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.

@kanaazpereira

Hello @suzettemh,

Welcome to Connect; we’re glad you joined us in this discussion. @susierq111 @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem, have posted about interstitial cystitis (IC) in previous discussions, and I hope that they will return to share their experiences.

I’d also encourage you to read this information on interstitial cystitis from Mayo Clinic: http://mayocl.in/1v8Vak4.

@suzettemh, have you altered your diet or thought about ways you could change it? Do you have any specific questions about IC, or maybe insights to share with Connect members?

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I drink milk, water and a very occasional diet root beer with my IC. Did your dr. Tell you about the pill Prelief. Which can be purchased at Walmart and occasionally I take them so I can eat something not on the IC diet, but that is rare I do that. I do best following the IC diet.

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@missyb57

Ive had IC for 12 years I take Elmiron 3 times a,day & it has,truly helped me with it. It is VERY expensive like about $700 a month but since it is the obly drug for IC my insurance covers it i just have my copay. I did have bladder instills for over 2 years when first diagnosed & they themselves were horrifically painful. They used a chemical called DMSO in tgrm & it was like setting my bladder on fire. What actually seemed to help were the bladder distensions when they would go in & look inside my bladder & somehow tgey blow it up or full it up to & I would actually get a couple pain free months afterwards Good luck with your pain & your treatment

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DMSO is one type of medication. If your bladder is sensitive to that typeb of installation, they can try different variations to see what you can handle.
These days, a bladder cocktail of lidocaine, sodium bicarbonate, heparin and gentamicin are more common. Some doctors use bupivacaine, triamcinolone along with heparin and gentamicin.
Here's some good info:
https://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/diagnosis-treatment/drc-20354362

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I’m technologically challenged “by choice” so I don’t know if you’ll get this. I don’t know if my email will automatically show up or not. I have had IC for about 35 yrs have had different instillations and hydrodistentions. It is hard for people to understand that you aren’t feeling well because a lot of the time we don’t look sick. As you have probably gathered I’m new at this. Please contact me

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@51irishlass

I’m technologically challenged “by choice” so I don’t know if you’ll get this. I don’t know if my email will automatically show up or not. I have had IC for about 35 yrs have had different instillations and hydrodistentions. It is hard for people to understand that you aren’t feeling well because a lot of the time we don’t look sick. As you have probably gathered I’m new at this. Please contact me

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Hello @51irishlass — welcome to Connect. I'm glad you found us. Connect is a good, safe place to share your health concerns and learn what others with similar health problems are doing for treatments. I'm tagging our moderator Kanaaz @kanaazpereira to have her delete your email address to protect your privacy. The way Connect works is that you will automatically get an email notification sent to you if anyone makes a post to a discussion you have chosen to Follow. You follow a discussion by clicking on the +Follow at the top of the screen in the discussion description.

@susierq111 @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem, have posted about interstitial cystitis (IC) in previous discussions, and I hope that they will return to share their experiences.

I’d also encourage you to read this information on interstitial cystitis from Mayo Clinic: http://mayocl.in/1v8Vak4.

@51irishlass have you altered your diet or thought about ways you could change it? Do you have any specific questions about IC, or maybe insights to share with Connect members?

John

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@51irishlass

I’m technologically challenged “by choice” so I don’t know if you’ll get this. I don’t know if my email will automatically show up or not. I have had IC for about 35 yrs have had different instillations and hydrodistentions. It is hard for people to understand that you aren’t feeling well because a lot of the time we don’t look sick. As you have probably gathered I’m new at this. Please contact me

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If you could delete me from the thread. I have had resolution to my symptoms, turns out my symptoms were due to a failed bladder sling and since taking my sling out I am now symptom free. thank you

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Hello @jeananderson2014, I'm glad you are now symptom free…great news. If you no longer want to receive email notifications for this discussion, just click the Unsubscribe from this thread at the bottom of the email notification you receive for this post. Alternatively, you can scroll to the top of the discussion and click the +Following link (notice it will change to +Follow when you click on it).
John

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@51irishlass

I’m technologically challenged “by choice” so I don’t know if you’ll get this. I don’t know if my email will automatically show up or not. I have had IC for about 35 yrs have had different instillations and hydrodistentions. It is hard for people to understand that you aren’t feeling well because a lot of the time we don’t look sick. As you have probably gathered I’m new at this. Please contact me

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Hi @51irishlass
I have removed your personal email address from your message above. As @johnbishop mentioned, this is to protect privacy. We don't want you getting unwanted spam. By participating in this discussion you will receive an email notification each time a new message has been posted and be able to connect with others talking about interstitial cystitis.

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@kanaazpereira

Hello @suzettemh,

Welcome to Connect; we’re glad you joined us in this discussion. @susierq111 @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem, have posted about interstitial cystitis (IC) in previous discussions, and I hope that they will return to share their experiences.

I’d also encourage you to read this information on interstitial cystitis from Mayo Clinic: http://mayocl.in/1v8Vak4.

@suzettemh, have you altered your diet or thought about ways you could change it? Do you have any specific questions about IC, or maybe insights to share with Connect members?

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My IC is severe, tried everything only Oxycodone helps. Just found out my pain Dr of 7yrs is retiring and need recommendations in New Jersey thanks!

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@51irishlass

I’m technologically challenged “by choice” so I don’t know if you’ll get this. I don’t know if my email will automatically show up or not. I have had IC for about 35 yrs have had different instillations and hydrodistentions. It is hard for people to understand that you aren’t feeling well because a lot of the time we don’t look sick. As you have probably gathered I’m new at this. Please contact me

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I’m sorry you have suffered so long. I just started to develop IC around Thanksgiving and have been in extreme pain since. No flares…just constant and cannot imagine living further like this. Do you have flares? If so , how long do they last? Any suggestions for relief? I’ve been doing bladder installations with minimal relief.

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@mlcheyne

Is there anyone on here who has interstitial cystitis? Was your onset sudden and how is it possible to live your life every day with such an awful pain? Does anything help?

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Hello @mlcheyne, Are you able to share a little more about how you have been affected by Interstitial Cystitis? Have you found anything that gives you some relief?

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Is there anyone on here who has interstitial cystitis? Was your onset sudden and how is it possible to live your life every day with such an awful pain? Does anything help?

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Hi @micheyne you may have noticed I moved your post to this existing discussion on interstitial cystitis so that you can connect with others who have similar experiences. Simply click VIEW & REPLY in your email notification to find your post.

I'd like to tag fellow Connect members @bladderhelp and @51irishlass as they have mentioned this in the past and may be able to offer you support.

Hw long ago did your onset of interstitial cystitis occur? How are your symptoms?

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