How Interstitial Cystitis Changed My Life.

[BeckaLakesideNursery]

Hi I youtubed interstitial Cystitis & saw your story I have it too & was diagnosed in May last year I am going into hospital tomorrow for the second time to have a cystscopy lucky I have the great support of my family cause without them I don't know where I'd be so glad there are more people out there with this delblitating disease Thankyou for sharing your story I now don't feel so alone

[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!

[liliodine]

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

[PennyHeart]

The InterStim is not for IC. It is to help you with frequency. I have IC and I also have the InterStim. The video was beautiful and I wish you would feel better, like me, I hate this disease, but the InterStim will not cure it. there is no cure.

[ESLteacher62]

@PennyHeart - My pain management doctor has been trying to push the InterStim on me for years, but I've not heard enough positive results for the treatment of severe pain with IC to make me want to take any chances with this surgery. I've heard various different reports of the InterStim helping with frequency/urgency, but not so much for pain. Is this what you have found to be true? Your feedback would be appreciated very much! Thank you!

[traffictype]

Almost makes me wish I came from a small town in. Glad the Interstim works for you!

[donnaham369]

Touching...(best wishes to you from a fellow IC sufferer!)

[kkrablean]

This video is great. I actually did the Interstim PNE trial on Monday and am in the process of deciding if I want the permanent one placed.  How did you know that it was the right thing for you? I have cut my voiding in half, but I do not know if it will help with the other IC symptoms (pain etc). I think it is worth it just for less trips to the bathroom, but my husband isn't so sure. How did you know?

[ESLteacher62]

@kkrablean - Please keep me informed of your progress with the InterStim as it relates to your symptoms of pain. My pain management doctor is really pushing for me to have this surgery, however, severe pain is my #1 symptom. I haven't heard many people say that it helps so much with the pain, just the frequency/urgency. Your feedback would be very much appreciated. Wishing you all the very best! I hope you get a great result for you! Please let me know! Thank you so much!

[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]

@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!

[Starr2982]

Rather than being treated like a drug pushing trying to get a supply. Thank you for your proactive effort in IC awareness! I am always looking for research to help out; I believe my younger sister has it too, but she doesn't have the money to see the doctors to get diagnosed. I think we would be good to study to see if it's genetically liked. Good luck and thanks for the video!

[Starr2982]

This video brought tears to my eyes. Today I called in from work because of the pain, but feel guilty and sad because I know the next day I show up they judge be for being a hypochondriac. I've even gotten in trouble for leave abuse. It's hard to live with an invisible disease, and even worse not to know a single person with IC and the only support I have is from the Internet. I am so happy that you are studying to be a urologist! I've searched for a doctor who has IC just for the compassion ra

[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

[chubbz187]

People dont know how this can ruin your life.. it is compared to be as life altering as cancer pain and other forms of chronic pain.. I know I have the worst case of this possible... people kill themselves with this and 30 perecent of people with this condition get divorced from it.

[ESLteacher62]

@chubbz187 I do know how this can affect one's life. I've been inflicted by this disease for 15 years. How have you coped over the years? Have you found anything that has helped you? I have a very severe case as well. There's not many of us out there. It's very hard to find sympathetic doctors. It definitely contributed to my divorce. I hope you are well now. Best wishes!

[liliodine]

There is a procedure they can do. I know the doctors all say there isn't. They want you to take that expensive Elmiron and tell you to suffer. You can have a bladder lift/hyperextension. You can also have botox injections in your bladder and it helps. You have to go through many doctors BEFORE you find the right one, though.

[ESLteacher62]

@liliodine Have you tried botox injections? If so, has this helped you?  You're right, you have to go through many doctors before you find the right one. I've been to MANY. Most end up turning me away saying they've done all they can for me.

[liliodine]

@ESLteacher62 No, a girlfriend of mine did. She gets it done every 4-6 months. She was a nurse for Kaiser in northern California, so she goes up there to have the procedures. She's a nurse, so she knew there was more they could do than what the doctors were telling her. She went to several urologists until she found one in California. I'm not a big fan of Kaiser, but in this case, I have to give them kudos. The botox treatments were following the bladder lift surgery.

[OrisLover]

Where is DACC?

[ModelDancerVixen3]

@fayettebeautyqueen08 but I constantly keeping getting this very sensitive , tingly , intense , throbbing pain down below ( vagina ) like I'm on the verge to orgasm or something it's like this arousal feeling that never goes away and it feels sooo sensitive , ticklish , with this little intense buzzing feeling then with this intense big throb along with it..do you experience this with ic????

[ModelDancerVixen3]

@fayettebeautyqueen08 so I went to the doctors and he signed me up for an ultra sounds, I had to drink 4 cups of water....I had the ultra sound then I had to go empty my stomach and had another ultra sound...then the doctor said that I only have a mild case of cysistis and it should go away by itself, but he still gave me antibiotics...the urgent and unconfortble need to be pee has completely gone away.

[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!

[ModelDancerVixen3]

@fayettebeautyqueen08 I'm 18 years old and I dont constantly need to pee only when my bladder is full and when I go it completely emptys.. Or though I did have a feeling 2 weeks ago that I felt a normal need to pee and when I went only a dribble came out with this uncomfortable intense disgusting feeling afterwards that would last for the whole day or up to 5 hours

[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!

[ESLteacher62]

@fayettebeautyqueen08 I was misdiagnosed for 5 years and even had a complete hysterectomy (because the idiot doctor told me I had endometriosis - which I ended up not having); I was finally diagnosed after many unnecessary and painful tests and treatments. I hope you've found healing from your IC. Mine is still just as bad as it was 15 years ago, Unfortunately.

[ESLteacher62]

@ModelDancerVixen3 I've never heard of ultra sound being a diagnostic tool for diagnosing IC before. I certainly hope you don't have it. Please do your research and go to a urologist who is well versed in IC. Do your homework and find a good doctor. Best of wishes.

[SUNMAYDEN518]

great video from one of my favorite people

[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

[soullysolange]

I am doing so much better since I am on LDN ( low dose Naltrexone)

please read about this drug!!

[MsMandiiB]

I've had IC since I was 15. I'm now 26 and have had to quit school and work. I just found out today that I get my interstim implant next friday! : )

[Jezebl]

It is called the invisible disease because you have to hide the pain every single day. Every. Single. Day. No one sees it because no one else can feel the pain. I've lived with it for 16 years. I am fortunate because meds work for me sometimes but I have to live with the side effects. IC it............

[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!

[ErinEP77]

You are a strong woman! I am so glad you are getting your life back! Thank you for sharing this!

[gumpishelf]

I was just diagnosed after being misdiagnosed three years ago by a urologist. At 21, I am a full ride D1 soccer athlete in college and I just want to say, thank you so much for sharing. This debilitating disease can destroy people's everyday lives. You're so strong!!!! :D

[kdanielleeee13]

First off, I love your video. I am sixteen, and was just diagnosed with IC in March. At the time I was fifteen, so I am right there with you with being young and diagnosed. This is a terrible disease, but it's only given to strong people. Hope your pain is under control (:

[gilbertogomez]

my wife has IC, i will share this video with her.

I love my wife & I want her to feel better

[SUNMAYDEN518]

EXCELLENT VIDEO. I HAVE HAD IC SINCE 1992. LOVE TERESA