They are the most effective treatment (see the IC thread for the information on instills or PM me, and I can explain) but the combination of all them is helping SOOOOOOOOOO much! BUT you won't be able to get any of this help if you can't get in to a urologist and get the IC diagnosed. So, please, its worth it! Thanx for all the info, I plan to talk to my specialist at my post op appointment about the possibility of having IC and if he can't help me if he can recommend me to someone who can. Here in Manitoba, you have to recommended to a specialist to see them or you don't get in, period. I'll keep you posted.
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Post by omaklackey on Nov 1, 2011 23:45:04 GMT -5
www.ic-network.com/ This is a great resource for further information and may also help you with how to get a referral. I believe they have lists of Canadian urologists as well?
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Post by hibiscus on Dec 30, 2011 17:16:33 GMT -5
Just thought I'd better let you know... Post op had major peeing problems, assumed given all the chatter that I had developed IC.
But nope. It turns out that during surgery for the endo, and endometriomas and adhesions galore, my perfectly funtioning bladder has actually dropped. So not IC, and not curable by diet at all.
A prolapsed bladder after months of mayhem in the peeing department. It is not unheard of for us women who have had major surgery for endo to find themselves with a bladder that was once sitting quite comfortably able to do its job, now repositioned and objecting to where it landed up. One symptom is the feeling of needing to go wee very often. Because the bladder cannot empty itself fully in one trip like it did before.
If you find yourself feeling less discomfort when lying down, and then an urgent and frequent need to go when sat or stood upright, then it might not be IC but just could be a wonky bladder position because of surgery to remove endo and adhesions, or a hysterectomy or other gynae surgery.
Now I got face up to another surgery to sort out my bladder position. Hopefully nothing as major as the last one.
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Post by Karen on Dec 30, 2011 17:34:01 GMT -5
Uh, oh! How did they diagnose that? Imagining? I'm sorry you're dealing with that, hope surgery is a suitable fix!
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Post by JC on Dec 30, 2011 18:53:45 GMT -5
Oh no! That's terrible! I hope the surgery isn't too bad!
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Post by omaklackey on Dec 30, 2011 19:06:46 GMT -5
I have a prolapsed bladder as well. Its defininetly not comfortable but it doesn't cause the need to wee all the time feeling. IC however does so be careful to leave that option open.
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Post by 1234 on Jun 25, 2012 14:37:43 GMT -5
just wanted to check other folks' opinions on this.
I've often had bladder problems--need to pee all the time, trouble peeing, bladder pain/burning particularly on ovulation and my cycle, though sometimes it's hard to tell if it's the uterus or the bladder that is paining and burning...
But last night I was at this wedding and was dancing (I LOVE to dance). and I'm on cycle day 9 or 10, so the ovulation pain is just starting to build,b ut it's not horrible. The dancing hurt, but I still went for it and was gyrating like a good 'un. And during one part I actually peed on myself a little bit, like 3 times in a row. Just a small amount, but so horrible because I couldn't control it. AND I had JUST gone to the bathroom to pee, so it was really unnecessary.
anyway, I was wondering what other ladies who are more expert in bladder issues put all this down to. The painful bladder/peeing all the time/difficulty peeing I can deal with, but peeing myself is not so great!
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