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.

@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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@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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@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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@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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I have read Azo works for some people or Prelief. I do not have any pain with my IC thank god but has anyone found relief from urgency or frequency with either Prelief or Azo?

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@bustrbrwn22

I have read Azo works for some people or Prelief. I do not have any pain with my IC thank god but has anyone found relief from urgency or frequency with either Prelief or Azo?

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@bustrbrwn22, I've never used either Prelief or Azo but found a reference that you may find helpful that mentions Prelief.

Complementary and alternative medical therapies for interstitial cystitis: an update from the United States: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708547/

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@hellobeth

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 does the brand have to be Desert Harvest?

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@bustrbrwn22

I have read Azo works for some people or Prelief. I do not have any pain with my IC thank god but has anyone found relief from urgency or frequency with either Prelief or Azo?

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Have you tried Ditropan? It worked some for my mother and my mother-in-law. @joybringer1

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@bustrbrwn22

I have read Azo works for some people or Prelief. I do not have any pain with my IC thank god but has anyone found relief from urgency or frequency with either Prelief or Azo?

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Azo doesn't do much for me. Havent seen the other. Elmiron has helped my flares but i am still very cautious with diet. Although at times i do say the hell with it and loosen the ropes a bit. Moderation for me is better than cutting everything off.

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I tried Azo once and didn’t like how it made me feel. I read about 2 things on the NIH website that I’ll talk to my dr about: hydroxyzine hydrochloride and Linezolid. Has anyone heard about or tried these?

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My mother took Elmiron. She had been through laser surgery to remove lesions in her bladder (20 times!) and I saw an article in our newspaper about Elmiron and sent to her. She asked her urologist about it and he said she could try it. I don't think he knew about it. Anyway, it really helped her.
Everything in moderation including moderation! @joybringer1

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@bustrbrwn22

I tried Azo once and didn’t like how it made me feel. I read about 2 things on the NIH website that I’ll talk to my dr about: hydroxyzine hydrochloride and Linezolid. Has anyone heard about or tried these?

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I sometimes take hydroxyzine HCL 25 mg. when my lichen sclerosis flares causes itching. I was warned it would make me sleepy so I take it right before bedtime. It does help the itching. @joybring1

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