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What advice can you give for IC sufferers?

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From the lens Coping with Interstitial Cystitis.

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  • bunyip May 24, 2012 @ 6:14 pm | delete
    As a sufferer of interstitial cystitis and overactive bladder for many years I can certainly empathise with anyone who has it. My advice for interstitial cystitis is to go to a naturopath as I did. Natural medications are much safer and cause a lot less side effects than medicines you will get from the doctor or hospital. I found that the naturopath helped me the most as she also gave me advice on what foods and drinks I should avoid and what I should be eating/drinking. This was the best way to keep the IC in check. It will never go away but by watching your diet and trying to keep as stress free as possible you can improve, but it does take time. Best wishes and good luck to everyone who does suffer from this awful health problem.
  • pepermintpatty May 13, 2012 @ 3:51 pm | delete
    ive been in constant pain for 4 years i didnt know what it was. till i finally went to a uro specialist he couldnt even do i dont know whats its called but its when they put the camera up your urthra mine was to inflamed and blocked. so he said my only option at that time was dmso it was a nightmare i went to 5 treatments it made it worst. he wouldnt even give me anything for pain. so i went back to my family doctor who whyle im waiting to see another uro specialist gave me morphine for the pain .. it took a whyle to work cause i was so used to holding my muscles whyle i peed and execting pain. but after a few weeks i finally loosened up and the pain was gone.. i still have to pee like 30 times a day and it hurts alittle sometimes if i drink pop or coffee but the pain is now a 4 when it used to be a 12 out of 10
  • acastano1030 Apr 24, 2012 @ 11:23 am | delete
    I have fibro and IC. It's a pain! It is recommended that we don't eat acidic foods as this will make the condition worse. But, I LOVE oranges and eat several a day. I will have no choice but to give them up :(
  • Martha Nov 21, 2011 @ 6:57 am | delete
    I suffer from IC too and have been for the last 7 years, I think mine started when I had one to many infections, the pain never went away, I have been diagnosed with IC by my urologist.
    I do find it strange however that panadol works for pain, it does nothing for me, it does not touch the pain at all, I take tramal and gives me a lot of relief, I have also been on the morphine patches but they had too many side effects!
    My main symptoms are urgency, pain, pressure, and back pain going into my thighs.
    I cannot wear tight clothing because it just makes the pain worse, also I try not to get constipated because it will also makes my bladder very sore.
  • Phoenix12211 Jun 23, 2011 @ 2:42 pm | delete
    Coffee is one of the number one drinks to avoid. However, I found a company, Tylers Coffee (tylerscoffee.com) that produces an acid-free decaf coffee that is approved by the IC-Network. My girlfriend loves it!
  • Ashlee May 22, 2011 @ 7:49 am | delete
    I have been dealing with the pain from IC for about a year and a half now and I kept going to my family doctor complaining about urinary tract infections for 6 weeks back to back and I was finally sent to a urologist and I had to have a full bladder and then urinate and they filled my bladder with water and they used a scope amd said I had stage two of IC and I was the youngest he ever met with IC (22 at the time). The next visit I was told that he was going to expand my bladder and I would either walk out and feel like a brand new person or I would be in pain for the next 3 days, guess what? The next three days I was in agonizing pain and I couldn't take any vicodine I was prescribed because it was making me scratch my eyes out and tear up my head. I have had two bladder treatment where they put lidocaine inside my bladder and that hurt because they had to dialate my urethra because mine was closed unlike most people's so that did nothing but cause me pain. I was put on three different type of medicine, the first was detrol la, the second was something that made me pee a greenish-blue color, and the last one was vesicare and nothing has worked for me. I stopped going to see the doctor because I lost my job and my insurance and I have been having spurts like today where I wake up throughout the night having to pee and I feel like I have fire coming out of my vagina, or a sharp stabbing type pain up inside my vagina, and I cannot handle the pain anymore so I made an appointment with a different doctor to see what my options are because the doctor I was seeing wants to just keep giving me bladder treatments with lidocaine and that doesn't help me. I stuck with the diet restrictions for the most part but nothing seems to help me. Any advise from anyone would be greatly appreciated. I am 23 now and I never thought in a million years pain like this was possible for anyone, let alone myself.
  • Ashlee May 22, 2011 @ 7:48 am | delete
    I have been dealing with the pain from IC for about a year and a half now and I kept going to my family doctor complaining about urinary tract infections for 6 weeks back to back and I was finally sent to a urologist and I had to have a full bladder and then urinate and they filled my bladder with water and they used a scope amd said I had stage two of IC and I was the youngest he ever met with IC (22 at the time). The next visit I was told that he was going to expand my bladder and I would either walk out and feel like a brand new person or I would be in pain for the next 3 days, guess what? The next three days I was in agonizing pain and I couldn't take any vicodine I was prescribed because it was making me scratch my eyes out and tear up my head. I have had two bladder treatment where they put lidocaine inside my bladder and that hurt because they had to dialate my urethra because mine was closed unlike most people's so that did nothing but cause me pain. I was put on three different type of medicine, the first was detrol la, the second was something that made me pee a greenish-blue color, and the last one was vesicare and nothing has worked for me. I stopped going to see the doctor because I lost my job and my insurance and I have been having spurts like today where I wake up throughout the night having to pee and I feel like I have fire coming out of my vagina, or a sharp stabbing type pain up inside my vagina, and I cannot handle the pain anymore so I made an appointment with a different doctor to see what my options are because the doctor I was seeing wants to just keep giving me bladder treatments with lidocaine and that doesn't help me. I stuck with the diet restrictions for the most part but nothing seems to help me. Any advise from anyone would be greatly appreciated. I am 23 now and I never thought in a million years pain like this was possible for anyone, let alone myself.
  • LookingforLishy Mar 25, 2011 @ 12:52 am | delete
    I also suffer from IC, and just recently wrote a lense about it. I've had 2 interstims placed (about 5 years apart) and have been going through the botox treatments for a little over a year. I've run the gamut of medications, 2 different types of pelvic floor rehabilitation and nothing seems to work...for long. At first, like with you, I started with minor adjustments to my diet, fluid intake, etc... but then the medications just kept progressing. I'm so very frustrated with having to add to my treatment modalities as time goes on. At this point, my Urologist says it's not even a consideration that I'd have a bladder removal surgery, BUT, we never thought I'd be 1 of the very few with TWO interstims! I'm a member of the IC-Network, and at first I was very helped by the members of the site, but eventually I found that I was helping other sufferers and I had to take a break. I've joined the forum again and have found a lot more people suffering the same way I have. Thanks for posting on the subject, I should have searched for IC before I wrote about it, but my take was just a bit different just like every person's IC is different. Great post!
  • bunyip Nov 17, 2010 @ 2:26 pm | delete
    Interesting lens as I also suffer from interstitial cystitis. Found some new information here. Thanks.
  • Interstitial Cystitis Association Aug 13, 2010 @ 4:27 pm | delete
    The latest IC treatment and research information, and great pateint support at www.ichelp.org,www.youtube.com/ichelp, www.twitter.com/ichelp and www.facebook.com/InterstitialCystitisAssociation
  • LuiseH Oct 28, 2009 @ 3:26 pm | delete
    reading this I want to cry, I am in so much pain right now and couldn't understand why I kept getting cyctisis over and over again. i'm on anti-biotics again now and its useless. I going start to my GP to discuss this IC as I'm sure this is my problem, I too sit on the toilet for hours isolated from everyone and everything else going on - the best part - I'm even on holiday right now and its ruining everything for me, i can't even have a cocktail. I feel like I'm going mad!
    This site has given me some immediate ideas that I'm gonna try right now. thankyou ladies, you have been the light at the end of my tunnel today! One symptom I would like someone to acknowledge is that your bum aches - constantly - like a day or 2 into it whihc really sucks.
  • Erica Apr 29, 2009 @ 3:27 am | delete
    Having suffered from ic from my early teens and being told it's all in my head!!!
    I was finally diagnosed late last year (even though i was pretty sure i had ic i was still devastated to be told i have it.)

    Im currently under going having cystistat which has made me a little more comfortable. I have found taking hydroxyzine a wonderful support (makes you a little drowsy at first)
    However i also have the problem of some of the musles in my bladder not releasing properly, leaving urine behind so i am now learning isc which has helped alot!!
    I've learned you really have to have an opened and postive mind and try everything you can.
    And DON'T EVER GIVE UP!! find help, ask for help.....I've finally found a great cosultant which is great and a gp with sympathy is also a gret help!!
    Yes, there are days when i just want to pull my hair out,but i have two wonderful boy's who need me and that helps me get myself out of bed in the morning.
    Best of luck, and remember your not alone.xx
  • ICSarojini Apr 26, 2009 @ 11:18 pm | delete
    From one IC sufferer to another - hope you are feeling okay these days, and I love your website here. Many IC patients find it difficult to get reliable information on their condition from their doctors, and are increasingly relying on the Internet for that. It is great to see an informative, personal site like yours out there. If you like, come visit me at http:// home.earthlink.net/~jen424; we are perpetually under construction as I've had a lot of work in the past year.... but you can see my story there.
  • JaguarJulie Apr 25, 2009 @ 3:26 pm | delete
    Yes, this sounds absolutely dreadful and I can only hope that this is something you will overcome -- sooner rather than later. Thanks for being so brave to create this lens so that it may benefit others! That takes a lot of courage on your part.
  • JesseEvans Feb 19, 2009 @ 11:46 am | delete
    Very useful info,great lens.
    - You have my sympathy and best wishes for continuing treatment.
  • edna1226 Feb 6, 2009 @ 7:27 am | delete
    Understandably unfortunate, is that not as many know about IC because it was just discovered in the '70's. It was believed to be only happening to women who were either peri-menopausal, or menapausal, (or however you spell it) and under a lot of stress. Yes, back then it was thought that it was all in the mind of women who were going through a stressful period in their lives, all because they (doctors) couldn't find anything in their studies. That's because they didn't know what they were looking for. Fortunately, now they do, and more and more studies are coming out about it. And more and more patients are being found in a young as well as older group of women.
  • spirituality Jan 14, 2009 @ 8:10 am | delete
    Uw. Sounds awful. Let us know if it gets better.
  • Jon_Lyles Jan 12, 2009 @ 8:52 pm | delete
    The lens is well done but it's understandable this wouldn't be the most popular topic. I never heard of IC before.

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