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??

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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

Capture

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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, There is another discussion with the same name where your question will receive more visibility and you can meet other who share your symptoms and learn what may help them. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion:

> Groups > Autoimmune Diseases > Interstitial Cystitis – I would like to connect with others
https://connect.mayoclinic.org/discussion/i-ve-been-told-that-interstitial-cystitis-is-an-autoimmune-disease-are-there/

While we wait, 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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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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