Interstitial Cystitis - I would like to connect with others

Posted by 8dzaweek @8dzaweek, Mar 22, 2016

I.ve been told that Interstitial Cystitis is an autoimmune disease. Are there any discussion groups on this very painful condition??

Interested in more discussions like this? Go to the Kidney & Bladder group.

I am trying to find a urologist in Los Angeles that treats IC. Done many treatments and still have terrible pain.

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Hello, what is your symptoms of IC, because my doctor is trying to figure out if I have it as well

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Urinary frequency, pelvic/bladder pain, stinging bladder, painful urination.If you google Interstitial Cystitis it will give a thorough description of symptoms & treatments. Also the Interstitial Cystitis Association and Jill Osborne from IC Network is very helpful.

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I too have had interstitial Cystitis for over 30 years and suffer is the key word. I took Elmiron for years
I’m now off of it for several reasons. I now get bladder installations and they help. Have you tried that? Would love to chat with you about this.

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@alysebrunella

@8dzaweek, and welcome to Connect. I’m Alyse, and I’m one of the community moderators here. I’m to hear about the pain Interstitial Cystitis has caused you. Have you found treatment options or remedies to help manage the pain?

I’m tagging @lexi and @jeananderson2014 as both of these members have wrote about living with Interstitial Cystitis. I hope you all can connect and share stories, tips and advice.

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I deal with the curse. My urologist said it's due to my transplanted kidney migrating too close to my bladder which causes the inside walls of the bladder to touch causing the irritation. Before I was diagnosed several years ago I assumed I was suffering from chronic UTIs and took a regular prophylactic low dose anti biotic. I get much better results following the IC diet and taking D- mannose. I've not taken anything for pain in the past. I usually just cancel my day and stay home but not everyone can do that. As an interesting side note…the same foods that exacerbate IC symptoms flare up my rosecea!!

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I was given Tofranil for me IC. 75 mg. Still have flare ups but meds helped.

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@bobsgift

I deal with the curse. My urologist said it's due to my transplanted kidney migrating too close to my bladder which causes the inside walls of the bladder to touch causing the irritation. Before I was diagnosed several years ago I assumed I was suffering from chronic UTIs and took a regular prophylactic low dose anti biotic. I get much better results following the IC diet and taking D- mannose. I've not taken anything for pain in the past. I usually just cancel my day and stay home but not everyone can do that. As an interesting side note…the same foods that exacerbate IC symptoms flare up my rosecea!!

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@bobsgift. Sounds like you sorta have things under control except you have to cancel things and stay home. 😑 Can you explain a little more about the IC diet?

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@hellobeth

I am trying to find a urologist in Los Angeles that treats IC. Done many treatments and still have terrible pain.

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@hellobeth have you found a urologist in Los Angeles that treats IC yet?

Here is a site that may help you locate an IC specialist if you have not already found one.
https://www.ic-network.com/find-a-provider/

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@8dzaweek

Yes, Elmiron has helped somewhat, but they raised the price to $680.00 for a months supply. Insurance will cover all but $125.00 until July 1st of this year. I’ve been taking Elmiron for more than 10 years, and now all of the sudden the price has went up 10 fold. I have a urologist that seems to know more than others about IC, but still there is not much support in our area (WV) for IC,
Low doses of Klonipin were also prescribed to relax the bladder, and that works too. But the problem is IC itself. Do one wrong thing (eat the wrong food, drink the wrong tea or too much exercise) and it flairs up within days.

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Be very careful of the elmiron. Recently, they have found a link between the use of elmiron and retina damage. I have taken elmiron for 4 years, and I suffer from its side effects. I find it very difficult, if not impossible, to see in dim light. Google “elmiron lawsuits” for a lot of helpful information. Good luck!

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I thought I saw someone recommend Desert something aloe Vera gel caps for IC. I’ve ordered some and will report on my results.

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I just started Super Strength Aloe Vera and it is helping me immensely. I have done & taken everything else and this is a miracle supplement!

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@hellobeth My Desert Harvest aloe Vera capsules should be coming today. Can’t wait!

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