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Old 01-03-2006, 07:55 AM   #1  
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Default Anyone have Interstitial Cystitis?

I searched the forum but found no threads about this disease. It is a chronic inflamation of the bladder that leads to pain, frequency and urgency. I have been living with this problem for three years now with varying degress of success with different types of medication. Unfortunately there is no cure and it is something I am slowly learning to live with. Food is greatly restricted as anything with an acid content or caffeine will greatly increase both the pain and the frequency. At my worst I was going 30x's a day and now am at about 15x.s . Exercise is limited to non jarring types such as walking or swimming. Different things will trigger a "Flare" that can involve days and even weeks of unrelenting pain. I was just hoping maybe there was someone else on these boards that deal with the same problem and have found a way to exercise and eat properly to achieve weight loss success. Thanks for reading.
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Old 01-04-2006, 10:21 AM   #2  
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Hi! I do not have IC but my mom does. She has tried many things over the years to improve her condition and found something that really worked for her. She is unable to take the medicine usually prescribed because it caused liver problems for her. She now takes Marshmallow Root which has helped alot. She also stays aways from the foods that hurt her. Here is some info about Marshmallow root. I hope this helps! -

Marshmallow Root:

It is believed that marshmallow root tea provides a soothing coating to the bladder because of the mucilage found in the plant.

Scientific Name: Althaea officinalis
Approved by Commission E: Yes
Description: The medicinal parts of the plant are mallow flowers, leaves, syrups and roots. However, the herbal supplement is made from the dried root and the dried leaves.
Actions & Pharmacology: Marshmallow root relieves local irritation, inhibits mucocilary activity, functions as an anti-inflammatory, good for bladder infections and is an immune stimulant.
General Precautionshere are no general precautions or side effects if the drug is used as per manufactures labeling on required dosages.
Drug Interactions: If other drugs are taken simultaneously the absorption of the other drugs may be delayed.
How Supplied: Marshmallow root can be purchased in capsules, tablets (coated and uncoated), as an extract, as a tea and in powder form.
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Old 01-04-2006, 10:50 AM   #3  
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How old are you? Interstitial Cystitis usually affects older women (50+). However, my daughter who is 25 was dx'd with this 2 years ago. she also underwent a procedure to have her urethra s-t-r-eched which has helped.

Female Urology specialists are hard to come by, even in a large metro area. (the closest to me is Philly)

Interesting about the marshmallow root....who carries that?

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Old 01-04-2006, 05:29 PM   #4  
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I am 44 years old but I know lots of people who are older and lots that are younger. I haven't tried marshmellow root but am currently taking Elmiron and have had the DSMO Instills. Losing weight seems to be difficult on this drug though no connection has even been made between weight gain and Elmiron.
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Old 01-05-2006, 09:18 AM   #5  
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I believe my mom orders the marshmallow root online. Good luck!
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Old 01-17-2006, 05:52 PM   #6  
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I've had iC for over 16 years. Tried the RIMSO and antidepressants, Elmiron (currently on), but it's NOT FUN. I will tell you that I have found about the best thing to keep it fairly under control is through your diet.

The Interstitial Cystitis Association has a list of foods to avoid: and it consists of - Milk/Dairy Products: Avoid - aged cheeses, sour cream, yogurt & chocolate (ugh), Okay to try: white chocolate, non-aged cheeses such as cottage or American, frozen yogurt and milk; Veggies: avoid: fava & lima beans, onions, tofu, soy beans and tomatoes. Okay to try: other vegetables and home grown tomatoes (they tend to be less acidic.); Fruits: avoid: appleas, apricots, avocados, bananas, cantaloupes, citrus fruits, cranberries, grapes, nectarines, peaches, pineapples, plums, pomegranates, rhubarb, straberries and juices made from these fruits. Okay to try: melons (other than cantaloupes) and pears; Carbs & grains: Avoid: rye and sourdough bread. Okay to try - other breads, pasta, potatoes and rice; Meats & Fish: avoid: aged, canned, cured, processed or smoked meats and fish, anchovies, caviar (as if I eat that), chicken livers, corned beef and meats which contain nitrates or nitrites. Okay to try: other poultry, fish and meat. Avoid most nuts, okay to try: almonds cashews and pine nuts. AVOID alcoholic beverages, beer, sodas, coffee, tea, cranberry juice and wine. Okay to try: bottled or spring water, decaffeinated, and acid-free coffee and tea, and some herbal teas. Seasonings: avoid - mayo, spicy food (especially Chinese, Indian, Mexican and Thai), soy sauce, salad dressing and vinegar. Okay to try - garlic and other seasonings. Avoid benzol alcohol, citric acid, monosodium glautamate (MSG), Nutrasweet, saccharine and preservatives. Under Miscellaneous: tobacco, caffeine, diet pills, junk foods, recreational drugs (???), cold & allergy medications containing ephedrine or pseudoephedering and certain vitamins.

I laughed when it said "Although the list of foods to avoid may initially appear daunting, remember that there are still many foods you can enjoy."

I honestly thought my life of eating was over. Giving up caffeine was the worst of all. Now, I don't think much about it.

I will tell you that you will have to experiment over time to see what you tolerate better than other things. Because I can guarantee it isn't worth being up more at night than I do now. It is frustrating many times when traveling, but I just think that there's someone else worse off.

Good Luck - Darlene
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Old 06-28-2006, 01:12 PM   #7  
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Default Ic

I do have interstitial also. I have found that eating less acid diets help. Also drinking baking Soda in my water helps reduce the acid. I is hard to get use to at first, but it does help with the bladder. I myself am on Ditropan tablets and that helps too. Sure does mess up your vision. My IC was in remission for 9 yrs. then came back all of a sudden. Who knows why? I think it is because I have a huge success on Atkins diets. I cut my carbs to 40 carbs a day to loss weight. One Urologist said that makes my urine more acidic. I also was under stress for surgery too. I do believe that stress makes it worse. As with many people they can not find a cure because they do not k now what causes it in every person. Some have problems with different foods, where others donít. There is an association you can join. I donate to it and get paper work form them. I have had IC for many years in the begining I Tried the RIMSO and antidepressants. Guess they helped but who knows. I was in remission for 9 years. Now it's back. God only knows why. I can not figure out what the heck I did different. I do know I drank heavily for these years as well. I do not hardly drink much any more. I do drink but not like that. That was every evening till be and all weekend long. I am 42 now, but I was diagnosed in 1993, I was 29. So you do not have to be old to have this. caffeine does not get to me. Soda's do not get to me. Strawberrys do some times.

ICA can be reached at
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Old 07-01-2006, 11:36 PM   #8  
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Cool I have IC

i was diagnosed a year ago. also diagnosed with adenomyosis (which is endometriosis of the uterus). both caused a lot of pain. i feel my IC is under control and no longer have to take meds for it. i did take elmiron , prelief (which is an otc antacid, but works better than tums, etc. for this kind of pain. they have a website with helpful info about it... i also took amitriptiline (which is an antidepressant, but i think it works to relax the bladder? i'm not sure exactly, but i know it helped). took both for about 6-7 months and stopped to see if things were ok... they were fine. i do notice around my time of month symptoms come back, but adenomyosis flares up and causes a lot of pain in the same area the bladder is...

one major thing i did was cut out caffeine-completely ... i drink "kava" coffee-it is reduced acid coffee, i drink herbal tea or water, and i rarely have pop. when i do in is 7 up, rootbeer, or other pops that don't contain caffeine. that was my biggest trigger. and most of it was the coffee, because i didn't have a lot of pop-but i loved my coffee. boy, was it hard to give up. i tried one day to have a "full" flavored cup of real flavor coffee and i paid for it. now, when i have to have that, i'll make my "fake" coffee as i call it, and then put just a tiny bit of "real" coffee in it. gives me a good enough taste of the real stuff without all the problems..

hope that helps someone out.. i was in the bathroom 60 times a day (not kidding) now am down to about a doz. still prob. more than normal people go, but i drink a ton of liquids, plus i do daycare so i have access to bathroom whenever needed.
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Old 07-13-2006, 10:52 PM   #9  
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Wink IC/Endo

I have IC too. I also have endometriosis. I was diagnosed with endo when I was only 14. Official diagnosis of IC came when I was 18 (im 22.5 now).

I had a really bad case of IC, tried almost every medicine, PT and more. I finally opted for the interstim implant - which is a neurostimulator. best thing i could have done. I went from going 50-60x per day down to now maybe 15-20. Its def. not for everyone.

I see one of the best urologists in the country (im in NC) - he is on the medical board of the ICA, so I have been lucky to have someone on top of all the new treatments. I run a support group - mainly online and through telephone. Its hard getting a good time and place for everyone to meet--especially with those suffering with extreme symptoms. My group is called IC Hope.

I have lots of info on file and more info about the interstim if anyone is interested I can email you my personal story. Feel free to ask questions if you'd like!

Glad to see some other IC'ers out there trying to get active and healthy!!

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Old 08-14-2006, 12:48 AM   #10  
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MY DAUGHTER IS 17 and has this. It is very painful for her. We have tried the pills to take acid out of foods to no avail...
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Old 11-28-2006, 12:05 AM   #11  
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I have IC, and have for years. I also know of several young women, under 40 that have this dx. My Dr. says it is not an "older woman's condition". I am on Elmiron, Elavil, and Atarax, and have experienced relief finally, after many years in pain! I started low carb eating 10/3, and have lost 23 lbs so far, with little effort. The meds haven't made me gain. I also have PCOS, which makes weight loss a challenge.
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Old 11-30-2006, 04:38 AM   #12  
I can do it !!!!
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OMG! So many people have the same thing I do! WOW! I was diagnosed in 1990, in my early 20's... I am now 41 yrs old. At first I did the DMSO injections, back then you stunk like crazy for a few days and would offend people around you, being right out of college and trying to start my life as a career woman it was embarassing, then I did the ELAVIL...which I later found out was habit forming. If heaven forbid my prescription ran out and I didn't have any to take before bed I would freak out....I finally weened myself off that in 1996. I am not a doctor, but my brothers wife is and she explained to me that it's not the best thing....but if it works for anyone on it, then AWESOME...maybe I should actually try it again so I can get some sleep!
The one thing about medicine that bothers me is you read about all the possible side effects and those sometimes scare me.
I am in and out of remission. I think stress plays a HUGE factor.
When I was diagnosed there were not a lot of people to talk to, so I've pretty much been living with it the best I can. I think getting up 5x a night is normal for me, other times it's been every 10 minutes.
The worst is when I first lay down to go to sleep...between the time my head hits the pillow and the time I actually fall to sleep, I bet I go about 10x...every night...and those times it's only a few drops.

Oh my gosh, I'm so happy to read all of your posts and to know there others out there. I had never heard of that root item before I will be checking that out for sure. As well as the website link to the IC site. Now you have me thinking..perhaps I should consult a urologist again. I haven't been to one since 1995 or so.

Also in addition to IC, I am also hypothyroid and on my 40th birthday I hit menopause. Nice combination huh?
Thanks for posting your question...anyone feel free to PM me ANY TIME!!!!!
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Old 07-26-2007, 10:44 PM   #13  
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Last edited by elmuyloco5; 03-26-2008 at 02:18 PM.
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Old 07-27-2007, 01:11 AM   #14  
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*raises hand*

Diagnosed five and a half years ago. I've had a couple sets of instillations in the past, but now everything has stabilized... Elmiron + Reactine + strict IC Diet + Lifestyle + Overactive Optimism is how I control my pain now. I'm very happy to be where I life was a mess five or six years ago because of this illness! And I agree that stress is a HUGE factor.

Hope everyone's having a flare-free day!
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Old 03-07-2017, 03:10 AM   #15  
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Default Since I was 19.. now 29

IVe had IC for 10 years, so bad that if I walked somewhere every block or 2 I would have to stop somewhere to use the bathroom, so embarrassing & hard to keep odor under control. All my friends always noticed that I had to pee lol, my jobs even when I was a chashier having to leave the register every 15-20 min on an 8 hour shift was extremely embarrassing. Any way I haven't really done much to keep it under control until now. I started looking up reasons, remedies , cures if possible ( no hope there ) lol .looked up if gaining weight is something that might happen because of this.
I am now 29 , I work in an office of women and I time myself to go to the bathroom, I try to hold it from when I go i wake up at 6:30 am (first pee lol) - at least 12pm then once or twice more in the after noon depending on the time we get out. (While at work) of course I use the bathroom at home afterwards. Before this I was was going every 2 hours EVERY ONE NOTICED I'm sure they were making fun of me too. Its extremely depressing and annoying. What really made me make a huge change is one day some one at work said something about a smell and I had no idea it was me because it's hard to smell yourself apparently & I was more embarrassed. I leak all the time so now I use tampons it helped me tremendously & no caffeine or acidic foods .. not too much water. I use oxytrol otc but I have a bad allergy to it on my skin will switch to marshmallow root & prelief next week to see if that works.

As of weight ..gain I read it can really make you gain weight, no one wants to go work out or leave their couch/bed on a flare up. Tummy is usually swollen like you're Pregnant... urgency is unreal and pain is well .. painful lol.

Diet.. I'm also trying low carb high fat and protein diet seems to be working if I can hold it 5 hours now.filtered water no alcohol, Sosa, coffee (only on weekends) because I love coffee so much!

I've read sexual & or physical abuse may be a big factor in this, not always ..but for most people. Trauma to the bladder, I was physically abused from my step father from 5yrs old to about 18-19. Kicked, punched,choked,bit.. you name it.

On hygiene I Cary to go wipes, feminine spray or spray deodorant, panty liners, tampons & change of underwear, I change always at mid day JUST INCASE ... now I may be paranoid but better than being embarrassed. I've tried Impressa for bladder leaks but I feel it's too expensive so now I use the big super Tampax , (card board) ouch I know but I read the bigger the better and it works ! Also febreeze I keep with me lmao! Just in case.

This is something I've been so down in the dumps about, & it's the first time I've written about any of this I hope I can help someone here.
Much love guys❤️ & good luck.
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