1. < Kidney & Bladder

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 Support Group.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Sep 16, 2019
In reply to @bobsgift "I deal with the curse. My urologist said it's due to my transplanted kidney migrating too..." + (show)
@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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Mentor
John, Volunteer Mentor | @johnbishop | Sep 17, 2019
In reply to @hellobeth "I am trying to find a urologist in Los Angeles that treats IC. Done many treatments..." + (show)
@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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elmironichelp2019 | @elmironichelp2019 | Nov 15, 2019
In reply to @8dzaweek "Yes, Elmiron has helped somewhat, but they raised the price to $680.00 for a months supply...." + (show)
@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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bustrbrwn22 | @bustrbrwn22 | Sep 8, 2020

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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hellobeth | @hellobeth | Sep 9, 2020

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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1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 14, 2020

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

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2 replies
lioness | @lioness | Sep 14, 2020
In reply to @bustrbrwn22 "@hellobeth My Desert Harvest aloe Vera capsules should be coming today. Can’t wait!" + (show)
@bustrbrwn22

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

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@busterbrown I hope they work for you let us know

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Sep 14, 2020
In reply to @bustrbrwn22 "@hellobeth My Desert Harvest aloe Vera capsules should be coming today. Can’t wait!" + (show)
@bustrbrwn22

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

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@bustrbrwn22 Have you seen a urologist for the cystitis? Has your regular doctor given you any advice?

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1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 14, 2020
In reply to @becsbuddy "@bustrbrwn22 Have you seen a urologist for the cystitis? Has your regular doctor given you any..." + (show)
@becsbuddy

@bustrbrwn22 Have you seen a urologist for the cystitis? Has your regular doctor given you any advice?

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The urologist through that bladder distention test done under anesthesia and basically let me know we could try all the different medications (which I did but they all had side effects that weren’t worth it) my insurance would cover but I’d probably have to just live with it. And I do but I do pray for the magic answer. Diet doesn’t seem to have any impact and unfortunately my Desert Harvest aloe Vera pills haven’t come yet. Of course there’s always CBT it cures everything... sorry to whine

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1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 15, 2020
In reply to @bustrbrwn22 "The urologist through that bladder distention test done under anesthesia and basically let me know we..." + (show)
@bustrbrwn22

The urologist through that bladder distention test done under anesthesia and basically let me know we could try all the different medications (which I did but they all had side effects that weren’t worth it) my insurance would cover but I’d probably have to just live with it. And I do but I do pray for the magic answer. Diet doesn’t seem to have any impact and unfortunately my Desert Harvest aloe Vera pills haven’t come yet. Of course there’s always CBT it cures everything... sorry to whine

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Thanks to all who expressed interest in my Desert x(can never remember name) aloe Vera gel caps. They came yesterday so today is my first try. 3 pills 2x day. Please keep your fingers crossed for me. Woke up with sciatica at a big fat 10 today so I feel like a failure since I had to take a pain pill.

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