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Interstitial Cystitis (IC) Message Board
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Old 08-20-2010, 12:27 PM   #1
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Interstitial Cystitis

Does anyone here have interstitial cystitis? I was recently diagnosed, and would like some advice on getting out of pain. I am taking Prelief before eating or drinking anything, yet the pain is unbearable. I can't take it anymore. What am I supposed to do? After they diagnosed the IC they did a laparoscopy just to check for endometriosis, which came back negative. I have constant urges to use the bathroom, and it is very big urges. I also leak urine (or something brown and yellowish that isn't discharge). I don't get it. The urodynamics study actually showed that I do not have a leaky bladder, but the GYN says I don't have discharge, but I have to wear a pad constantly to keep from wetting my underwear. It is an embarrassing problem. Also, what does it mean that I have a small bladder and my muscles contract very tightly after voiding? They just told me it was a problem, but that it wasn't surprising given that I tested positive when they did the potassium sensitivity test. I don't get it. And I just moved to TX before I was able to see a urologist to get help. My GYN was the one who diagnosed the IC. Also, having problems with an infected incision from the laparoscopy, but that is a whole nother topic. Don't have any doctors, nor do I have my Medicaid for TX yet. I have disability, but it is so hard to get Medicaid switched to TX. Thanks!!

 
Old 09-20-2010, 09:18 PM   #2
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Re: Interstitial Cystitis

I am on Medicaid, and found a urologist. We are starting DMSO treatments in a month. In the meantime, I am taking oxybutynin. It isn't helping yet. I need to know how to lessen the pain!! I am tired of it. On top of the pelvic pain, I am getting migraines all of the time. I can't deal with this much longer!!!

 
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Old 11-04-2010, 04:48 PM   #3
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Re: Interstitial Cystitis

I'm so sorry that you have IC! I was diagnosed 2 years ago. A few tips on feeling better is to watch what you eat(the IC diet really helps)! Stay away from acidic foods and drinks! Warm baths help relax the pelvic area and the bladder. A heating pad is a must for IC flares. Put the heating pad on your belly and try to relax. When in a flare or experiencing burning in the bladder, drink a glass of water with a teaspoon of baking soda to calm the bladder down. An over the counter medication called Azo Standard is good for getting that burn under control.

I do rescue instills on myself(the same as your DMSO treatments). I do mine once a week. I hope some of this helps.

Good Luck,
Aleet7

 
Old 11-04-2010, 07:17 PM   #4
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Re: Interstitial Cystitis

Thank you so much for the advice!!! I really appreciate it. I will definietly try the Azo. I have heard good things about it, just haven't had money for it yet. I need to find something that helps. The DMSO isn't touching the pain. Especially when I am on my period. Have been on that for 3 weeks, and it is making the pain so much worse. I am so sick of it.

 
Old 11-04-2010, 09:29 PM   #5
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Re: Interstitial Cystitis

Try and find a someone that treats Pelvic Floor Disorders. Also... the diet is extremely important. No caffeine, tomato products, spices, carbonated drinks. I used to have pressure which drove me NUTS and found that the diet changes and taking Tums helped alot.

 
Old 11-05-2010, 07:16 AM   #6
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Re: Interstitial Cystitis

Thanks! I have been trying to stay with the diet, but it is just so hard. I am taking Prelief before I eat or drink anything though. What kind of doctor treats pelvic floor disorders?? Not exactly sure where to turn. All I know is that the pan is going to drive me crazy. Called the urologist yesterday to ask for something for pain. Absolutely not, was what I heard. He won't prescribe anything for pain, except to those passing stones. Uggh. I need relief.

 
Old 11-05-2010, 05:07 PM   #7
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Re: Interstitial Cystitis

Do a search using the words "pelvic floor disorder and treatment and the area in which you live and you should come up with places/people that do this kind of treatment. Most that treat PFD are physical therapist types not M.D.'s. I know how depressing this disease can be. It took about a year of diet and PFD therapy for me to get to a semi normal life again.

Last edited by cathy1; 11-05-2010 at 05:14 PM.

 
Old 11-06-2010, 07:38 AM   #8
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Re: Interstitial Cystitis

I will definietly do that. It is depressing to be in constant pain, and haveno quick relief. And none of my family understand. They think I am being a big baby. I just really want to get out of pain, and quick. Thanks for understandin. I m so sorry that you have been dealt this card as well. No one should have to go throuh this.

 
Old 11-08-2010, 02:13 PM   #9
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Re: Interstitial Cystitis

Quote:
Originally Posted by leapfrog4u View Post
Thanks! I have been trying to stay with the diet, but it is just so hard. I am taking Prelief before I eat or drink anything though. What kind of doctor treats pelvic floor disorders?? Not exactly sure where to turn. All I know is that the pan is going to drive me crazy. Called the urologist yesterday to ask for something for pain. Absolutely not, was what I heard. He won't prescribe anything for pain, except to those passing stones. Uggh. I need relief.
That is terrible! Don't stop at your urologistgo 2 ur primary doc and explain your pain. I feel for anyone that does not have any pain meds to help with the pain! I've talked to several IC patients that try to stretch their meds for the most horrible times! I find myself doing that often. I found out that some antihistimines help with IC pain. When I don't have pain meds I take benadryl and it helps with the pain. It is inhumane to suffer with IC pain and have nothing to deal with the pain. If you are in a lot of pain you can go to an Urgent care clinic. They will test you for an UTI. Sometimes my tests are positive and sometimes they're negative. I never know whether I'm in a flare or have a UTI. Nevertheless...I usually get something to help me through the flare.

Good Luck!

 
Old 11-09-2010, 06:30 AM   #10
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Re: Interstitial Cystitis

Thank you!! I have tried my primary care doc as well. He is more against pain meds then my urologist. He sayshe had an air force buddy who is now in levenworth for a darvcet addiction. He will not even prescribe tramadol, much less anything else. It is killing me, and I don't know what to do. I am mving in February, so I don't think finding another doctor at this time will help much, as I am moving in a few months, nd next month I will be in another state for the whole month. My brain is fried from all the pain. I did buy the azo. I will try the benadryl next, but I have no more money right now, as I have been spending it on meds, and my dad had to borrow some. I am on disability right now, so luckily they are paying my medical bills. Don't know where an urgent care clinic is around here. But I will sure look for one. I am tired of living like this. Does anyone else's get worse on their period?? I havebeen on mine for 4 weeks now, and I swear it is making it so much worse. can't wait to move, so I can find another doctor. This one is super nice, but oh my, what about the pain. No matter how nice he is, if he isn't taking care of the pain, he isn't what I need right now. Thanks guys for helping out with answers!!! I really appreciate it.

 
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Old 11-09-2010, 10:00 AM   #11
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Re: Interstitial Cystitis

My IC gets worse before and during my period! I am so sorry that you are going through this. If your pain gets worse you can go to the ER. I've heard that some patients end up in the ER in severe IC Pain.

I pray that you feel better soon!
Hugs,
Aleet7

 
Old 11-09-2010, 02:46 PM   #12
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Re: Interstitial Cystitis

Thank you so much!!! I'm sorry that you have to suffer as well. I was just told b my psychiatrist that I am not to take ANY prescription pain killers, because she is putting me on Ambien. I don't know what to do, honestly. Getting tired of the pain. Really not liking my options at this point.

Last edited by leapfrog4u; 11-09-2010 at 02:48 PM.

 
Old 11-10-2010, 08:18 AM   #13
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Re: Interstitial Cystitis

Ok...I guess you can't argue with your doc's decision to not allow prescription pain meds. I have a question. Do you take advil for your IC Pain? If you do you might want to to switch to Tylenol. Advil gives some IC patients problems. Hopefully you can get your bladder to calm down by watching your diet, drinking plenty of water to base your acidic bladder down.

I hope you feel better soon!
Aleet7

 
Old 11-11-2010, 05:20 AM   #14
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Re: Interstitial Cystitis

Thanks!! I have been using Tylenol, but I have to have an aspirin a day due to a previous pulmonary embolism. I am trying to drnk more. I am wondering today whether or not I will get into trouble for having morphine, because I went to the ER yesterday for severe vomitting and stff, and they gave me Zofran and Morphine. Was about to b let go when I had a sever reaction to Morphine. My arm urned red and swollen, had hives, and my throat sweeled a little shut. Had Benadryl and an Epi shot. Not so much fun. And I think the Epi messed with my schizophrenia. either that or the Morphine. Either way, I am doing better now, but fearing that I will be in trouble wen she does a drug screen. I can't help that I had to have it though. I felt miserable when I went in yesterday. Couldn't stop crying. It was worse than the pelvic pain, and I thought nothing could get worse than that. They did nothing for the pelvic pain per se, but the Morphine helped with that as well. Today going in for another DMSO. Trying to get into a GI doctor, and GYN. Thanks!!!

 
Old 11-12-2010, 07:22 PM   #15
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Re: Interstitial Cystitis

I'm so sorry that you had a bad reaction to the morphine. If they screen you you'll just have to tell them about the Morphine. I've had it before and it didn't hurt my IC. I hope you get the help that you need. Please feel free to ask any questions.

Good Luck!
Aleet7

 
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