Why is Interstitial Cystitis so commo...
dawn

Waveland, MS

#124 Mar 30, 2011
i have had ic for about 7 years now have not been completely out of apin in that 7 years and it is starting to weigh on me my dr wont prescribe anything stronger than ultracet and im wondering how and if i should find another dr?
Penny

Conway, AR

#125 May 2, 2011
Maria wrote:
Yes I cry all the time because my life has been ruined for 10 whole years. I cry cause I'm 27 can rarely leave my apartment, can't work, can't have sex with my husband, and worst of all, I can't live! I feel completely hopeless and if the world exploded tomorrow I would be happy because I can't live like this anymore!!!!!!
<quoted text>
Sweetie, Have you found the IC Network? It's a tremendous source of information on IC. It also gives you guidelines on your diet and how it could be effecting your IC symptoms. I have been on Cystoprotek. I took it for 3 years and got 100% better and even began drinking coffee again and quit taking the Cystoprotek for a couple of years and felt totally well. I'm back on the Cystoprotek because I indulged myself too much into the world of acidic foods and coffee which made me flare a little bit again. Cystoprotek is formulated by doctors and is something you can take the rest of your life to help heal the bladder. It doesn't immediately stop the pain, but begins the healing. It may take a few weeks to see results, but with a strict diet(found on the IC Network website) and cystoprotek you should start seeing better days.
I have also seen where some with IC take aloe vera. There is a specific website called IC Aloe Vera. You may give it a try too. I'm sorry you don't feel well and I totally know how miserable it can be. Get on the IC Network and see if you can't find some information to help you. I know it helped me.
Marie

Atco, NJ

#126 Jun 3, 2011
D-Mannose is a relief for IC!! For quick fix relief (but not used long term) try 1/2 tsp of baking soda and water in 8oz glass. Learn about acidic vs. aklalinity balance diet...there are test strips you can buy to test your urine to see if you are balanced! Internet provides list of foods that will surprise you that will help balance acidity levels in your body/urine to ease discomfort or pain. For ALL conditions its important to eliminate caffiene (foods and drinks), processed (meats) foods, "white" -- flour and sugar foods, sugar substitutes especially in "sugar free" products - all garbage! Drink water, water, water!! ALSO note that physical therapy a/k/a stretching exercises to strengthen the core/hip muscles will also provide relief!! It is important to do them for stability, strength, and balance for the rest of your life! Its a proper healthy lifestyle! In many cases, as we age our muscles, joints, etc. weaken especially after one or more pregnancies. Regardless, check into "pelvic floor dysfunction" to see if this fits your condition or at the very least build strength will provide relief to what seems like UTI symptoms when in actuality you may be suffering weakness. Check into yoga and pilates that focus on the core area! Don't listen to websites who are trying to sell you something...listen to "real people" who share their own experiences, investigate whether it might work for you and discuss with your doctor. Good luck everyone.
john

Houston, TX

#127 Jun 13, 2011
I have had interstitial cystitis in the bladder for 7 months now and its very painful im convinced that this is an infection that they have not figured out how to find but im praying that a cure will eventually be found cuz this is a living nightmare and my symptoms and pain began 2 or 3 hours after i recieved unprotected oral sex from a prostitute 7 months ago, i tested negative for all std's and negative for urinary bacteria and semen exams as well but some how bad bacteria or infection from her mouth made its way up my bladder and now the pressure and pain in my bladder wont go away and it flares up real bad whenever cold fronts or high pressure weather is in my area and ive been on elmiron for 2 weeks now with no improvement but i do recommend applying an ice pack directly to ur pelvic area cuz it seems to help out a great deal with me and reduces the throbbing and swelling and it helps me go to sleep at night.
john

Houston, TX

#128 Jun 13, 2011
Hi penny u said u were cured by cystoprotek, did u take it in conjunction with dr prescribed medicine for those results or did u take the cystoprotek alone with nothing else?????????
Penny wrote:
<quoted text>
Sweetie, Have you found the IC Network? It's a tremendous source of information on IC. It also gives you guidelines on your diet and how it could be effecting your IC symptoms. I have been on Cystoprotek. I took it for 3 years and got 100% better and even began drinking coffee again and quit taking the Cystoprotek for a couple of years and felt totally well. I'm back on the Cystoprotek because I indulged myself too much into the world of acidic foods and coffee which made me flare a little bit again. Cystoprotek is formulated by doctors and is something you can take the rest of your life to help heal the bladder. It doesn't immediately stop the pain, but begins the healing. It may take a few weeks to see results, but with a strict diet(found on the IC Network website) and cystoprotek you should start seeing better days.
I have also seen where some with IC take aloe vera. There is a specific website called IC Aloe Vera. You may give it a try too. I'm sorry you don't feel well and I totally know how miserable it can be. Get on the IC Network and see if you can't find some information to help you. I know it helped me.
valerie bellefleur

Gravelbourg, Canada

#129 Jul 4, 2011
Jan wrote:
i have a UTI now and no bacteria grew in my urine. Does this mean I might have IC? I read of some cures on the net. Has anyone tried these at all. D Mannotol was one
I do not think there is a connection between UITs and IC. I have taken Elvail for 28 years and my bladder is pretty well normal, except when I get a UTI and then it sets off a flare. I get remissions of weeks with my IC now. A bladder infection is just that - infection but IC is when the body is attacking the bladder and the consenses is that it does not involve infections. If anyone would like to join my IC group on FB please email me at [email protected]
giraffett

Indianapolis, IN

#130 Jul 12, 2011
I have IC too and I am not sure what the best thing to do for pain when you have to work, but when I am home and having pain I find that a nice cloth heating pad (the kind with rice and sometimes tea inside that you heat in the microwave) applied to the area while resting and drinking a full glass of water helps. I also sometimes take cystex which doesn't have any side effects for me unlike pyridium which makes me nauseous and often gives me a headache. But cystex does have some antibacterial components (even though it is OTC) so I should probably be asking a doctor about this.
giraffett

Indianapolis, IN

#131 Jul 12, 2011
Maybe IC and UTIs are not related but does anyone else besides me experience this: a negative urine result (no infection according to a doctor), but if I take an antibiotic anyway it really helps with the pain!?
Louise

Wrexham, UK

#132 Jul 22, 2011
LADIES PLEASE READ THIS!!!!!!!!!!
I commented on this site in may, having had re-occuring cystitis for 3 months. Its now july and after having it constantly for 5 months ive finally found out what was causing it. I had a swab taken by my doctor and had the results back yesterday and I have CHLAMYDIA!!!

I had no idea that one of the symptoms for chlamydia was cystitis, I thought there were no symptoms at all, luckily for me I did get cystitis other wise it could have been left untreated for years possibly. I know this could not be the case for some of you girls but please get yourselves checked out for your own peace of mind, chlamydia was the last thing on my mind I never thought this would be the cause of my ongoing attacks of cystitis, Ive been with my boyfriend for 9 months and he told me he'd been tested right before we got together, turns out thats untrue and we both have it. Im not happy that ive only just found out, Ive been in and out of the doctors and hospital for months and it didnt cross their mind to give me a swab. I also had urine samples sent off and they told me that no bugs or bacteria where found, they didnt bother to check for anything else! I was baffled because The anti-biotics that where given to me would only work for a few days and then my cystitis would come back, I was drinking litre after litre of cranberry juice, washing before and after sex and nothing would help. now I know why.
Please ask to get tested ladies, Its worth it in the long run! you never think its going to happen to you, I never thought it would happen to me, im not the sort of girl to sleep around, but sometimes your just unlucky.

heres a website which may help, It has some of the symptoms I experienced including cystitis. Hope this has helped some of you, and encouraged you to get tested. Louise x

http://www.channel4embarrassingillnesses.com/ ...
A_ofMelb

Australia

#133 Aug 4, 2011
Louise, you are lucky. I was tested for Chlamydia three times, although I am not sexually active, all negative. I only wish my IC could be an infection because then it would be curable.
I have tried everything and I am still in pain 24/7. I want to die.
Pete

Allentown, PA

#134 Aug 21, 2011
I'm 25 and I've lived with this awful condition for the past 3 years or so, and it's absolutely destroyed my quality of life. I used to love going out with friends and having a good social life, but now it feels like I can't do anything and I'm sorry, but I f*cking hate the way I feel and it's driving me to depression and sometimes suicidal thoughts when I have particularly bad flares where I have to use the bathroom every 5 minutes.

It started out with the frequency and sudden urges but has since progressed to the point where I'm just in constant pain in the perineum area all the time unless I'm sitting down for quite some while.

I was diagnosed with a bladder/prostate infection and took enough antibiotics last year to kill something, but none of it worked, and then I tried Oxybutynin which was an absolute retention-ridden nightmare when I tried it.

The worst part about all this is that I find it embarrassing to tell people, so none of my co-workers know and neither do my friends, except for maybe one. So when I say I can't go hang out, it really, really hurts me. I want to cry whenever I have to tell people no because I have this stupid disease and there's supposedly no cure and I'm stuck like this. It's absolutely destroyed my life.

Another thing that irritates me is that there's very few IC resources geared toward men, because I think some symptoms can be a bit different for women, so it only makes me feel more alone in all this =/

I'm tired of the burning pain and frequency. The best I can ever manage to not have to pee is 2 hours, though it's usually every hour or half-hour.

Even when I don't have to really go, the burning feeling always culminates in me having to go.

And sometimes my body lies and I'll get hit with an extreme urge (usually when driving) and have to stop somewhere, and then when I get to the bathroom, the urge subsides and I don't have to pee as much as I thought I did.

It screws with your mind too, makes you think so low of yourself and always fearful an worst of all, ALWAYS thinking about having to go!! It seriously dominates every thought I have anymore.

Even watching TV or movies, I'm constantly thinking about the next time I have to go the bathroom because how can I not? I'm going all the goddamn time.

It's just completely destroyed my life, and I need help. The best my urologist could do since I don't have insurance was to suggest TENS, which is expensive and even then, it only works for a handful of IC patients. Plus I've heard horror stories where one woman's implanted device was leaking battery acid inside her.

This thing is just so debilitating.=/ Sorry for the huge rant. It just really hurts me in every way imaginable.

I've generally been a shy guy my whole life, but if I could get rid of this disease somehow? I'd be talking to everyone and hugging everyone and I'd be the most social person anyone would ever see.

I hope it happens one day, because I'm so sick of living like this. I've had such huge hopes and dreams, and right now this is destroying them all =(

I just want my life back.
Lee

Staunton, VA

#136 Sep 21, 2011
Ashley wrote:
Well I have been diagnosis with ic for about 6 months after much testing and a surgery. I am on tons of pain meds and they don't seem to work. I just found out I am pregnant and now I can't take anything. I am in a lot of pain all the time and I am so tired I can't even get off the couch. I have a two year old and my husband is working full time and going to school part time; I feel very overwhelmed. I don't know what to do or what to take. Any thoughts?
There are 3 things that will really help with IC- MSM, Aloe Vera and Slippery Elm. 6-8 grams of MSM daily (start slowly with just 1-2 grams a day as too much initially can cause a headache until your body gets use to it), Use a very concentrated aloe capsule from a good company, do NOT use aloe from GNC, WalMart etc, it is way too diluted and does not work, Take much more than the bottle directions say- take 4-8 soft gel caps 2 or 3 times a day, can reduce once you get the inflammation gone. Slippery Elm- 1/2 teaspoon of powder mixed in juice, soy milk etc 2-3 times a day. You should notice a big difference within 24 hours. Should also help to stay away from Coffee, concentrated citrus and Vitamin C until you get the inflammation under control.I am a Master Herbalist and have worked with many people with IC.
Seattle Girl

Lynnwood, WA

#137 Sep 27, 2011
Seams suspect to me, so common, no known cure, no real testing diagnosis. In fact, IC can not be cultured in a urine sample. My mother, who is now deceased, suffered numerous bladder infections for decades, and it was IC. Just like cancer, doctors don't want to find a cure. And, why is it not testable by urine culture? I believe it is actually what causes prostitus - it's from the bladder that leads to the prostate...and not just limited to the bladder. These crystals can be systematic. DMSO is one of the approved treatments by the FDA...imagine that. DMSO in my mind is the wonder cure for many things. Check out 60 minutes and DMSO. Will a doctor ever tell you about it? No...they are all pharma pimps. No money in DMSO. They will be blackballed if they treat without pharmas
Normast

Utrecht, Netherlands

#138 Oct 23, 2011
Look at http://www.ic-today.com

PS:
Do you know the new natural painkiller Normast (palmitoylethanolamide)?
Maybe this will help for the pain, good results for IC..

http://www.ic-today.com/2011/03/palmitoyletha...
Normast

Utrecht, Netherlands

#139 Oct 23, 2011
Do you know the new natural painkiller Normast (palmitoylethanolamide)?
Maybe this will help for the pain, good results for IC..

http://www.ic-today.com/2011/03/palmitoyletha...
Kristina

United States

#140 Oct 26, 2011
I have been having the constant urge to pee and pelvic pain went to my doctor negative for uti had an ultra sound said I had an ovarian cyst but this was not causing the problem I suspect I have ic been on antibiotic but they are not working all I have been doing is crying I have an appointment with uroligists on wed is there anything else that this could be I am only 24 and I do not want this for the rest of my life please help I feel so alone!
esh123

Evanston, IL

#142 Nov 6, 2011
Lee wrote:
<quoted text>
There are 3 things that will really help with IC- MSM, Aloe Vera and Slippery Elm. 6-8 grams of MSM daily (start slowly with just 1-2 grams a day as too much initially can cause a headache until your body gets use to it), Use a very concentrated aloe capsule from a good company, do NOT use aloe from GNC, WalMart etc, it is way too diluted and does not work, Take much more than the bottle directions say- take 4-8 soft gel caps 2 or 3 times a day, can reduce once you get the inflammation gone. Slippery Elm- 1/2 teaspoon of powder mixed in juice, soy milk etc 2-3 times a day. You should notice a big difference within 24 hours. Should also help to stay away from Coffee, concentrated citrus and Vitamin C until you get the inflammation under control.I am a Master Herbalist and have worked with many people with IC.
But don't you think there are so many different kinds of IC. I read people's stories and some sound like mine, but others don't. I'm happy this worked for you, but i'm worried I won't find a cure.
Sue Australia

Canberra, Australia

#143 Nov 22, 2011
giraffett wrote:
Maybe IC and UTIs are not related but does anyone else besides me experience this: a negative urine result (no infection according to a doctor), but if I take an antibiotic anyway it really helps with the pain!?
Yes - it helps me too - wish I knew why as all tests are negative for bacteria
Jperrygirl

Massillon, OH

#145 Nov 25, 2011
I took advice from 2 different posts here since being diagnosed 2 years ago. Next month I am having surgery again, if this doesn't work, then the bladder is being removed. If you value your health, contact an ic specialist or any dr instead of someone you can't see that has no degree. Especially if you have Hunner's. Hunners do not respond to mild ic treatment
Judy

Vancouver, WA

#146 Jan 25, 2012
Jan wrote:
<quoted text> Have you ever been tested for endometriosis? And have you ever seen a specialist called a urogynecologist. My nurse practictioner says I have a cystocele and I am going to see one of those on June 21. Maybe since my bladder is out of place, this is why I am having these symptoms. I hope they can help me cause if I have to suffer like this forever, I am going to kill myself. I am not going to live like this for the rest of my life.
Jan, Have you heard of post-menopausal women possibly having a allergic reaction to the hormone progesterone? I have suffered IC for one year now, trying D-Mannose, diet changes, etc. They help but don't cure so far. There is an allergy institute in Austin, TX that helps with a possible hormone allergy. What do you think about that?

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