How Interstitial Cystitis Changed My Life.

This video is basically to show people how such a debilitating disease can drastically change anyones life.

Category:

Nonprofits & Activism

Tags:

• interstitial cystitis
• IC
• awareness
• chronice pain
• pain
• auto immune
• disease
• life health time every has

[ModelDancerVixen3]

I had an ultra sound and it showed I had a mild case of cystitis does that mean I have ic :(

[fayettebeautyqueen08]

@ModelDancerVixen3 You may have IC, but Im not sure how an ultra sound would show that you have it. I had an ultra sounds done before I was even diagnosed with Interstitial Cystitis to rule out other things. But if it's mild, don't be too worried! I was misdiagnosed for five years before hand, but it sounds like they found it early enough! My prayers go out to you!

[sunrhae]

I wanted to let you know that I am also a central IL girl. Grew up in Pana and am currently living in Mattoon. I am 33 and have been living with IC for about 7 or 8 yrs. You made a GREAT video!!! By the way, I also Dr. Lai at Barnes!!! He is a wonderful, amazing doctor! Hope this note finds you well. Take care and stay pain free :)

[fayettebeautyqueen08]

@sunrhae I'm sorry I'm just now getting back to all these comments! Thank you so much for watching and please pass these videos on, it means so much to me! @sunrhae, I actually live in Mattoon now too! I've only met a handful of ladies who have IC around here, but they don't have it as bad as I do. Here's my email, I would love to chit chat and share stories! amy_fulk@hotmail.com

[Syders5000]

I feel so sorry for you!!!!!!!!! You will be in my prayers and hope you help them find a cure!!!!! Thanks this video changed my view of how people live. And FYI I go to school with your 2 sisters but their in the other class!! God Bless You!!!!!!!!

[bonjovigirl2011]

I couldn't pay my bills off and now i wish i went on ssi for it. It been 5 years and it;s not healing no matter what i eat. Was it like that for u? I have little bumps around nerves and the urtheara , bumps in side the ureathra entry way, and swelling . Did u have that too? I heard it cause from bacteria /over produce acide from the body.

[bonjovigirl2011]

Hi i've had ic for 5 years now i was working and stand stand working after getting it at wal mart as a sales assoicte . But i had a head injury in feb 2010 causing nerve damage . I had to quit my job cause i got kick out of a friend's place where i was standing while i healing . My job did want me back until i was completely healed . Now i'm still dealing with sensitive to daliy sounds and my ic isn't doing away like my doctor said before the clinc cut me off of visit .

[drake2365]

Such a great video, God Bless you!

[ESLteacher62]

@Jezebl I'm so sorry about what you're going through. I can totally relate because my story is the same as yours. I've had it for 15 years. I hide my illness too. I hope you're doing okay. Best wishes!

[ESLteacher62]

@kkrablean Great! I would love to hear how you're doing!I have chronic pelvic pain, ugh. I'm glad to hear that you're healing and that the surgery has really helped with your frequency and urgency! That's really amazing! I hope it continues to get better and better for you! I really wish you all the very best! It's nice to hear a success story, that's for sure! If I knew it would help with my pain, I'd seriously consider it, however, I haven't seen many say it's helped with pain yet. Thanks!

[kkrablean]

@ESLteacher62 - I will let you know. What type if pain is your main symptom? Pelvic or internal bladder? So far I am still healing but it has really helped with my frequency and urgency. I will let you know over a longer term how I feel about it and pain. :)

[ESLteacher62]

@ModelDancerVixen3 I'd still get a second opinion if I were you. It's wonderful if you only have a mild case, the point would be to keep it that way and not let your disease progress to a more severe case. You may have a very good chance at kicking this disease's butt if you stay on it and try some of the treatments. Best wishes to you!

[ESLteacher62]

@Starr2982 I can relate to what you're saying Starr. I don't know anyone who has IC like I do, so I have very little support. The only support I get is also from the internet. It's very hard to find a nice, compassionate doctor. I've been through several. They usually get tired of you if keep coming back. It's been a long 15 years. Best wishes! Write back if you feel like chatting with a fellow IC'er

[liliodine]

Just wanted to say God bless you. I hope you're doing better.